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!
Friday, November 9, 2012
Saturday, November 3, 2012
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.
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!
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!
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