Long Couple Weeks, EEG and AWESOME News!

It has been an extremely long couple of weeks, but the ending is good so bear through the post as I walk you through it and there will be good stuff at the end.  :-) 

On Nov. 29th we started giving Joshua Carnitor which is a supplement for his Carnitine deficiency that was prescribed by our keto team at Swedish.  On Monday, Dec. 3rd Joshua started not eating all of his meals and started acting a bit "off".  This continued through that week and by the end of that week he was not eating at all and barely drinking.  Due to him not eating and drinking we were not getting his vitamin supplements in him and he was feeling worse and worse every day.  We spent the weekend talking to on-call doctors who didn't know much and so I talked to some of my fellow keto moms and tried to do what they told me, but nothing was really working as we couldn't get him to take anything.  I went out of town on business Monday, Dec. 10th for 3 days and left him in Chip's capable hands.  Chip was in contact with our Swedish team all day Monday and Tuesday and by Tuesday afternoon they told Chip he had to take Joshua to the ER for IV fluids and a suppository.  So, off Chip went to the ER with both kids and my Mom was nice enough to meet them there since I couldn't be there.  I tried to get an earlier flight home, but could not and I had a flight out early the next morning so stayed with my original flight.  Joshua was in the ER for about 5 hours and got a couple rounds of IV fluids and was sent home.  It turns out that Carnitor actually boosts ketones and so his ketones shot up too high and put Joshua into ketosis which made him lethargic, nauseated and not want to eat.  Then when he wasn't eating, his ketones continued to rise and it just continued to get worse and it is hard to break the cycle until you can get their ketones lowered.  His ketones in the hospital were 6.88 which is very high for him. 

The Swedish team worked with us for the next couple days to get his ketones lowered - we reduced the amount of Carnitor he was getting from 3 MLs to 1 ML twice a day and we reduced his ketogenic diet ratio from 3:1 to 1:1.  The 1:1 ratio on the diet only lasted one day (last Thursday, Dec. 13th) and then we took him back up to 2:1 the following day and that is where we have stayed (for now).  It worked as he is now eating, drinking, taking all his vitamin supplements and having more energy.  We will probably slowly work our way back up to 3:1 or somewhere between 2:1 and 3:1 until we find the "sweet" spot.  I thought for sure as soon as we lowered his ratio he would start having seizures again and we would lose all the control we had gained and we did, but just the 1st night.  He had 1 seizure the night we dropped his ratio to 1:1 and he was seizure free the 10 days prior to that (our longest streak).  However, after that 1 night he has not had any further seizures that we can see.  This is great news considering his ratio is lower and he is still not having seizures.  As an aside, during this week Chip's car broke down, our computer broke and I got sick with a cold - it was just a lovely week for us. 

Yesterday (Dec. 19th) we took him into the hospital for a 24 hour EEG to see how much activity he is having, especially the sub-clinical seizures (ones you don't physically see).  I was very anxious as I really wanted this to go well so we could talk about weaning him off more medications.  This is the 1st EEG we have had since starting any of the diets (our last EEG was in April).  We went in yesterday at 12:00 and he was hooked up by about 3:00 and they started recording.  We, of course, can't see the EEG charts while they are recording so we have no idea what they look like while we are there.  He did super getting hooked up and was a real champ - for those of you who don't know it takes about 45 minutes to an hour to get hooked up which is a LONG time for a 4-year old.  Once he is hooked up he is confined to the room as he is connected to all sorts of wires to monitor him.  We did not see any seizures while we were there, not even while he was sleeping which is of course, what I wanted.  He did well over night and him and I hung out most of the morning.  They brought in a Wii to play so he was having fun playing Mario Kart most of the time we were in the hospital.  They came and un-hooked him today about 2:30 and then we headed over to his neurologist's office to get the results of the EEG. 

HERE COMES THE GOOD NEWS!!!!

Joshua only had 2 (count them - 1 and 2) sub-clinical seizures in a 24 hour period!!!!!  This is AMAZING news for him!  He had 0 clinical seizures and only 2 sub-clinical.  For those that don't know or don't remember, Joshua's very 1st EEG in January 2012 showed he was having seizures approx. every 10 seconds!  Every 10 seconds to 2 in 24 hours is nothing short of a miracle!  I couldn't believe it.  I really didn't know what to hope for going in to today's results - I just knew I wanted less sub-clinical activity than before and boy, did I get it.  He had 1 seizure 10 minutes after he fell asleep and then another one at about 4:00 in the morning and that WAS IT!!!  I still can't believe it - not even as I type it.  The ketogenic diet (not any drug) has worked a miracle in my son and I am so lucky to have found it.  I started crying happy tears right there in the lobby as we were talking as it was just so exciting.  So, what does that mean going forward????  It means we are now going to wean him off of another drug - Zarontin!  We start weaning tomorrow morning and I'm so excited about it.  After we get Zarontin weaned then we will talk about his last drug (Zonegran) and see if we will wean straight out or get another EEG and then decide what to do.  And, the awesome thing in all of this is that his ratio is still only at 2:1 so I can't help but wonder that if we went back up to 3:1 then perhaps his sub-clinical activity would be 0?  I REALLY wanted Joshua to go seizure free for Christmas and start getting off some of his drugs and I got my wish!  I'm just so thrilled - I don't need anything else.  Also, Joshua's previous EEGs showed some background slowing and this EEG showed none so we got rid of that too - AWESOME! 

I'm feeling like all of our hard work has paid off and we have PROOF that we are doing the right thing by keeping Joshua on this diet.  It is working when none of the drugs did and it is unbelievable the progress he has made in 7 months since we started diet therapy.  I feel like we are getting back on the right track - he is eating, drinking, smiling again, has more energy and is having hardly any seizures!  Whoo Hoooo!!!!  We have not "seen" a seizure since Dec. 13th so today will be 7 days of clinical seizure freedom if he has none tonight.  It is not the longest streak yet, but hoping this one sticks and we have no more breaks.  It would be awesome to have no seizures in 2013 at all! 

I am so thankful for all the Doose parents who pushed me in the direction of MAD and Keto and for the awesome support of our family and friends through all of this madness.  It feels amazing to be supported as I have talked to many parents whose families are not supportive and that just makes the whole process that much harder.  Chip and I are very lucky to have such amazing families and friends that have helped us through this past year. 

Can't stop crying happy tears tonight and I can't wait to celebrate a wonderful Christmas with my kids. 

All My Love,
Michelle

A few pics of him during his EEG - what a trooper!  He truly is my hero - love my little guy so much!

                                                Getting hooked up - check out all those wires!

                                                        All smiles after he is hooked up!

Measuring his spots on his head for the leads

Sorta smiling as they got the first few on

Not so sure he is still liking it, but hanging in there

All hooked up - lots of wires hanging out!

                                                     His cap is now on and wires covered up

A grumpy moment!  :-)

Getting un-hooked

                                                      Almost done getting un-hooked

Keto and Seizure Freedom?

As I posted a few weeks back, we switched from Modified Atkins Diet (MAD) the Ketogenic Diet (keto) with the help of the team at Swedish on November 1st.  It has been going pretty well as we made the adjustments that the Swedish team suggested.  It took awhile, but we finally found a good way to give him his Zarontin medication and he is taking it with few issues.  We have been trying lots of new recipes - some he likes and some he does not like, but we keep trying.  We also started giving him MCT oil in his diet as they suggested which is going ok, but does cause a few issues.  We have had two days of vomiting since we started keto and the diarrhea/constipation issues have remained and on some days have gotten worse.  The first week on keto he seemed to be more lethargic - a bit more like when we started MAD, but that has gotten better as well.  I think his body just needed time to adjust to the more strict diet and the increased amounts of oil we are giving him now.

I am THRILLED to report that Joshua had his first seizure free day in almost 12 months on Saturday, November 24th.  I couldn't believe it sitting there holding him - I didn't think it could be for real.  I just kept waiting and waiting for one to come and it just never did.  It was an AWESOME feeling!  He had another two seizure free days after that so we had a lot to be thankful for with 3 seizure free days in a row - something we had never seen.  Last Tuesday he did have 4 seizures, but then went seizure free again for the next 4 days until last night when he had 3 seizures.  He did not have any tonight so I am hoping we are on a new streak and that it will last a lot longer - hopefully forever!  We now know that Joshua IS capable of being seizure free and that is GREAT NEWS and I'm holding onto faith, hope and love that Joshua will one day be seizure free for good. 

We had a check-up with the Swedish keto team last Monday and got the results of his blood work.  Most of his blood work came back normal, but his cholesterol was a bit high, his Vitamin D was low, his Carnitine was low and he had a little bit of protein in his urine.  So, in addition to all of his other medications and supplements we are now giving him a Vitamin D supplement and Carnitine supplement.  The Carnitine supplement will also help with his cholesterol so it serves a dual purpose and although it is expensive to purchase, he loves the taste of it and it is the easiest thing we have to give him every day!  The protein in his urine was not worrisome and they said it could be caused by a little bit of dehydration since the blood was drawn in the morning before eating or meds so we are just trying to get more liquids down him.  We will have his blood levels drawn again in 30 days in these areas to see if he has improved with the changes we have made. 

His blood ketone levels were perfect at 4.8 so that was good news to hear.  In addition, his medication level for Zonegran was at a therapeutic level so that was good as well.  For some reason the lab did not process his med level for Zarontin so when we were there we had that one drawn and haven't received the results yet. 

Joshua getting his blood drawn - he even does it with a smile!!!

He is such a trooper - so proud of him!!

When we arrived at Swedish they had his genetic testing kit all ready to go and had verified coverage by our insurance so they sent us over to the lab after our appt. to have his blood drawn for the genetic testing.  The genetic testing looks at the genes associated with childhood epilepsy and glut-1 deficiency, but we won't get the results for about 3 months.  It will be interesting to get the results to see if there is any known cause of all of this and glut-1 deficiency is important to rule out because if he had that, he would be on the diet for a LOT longer, possibly the rest of his life.  Anyway, more to come on that when we get the results in a few months.

The next step for us is an EEG to see what activity Joshua has going on in his brain still, even if we can't see it (called sub-clinical seizures).  On his previous EEGs he was showing sub-clinical activity so we are REALLY interested to see what that looks like now that we have pretty much eliminated the clinical seizures (the ones we can see).  And, the best part is that if his EEG is pretty clear, we will be able to start weaning him off another one of his medications.  That will be thrilling and it would be great to get him off his remaining 2 medications in 2013.  I am really hoping if we can get him off the meds and on diet therapy alone it will clear up some of his cognitive and short-term memory issues that is causing him learning difficulties in school.  I am really excited, but also nervous for the EEG as a lot of our next steps is riding on the outcome of that EEG.  The EEG is scheduled for December 19th/20th as we will be in the hospital over night so they can monitor his brain activity while he is sleeping at night.  This will be Joshua's 4th EEG this year - he is getting to be an expert.

We are feeling HOPEFUL and that we are on a good trajectory!  I really wanted a seizure free day before Christmas and I got one.  I am hoping for a LOT more now and sustained seizure free days over a longer period of time, but I will take what I can get.  There is a lot to be thankful for - we have come a long way.  There were many days when I thought a day without seizures might never come and here it has happened.  Ok - crying now so I have to close.  I wish all the kiddos out there a seizure free night as they ALL deserve it! 



 

Parent/Teacher Conference

On Wednesday of this week we had Joshua's parent/teacher conference with his teacher from his Developmental Preschool.  The awesome part about it was that his teacher offered to do in-home conferences (which we gratefully accepted) so she came to our house for the conference.  Joshua had a great time showing her around, especially his room and all his toys. 

We could tell right away that Joshua is very bonded to his teacher and that they have a very special relationship.  He was even sitting on her lap for part of the conference - so cute.  We really like his teacher a lot and she even allowed us to educate her on the diet a little more (we showed her ketocalculator!). 

The report we got from his teacher was some very positive things, but that she also has some areas of concern.  Regarding the positive, she said Joshua is a changed boy from the end of last school year when he first started attending.  Last year he did not participate in any of the activities, didn't play with the other kids and just sat back and watched the other kids. She said just being there stressed him out last year, but this year is totally different.  She said he comes off the bus happy and ready to learn and that he engages in all of the activities they do every day and has fun with the class.  She said he is now able to sit in circle time and keep with the activity for up to 20 minutes now where at the beginning of the year he couldn't even sit for 5 minutes.  She also said that Joshua has improved in following directions and can follow many 1-step directions (they are still working on 2-step directions).  She said Joshua is a joy to have in class, has an infectious smile and that he loves to dance in circle time!  It made me happy to hear all of these good things about him and that he is enjoying preschool. 

She also mentioned some areas of concern and they are all in the academic area (she has no concerns about him socially -LOL).  She has concerns with his short term memory and his inability to focus for very long.  She said he has difficulty concentrating on a task at hand for very long and following through on it without help from a teacher.  If he thinks that a task is going to be too difficult, he will either say doesn't want to do it or he will just shut down and not try.  She said he also has some fear of movement and fear of trying new things.  He would much rather watch his peers first before trying something new.  She is working on his self esteem to get his confidence up so he will realize he can do things.  She said Joshua does not know any of his letters or numbers and has a hard time retaining things they teach him.  For example, they sit in the same spot at the table every day when they come into class and each spot has the child's name written on it and the child is to find their name and sit down.  She said Joshua has sat in the same spot since the 1st day of school, but he still cannot find his name or his spot to sit.  She said it is as if he has to go through the whole process of trying to figure out where his name is as he walks around and looks at all of them, instead of remembering that he sits in a certain spot.  She said he is well behind his normally developing peers for his age so it is good we have him in Development Preschool so he can get the help he needs. 

Towards the end we started talking about what will happen next year when he is supposed to go to Kindergarten.  She said that we will discuss that and decide as a parent/teacher team what course he will take for Kindergarten, but we have 3 options:  1) He attends general education kindergarten, but he will still have an IEP for any services he will require, 2) He can attend Developmental Kindergarten if we feel he won't be able to make it in general education Kindergarten or 3) We can keep him in Developmental Preschool for 1 more year and hold him back so he as more time to prepare for Kindergarten.  She said her goal is to get him ready for general education Kindergarten by the end of this school year, but that he may not get there and thus we may need to discuss options.  The bottom line I got from the conversation is that if the school year were to end right now, he would not be promoted to general education Kindergarten because it would be too difficult for him.  We talked about all the expectations of general education Kindergarten and how fast everything moves and that they don't get much help (at least not like they do in Developmental Preschool) so he would be pretty lost and overwhelmed and academically would not be on par with his peers.  So, we will have a lot to think about in the Spring when it comes to figuring out what to do for Kindergarten and we will work with him as much as we can in the meantime to get him prepared for it. 

Apparently I was dis-illusioned about how far he was behind academically because I kind of expected her to tell me that she had no concerns and that he would roll onto Kindergarten with no issues.  I guess sometimes living in denial can be good and I kind of enjoyed it, but she snapped me out of it (darn it).  It just fuels my anger at Doose Syndrome even more as it has taken so much from him!  A year ago he was developmentally on target with his peers and then bam!, these damn seizures hit and assault his brain and I'll never know how much damage has been done.  The one good thing is that it has fueled me even more to get these damn seizures eliminated so I can stop the assault on his brain and hope he can recover some of the cognitive function he has lost.  Doose Syndrome and epilepsy is infuriating!!!! 

Overall it was a very good experience - having her here at our house was just great and I have so much respect for her offering in-home conferences to all the families she works with every day.  I feel very lucky that she is Joshua's teacher and I know he is in good hands.  For now, we will continue to work on his skills and wait until the Spring to decide where he will go next year.  The most important thing is that he is a happy kid and he is indeed that so that is something to be thankful for!

Halloween

We survived our 1st Halloween on the ketogenic diet - yahoo!  This is one of the days I have been dreading since we started on diet therapy in May.  I had received several ideas on how to deal with Halloween with a child on the ketogenic diet, but the one we decided to go with was to pay Joshua a quarter for every piece of candy he received and then let him buy a toy with that money.  I wanted to let Joshua still enjoy dressing up and trick-or-treating for Halloween even though he could not eat the candy.  He already has to miss out on so many things, I didn't want him to miss out on this too. 

We also had an appt. with his neurologist this day at 3:00 so it was quite a hectic night as we didn't get home until 5:30 and then we had to feed him and give him his meds before we went out.  Poor Cole was dying to leave so Chip took him out for a little while just the two of them and then we all went out together once Joshua was done eating and taking his meds.  My Mom was nice enough to come to the hospital with us to help us at the appt. and then she came back to the house and handed out candy while we went trick or treating.  We were not out with Joshua for very long because he tired out after a little while, but he had a great time while he was out.  He loved going up to the houses and yelling "trick or treat".  To my amazement he did not try to eat any candy while we were trick-or-treating and when we got home Chip counted out his candy and paid him $22 for all his candy.  He did make a comment that he didn't want money, but wanted to eat his candy, but we distracted him after that and it seemed to be the end of it.  The next day I took all the candy to work to get it out of the house. 

One of the best parts of all of this was that Cole decided getting paid for his candy was a pretty sweet deal and asked if he could also get paid for his candy.  I said sure - better for him than to eat all his candy anyway, especially since he is prone to cavities.  Cole ended up earning $23 after he ate 3 pieces of candy.  I was so impressed that he only wanted to eat 3 pieces and sold the rest.  The day after Halloween we took the boys to Target to spend their money and Cole got a set of Legos he has been wanting and Joshua got a Lightening McQueen toy.  They were both so excited to buy their toys with their money. 

Halloween ended up being a lot easier than I thought it would be and gives me more confidence to deal with Thanksgiving and Christmas coming up soon.  I hope everyone else had a wonderful Halloween!

Here are some pics of the boys.  Joshua is Thomas the Train and Cole is Luigi.

Chip and the boys

My Mom (Nana) w/ the boys

They want to leave and are tired of me taking pictures

Officially on Ketogenic Diet - Love the Swedish Team

Last Monday (10/29) we had our consultation appt. with the Keto team at Swedish Medical Center.  Holy Cow - we love them!  Our appt. ended up being 3 hours and they were not even trying to kick us out after all that time - they were generally interested in every aspect of his care and getting things right. 

We went through all of our history with them and to my surprise they were very impressed with everything we had accomplished, especially since we were mostly on our own.  They must have said this about 5 times - it was nice to hear we were doing something right.  We then talked about exactly what we were currently doing on the diet and as I figured they told us we were already doing Keto (we kind of switched him over right after the keto conference) and so there was no need to admit Joshua to the hospital (yeah!).  But, they felt like we had a LOT of room for improvement in order to get Joshua seizure free.  The most awesome part was how supportive, positive and encouraging they were - they actually were saying things like "seizure freedom" and "medication freedom".  Ahhhhh - music to my ears!!!!  They approach Keto from an entire team approach so we had 3 people in the appt. with us and the team was able to make all of the decisions without consulting someone else.  I was impressed right from the beginning.  They laid out a few changes they wanted us to implement immediately.

1) Change Joshua's med (Zarontin) from a liquid to a pill.  The liquid is full of sugar and so he is getting a LOT of excess carbs so no matter how disciplined we are on the diet he is never going to get fully there.  She wrote the order for the new med and sent to the pharmacy immediately.  She said making this one change alone with increase Joshua's ketones a lot and we should see a difference.

2) Create meals for Joshua that do not include heavy cream to drink or whip cream to eat.  He is starting to refuse to eat these things so he is not getting in all his calories, causing him to be hungry and cheat.  So, they want us to give him meals where the fat is all inclusive of the meals.  So, I thought how are we going to do that?  Well, they said they would send me the recipes!  What?!?!  I couldn't believe it - awesome!

3) Start using MCT oil in his meals.  This oil is tasteless and orderless and so it can go into a lot of meals, but you can't cook with it.  Coconut oil is 50% MCT oil and so switching to MCT oil directly will give us 100%.  We have to give it to him slowly to get him used to it (15g per day at the most in the beginning), but  we will increase over time. 

4) Try a new calcium powder to put into his drinks for his calcium supplement because he won't take the calcium we currently have (we crush pills and put them in his drink).

5) Add 1/4 tsp. salt substitute daily for potassium supplement.

6) Try new multi-vitamin as he has started refusing his sugar free Scooby Doo vitamins.

7) Stop giving him water with Mio flavoring in it as they don't know how many carbs is in this, even though the label says zero (can be hidden carbs).  Also - never use Crystal Light.  Instead, they want us to give him Fruit2O which has no carbs.

8) Change his meal plans from 3 meals and 1 snack per day to 3 meals and 2 snacks so that he eats more often.  They think this will help him with hunger and help to keep him from cheating. 

9) Keep his ratio at 3:1.  Since we are currently having compliance issues with him refusing fat and cheating they think that will only increase if we push the ratio higher so for now we are going to stay at 3:1.  They also think we have a good chance of reducing his seizures just by making the changes noted above and if we get his cheating stopped and that perhaps we won't need to increase it - we will see.

I talked to someone from the Swedish Keto team every day this week either via email or phone or both and their responsiveness has been outstanding!!!  I even got a call from the woman who runs the program Friday evening at 7:30 PM to check on us to see how we were doing on the new plan - I was shocked.  The dietitian sent to me yesterday his new plan with 12 new recipes to try over the weekend - I couldn't believe the amazing support.  So, I went shopping last night and bought everything we needed that we didn't already have for the 12 new recipes.  We spent 2 hours cooking last night so we would be ready for today.  We had some recipes he liked (success - yeah!) and 1 he didn't like it.  The meals are all-in-one meals with no extra cream to drink or eat so that is helping.  He had a rice krispy peanut butter ball for breakfast this morning and LOVED it!  Even Cole was super jealous saying that Joshua got to eat dessert for breakfast - yep!  :-) 

We have been making all the requested changes this week and have been successful in getting his new med down him the last 3 doses and already his urine ketones have gone up!  It is amazing how watching a little stick turn purple can make you so happy.  I was feeling overwhelmed last night with all the shopping and cooking knowing we would be gone all day today and so I had to get everything done at once, but I feel like it was so worth it.  I will be doing more cooking tonight, but it will be so worth if it he turns out to like some of them and has an easier time sticking to the diet. 

The Swedish team also wants to have all his blood work done prior to our next appt. so we will be getting his blood work done around Nov. 14th as our next appt. is on Nov. 26th.  Check out the below list of what they will be checking when they draw his blood (they watch keto very closely!).

Labs to be drawn:  CBC, Ferritin, BHB (blood ketone level), Carnitine, Comprehensive Metabolic Panel, Magnesium, Copper, Phosphorus, Lipid Profile, Vitamin D, Selenium, Zinc, Folate, Vitamin B12, Uric Acid, Urinalysis, and his medication levels for both Zarontin and Zonegran. 

Swedish also talked to us about genetic testing which we have not had done thus far, so they are going to get the required paperwork completed to send us for genetic testing.  They will be testing for Glut-1 deficiency, but some others as well, but I can't remember all of them right now.  Genetic testing always makes me nervous because on one hand it would be nice to know if there was a cause of his epilepsy, but on the other hand, what if it was a gene we passed onto him or one he could give to his kids?  It might be bitter sweet finding out an answer, if we got one at all.  But, we will cross that bridge when we get to it. 

We also talked about his next EEG and they want us to make all the changes we discussed and then have another EEG done so probably some time between now and the end of the year is what we are thinking.  I talked to his neurologist and she is interested in doing another EEG as well so we can see what is going on in there since starting the diet (his last EEG was in April prior to the diet).  She wants to do another 48 hour EEG so we will be back in the hospital for a couple days, but hoping this time we will see a lot of improvement on the EEG. 

We also had an appointment with his neurologist this week and spent almost 2 hours with her.  She is extremely supportive of what we are doing and is learning along with us all the effects of the diet has on everything else.  We are talking about the possibility in the future of starting to wean him off the Zarontin and increase the Zonegran, but we will wait to make that decision until after we see his next medication levels when we get his blood work completed.  We also talked about having Joshua go back to see the neuro psychologist in the next few months to get a new assessment completed and see where Joshua is at cognitively.  He was so out of it when we tried to have the assessment done last time it wasn't really reliable as he would not sit through all of the testing.  I'm curious to see how he would do now since his attention span has improved and he is doing a bit better with learning.

Overall we are feeling very positive that we are working with the right team on the diet and that we have room to improve and therefore, a lot of hope that we can get him seizure free.  He is still having Myclonic seizures every day so we are hoping to knock those out! 

Thank God for the ketogenic diet - I truly believe it is saving Joshua's life!

Moving in the Right Direction

Here are some updates since I last posted.

1) Joshua is completely off Depakote!  Last week he had his very last pill and it felt so great to not give it to him anymore.  Although getting off Depakote has not made him seizure fee like I hoped, it has given him a lot more clarity and removed some of the drug induced "fog" he was walking around in.  We are seeing him do things that he just couldn't do not that long ago.  For instance, he looked at a word the other day, pointed and said "that is an O"!!  That was thrilling for us because he has not known any of his alphabet since about the time he started having seizures.  I can see his wheels starting to turn again, however slow they may be.

2) We have talked to Joshua's neurologist and she is on board with us moving to Keto!  She reminded me to be somewhat realistic in that Joshua may not get total seizure and med freedom.  I responded that I will let her be realistic since that is her job and that I will be optimistic, enthusiastic and I will make it happen!  I like her so much - she has been amazing to us and I am glad she will remain our Dr. even when switching to keto, but she probably thinks I'm a little nuts.  :-)  I want her to use Joshua as an example some day to all the other parents about what can be done to help our kids.  I told her I am determined to get Joshua seizure free and med free and back on track and I won't stop until I do.  I probably am nuts, but I choose HOPE because without it, what else do I have?  It is not good enough for Joshua to have seizures every day - it is just simply NOT GOOD ENOUGH!  I won't settle for anything less than complete seizure freedom and getting my son back from the beast!  Ok - I'm teary eyed now so moving on......................

3) I have finally figured out how to use ketocaluclator.  For those of you that don't know, ketocaclulator is an online program that calculates the keto (or MAD) diet to your child's specific ratio and nutritional needs.  I found this program to be very overwhelming when we first started MAD so I gave up and created my own spreadsheet to help us.  The spreadsheet has been working fine and my dietitian was impressed with what I came up with an how we managed the diet.  However, knowing that we are going to switch to keto and after getting a better tutorial of it at the keto conference I decided we better give it another "whirl".  To my surprise, I find it so much easier to use and it has been a great benefit to us.  We are calculating most of Joshua's meals through the ketocalculator now so that we have all of our list of meals in there and ready to go when we start keto. Our ratio is lower than what it will be on keto, but all we will have to do is adjust the meal to get to the higher ratio they put us on and the new dietitian will help us do that and set our meals up correctly.  Looking forward to starting keto (although I am still nervous about it) - wish we had a start date.

4) Next set of appointments - We go back to see our current dietitian next Friday (October 12th) for his check-up (we will need to get his blood drawn a few days before so we can have his blood work back in time for the appt.).  We then go to Swedish on October 29th for our keto consultation appt. and then we go back to see his neurologist on October 31st (that's right - nothing scarier on Halloween then a visit to your neurologist).  He He.  Just kidding!  Between the keto consultation appt. and neurologist appt. we should know by the end of the month the full plan going forward for starting keto and anything we need to do prior to that.  We are not sure if we will need to get a new EEG done prior to keto so we have a good baseline and we may need to change over one of his meds as he is on a liquid that I am sure has sugar in it.  I am interested in having another EEG to see if it looks better than the last one (that we had in April), especially regarding his subclinical activity (e.g. seizures that he is having, but that we don't see).  I also think it may be a good idea to have a baseline so we can see what affects keto will have on this EEG, but they will need to tell me if we are going to do another one or not. 

I feel good that we are moving in a direction and I'm hopeful that keto will bring us the seizure freedom, yet I have been teary eyed a lot yesterday and today thinking about things and I'm not really sure what the trigger is.  Maybe it is not just one thing, maybe it is just everything.  Like when I look at Joshua and realize what he has lost cognitively and that he is not developmentally where he should be for a 4 and 1/2 year old.  And, when he gets sad and upset when he can't have foods that he wants to and he realizes he is "different" than other kids.  And, when I check on him first thing every morning I have a panic attack the first few seconds until I realize he is breathing because he is at risk for SUDEP (Sudden Unexplained Death in Epilepsy).  And, when I hear any tiny noise or sudden movement from him I go rushing to see if he has had a seizure.  And, if he has any sort of accident and hits his head I instantly think it was a drop seizure and my heart drops out of my chest.  And, sitting with him night after night after night for months and months counting his seizures and feeling like they will never stop.  The nightmares I still have about finding him in his first grand mal seizure and not knowing if he was breathing or not.  All the education, medications, sickness, setbacks, side effects, changing schools, doctor appointments, assessments, EEGs, everything!  I truly had no idea how much our lives would change - the bottom fell out in January and we didn't even know it.  It is hard living with this day in and day out where epilepsy and seizures and diet dominate your every thought and every conversation to the point where you don't even know  how to talk about anything else.  The impact this is having on Cole who doesn't deserve to feel the way he does, but they are his true feelings and we have to take responsibility for that knowing that we have spent so much time on Joshua our other son feels left out.  THAT IS TOUGH!  This is all tough and the parents that live it every day know exactly how it feels.  I am usually very upbeat, positive, determined, fierce, warrior mama, but today and yesterday I'm feeling a bit different.  And, it doesn't make sense because he is doing well, we have a plan and we have HOPE.  So, not sure why I am feeling like this - maybe I'm just tired and over thinking things?  Maybe I just needed to vent a little?  This is hard and we need more awareness and this will drive me to do things to bring more awareness, like becoming a hope mentor.  I need to turn the frustration and sadness into action - enough whining.  Sorry for the long ranting.

Thanks again for all my supportive friends and family who have been on this journey with us this year.  We love you all!

Ketogenic Diet Conference Sponsored by The Charlie Foundation

What an emotional 4 days it was in Chicago at the Ketogenic conference, but it was absolutely amazing!  I got to talk to expert doctors, nurses, and dietitians and get advice about Joshua and hear the most recent research regarding the ketogenic diet for epilepsy which was outstanding and is exactly why I went.  In addition, I got to meet so many wonderful parents of kids with epilepsy, most having Doose syndrome as well.  Nothing is more therapeutic than being around people who really 'get' what it is like living with this nightmare.  I got to pick their brains about all things epilepsy, doose and diet related and their information was invaluable!  I met just incredible people who I will always treasure and hope to remain in contact with them long after our epilepsy journey ends (and I am determined that it will end some day). 

The consensus in talking to the experts and the parents (most of the time I think the parents are the experts) in Chicago was that we should move Joshua from MAD to the Ketogenic diet in order to eliminate Joshua's remaining seizures.  We have been on MAD now for close to 5 months and although Joshua has had an 80% reduction in his seizures, he still has daily myoclonic seizures that we cannot seem to eliminate.  Below are the take-aways from presentations and/or conversations during the conference that stuck with me the most regarding switching diets.

1) "If Joshua has Doose syndrome, you owe it to him to switch to Keto to see if it works"
2) Doose is the one diagnosis where switching from MAD to Keto has resulted in seizure freedom (other non-Doose diagnosis still had a 30% improvement when switching from MAD to Keto)
3) The classic ketogenic diet is the most effective treatment for refractory epilepsy
4) The ketogenic diet is the #1 treatment for Doose Syndrome
5) "Joshua's brain is still seizing every day and until you get it to stop his brain will continue to know how to seize and it won't stop.  You need to train his brain how not to seize and the diet will do that".
6) It is possible for children with intractable epilepsy to become seizure free and med free
7) "The Myoclonic seizures are the hardest to get rid of - Keto is your best chance"
8) The ketogenic diet can cure the brain; medications (if they work) only stop the symptoms
9) 80% of patients will remain seizure free after coming off the ketogenic diet
10 You can start reducing medications after only 1 month of seizure freedom

After the conference, I feel very strongly that we need to switch to the ketogenic diet if we are going to have a chance of stopping Joshua's seizures and getting him off all the medications.  Therefore, I called Swedish yesterday morning and we have a consultation appointment scheduled for October 29th (the soonest we could get in).  This appt. is required before they will start you on keto and after the appt., they will schedule his hospital admission.  We have to be admitted for 4 days to start the diet for medical monitoring and training with the keto team.  We will stay with our neurologist at Mary Bridge as we love her, but we will have our keto team out of Swedish since Mary Bridge hospital does not administer Keto.  I am hoping we can get Joshua started on Keto before year end so we can get his seizures eliminated as soon as possible. 

We are almost done with the Depakote wean - Thursday morning will be last pill of Depakote!!!  We are so excited to have him off Depakote.  He is still on Zonegran and Zarontin, but if we can get him seizure free on Keto we will begin weaning those drugs as well (one at a time of course). 

Joshua started back to preschool (he attends developmental preschool 4 times a week) a few weeks ago and he is doing really well.  His teacher is impressed with how much more energy and more involved and interactive he is this year.  Last year she only saw him for 10 days in June and he was on a lot more drugs and had just started the MAD diet so he was very lethargic and did not participate in much at all.  It is nice to hear he has made some great improvements in the short time we have been on MAD and weaning Depakote.  Although we are still having potty issues and behavior issues, we are greatly improved on where we were a few months ago and that is something to be thankful for.  He can even play Candy Land now and knows how to move his player - this is something new for him and is so exciting!

Seizure count has not been great lately (another reason we want to switch).  I was hoping August would go down, but it actually went up from July.   Below is a re-cap of the last few months for the trend purposes.  And, although September is not over yet, he is already above the count for July so we can't seem to get back to our lowest point.  I am hoping that Keto will be our answer.

Keep in mind these are approximate numbers as we do not catch all of his seizures.
April - 700+
May - 375
June - 332
July - 137
August - 239

It feels good to have a plan and to know we will be doing everything we can to make Joshua better.  We are going to get Joshua seizure free, med free and developmentally back on target if it is the last thing we do!

Crazy Week

Wow!  What a long week and I'm sure it was much worse for Chip than for me since he was home with the boys. 

Monday set the tone for the week and not in a good way.  I woke up to find Joshua in the kitchen with his medicines sprawled out in front of him and his liquid medicine spilled all over the counter.  When I asked him what he did he said he filled up the little medicine cup dispenser with the medicine and drank it.  I put water in the cup and measured it out and if he drank it all he would have had 20 MLs which is 4 times the dose he is supposed to have!!!  Additionally, one of his Depakote tablets had been broken into, but I couldn't tell if he had taken any of it and all 6 of his vitamins for the rest of the week were gone (he ate them).  We of course panicked and called poison control who were AWESOME and we spent most of the morning on the phone with them.  Joshua ended up puking twice that morning and sleeping 1/2 the day away as he was really drowsy and we had to wake him every 30 minutes to ensure we were able to arouse him.  After about 1:00 in the afternoon poison control told us we were past the critical point of time and they thought he was going to be fine.  Luckily he was, but we were a nervous wreck and had to call his neurologist to figure out what to do about his medicines after that (do we give them to him, how much, when, etc.).  It took two days, but we got his meds back on track.  It was REALLY scary!  He has never gotten into his meds before and the pills are in a weekly counter that you have to get into and the liquid has a child proof cap on it - I guess not so child proof after all!  Needless to say, the meds are now in a cupboard that is LOCKED! 

In addition to the meds, Joshua has been getting into food.  When we turn our backs for just a minute, he gets into the cupboard or refrigerator and even once our garbage can.  Yes, that is right - he went into our garbage can and dug out some food and ate it!  He has cheated so much on his diet starting with Sunday at my cousin's house with a banana that he has not been in ketosis all week!  So, we have now moved all the food into one cupboard that we have now locked and we have locks on the refrigerator.  However, he has already figured out the locks on the fridge so today while Chip was in the shower he got into the fridge and ate two yogurts which is more carbs than he can have in a whole day.  He is so far over today there is no way we can recover and give him enough fat to overcome all the carbs.  IT IS SO FRUSTRATING!!!  We literally cannot leave him alone for 1 second or he will get into something so it has become extremely tiresome with no breaks (especially for Chip when he is home with Joshua by himself).  I am really not sure where to go from here because there are no other locks we can put on the fridge. 

So, you may be wondering what kind of seizures we have seen with all this cheating???  The answer is NONE and I'm very perplexed about it!  I don't get it - it makes no sense and goes against everything I have been told by everyone.  I even called his dietitian today and she told me she cannot explain it because usually kids will have breakthrough seizures when they cheat on the diet and that it is very strange that he has not with his large cheats.  So, of course this got me thinking about what this means and do we need to be as strict or is the diet working the way we thought or is it something else?  Are we just lucky?  Are the seizures going to hit in the next few days or weeks?  Of course there are no answers to any of these questions - which is frustrating in itself.  All kids with seizures are different and no cases are alike - argh.  Our dietitian urged us to continue with the diet with the same vigilance as we always have as we don't want to lose the control we have gained and I will, but I still cannot wrap my mind around this.  Don't get me wrong, I am THRILLED he isn't having any seizures as a result, it is just very unusual and does not correspond with anything we have been told and has got me questioning everything.  We are also still weaning Depakote so that even makes it more strange as he is on less meds than before and his diet is not where it should be and we still have not seen any activity.  Feeling very blessed, but confused. 

We have started having other issues as well over the last week or so.  Joshua has starting pooping in his pants, urinating on the floor, getting into EVERYTHING and having serious behavior issues.  This is beyond frustrating to both of us because he knows better about going potty and the urinating appears to be very purposeful.  I talked to our dietitian about it and after hearing about all the cheating she told me that she thinks all of this acting out behavior and toileting issues all stems from the food.  She said it is common for kids to have issues like this because they cannot control their food or anything surrounding their food and so they look for other areas (anything) to control.  So, all of this may be about control and she told me to work on giving him some control in other areas of his life and try giving him choices.  One thing we have struggled with lately is Joshua wants to be in his PJs 24 hours a day.  She suggested we give him a choice about what to wear and if he chooses to wear PJs all day, then so be it.  Her thought was if it gives him some control and helps with the other issues, who cares if he is in his PJs all day - we have bigger fish to fry.  She is right so I think we will try that.  We also talked about whether or not we should take Joshua to a therapist to help with some of the issues we are seeing and she thought it was a good idea and said it is not uncommon for kids on the diet.  She said that so much revolves around food in our society and so he is really grieving the food and acting out in response to our restricting him so much so some therapy may be good for him.  She said that although the diet stops the seizures, it can cause other problems like eating disorder type behaviors (e.g. digging food out of the garbage) and we can try to work with a therapist to help in those areas.  So, if we continue to see issues we may talk to our pediatrician about getting a referral for a therapist, but we are going to see if things improve any over the next few weeks as we finish the wean.  Sigh. 

Seizures remain about the same - still seeing myos every time he falls asleep at night or for naps.  We are 1/2 way through the Depakote wean and we have not seen a reduction in seizures so I'm beginning to think that it is not going to be the miracle I was hoping for.  I will be really glad to get off 1 med and be down to 2, but I was hoping it would reduce his seizures to 0 based on the info that the Depakote interferes w/ the diet.  I will give it some more time, but I just feel in my heart that it is not going to get us there.  So, we will need to decide if we continue on like we have or if we switch to ketogenic diet to try to eliminate the remaining seizures.  I really don't want to switch, but the thought of seizure freedom is just too good not to try.  I am going to the ketogenic conference in Chicago in September and I hope to gain some answers there and maybe even get to talk to a few specialists that will be there speaking.  Dr. Kossoff  (keto guru Dr.) said recently to another Doose Mom that Doose is the one condition where they have seen a difference in switching from MAD to Keto to eliminate seizures.  And, I have had several Moms tell me their stories as well that MAD reduced their seizures, but after a few days on Keto their child's seizures were eliminated - extremely enticing!  Like I said, I hope to gain lots of information that will help make the next informed decision on where we go next.

I hope everyone has a great weekend.  We are hoping for a calmer one, yet somehow I don't think we are going to get it. 

P.S.  Weaning Depakote is awesome!  Joshua is starting to act more like his old self again and has more energy.  You can tell that he is not as drugged up as he used to be and I can only think this will help him as we start school in two weeks.  I can't wait for the day when he will be off ALL drugs and not living life through a "hazy fog".

Down, but not out

I have been trying to post on here for almost a week now and have been so busy every night that I haven't gotten a chance to (until now). 

We have surpassed another milestone - we have been on MAD for over 3 months now (3 month anniversary was last Sunday).  I remember the dietitian telling us that we had to commit to trying it for 3 months and I felt like that was soooo long and well, here we are! 

Camping turned out to be difficult with the diet and we ended up having a lot of struggles with Joshua while we were there.  He had started entering another cycle of not eating a couple days before we left and that continued while we were camping.  He either didn't want to eat or didn't want to eat what we brought for him that he could eat.  He had quite a few meltdowns over food while we were gone and they were tough to deal with.  One night I had to walk away and ended up taking a walk around the campground so Joshua didn't see me break down and cry in front of him.  It is soooo hard to hear him cry for food that he cannot have, but sees other people eating.  Most of the time he does really well, but those were some really tough days for us.  Because he was not eating much, he was very lethargic and had little energy.  He spent most of the time sitting in the bike trailer (we use it as a stroller) as he was too tired to walk.  We took the boys swimming and he only got in the water for a couple minutes and then just sat on the sidelines watching.  It is difficult to watch him sitting on the side and not participating in life and knowing that epilepsy has taken a lot from him.  We had fun camping, but it was also stressful and a lot to deal with so I came home pretty depressed and wondering how in the world I was going to deal with this diet for approx. another two years (it can be very daunting to think about). 

After coming home from camping I was pretty down in the dumps for a few days and feeling sorry for Joshua, Cole, myself and Chip in all we have to deal with regarding epilepsy and this diet.  It doesn't just affect Joshua - it really has an affect on all of us and I realized that I was quickly starting to run out of all the positive energy I have had dealing with all of this since January of this year.  I try really hard to stay positive and look at the bright side of things, but my positive energy tank was nearly depleted by last week and I needed to refill it quickly!  I posted about my feelings on my online Doose Syndrome support group and another mother (Dawn) graciously emailed me privately and told me she would talk to me on the phone if I would like as she was right where I was two years ago.  I jumped at the chance to talk to her so I could commiserate, learn, ask questions, find out how in the world she had made it this long, and how her son was doing.  Dawn and I talked for 90 minutes and as we talked I could just feel the stress coming off my shoulders and I was beginning to relax.  Dawn offered me a lot of great ideas and tips on eating, preparing MAD and keto foods (her son was on both diets), how to deal with holidays, parties and how I might be able to tweak things to get Joshua seizure free.  Dawn was amazing to talk to - I really didn't know how great it would feel to talk to someone who truly understands exactly what it is like being on this diet day to day and all that it entails and just truly how difficult it is.  As I am typing I am starting to tear up as I am recalling our conversation as it just meant SO much to me.  Dawn really made me feel like I could handle Keto if we have to switch from MAD, which is something I am very anxious about.  One of the tips Dawn told me about was making cereal for Joshua (one of his favorite pre-diet meals).  We give him 8g of rice krispies (not much at all) and Keto "milk" (heavy cream diluted with water and liquid splenda).  We tried it the very next day and Joshua was so excited and ate every bite of it - he has had cereal for breakfast everyday since then.  :-)  After talking with Dawn it made me realize how much we truly need a support group at the hospital for parents of kids on MAD and that I really need to get moving on that with our dietitian so that we can create the group.  How fantastic would it be to create a place where parents could come together and talk about everything related to the diet and share recipes.  I really need to make this happen because we all need support as this is tough stuff! 

This week has been much better - Joshua is back to eating again (so happy about that) and he has a lot more energy.  Even when he is driving me crazy it is so nice to see him with some energy as he didn't have any for so long.  We are still not back up to pre-seizure levels of energy, but I'll take it! 

Regarding his seizures, we are continuing to make progress.  We are still daytime seizure free, but his sleeping Myos continue to hang on and be my arch nemesis.  He averages less than 10 seizures per day, but it varies a little bit day to day - we have had a couple 1 seizure days.  For the month of July he had 137 seizures!!!!  Although that still sounds like a lot (and it is, we want 0), it is AMAZING progress.  For comparison, he had 332 in the month of June so we had over a 50% reduction in his seizures from June to July.  In early July I posted on here we would have a good month if we reduced down to 155 seizures and we beat that and got to 137.  I hope and pray for continued reduction of seizures in August.  One day I really hope to post on here that we had a seizure free month - I am determined to get there!

  We are still in the process of weaning Depakote and it will take longer since we decided to slow down.  This coming Friday we will go down another pill which mean we are 1/2 way done as that will be 3 pills (out of 6) gone.  We have seen some behavior issues with the wean of Depakote, but I was told to expect that as the drug is removed from their system.  He is also still having issues sleeping (or staying asleep I should say), but that is just becoming a way of life for us.  Our Dr. told us to get Benadryl (which I did), but the online support group told me not to use it as Benadryl often causes seizures in Doose kids so we decided not to use it.  I think we may try to get some Melatonin to see if that will help any (most Doose kids take Melatonin to help with sleep issues). 

Joshua had his 1st speech therapy appt. this week and Chip said it went well.  They are working with him on "what" questions since he struggles with those and they are the easiest to learn so that is where he is starting.  We are also working on 1-step commands because Joshua cannot follow more than 1-step.  The pathologist told us that we need to eliminate all distractions from the room, make sure we have Joshua's full attention and then give him a 1-step direction.  After he completes that step, we then tell him the next step.  For example, normally you might tell a child to "go upstairs, get your shoes and coat and come back downstairs".  That does not work for Joshua - he looks at you blankly if you do that.  So, we need to tell him to go upstairs and then once he is up there we tell him to get his shoes and after he does that we tell him to get his coat and so on.  It's a learning process for all of us.

Joshua also had his OT evaluation this week at Good Sam's CTU (Children's Therapy Unit).  As was found during his school assessment, he has trouble in this area (as does most Doose kids) and so they are going to begin therapy.  We have (more) paperwork to fill out and then we will get put into a weekly therapy session.  We are still waiting to be seen for PT, but hopefully that will be soon.  I don't know how we are going to fit in all of his therapies once school starts, but we will figure it out.

Joshua and Cole are in swim lessons and Joshua is really loving it, at least now.  The first few sessions he cried and didn't want to get in the pool, but we are over that now and he just loves it!  We love the program because it uses a belt system that keeps him a float so we feel it is safe, even if he were to have a seizure.  He is now even jumping off the diving board and going down the slide into the pool.  It makes me happy that he can still enjoy some activities, especially one that is pretty scary when you have an epilepsy diagnosis.  The boys attend twice a week and we will keep it up even after school starts because they love it so much.  Cole is getting really good and learning a lot - making way more progress than he ever did at the YMCA. 

I have decided to sign Joshua up for soccer as he is finally old enough to play and he wants to play sooooo badly.  His Dr. has said that soccer is the safest sport so I am going to put him in fall, indoor soccer at the Y.  He is so excited and I can't wait to see him play.  I am not sure he will be able to keep up with the other kids in regards to energy and running around, but we'll see how it goes.  I don't want his diagnosis to hold him back from anything so we are going to try it out and see if he can do it.  I can't wait for his 1st game! 

This coming Tuesday morning I am going to Washington DC for work and won't get home until late Thursday evening.  This will be the first night I have been away from Joshua since he started having seizures in January.  I am not nervous as he is in great hands with Chip, but I am a little sad that I will be so far away and that if he happens to spiral downward, I will not be home to be with him.  I am hoping he will be great for the few days I'm gone and that it will go by quickly (I am sure Chip hopes the same - he he). 

I think that about covers everything - phew!  This was a long update, but I guess that happens when I wait too long in between posts. 

 

Start of Depakote Wean

When I last wrote I stated we were going to start weaning Depakote and we have started that, but we are going slower than my Dr. suggested just to be safe.  After posing a question to my online support group of Doose parents I got a lot of responses regarding the need for a really slow reduction so as not to see seizures or have other side effects (mood swings, irritability, appetite issues, etc.).  So, after thinking about it for awhile we have decided to go down 1 pill every two weeks (instead of every 1 week).  It cannot do any harm to go slower so we decided better to be safe than sorry and it is okay if it takes longer to wean than we thought (about 10 weeks instead of 5).  So far we have only gone down 1 pill (from 3 to 2 at his evening dose) and so far it seems to be going okay.  This Friday we will also reduce his morning dose from 3 pills to 2 which will make his total dosage for Depakote 2 in the morning and 2 in the evening.

We have seen 3 "possible" absence seizures since we started the wean which is another reason we are being extra cautious.  I am not sure if what I saw were seizures or just him spacing out and ignoring me, but they were long enough to cause me to pause and panic.  Had he been having seizures regularly I would have marked them as seizures, but since we haven't seen any in over 6 weeks I am really not sure.  At the end of one of them he smiled so I don't know if he was just being "funny" and ignoring me or what.  Ugh - I wish I knew for sure!  We still have not seen ANY drop seizures which is great, but I worry about the possibility of the absence seizures sneaking back in.  This diagnosis is such a roller coaster.

Overall the diet has been going pretty well, but I have been having a hard time the last few days.  We have had family in town and have been out busy sight seeing, going places and attending events and the diet is sooooooo hard when doing those things!  He has had a few meltdowns regarding food in the last few days and I almost broke down crying in front of him one day.  It is so hard to see your child beg for food and know that you cannot give it to him because it may harm him, but you know he doesn't understand why you are telling him no.  It is heart breaking in a lot of ways for him not to be like the other kids and indulge in what he wants.  Most of the time he does pretty good, but he has his moments where I am sure he is saying to himself "this isn't fair!".  And, I would whole-heartily agree with him - it is not fair.  I am sure we will go through a lot of this over the next several years while he is on the diet and I'm sure it's all normal - it is just getting to me right now.  We are also trying to plan vacations and trying to find a place to go where I can still keep him on his diet is tough and I feel like our options are limited.  What can I say?  Doose sucks! 

On the positive side though the diet is keeping most of his seizures away.  We still have not had a seizure free day since that one a few months ago, but I continue to hold out hope that we will get there some day.  I continue to pray and hope that his brain will one day heal and that he will recover from all the damage that has been caused. 

We are finally starting to make some progress on his therapies.  He starts speech therapy at Mary Bridge next week and he will be going once a week for 12 weeks (to start).  He is also scheduled next week to have his OT (occupational therapy) evaluation at Good Sam CTU and so hopefully after that he will start having regular OT appointments.  We are still on the waiting list for PT (physical therapy), but hopefully we will start soon. 

We are going camping for 3 days (leaving tomorrow) at Penrose State Park.  I will be packing and preparing his food tonight (sigh) and we will hopefully have fun despite the weather not being so great right now.  If all goes to crap, we can always head home as it is only an hour away from the house.  I am a bit concerned as Joshua has not eaten since lunch yesterday (refused his dinner last night and everything today, including his favorite peanut butter ball) and slept for nearly 4 hours today after swim lessons.  I hope it is just a phase and that he is not coming down with something.  If he doesn't eat he won't have energy while we are camping which will make for us not being able to do much.  We'll see how it goes - maybe tomorrow will be a better day for him.  Until next time....

P.S.  Chip retired last Friday from the Air Force after 22 years (the reason we had family in town).  His ceremony was great and we celebrated that evening and we had a great time.  I am very proud of him and glad that he is able to now stay home with Joshua during this time.  He is an amazing father and husband and I'm lucky to have him.  Thanks for your service, honey! 

Dietitian and Neuro Appt.

We had a big day today with an appointment with Joshua's dietitian and his neurologist. 

Dietitian
Joshua's dietitian (Joy) was very pleased with Joshua's weight and height.  His height was the same and he gained about 1/2 pound since his last appt. (he is now 44.5 pounds)  This is right where she wanted him to be and she was happy with his progress.  We showed her the spreadsheet we are keeping and she was impressed and thought it was working great for us.  She wants us to continue with the MiraLax, baking soda, salt and soda every day like we have been doing.  At the end of the appointment we were talking about starting a support group for those who are on MAD at Mary Bridge because there is no such support group now.  I think there is a real lack of support for those who are on the diet (I have my online support group, but people who are not on Doose don't have that and feel very alone).  I think this may have to become one of my projects (how would I fit it in?).  It would be a lot of work, but it would be so great to put something like this together and bring the families who are on the diet together to support and help each other out.  Something to seriously think about........

Neurologist
We had a lot to talk about today and as always, our appt. lasted about an hour and 1/2.  We talked about a lot, but here are the highlights.

1. We are weaning off of Depakote - starting tonight!  As I have posted before, I have done research and found that Depakote can interact with the diet and actually fight against the diet.  So, I pushed to wean him off of Depakote to see if we can gain seizure control (e.g. get rid of the sleeping myos) that way.  It will take us 6 weeks to wean off of it and if we see any of the daytime seizures return during the wean we will start going back up.  Dr. Korol was comfortable with the wean since depakote levels are already sub-therapeutic so they are not protecting him as much as they used to (the diet caused them to go down).  I am excited, but EXTREMELY nervous about the wean.  We will be going down 1 pill per week until they are gone so tonight he had 2 pills instead of 3 (was very strange).  Please keep your fingers crossed that the wean goes well both in regards to no seizures coming back and behavior (I have heard of behavior issues during med weans before).
2. Joshua is going to be tested (via blood test) for Glut 1 deficiency.  According to the Glut 1 Deficiency Foundation, "Glut 1 deficiency is a genetic disorder that impairs brain metabolism.  Glut 1 (a protein) is responsible for transporting glucose (a sugar) across the blood-brain tissue barrier.  The Glut 1 protein is made by the SLC2A1 gene, located on chromosome 1.  If this gene is damaged by a mutation, the protein is not made and glucose cannot be transported into the brain cells.  Glucose is the primary fuel source for the brain so patients with this have insufficient cellular energy to permit normal brain growth and function."  There is no cure and the ketogenic diet is the only treatment for Glut 1 deficiency.  Glut 1 deficiency is extremely rare and is a new known gene mutation and about 5% of kids with Doose have it (although my Dr. heard at a conference that the number of Doose kids with it is actually much higher).  So, what does this mean if Joshua has it?  Not sure yet - I don't think our treatment would change much , but it might mean we are on the diet for a lot longer than anticipated and the cognitive impairments could be more severe and/or longer lasting.  But, we won't know until we get blood tested and get the results (it will take about a month after the blood test to know the results).
3. We won't have another EEG for awhile - probably not until he is seizure free.
4. Joshua has been having problems sleeping lately (he falls asleep just fine, but then continues to get up for hours on end and stays up extremely late).  We have had sleep issues before and it is common in Doose kids, but we are getting overwhelmed by it.  So, we talked about Melatonin, but was told it helps kids to fall asleep, but not "stay" asleep which is our issue.  Dr. Korol suggested sugar free benadryl (need sugar free due to diet) so am on the hunt for that (maybe I can find in a tablet - need to post question to my Doose group). 
5. We are going to start Citra K (as soon as prescription comes through) to prevent him from getting kidney stones (which is somewhat common on the diet and one of his meds can cause kidney stones as well).  We should be starting that pretty soon as well, although not too soon as I don't want to make two changes at once (weaning depakote and starting citra k) because then if the seizures return we won't know the true cause.  The trick is only one change a time.
6. When to move to Keto if we have to?  We discussed that if weaning Depakote goes well, but does not get rid of his sleeping Myos, then how long do we give MAD to work before we switch to Keto to try to get rid of the remaining seizures?  Dr. Korol suggested 3-4 months after the Depakote wean to give his body sufficient time to recover from the wean and see if MAD will take care of the rest.  So, if by Christmas we are still not seizure free, I think we will be moving to Keto.  If we wait until then it will would be 9 months on MAD. 
7. Joshua has continued to be daytime seizure free.  Today is 6 weeks with no head drops and no absence seizures!!!!.  We are still seeing about 5-10 Myos per day between his nap and when he goes to bed.  These pesky Myos just keep hanging on - so annoyed! 

I think that is it for news from today.  I will let everyone know how the wean goes - I have a lot of nervous energy going on about it!

Out and About

We have decided that we cannot let Joshua's diagnosis or his diet stop us from living our lives so we have been trying to get "out and about" more lately.  It helps that summer finally arrived here in Seattle and that Chip is not working.  It takes a lot for us to get out of the house and to get everything coordinated so it feels like a major accomplishment when we do.  We first have to figure out what food we will need to take for Joshua (e.g. what meals or snacks we will be gone during).  Then we have to figure out what we will have access to while we are gone (like if we can take something that would need to be heated up or cold only).  After we figure out what we think we are going to take, we have to actually make it, figure out the best way to store it (cooler, back pack, do we need ice, etc.) and then package and label it.  Lastly, we have to document what we are taking in his log and figure out all the nutritional information to know if he will have enough fat in his meals and snacks. 

In addition to his food, we have to figure out if we think we are going to be gone during his medication times and if there is a possibility then we have to take all his medications.  This involves not only packing his medications, but everything he needs to take them with (applesauce, "juice", spoons, measuring spoon for the liquid med, etc.). 

We also have to figure out his nap schedule if we are going to be gone as it is very important that he take a nap every day or he has more seizures.  So, we have to decide if we are going to get out super early and be home for nap time or let him sleep in the car (if we have a long drive) or stay home until after he wakes up from his nap and then leave. 

As you can see, if we are able to get everything together and actually go somewhere it is a minor miracle and so we are very proud when we do.  Here are some pics from some of our recent excursions.

One Sunday in June we took the ferry over to Vashon Island and we spent the day there.

Chip and Cole on the ferry ride over to Vashon



Chip and Joshua on the top of the lighthouse

Cole finding shells on the shore

A purple starfish - color of epilepsy!

 Chip and Joshua on the beach

Joshua throwing rocks

Joshua, Cole and Chip on the beach

Chip and Joshua on the ferry ride back

We went to a Tacoma Rainiers game at the end of June.  The Tacoma Rainiers are the AAA team for the Seattle Mariners and 3 pitchers from the team came to visit Joshua in the hospital when he had his 48 hour Video EEG at Mary Bridge Children's Hospital.

Joshua and Chip

Joshua looking at Rhubarb

Joshua and Rhubarb - love this one!

Chip and Joshua watching the game - Joshua had a hot dog w/o bun at the game

Cole so happy with his cotton candy and it did not bother Joshua

A few weeks ago on a Sunday we went to Penrose State Park for the day and had a blast.  We want to go back sometime soon and go camping there over night. 

Brothers at play

Joshua relaxing

Cole and Chip

Joshua and Chip

Cole and I walked out on the sand bar and a few hours later it was all covered up

Cole climbing in a tree

Chip and Cole

The 3 boys

Me and the boys

Joshua and Chip

Cole found some hidden areas in the rocks to climb through

More of Cole exploring

Boys throwing rocks in the water

What a cutie!

Last weekend we went camping at Belfair State Park.  It was challenging between the diet, meds, naps and all the prep work, but we made it through.  I was so worried about all we had to do for Joshua that we forgot Cole's "squeegee" to remove his eye at night.  So, we ended up having to take it out with our hands.  Nothing like improvising with that in the dark, but we made it work.  We will be sure to remember it next time.  We also have a better idea on how to do things better next time for camping so a short trip pretty close to home was great (we were about an hour from home).  We hope to go camping again soon.

Joshua climbing on a rock at the playground

Cole swinging

Joshua swinging

Love this pic!

Cole climbing on the rock wall

At the top!

Joshua on the rock wall (Chip was behind him holding him for safety)

The boys sitting by the fire during lunch

Isn't he cute?

The boys roasting hot dogs

At the playground

Cole eating a smore

Joshua sitting by the camp fire

 Sitting on the rock

 Cole built a dam in the water