Friday, the 13th - A Momentous Day!

Yesterday was Friday, the 13th and for most people that means superstitions and worrying about black cats and things of that nature.  For our family it was a day that we have been wanting to happen for almost two years!  Yesterday was Joshua's first day in nearly two years that he had NO pharmaceutical medication for his epilepsy!  We have been weaning his last med (Zonegran) since July so it has been about a 5 month wean and we are ecstatic to get all of the meds out of his system! 

His last medication dosing was the evening of Thursday, December 12th and it was so thrilling to be able to give him his last medication and to know we are done with that.  To think that in the beginning he was on 3 medications at high doses with little help to control his seizures and a lot of side effects is mind boggling.  I am amazed every day that the Keto diet has brought our baby back to us and allowed him to wean off 3 medications! 

Equally exciting is watching Joshua become more animated and involved in his life while coming off his medications.  He is talking so much now, playing so much more, pretending, and all around enjoying his life so much more.  It is such a big difference!  For those that remember what he was like a year ago, they just can't believe it as they sit and carry on a complete conversation with him now.  It brings tears to my eyes every time to think of how far we have come.

As Joshua has been weaning off all his medications I had high hopes that the meds were causing Joshua's cognitive delays and that we would see massive improvements in that area when he came off the meds.  While we have seen some great improvements in his abilities, he is still cognitively delayed compared to his peers and struggles to do basic things in school (like recognize letters or numbers, write, etc.) so we have to face the reality that some of his cognitive delays may not be due to the medications and may be permanent.  I am thankful for his Developmental program as they really tailor his school learning to him and I've seen him grow a lot this year.  It is a hard thing to wonder if his cognitive delays will remain forever now that his seizures are under control and his medications are gone, but the delays are still there.  The long-term prognosis for Doose kids is all over the board to kids who completely recover to kids that remain with deficits so it is difficult to assess where he will end up.  I hold out hope that new neuro pathways will forge in his brain the further we are removed from seizures, but we just don't know at this time.  We will continue to take it one day at a time and one grade at a time and deal with it as it comes.  For now, we are happy with no seizures, no medications and for having a happy little boy that plays with his trains again! 

Here are some pictures of Joshua take his last dose of epilepsy medicine!!!!!!   It was surely an early Christmas gift for all of us this year! 

Keto Anniversary

November 1st (last Friday) was our 1-year Keto Anniversary.  Hard to believe that we have made it 1 full year on the Keto diet and 18 months on diet therapy.  It is getting to the point where it is hard to remember what life was like before we had to measure every ounce of food we give to Joshua.  I remember our first weekend on MAD like it was yesterday and I really didn't think we were going to make it.  That first month was so awful and he got so sick that I wasn't sure we could stick it out.  A month after starting Keto he got too ketotic and ended up in the hospital and again I wasn't sure we could stick it out.  But, we did and now here we are. 

As I sit here reflecting on the last year and 1/2 I am torn between being incredibly grateful for the diet and annoyed at how it has transformed our lives.  I will be forever grateful for the diet and how it has stopped Joshua's seizures.  I never want to go back to him slamming his head into everything from the drops, having countless absence seizures during the day, seizing for the first hour during every nap and every bed time and being so high on drugs he could barely talk and having no energy to do anything, not even play.  The medications did NOTHING to stop his seizures and we were slowly watching him wither away from us.  I will never regret going on the diet, but there are days I wish we were not on it and wish we didn't NEED to be on it.  Administering the diet has gotten easier with time, but it will never BE easy!  It is hard to reconcile loving something so much, but at the same time hating it.  It is a strange combination and when I try to explain it to others I usually get a funny look because all they can see is the great things the diet has done for Joshua. 

To say that this diet is difficult would be an understatement.  When using food as medicine everything changes and it takes on a whole new meaning.  Until you are not allowed to have certain foods, you do not realize how much food is everywhere.  We have to think about food all day every day in everything we do.  Most people do this with infants - they have to take bottles and ensure they have enough food or watch the clock to nurse their babies, etc.  It is an accepted part of life and most mothers do not get annoyed by it because that is just how it is.  However, when it is like that with an almost 6 year old and you have no idea when it will end, it can be a daunting task.  Also, infants cannot get up and get into food on their own like Joshua.  We cannot leave the house without thinking about food - this is some of our thought process.  How long do we think we will be gone and how many meals does that equate to?  Once we figure that out, we have to decide "where" will we be and what we will have access to - if we are going shopping and we won't have access to a microwave then we need to know we need to pack meals that do not need to be heated.  What if we are gone longer than we anticipate?  Pack an extra meal.  How many sodas will he go through or want in the time we are gone?  Pack those.  Will his meals require oil scraping?  Yes - pack the scrapers and the wipes to get the oil off his hands.  Do his meals need to be kept cold?  Yes, pack the cooler and all the packs.  Are we going someplace there will be food he will want to have like the other kids (for example a birthday party).  Ok - make and pack a special snack - cupcake perhaps (that takes 1 hour to make one).  Packing to leave the house for his meals can take anywhere from 30 minutes - 2 hours depending on how long we are going to be gone and what we want to take.  It gets easier and faster with time, but there is no grabbing the car keys and "just leaving" at our house.  EVERY trip has to be carefully planned out, even if just running errands for the day.  We have gone out to eat as a family less than a handful of times over the last 18 months.  It is just too hard on all of us.   Instead, Chip and I take turns taking Cole out for special meals.  It doesn't seem like food should be a big deal and that we should be able to stay away from it, but it is everywhere, even at the place where he gets his hair cut "No, he cannot have a sucker as he is on a medical diet".  It should not bother me, but it does - every time we have to tell him "no, that is not on your special diet" which is constant.  We can't even go get our pictures taken with Santa at Christmas time without having to fend off hot chocolate, cookies and a candy cane.  Shopping at Costco on "sample day" - forget it, I would rather just turn around and go home.  Parties at his school full of food, snack time in his class EVERY day, rewards for doing a good job in OT - food (except for Joshua), Harvest night at school - food everywhere, Valentine's Day Party, Halloween party, Christmas parties and the list goes on and on.  We stay at home a lot because with Joshua's cheating it is just a lot easier for us to control what he has access to and what he might be able to find.  Going to other people's houses is very stressful because you never know what he will find - other people obviously have food in their garbage - not at our house - so he goes hunting.  He steals food off our plates at home so he is no longer allowed to eat at the dinner table with us most nights and I hope and pray I am not causing other issues in his psyche.  The hardest thing for me overall is denying him food when he is begging and crying and telling me he is hungry - it is hard to describe how it feels to deny your own child a basic necessity because you know it is in their best interest.  Because his diet is calorie restricted we can only feed him so much per meal and per day and when he's done, he's done.  He doesn't always understand that and some days he is more hungry than others.  We all struggle with this and I hope we all make it out the other end. 

I am in no way trying to talk bad about the diet or discourage others from doing it.  I will never regret it and I owe all of how well he is doing to the diet.  I just wanted to express that living with this day in and day out for a year and 1/2 (and for the foreseeable future) is not easy and we are tired.  We look forward to the day that Joshua will be off the diet and we don't have to think about food every day, all day.  I can't wait for the 4 of us to be able to eat dinner together out at a restaurant or be able to take Joshua out for ice cream or go see Santa without sheer panic and feeling like I have to tackle the elf who is trying to hand my son a candy cane.  We will get there someday and until then, we will continue on.  And, if I ever wrestle him to the ground to take food out of his hand, please know that I am doing what is best for him, even if it seems a bit crazy.  (You should see the looks we get in public when we have to take something away from him). 

18 months on diet therapy and 1 year on keto - who knew that it would be the best thing for him and the best thing I ever researched, but also at the same time, one of the things I loathe the most. 

To all my epilepsy peeps - keep fighting!  There will be a cure some day and until then I am thankful that keto is available and is working for my son. 

A lot to Catch Up On

Wow - It has been a LONG time since I have posted and I have a lot to catch everyone up on.  So, sit down and get comfortable as I think this will be a long one to read.  :-)

In July we had another 24-hour EEG to see how Joshua was doing as we were seeing seizures at night again.  Our Keto team requested that we have the EEG done at Swedish this time instead of Mary Bridge Children's hospital.  Our neurologist was okay with that so we went ahead and scheduled it there.  Joshua and I had to be there early on a Monday morning so we stayed the night at Mom's house on Sunday night and then went in.  Getting Joshua hooked up took about 2 hours and it was not as easy as it had been the last time.  He got quite upset several times, but we muddled through and got him hooked up.  He had his typical "jerks" during his nap and at night so I marked them in the room and wrote them down on the sheet.  My friend Amy (and her daughters) came to visit during the day and my Mom came to visit in the evening.  Chip and Cole stayed home and had a "fun" day - they went to Enchanted Village and Wild Waves.  The next day the Dr. and the Keto team (nurse and dietitian) came into talk to me about the results.  I fully expected them to tell me that Joshua was still having seizures, but to my surprise they told me that Joshua had no seizures on his EEG!  He did have two "bursts" of brain activity during the EEG, but they were not correlated to any physical movement so therefore, not a seizure.  We got our confirmation that the Keto diet was working!  As great of news as this was, it was so far from what we expected that it kind of through us for a loop.  We thought he was still having seizures so we had started researching other ideas and had come to the conclusion that we would take Joshua back to MAD (the easier version of the diet) and put him on medical marijuana.  We were looking forward to this possible change since the diet is especially hard for him and the rest of our family.  At this point Chip and I were often saying we were "done" with the diet.  But, with the word that he was seizure free on the diet we decided to stay the course and continue on.  It took about a week for us to really get through this thought process as it is a daily battle for us and we are tired.

In late August we moved into our new house.  Boy, that was a lot of work and very stressful for the summer.  We are now settled, but adding that to our already chaotic life was probably pretty crazy of us.  But, it is done and over now!  The summer was very stressful with Joshua as his challenging behavior was at an all time high.  Additionally, his cheating on the diet escalated extremely high and has not come back down.  We LITERALLY cannot take him anywhere there is food as he will cheat.  He has gone as far as to pick up chewed gum off of parking lots and eat it, pick up 1/2 eaten ice cream off a park ground and eat it, has dug through a garbage at my friend's house and ate food (we had to promptly leave) and the list goes on.  At home, we have gone through several attempts at a locking system in the new house.  We currently have our pantry locked with a key and we have to keep that key either on us or locked in the refrigerator because if he locates that key he will go straight to the pantry and eat something.  The refrigerator is locked up with a bike lock (it did have two locks on it until he figured out the 2nd lock).  The only reason the bike lock works is because it is a combination lock and he doesn't know the combo. 

After the chaotic summer we decided we needed help dealing with Joshua's behavior so we started seeing a therapist.  She is supposed to be Joshua's therapist, but so far has only met with us.  Joshua will come with us to the next appointment.  She is helping us with a parenting plan for the behavior, but really has no suggestions on how to help on the diet front which is disappointing.  The therapist is okay, but I don't know how much of what she is having us try is going to work for a child that is developmentally delayed, and she has as much said that herself.  Frustrating!  There is a therapist that we met through our support group that I love as she has had real life experience - her son has autism and is now 21.  She truly "gets it" and knows exactly what we are going through.  I've met her twice through my support group, but we can't "see" her as where she works only takes Medicaid patients.  However, she will be starting her own practice next year around Feb. so I'm going to try to get into see her then and switch therapists. 

The boys went back to school in September.  Cole to 3rd grade in a new school (because of the move) and Joshua to Developmental Kindergarten.  Joshua is in a different school than Cole because Cole's school does not have a Developmental program.  Joshua had a rough few days, but has settled into his new school, new class and new teacher.  We just had our parent/teacher conference this past week and his teacher was great about explaining everything they are doing in class and working on.  The biggest thing they are working on is trying to get the kids to recognize their name and trace the letters in their name.  How exciting! 

I have saved the best news for last and that is that we are currently weaning off Joshua's last medication.  After his excellent EEG in July it was decided by us and his team that we would try weaning him off his last medication (Zonegran).  We are weaning VERY slowly which is to go down by 25mg every two weeks.  His dose was 150mg twice a day so going down 25mg every two weeks will take us until January 3rd (almost a 6 month wean).  It is slower than what we were told to do by his Dr., but the last med wean we had I did the same thing.  I have heard a lot of stories from other Doose parents about the difficulties of med weans (breakthrough seizures, drug withdrawals, behavior issues, etc.) so I was not going to take any chances.  Also, when we are done with this med his only protection will be the diet which is quite scary in itself (especially with the amount of cheating he does).  But, we are rolling the dice and hoping for the best. 

We have seen some improvements in Joshua related to his memory and cognitive abilities since we started weaning off his last med.  He is much more interactive and engaged with us, is talking a lot more, can express his feelings a lot more and is starting to remember things.  He has been coming home from school and singing songs (ABCs, Little Teapot, Months of the Year, etc.) which is just blowing my mind.  He is also starting to recognize a couple letters in the alphabet.  This is HUGE progress for him!  It is exciting to watch him, almost as if he is coming off a "fog" that he has been in for almost two years on drugs.  He started medication on Feb. 1st 2012 and we will be coming off all meds 1 month shy of his two year anniversary on the drugs.  That will be a great day for us!!!  We have to celebrate the little things as BIG things.  I was reminded of this in support group this past week when someone said "you have to find something to be positive and hopeful about no matter how bad things seem" and I'm trying to do so.  I was also reminded that "there is light at the end of the tunnel, it's just a longer tunnel that most".  Very good for me to hear - I love my support group as they truly understand the day to day struggles that others cannot as they don't live it every day. 

Joshua still has a lot of challenges when it comes to his behavior, his developmental age and his cognitive abilities and we will deal with those one day at a time.  But, for right now we are happy for NO SEIZURES, weaning medications, and improvements in his memory and abilities! 

Our next step is to have another 24-hour EEG in mid-late January to see if his EEG is still clear after being off all medications.  I'll be a nervous wreck for that one! 

Preschool Graduation

This week Joshua graduated from preschool.  His teacher had a little ceremony in his classroom where each child received a certificate when their name was called.  We then went to the library for treats and a video of the kids throughout the year.  I was crying the whole time watching the video as I'm sad he is leaving Ms. Janet and his classroom he has grown to love.  He was so distraught when he was removed from daycare and put into developmental preschool, but he has come such a long way and really opened up this year.  Ms. Janet is an amazing teacher who I know loved Joshua to pieces and who I grew very fond over throughout the year.  We will miss her dearly next year, but plan to stay in touch. 

Next year Joshua will be attending Ridgecrest (a different school) for Developmental Kindergarten as he is not ready for General Education Kindergarten yet.  His Kindergarten will be 1/2 day and he was placed in the AM class because the nurse is there in the morning and he needs to be where they have a nurse in case they have to give him emergency meds.  A few weeks ago, we were able to go to his new school and see his new classroom and meet his new teacher.  He was really not liking that he had to change schools and teachers, but I'm sure he will warm up to it in the fall.  His teacher seemed really nice and very interested in learning about his condition and the diet.  She said she would take me up on my offer for me to come talk to the teachers and give a presentation on epilepsy, Doose Syndrome and the Ketogenic Diet.  The classroom size is really small and there is 1 teacher and 2 para educators so he will get a lot of 1:1 instruction and help which will be great.  We already had his IEP meeting so everything is set and ready to go for next year.  We filled out is mountain of paperwork for the new school and all the medical forms - ugh - it is a lot.  Bring on Kindergarten in the fall!  We are looking forward to it.

Below are some pictures from the big preschool graduation celebration! 

The board listing the graduates!

Joshua's board of pictures and writing

Ms. Janet - his amazing teacher giving him his certificate

Eating his Keto cupcake

With Ms. Janet again

Daddy and Joshua

Mommy & Joshua

Outside in front of the school



 

We won't go to this school next year so had to get a pic

Epilepsy Foundation NW Walk 2013

Last weekend was the 5K walk/run for the Epilepsy Foundation Northwest.  There were 5Ks in multiple cites in the Northwest states and all together approx. $200K was raised for epilepsy research and to help those with epilepsy.  Team Joshua was out in force again this year as I think we had the biggest team at the Tacoma location.  It overwhelms me to see how many friends and family were walking around with their "Team Joshua" shirts on - we are very lucky to have so much support.  Thank you to everyone who walked or donated - I can't express enough my appreciation for your help and support through our journey. 

I ended up speaking again this year at the opening ceremonies and it was a last minute thing so I wrote my speech the night before.  It was easier to talk this year as I was not nearly as emotional as I was last year and I really wanted to get my message across.  Last year everything was so new and overwhelming an this year I felt like I had a purpose to my speech.  I wasn't sure how well it would go over, but everyone seemed to like it and I even had a total stranger come up and hug me afterward just to say thank-you for sharing our story.  Others  told me they liked hearing about the diet as they had not heard too much about it before.  It felt good to stand up there and tell everyone about the miracle of the diet and maybe, just maybe someone in the audience will try it for their child or themselves and find some relief  - that would be wonderful. 

Below are some pics from the walk and at the end is the speech I gave in case you want to know what I said.  I was going to post a video of me talking, but I don't think anyone I know actually ended up videoing it.  Dang!  :-)

The 4 of us!

Cole & his friend Ryder

 Reece, Cole, Ryder & Owen

The back of Team Joshua's shirts - The Brain Defenders!

 



Me with Janette and Lisa

The 4 of us again!

Rhubarb with Ben, Owen, Reece & Cole

Rhubarb with Joshua

Joshua with another mascot

Me with Amy and Jenny

 



Me and Joshua

My Mom (Nana), Joshua & Me

Chip, Joshua and Me

Banner

 Janette wrote this on the sidewalk

 

Me speaking during opening ceremonies

Cole getting his face painted

Speech:

FIRST – Thank you to all of you for being here to help raise money and awareness for epilepsy.  It is those of you out there that are making the difference and we appreciate it so much! 

I was asked to give my perspective on epilepsy from a parent’s point of view and our journey since it all started 18 months ago and I could, but it would be quick and not very helpful.  Simply put - it is hard.  That is it.  No more, no less – just incredibly hard. watching your child seize and not be able to stop it.  So, instead I am going to focus on two things that have become my passion since epilepsy entered our lives.

1)   Advocating for epilepsy funding and why it is important. 

      2)   Dietary Therapy as a “real” treatment option for people with intractable epilepsy

So, why is funding for epilepsy important?  Let me give you some facts: 

       •         65 Million people worldwide have epilepsy

 •         About 2.7 million Americans have epilepsy with ~150,000 new cases each year

 •         Epilepsy is the fourth most common neurological disorder in the U.S. after   

          migraine, stroke, and Alzheimer’s disease.

       •         1 in 26 people will develop Epilepsy in their lifetime

       •         1 in 10 people will suffer a seizure in their lifetime

       •         More people live with epilepsy than with autism spectrum disorders, Parkinson's   

                disease, multiple sclerosis and cerebral palsy combined

•         50,000 people die from epilepsy-related causes in the United States every year

                      •         That is more than from breast cancer!

Funding:

Each year the government spends $30 billion on medical research at the National Institutes of Health. Yet just ½ of 1% is spent on epilepsy.

Public and private funding for epilepsy research lags far behind other neurological afflictions, at $35 a patient (compared, for instance, with $129 for Alzheimer’s and $280 for multiple sclerosis).

•         Pharmaceutical investment in epilepsy is less than in Alzheimer’s and  

         Parkinson’s,  and it’s expected to decline further over the next several years.

      •         The government invests $140-160 million in epilepsy research, but per patient, 

               contributes less to epilepsy than it does to other major neurological disorders.

     •         Finally, at less than $10 million, non-profit foundations contribute less than $4 per p

              patient to epilepsy research. Parkinson’s, by contrast, receives $40-50 per patient

              from nonprofits.

•         Therefore, per researcher, funding for epilepsy lags behind average funding for all

          diseases by nearly 50%.

Please support epilepsy funding and research by continuing to talk about epilepsy and its effects on those suffering from it and their families long after today.   We need your help!

My second passion – Dietary Therapy

Dietary therapy (Ketogenic, MAD, etc.) are REAL options and don’t ever let anyone tell you different and please don’t discourage anyone who wants to try it.  Is it Difficult?  Yes, it is!  Is it worth trying?  Yes it is!

 Joshua’s story –

       •         100+ seizures per day

•         3 medications – nothing helped

•         4 seizure types

•         Trouble walking, talking, “high” on meds, speech, motor, cognitive declines

•         Behavioral issues, sleep issues, etc.

•         Started on MAD over 1-year ago, moved to Keto 7 months ago

o   Drop seizures stopped in two weeks

o   Daytime seizures stopped in two months

 Side effects?  Everyone always asks about the side effects of the diet so here they     are:

      •         No day time seizures

•         Long periods of seizure freedom – 50 days

•         Two medications weaned off

•         Speech therapy and physical therapy no longer needed

•         Almost completely normal EEG

•         Cognitive gains weekly

•         Less behavior issues

•         Smiles and hugs

•         Energy – having fun – plays with his brother

•         No naps needed

 

Diet therapy saved my Joshua when Anti-Epileptic Drugs (AEDs) could not.  Diet therapy should be considered by every doctor and every parent of a child with intractable seizures.  What do you have to lose except some seizures??

 

Thank You,

 

1-Year on Diet Therapy!

I can hardly believe it, but it has been exactly 1-year since we started diet therapy for Joshua!  I remember when we started MAD and his dietitian told me we had to commit to trying the diet for 3 months and I thought "I'm not sure I can make it one month".  And now, here we are 1-year later. 

I started reflecting on our year-long journey and how different things are now from last year on this date and how much we have learned.  Last year when we started Joshua refused to eat and threw most things I made on the floor.  He stopped eating all together and was barely drinking and I didn't know if I could make this diet work or not.  I distinctly remember crying in his pediatrician's office begging her not to make us stop the diet as she was telling us we would have to go to the ER for fluids if we could not at least keep him hydrated.  It was an awful feeling to keep going with something that seemed to be causing to much disruption and pain, but I felt very strongly if we could get through the beginning there would be something amazing waiting for us on the other side.  Thank goodness she did not make us stop and we did find our "something amazing" on the other side.  The beginning was so difficult - I cried a lot, but am so glad we stuck with it and kept going.  His drop seizures stopped within a couple weeks and then his absence seizures stopped.  Within two months he was daytime seizure free!!!!  The diet was working and we were so excited. 

MAD took away about 80% of Joshua's seizures, but his nighttime Myoclonics persisted relentlessly and so after I went to the Ketogenic Diet Conference in Chicago I knew we had to make the switch to Keto or I would always wonder.  And, to our delight a few weeks after switching to Keto in November he had his 1st seizure free day.  Yahoo!  Since then we have had some pretty good runs of no seizures (44 and 50 days respectively).  I think he had two days of seizures over the past few days so I'm not 100% sure what day we are on right now, but towards the beginning again.  But, I will take it!  We are soooo much more improved from where we were last year I cannot believe it.

Last year at this time Joshua had NO energy and didn't do any activities - he hardly even played.  His brain was under constant attack and it showed in his behavior, energy level, attitude, desire to do anything "normal", his cognitive abilities, etc.  I remember days when he could barely walk he was so unbalanced and I had to walk behind him for fear of falling.  I had to hold his shoulders while he used the bathroom or brushed his teeth for fear of a head drop that would send is head shooting downward and hitting anything in front of him.  It was an awful way to live.  I distinctly remember Mother's Day last year as I spent all morning crying because the boy I once knew was gone and what he had become was a shell of his former self and I felt like I would never get him back.  He was sleeping 18 hours a day most days and did nothing. My family came over and all he did was sit with me and watched all the other kids play.  That night he refused to take his Depakote because the pharmacy switched manufacturers and he did not like the new taste.  So, I had to call his neurologist at home to find out what to do and ended up driving 45 minutes to a pharmacy and paying premium rates as insurance would not cover (they said I already had the meds) and the only one we could get that we thought he would take was ultra expensive.  I think I paid $75 for a couple pills.  It was a Sunday night and I had to get up and go to work the next day and I think I got home from the pharmacy at 10:00 and if he didn't take the meds I was going to have to take him to the ER to get it through an IV.  Luckily he took it when I got home.  That was a bad day and one that sticks out clearly in my mind when I think of how far we have come from last year. 

We have made it 1 whole year and that feels great!  We have made it through every holiday, birthday, party, etc. on the diet and we found a way to make it work.  I know we probably have at least 1 (if not 2) more years on the diet, but it makes me feel so much more confident knowing that we have made it through this 1st year and we survived!  I am so thankful for this diet and glad I was pushed early on in his diagnosis to do it by other parents.  My Mom can attest to the fact that I was SCARED to DEATH to try the diet, but felt that I had to try it for his sake because if there was a way to bring my boy back to us, we were going to do it.  And, bring him back it has!  We are not all the way there yet, but when I see his big smile now (something we did not see for awhile), I know it is all worth it.  His energy level continues to improve and we are amazed at some of the things he can do now that we didn't think was possible last year.  He is in swim lessons and most recently joined a soccer team.  I cannot tell you the emotions that overcame me watching him run after that soccer ball - AMAZED!  I watched and beamed from ear to ear knowing the hell we have been through in the last year and 1/2.

A huge thank-you to my wonderful husband who has fully jumped on board with MAD and Keto and makes way more of Joshua's meals now than I do.  I am lucky to have a husband who is on the same page regarding treatment and who is willing to learn how to make the meals and then does it.  Joshua is lucky to have such an involved and caring father and I want you to know how much I appreciate you and all you do for Joshua every day. 

Let's celebrate!  1 year down and I don't know how many to go, but however many it is it will be easier than the last year as we get more and more comfortable with Keto and learn how to make more meals.  Thanks to everyone for all your support as we entered down this path and for no one telling us we were crazy for trying an almost all fat diet for our 4-year old.  I've never been so thankful for fat in all my life.  LOL! 

Keto parents are a special breed and I'm proud to be one of them!  Hats off to all the Keto families tonight. 

Michelle

School Plan for Next Year

Yesterday we met with Joshua's team of teachers at his school to discuss his progress and the plan for next year.  It was a full room with his teacher, speech therapist, occupational therapist, physical therapist and school psychologist. 

The good news is that they have graduated Joshua from physical therapy and speech therapy so he will no longer receive those services at school.  On his testing he scored within the "normal" range and has met all of his IEP goals for the year in those two areas.  This is consistent with the reports we have received from him private speech and physical therapists so I'm glad to see everyone is on the same page. 

He will still qualify for services next year for cognitive, adaptive, reading, math, and fine motor skills.  He still has a lot of short term memory and expressive skills issues that are making school difficult for him.  He can only identify 1 letter of the alphabet and 1 number despite working on it all year.  He cannot identify the letters in his name, not even the "J" after repeatedly working on it.  In addition, he cannot follow directions from his teachers without being shown the activity and be given a lot of visual cues and help.  Once he is shown how to do something a few times and witnesses it, he can then usually do the activity.  However, for simple tasks the expectation in Kindergarten is that he can be told to do something and he can follow the directions - unfortunately he is not there yet.  In addition, he still sometimes shuts down in class, refusing to participate or sits out by himself.  He also still has low energy days at school where he won't engage. 

Based on all of the above (and a few other things) they have recommended that Joshua attend Developmental Kindergarten instead of General Education Kindergarten.  Although this was exactly what I expected based on earlier discussions with his teacher, it is still hard to hear the difficulties he continues to have at school when it is read aloud to you.  I'm glad of the recommendation though because he does need the extra help and I think General Ed Kindergarten would have been way too difficult and stressful for him.  He will be going to another new school next year as the program is in a different school with a different teacher.  This will be a very difficult transition for him and I'm not looking forward to making the change either.  He absolutely loves his teacher (Ms. Janet) and we do too so it will be hard to leave her.  She has been so amazing to our Joshua and I'll be sad she won't be teaching him anymore.  Ms. Janet will be setting up a time to take us to the new school to meet the new teacher and see his new classroom which will be great.  I have a lot to update his new teacher on regarding the diet and his condition.  I'm happy though that her classroom size will be very small (approx. 9 kids), she will have a para educator and she has a special education degree just like his current teacher. 

I'm glad we had the meeting and that we now have the plan for next year as it has been weighing heavily on me.  I'm a planner so I feel better just having a plan and knowing where he will be at next year.  I'm extremely thankful for the great programs in our school district and that Joshua is able to get the help he needs. 

Cheating..........and Seizures (we made it to 50 days)

We have been having a hard time lately keeping Joshua from cheating.  He has been getting up very early in the morning before Chip and I are awake and getting into the refrigerator and eating whatever he can find.  It is so unbelievably frustrating when we try so hard all day to keep him on his diet foods.  We try to explain "why" he is on the diet, but I really don't think he understands.  Since his seizures have only been in his sleep for so long I don't think he even knows he has them so he probably doesn't think anything bad happens if he cheats.  It is weird because sometimes he can be so good and will find a piece of food on the floor and pick it up and hand it to me and say "I can't eat that", but then he will turn around and try to take food off of one of our plates. 

I can't fully explain the heartache it causes to deny your own child food or to physically wrestle food they cannot have out of their hands, even when you know it is for their own health benefit.  I often don't talk about it because I am so thankful for the diet and I KNOW it is saving him, but sometimes it is difficult.  I think about what it will be like in the future (someday) to let him eat anything he wants and be able to take him out for ice cream.  I know that sounds like stupid things, but when you cannot do it anymore, it is hard.  I don't think anyone can fully grasp a change like this until they are faced with it and deal with it every day. 

Although Joshua is 5 we have to treat him like a baby and not let him out of our sight.  We can't even go to the restroom without making sure someone can watch him because he may try to sneak food.  The minute I hear a bedroom door close I go running because usually that means Joshua has gotten into something and is hiding.  It is a strange fear to live with, I have to say.  Our cupboards are locked so he cannot get into the food and that has worked well.  However, the refrigerator has not been as successful (Joshua has broken off two sets of locks already).  We are now contemplating getting a bike lock and putting that on the fridge at night so he cannot get into food while we are sleeping.  These are not thoughts that most parents have, but it is a reality in our house. 

All of Joshua's cheating caught up with him last night when he had 11 seizures when I put him to bed.  I was not surprised at all due to the cheating, but it was still heart-breaking.  Our last seizure free stint was 44 days and this one was 50.  I hope someday we will have longer stints, but it just did not happen this time.  Today we started over.  He is in such a better place than he was a year ago so I should be nothing but thankful, but yet, it crushes me every time he breaks his seizure free stints.  I cringe knowing that his brain still knows how to seize and that he is not healed yet.  I hope that one day his brain will be completely healed and this will all be behind us.  I can't describe what it feels like to hold your child in your arms and watch/feel them have continuous seizures - I don't think it is something that will ever leave me. 

I don't write this post so that people will feel sorry for us - I do it to bring awareness.  Before Joshua I knew NOTHING of seizures or epilepsy and the pain that it causes and the toll it takes on a family.  Now that I know I want to make sure I share this with others so people will have empathy and donate money for research and will not treat people with epilepsy differently.  I'm appalled by how little research funding epilepsy gets compared to other brain disorders, yet more people are affected by and die from epilepsy every year than those other disorders.  I have a lot of friends that I have met on this journey and they are all fighting for their kids, their families and their sanity - I want so badly to help them.  If nothing else, help me spread awareness and understanding for those living with epilepsy and their families who live with the struggles every day. 

Today we started over.  We will continue to fight and hope for a life without seizures, medications and a restrictive diet.  We will win.

Updates, Updates, and more Updates

Lots of updating to do tonight since my last post so bare with me. 

Diet Update:
We are still holding out at a 2.75:1 ratio.  We were going to go up to 3:1, but since things have been going pretty well lately we have decided to stay here for a little while longer.  Since Joshua is still cheating the Swedish team is worried to take him up to 3:1.  I think we will talk about it again after we get back from vacation.  We are also talking about increasing his calories because of his cheating, but we are not convinced he is cheating because he is hungry - we think it is more behavioral.  He is gaining weight and growing so I think the calories are probably appropriate.  Whatever we decide it won't be until we get back from vacation as it is too stressful to change right before we leave. 

Blood Work Update:
We had Joshua's blood drawn again on March 6th as there were some areas we wanted to re-test from his blood draw in January and get more definitive results.  They checked EVERYTHING (8 vials of blood were taken).  His blood results were great - only area that was a little under was his red blood cell count so we are starting him on an iron supplement.  His blood ketone level was great at 5.7 and his Zonegran medication level was right on.  All his other tests - calcium, vitamin D, carnitine, cholesterol, potassium, etc. were great.  Yahoo!  We will have his blood checked again in 3 months, but we are good until then (I think that may be one of the longest stints of not getting blood work that we have had since we started).

Genetic Testing Update:
Joshua's genetic test results are in and all are negative!  This test checked for many genetic abnormalities and issues and none were found.  This also tested for Glut-1 deficiency and that was negative as well which is great news.  If Joshua had Glut-1 it would have meant that he probably would have been on the keto diet the rest of his life as it is the only known treatment for it.  I'm glad that his genetic test came back negative, but at the same time it would be nice to know WHY this all started.  I guess we will never have an answer.

Seizure Update:
As I said during my last post we have lost some seizure control since the end of January.  We enjoyed 44 great days between mid-December and late January and then it un-raveled a little.  We had some absence seizures and then the Myoclonics came back as well.  We had 50 total seizures in February which was a huge bummer, but if I remember where we come from at well over 100 per day that is still great.  Most of February he continued to have seizures every few days, but March has been much better.  He has only had a few seizures in March and I'm happy to report that today marks 14 days of seizure freedom!  I feel like we are back on the right path and hope this seizure freedom sticks to the end.  Please pray it sticks this time and we don't see them come back ever again.

Dr. Korol (neurologist) Update:
We had our check-up with Dr. Korol today and it went well.  I think it was one of the shortest appointments we have ever had at 1 hour.  We talked about where we are seizure wise and what that means for getting him off his last medication, Zonegran.  Because he was having seizures so recently and the fact that we just took him off Zarontin she does not want to wean the Zonegran yet.  We want to have another EEG that looks as good (or better) than the last one and then we will take him off Zonegran.  We agreed to have another EEG in July and if it is clear then we will wean Zonegran and be done with drugs!  I CANNOT wait for that moment - I will be so excited!

Dr. Korol wants us to go back to the neuro psychologist and have Joshua tested again to see where we are at cognitively speaking.  We had him tested last year, but he would not sit through most of the tests so it was difficult to get an accurate assessment.  Now that he has better focus and attention span we want to try it again to see if we can get a complete evaluation.  By the time we get it scheduled, it will be a year since we had it done so it seems timely to get it done again.  I'm nervous about the results, but feel it is important to find out where he is at if we can get the complete analysis done.

Behavior Update:
Joshua's behavior has improved overall so I think for now we won't be pursuing a behavioral therapist.  We are still winning the battle over PJs - at least when we leave the house.  I think it will just take some getting used to for him that he now has consequences for his actions now that he is feeling better. 

School Update:
We received Joshua's progress report today from school and we were pleasantly surprised to see that he has made a lot of gains over the last trimester.  There are still some areas he is struggling in, but it was nice to read the areas where he has improved in recently.  And, I find it very interesting that all of these gains were shown in the most recent trimester (Dec. to now) right after we took him off Zarontin.  Coincidence?  I don't think so.  Here are results which are aligned to each of his IEP (Individual Education Plan) goals.

A. Speech - not yet meeting his goals, but making progress.  "Joshua is still having issues with spatial concepts and expressive language.  His receptive skills are improving well."

B. Fine Motor Skills - line tracing - Joshua is meeting his goal of tracing lines.

C. Fine Motor Skills - Copying lines and simple shapes - Joshua is meeting this goal and can copy simple lines and shapes.

D. Fine Motor Skills - Cutting with scissors - Joshua is meeting this goal and is moving onto cutting out shapes!  Yahoo!

E. Cognitive Skills - Attention during circle time - Goal met!  "Joshua can now stay in circle time and sit with his peers while participating in group.  He is paying attention much better and participating more than 80% of the time."

F. Cognitive Skills - Follow multi-step directions - goal not met yet, but making progress.  "Joshua needs time to process what is being asked of him and he needs to practice following through on more than one step.  Once he has learned the directions, he is able to follow through on them daily." 

G. Cognitive Skills - Letter Identification - little progress made.  "Letter identification is really hard for Joshua.  Keeping his focus on the task at hand in order to teach him the letters is difficult.  We will continue to work on this in the spring."

H. Cognitive Skills - Spell Name - goal not met yet, but making some progress.  "This continues to be difficult for Joshua.  He has trouble really watching while we identify the letters in his name.  He has a higher percentage of identifying the J and the A, but even those are not consistent yet.  We'll continue working on this goal in the spring."

Overall, we seem to be in a pretty good place right now so I will take it!  Please pray that seizure freedom continues and that Joshua continues to make cognitive strides in school.