I am incredibly frustrated tonight! We had 1 blissful seizure free day last Thursday - we saw NONE during the daytime and NONE at night. I was so elated and really thought we were heading in the right direction and that Joshua was going to be a "super responder" to the diet. But, then.................the next day (and everyday since) his seizures have started coming back. ARGH!!!
I started noticing his Myos were coming back at night (and then also during nap) when he was sleeping or transitioning to sleep. It was an all too familiar feeling and pattern and with each passing day I began to get more and more nervous. His day time seizures (absence and atonics) were staying away, but the Myos started increasing every day (even going back up to pre-diet numbers on some days). I began to fear that soon we would see the daytime seizures come back as well. Last night he had a Myo when he was still awake and we were reading a book so that really sent my fears into over drive because the awake Myos have never been a good sign for us.
Tonight he had an Atonic head drop at dinner (my Mom was babysitting) and he hit his head on the table. My Mom texted me and told me as Chip and I were at the epilepsy support group meeting. I just sank in my chair as I realized that now the daytime ones are coming back as well. It is heart breaking to have that one day of no seizures and then right back into it. Last week I was elated, this week deflated. Here is how the last few days have been number-wise.
Thursday - seizure free day
Friday - 6
Saturday- 7
Sunday - 36
Monday - 27
Tuesday - 13 (understated b/c don't have numbers from
his nap as he was at school)
Today - 17 which included the 1 head drop and does not include numbers from his nap.
We had more blood drawn today and go back to the Dietitian on Friday so maybe we will get some answers then. Perhaps we are doing something wrong with the diet and tweaking it will help get us back on track? I can only hope and pray that it is indeed something we are doing wrong and that we can fix it. The strange thing though is that his ketones are still high so I don't know what to think of that because you would expect his ketones to be low if he is having seizures. All of this makes me fearful that we are not going to get full seizure control on MAD (which was always a risk) and that we may have to move to Keto in the future. Although I will do it if needed, I really do not want to and was really hoping MAD would be our answer. Our Dietitian and Neurologist want us to give MAD 3 months before making any decisions (and we will), but I have to start thinking about the possibilities of what the future may hold. August 5th will be 3 months and if we do move to Keto I would like to do it before school starts back up in September since he will have to be in the hospital for 3-5 days and we will need to make arrangements for Cole. I know, I am getting too far ahead of myself - stay in the present day Michelle.
Perhaps we are just going through a rough patch or perhaps he is out of sorts or who know what - other Moms on the support group have said they have seen the seizures come back sometimes with the diet and that tweaking sometimes helps. Unfortunately only time will tell if his seizures are going to continue to come back or if we can get back to zero seizures like that one day. It would have been so much easier if we were slowly declining and I was just in the middle of getting there, but the dramatic reduction and 1 day seizure free really got me hopeful and these seizures coming back are just crushing.
We are keeping up the good fight! :-)
Wednesday, May 30, 2012
Monday, May 28, 2012
IEP
On Friday afternoon we had Joshua's IEP (Individual Education Plan) meeting at his new developmental preschool (Wildwood Elementary). We met his teacher (Ms. Janet) and his therapists for Speech, OT and PT. All of them were extremely friendly and informative and helped us through the process. Joshua got to play in the classroom the whole time we were talking so he really got a good feel for it. The teachers had already populated a lot of the IEP based on the findings from his assessment and input I had given them earlier in the week and then we added a few other things. I thought it was a great meeting and feel much more prepared for his 1st day which is this Friday (June 1st). He will only have two weeks and two days of preschool this year, but it is better than nothing.
Right before the meeting I received in the mail his full report from his assessment that got him placed into developmental preschool. Although I already knew he qualified in every area it was still hard to read the full report of their findings in detail and explain what he is having trouble with. It makes me sad that he is struggling in so many areas and what this epilepsy beast has already taken away from him. I hope we get it back! Here are the summaries.
Cognitive
Verbal Index Quotient ( Information, Vocabulary, & Word Reasoning) - Significantly Below Average. Joshua received a percentile rank of 2 which means that he scored the same or better than only 2% of his same-age peers.
Performance Index Quotient (Block Design, Matrix Reasoning and Picture Concepts) - Significantly Below Average. Joshua received a percentile rank of 0.1 which means he scored the same or better than only 0.1% of his same-age peers.
Processing Speed Index (Symbol Search & Coding) - Significantly Below Average. Joshua received a percentile rank of 5 which means that he scored the same or better than only 5% of his same-age peers.
Communication
Auditory Comprehension - standard score of 73 "indicating receptive language to be significantly delayed". "Joshua had difficulty with understanding analogies, understanding spatial concepts and understanding pronouns".
Expressive Communication - standard score of 77 "indicating expressive language skills to be moderately delayed". "Joshua had difficulty answering what/where questions, naming described objects and answering questions logically."
Fine Motor Skills
"Standardized testing was attempted many times, however due to Joshua's refusal to participate, an accurate standardized score was not able to be obtained. Joshua did not demonstrate crossing midline of his body with either upper extremity. Joshua was able to open, but not close a screw top container. He was able to pick up a few small beans using a right and left pincer grasp and place into a small container. During this activity, he exhibited difficulty with dexterity and often dropped the beans several times. He would not participate in cutting or drawing activities. It was also noted that Joshua's hands appeared to be in constant motion."
Gross Motor Skills
"Joshua was able to walk independently throughout the testing room, although sometimes on his toes. He ran with heels slightly elevated. Joshua was able to walk up the steps alternating feet without support, however he walked down the steps marking time, either with one hand on the wall or without support. Joshua was able to stand on one foot for about 1 second. Joshua kicked a stationary and rolled ball with good distance and directionality. By the end of the session it was clear that Joshua was tiring. Joshua demonstrated delays and need for support in the area of gross motor skills."
Neuro Psychologist Testing:
I also recently received the full report from the neuro psychologist which was not pleasant to read either because it placed Joshua well below his peers (8th percentile) for his cognitive abilities. However, the Dr. noted that he did not believe the results were a true representation of Joshua's abilities due to Joshua's inability to focus and stay on task all 3 days he was tested (which could be due to the seizures or medications or both). The Dr. recommends we test Joshua again in 9-12 months to see if we can get a more accurate test completed. Here is the summary from the neuro psychologist:
"Both his Fluid-Crystalized Index, a reflection as to overall use of general cognitive problem-solving abilities as assessed regarding use of short-term memory, visual processing ability, storage/retrieval of information and breadth/depth of knowledge, indicates a level that is Below Average. Even when verbal tasks are removed, his Nonverbal (cognitive) Index was in the same category - Below Average."
The good news in all this is that we are getting him the help he needs with the developmental preschool and some day when we beat the beast and get his seizures stopped and get him off medications I am sure his performance level will increase substantially.
Right before the meeting I received in the mail his full report from his assessment that got him placed into developmental preschool. Although I already knew he qualified in every area it was still hard to read the full report of their findings in detail and explain what he is having trouble with. It makes me sad that he is struggling in so many areas and what this epilepsy beast has already taken away from him. I hope we get it back! Here are the summaries.
Cognitive
Verbal Index Quotient ( Information, Vocabulary, & Word Reasoning) - Significantly Below Average. Joshua received a percentile rank of 2 which means that he scored the same or better than only 2% of his same-age peers.
Performance Index Quotient (Block Design, Matrix Reasoning and Picture Concepts) - Significantly Below Average. Joshua received a percentile rank of 0.1 which means he scored the same or better than only 0.1% of his same-age peers.
Processing Speed Index (Symbol Search & Coding) - Significantly Below Average. Joshua received a percentile rank of 5 which means that he scored the same or better than only 5% of his same-age peers.
Communication
Auditory Comprehension - standard score of 73 "indicating receptive language to be significantly delayed". "Joshua had difficulty with understanding analogies, understanding spatial concepts and understanding pronouns".
Expressive Communication - standard score of 77 "indicating expressive language skills to be moderately delayed". "Joshua had difficulty answering what/where questions, naming described objects and answering questions logically."
Fine Motor Skills
"Standardized testing was attempted many times, however due to Joshua's refusal to participate, an accurate standardized score was not able to be obtained. Joshua did not demonstrate crossing midline of his body with either upper extremity. Joshua was able to open, but not close a screw top container. He was able to pick up a few small beans using a right and left pincer grasp and place into a small container. During this activity, he exhibited difficulty with dexterity and often dropped the beans several times. He would not participate in cutting or drawing activities. It was also noted that Joshua's hands appeared to be in constant motion."
Gross Motor Skills
"Joshua was able to walk independently throughout the testing room, although sometimes on his toes. He ran with heels slightly elevated. Joshua was able to walk up the steps alternating feet without support, however he walked down the steps marking time, either with one hand on the wall or without support. Joshua was able to stand on one foot for about 1 second. Joshua kicked a stationary and rolled ball with good distance and directionality. By the end of the session it was clear that Joshua was tiring. Joshua demonstrated delays and need for support in the area of gross motor skills."
Neuro Psychologist Testing:
I also recently received the full report from the neuro psychologist which was not pleasant to read either because it placed Joshua well below his peers (8th percentile) for his cognitive abilities. However, the Dr. noted that he did not believe the results were a true representation of Joshua's abilities due to Joshua's inability to focus and stay on task all 3 days he was tested (which could be due to the seizures or medications or both). The Dr. recommends we test Joshua again in 9-12 months to see if we can get a more accurate test completed. Here is the summary from the neuro psychologist:
"Both his Fluid-Crystalized Index, a reflection as to overall use of general cognitive problem-solving abilities as assessed regarding use of short-term memory, visual processing ability, storage/retrieval of information and breadth/depth of knowledge, indicates a level that is Below Average. Even when verbal tasks are removed, his Nonverbal (cognitive) Index was in the same category - Below Average."
The good news in all this is that we are getting him the help he needs with the developmental preschool and some day when we beat the beast and get his seizures stopped and get him off medications I am sure his performance level will increase substantially.
Wednesday, May 23, 2012
Improvement Continues
Well, we continue to improve on an almost daily basis and it is exciting to see! The diet is going better - he is eating every day and tonight even had eggs for dinner (he was refusing them before)! This felt like a huge milestone for us. We also discovered that he likes Keto chocolate cupcakes - whoo hoo!
Cole had his B-day party this past Saturday at our house and the kids were going to have chocolate cupcakes so I found a keto recipe so Joshua could have one too. It turned out he loved it so it has become a staple in our routine. Chip and I spent about 3 hours on Sunday morning making food for the week and the cupcakes were a big part. I think it took us about an hour and 1/2 to make 8 cupcakes, but it is so worth it when I see him smile. He did really well at the B-day party (minus one melt down) which eased my mind as I was very nervous. The other kids had pizza, but Joshua had a hot dog (said he did not want the keto pizza I offered) and seemed fine with it. He was excited he got a cupcake, but his meltdown came when he didn't get the frosting the other kids got. I tried to pass off the whip cream as frosting, but he wasn't having it. After his temper tantrum he calmed down and ate the cupcake. Now, he has one every day! Big hurdle was overcome this week (at least for me) in knowing that he can survive a B-day party.
The other big hurdle we got over this week was him going to daycare. I was a nervous wreck about him taking his special food. I wondered if he would get upset when he saw he had something different, or if the kids would ask him questions or if he would try to take something he can't eat - I had so many concerns. But, he did amazing! He only tried to grab for one thing and that was yogurt and his teachers caught him and explained why he could not have it and they said he was fine. His teachers said he did not seem to be upset by having different food and the other kids were fine once it was explained why Joshua was having different food. What a relief!!! He went to daycare Monday and Tuesday and did really well both days. Another great accomplishment this week! He will go back to daycare on Friday - he only goes 3 half days now.
His daytime seizures continue to stay away - we have not seen any. His sleeping seizures still persist, but are still decreasing. They seem to be more on some nights than others so I don't have a totally reliable number yet, but last night he had 1. I cannot believe it!!!! 1 seizure! Whoo Hooo! If I was not witnessing all of this myself I would not believe it - truly amazing! That gives me all the motivation I need to keep going with the diet. I can see my kid coming back to me more and more every day - something that brings extreme happy tears to this Mama's eyes!
We are still having troubles with the potty - he either seems to be constipated or having diarrhea so we are trying to find the right amount of MiraLax to give him as it seems we are at one extreme or the other. But, small price to pay. His stomach may be more settled now as he is adjusting to the diet as he is not vomiting anymore. Hopefully we are past that part.
Friday is our IEP meeting with his teachers and staff at his new school. We are excited to meet his teacher and see his classroom. I think he is even getting excited which is great because when I first told him he was going to a new school he cried and said he wanted his old school. I know he will miss his teachers and friends at daycare (as will I - we have been there since Cole was a baby), but it is the right change. I know he will adjust to the change and hopefully we will be able to get him back on track developmentally and academically. I have sent his teacher some IEP goals, but working on more and the LONG questionnaire I have to fill out for the school (I am so tired of paper work!).
I think that wraps up our last week, but I will leave you with a new article that came out today that talks about how doctors might now be very close to knowing how the ketogenic diet stops seizures. Research is so important - please donate to the walk if you haven't yet and help me spread the word.
http://abcnews.go.com/blogs/health/2012/05/23/epilepsy-miracle-diet-prevents-seizures-scientists-may-know-why/
P.S. Fact for You: When you have a child on keto or MAD you have to consider the hidden carbs/sugar in everything. Case in point - I went to get Joshua's 2nd chicken pox shot on Monday and it dawned on me right before she gave it to him to ask what the ingredients were and sure enough - sucrose. UGH! I sat there and wondered if I should give it to him and see or try to get my Dr. to write a note that he can't have it, but risk not being allowed into preschool, etc., etc. I finally decided to go ahead and give it to him and awhile later I checked his ketones and they were indeed lower (not gone, but lower). I worried about him having more seizures that evening, but luckily it must not have been enough to affect him negatively. It is exhausting thinking about all these things as even non-food products have carbohydrates that can be absorbed through the skin and knock him out of ketosis - toothpaste, soap, shampoo, sunscreen, lotion, etc. I have to examine everything. I am learning a lot!
Cole had his B-day party this past Saturday at our house and the kids were going to have chocolate cupcakes so I found a keto recipe so Joshua could have one too. It turned out he loved it so it has become a staple in our routine. Chip and I spent about 3 hours on Sunday morning making food for the week and the cupcakes were a big part. I think it took us about an hour and 1/2 to make 8 cupcakes, but it is so worth it when I see him smile. He did really well at the B-day party (minus one melt down) which eased my mind as I was very nervous. The other kids had pizza, but Joshua had a hot dog (said he did not want the keto pizza I offered) and seemed fine with it. He was excited he got a cupcake, but his meltdown came when he didn't get the frosting the other kids got. I tried to pass off the whip cream as frosting, but he wasn't having it. After his temper tantrum he calmed down and ate the cupcake. Now, he has one every day! Big hurdle was overcome this week (at least for me) in knowing that he can survive a B-day party.
The other big hurdle we got over this week was him going to daycare. I was a nervous wreck about him taking his special food. I wondered if he would get upset when he saw he had something different, or if the kids would ask him questions or if he would try to take something he can't eat - I had so many concerns. But, he did amazing! He only tried to grab for one thing and that was yogurt and his teachers caught him and explained why he could not have it and they said he was fine. His teachers said he did not seem to be upset by having different food and the other kids were fine once it was explained why Joshua was having different food. What a relief!!! He went to daycare Monday and Tuesday and did really well both days. Another great accomplishment this week! He will go back to daycare on Friday - he only goes 3 half days now.
His daytime seizures continue to stay away - we have not seen any. His sleeping seizures still persist, but are still decreasing. They seem to be more on some nights than others so I don't have a totally reliable number yet, but last night he had 1. I cannot believe it!!!! 1 seizure! Whoo Hooo! If I was not witnessing all of this myself I would not believe it - truly amazing! That gives me all the motivation I need to keep going with the diet. I can see my kid coming back to me more and more every day - something that brings extreme happy tears to this Mama's eyes!
We are still having troubles with the potty - he either seems to be constipated or having diarrhea so we are trying to find the right amount of MiraLax to give him as it seems we are at one extreme or the other. But, small price to pay. His stomach may be more settled now as he is adjusting to the diet as he is not vomiting anymore. Hopefully we are past that part.
Friday is our IEP meeting with his teachers and staff at his new school. We are excited to meet his teacher and see his classroom. I think he is even getting excited which is great because when I first told him he was going to a new school he cried and said he wanted his old school. I know he will miss his teachers and friends at daycare (as will I - we have been there since Cole was a baby), but it is the right change. I know he will adjust to the change and hopefully we will be able to get him back on track developmentally and academically. I have sent his teacher some IEP goals, but working on more and the LONG questionnaire I have to fill out for the school (I am so tired of paper work!).
I think that wraps up our last week, but I will leave you with a new article that came out today that talks about how doctors might now be very close to knowing how the ketogenic diet stops seizures. Research is so important - please donate to the walk if you haven't yet and help me spread the word.
http://abcnews.go.com/blogs/health/2012/05/23/epilepsy-miracle-diet-prevents-seizures-scientists-may-know-why/
P.S. Fact for You: When you have a child on keto or MAD you have to consider the hidden carbs/sugar in everything. Case in point - I went to get Joshua's 2nd chicken pox shot on Monday and it dawned on me right before she gave it to him to ask what the ingredients were and sure enough - sucrose. UGH! I sat there and wondered if I should give it to him and see or try to get my Dr. to write a note that he can't have it, but risk not being allowed into preschool, etc., etc. I finally decided to go ahead and give it to him and awhile later I checked his ketones and they were indeed lower (not gone, but lower). I worried about him having more seizures that evening, but luckily it must not have been enough to affect him negatively. It is exhausting thinking about all these things as even non-food products have carbohydrates that can be absorbed through the skin and knock him out of ketosis - toothpaste, soap, shampoo, sunscreen, lotion, etc. I have to examine everything. I am learning a lot!
Friday, May 18, 2012
Hot dog and Jello Diet
I finally have some good news to share! Joshua started eating this week - yeah! However, all he wants to eat is hot dogs and Jello. LOL. I guess I will take it for now as it is better than nothing. He has hot dogs and Jello for all his meals (except dinner) and his snacks. I continue to offer other things, but he always turns me down. At dinner I make him sit with us and eat what the rest of us are eating (things that he is also allowed), but he usually just sits and stares at his plate. Although last night we had a breakthrough and he actually ate his ham and apples (weighed out to the gram, of course). I thought I could get him to eat ham for breakfast, but alas straight back to the hog dog. :-)
His ketones have gone down since he has started eating and were non existent yesterday which is not what we want so I had to analyze what I might be doing wrong to cause that. After consulting with my parent support group online the consensus was he is not getting in enough fat. So, now in addition to restricting his carbs I am pushing as much fat as I can. I try to cook everything in coconut oil, but he refuses most of those items so I have started giving him butter instead. As gross as it sounds, I have started to put a side of butter on his plate and he eats it straight. I have been giving him 15g of butter with every meal and snack today and he eats it up. The dietitian tells me that is a fine way to get his fat source in and then I won't have to use as much oil. Until he is willing to eat more things with oil in it I guess we will have to let him eat butter. We definitely have to get used to a new way of thinking on this diet. I did get him to take in some oil yesterday when I gave him MAD hot cocoa and he drank it all so that was good. All of his Jello is mixed with whip cream (heavy cream that you whip into whip cream with a splash of sweetener) and that helps him get in his fat as well. We finally got his juice box of his Keto Cal drinks and he is taking in some of that, however not as much as he needs to. He is supposed to have two juice boxes a day and it is taking him about 1 day to drink 1 box. I suppose we will get there over time.
We met with the Dietitian again this week for a check-up. Joshua was down 3 pounds from the week and 1/2 prior, but that was to be expected with him not eating. His blood work revealed that he is getting acidotic which means he has increased acidity in his blood. This is a common side effect of the diet due to the accumulation of ketones. To combat this we were told to give him 1 full can of diet, caffeine-free soda per day with 1/8 tsp. of baking soda in it. Additionally, he is to have 1/8 tsp. of salt per day on his food. So, far he loves being able to have the soda and salt! The dietitian is also concerned about him being constipated as he had not had a BM in 1 week. She told us to start him on MiraLax once per day and we can mix that into his 1 can of soda with the baking soda. Since we started that on Wednesday he has gone once, but it is still not enough (she wants him going every day). I usually talk to the dietitian a couple times a week by phone and we go back in for our next check-up on June 1st.
Joshua vomited last night all over his bed and this is a common side effect as well due to the high fat content of the diet. I don't know if it was the fat that he had or just the fact that he had more to eat yesterday than he had in almost two weeks and his body just could not take it. Either way, it was gross! I hope this doesn't happen often, but I have heard it could (there is medication we can try to give for that as well if we need to). The dietitian told me that if his constipation and vomiting continue over the next two weeks then she will probably get Joshua referred to a Gastrointestinal Dr. at Mary Bridge. She said that is not uncommon for kids on the MAD diet. Oh, boy - one more Dr. (possibly) to see.
Also, this week we had a HORRIBLE time with his meds and we almost ended up in the hospital Sunday night to get his Depakote administered through an IV. I think I mentioned they changed manufacturers on us and Joshua started refusing the new kind. This led to a late night conversation with Dr. Korol on Sunday (Mother's Day) and a run to a 24 hour pharmacy in Tacoma to find another one. Dr. Korol said if he wouldn't take that one we would have to go to the hospital to get it administered through an IV because he CANNOT miss a dose! Luckily, he took the one we got from Tacoma after a LOT of prodding. I spent the week dealing with pharmacists and finding out about manufacturers (and paying over $100 out of pocket b/c insurance wouldn't cover since we already had filled the original prescription), but finally got everything settled. We are now back to the original Depakote and he is taking it with little issues. Phew!!!
Our daily "medicine" routine now consists of:
1) Depakote (3 pills twice a day, served with apple sauce)
2) Zonegran (1 pill twice a day, served with a liquid due to bitter taste)
3) Zarontin (liquid twice a day)
4) Multi-vitamin (once a day)
5) Calcium supplement (once a day)
6) Baking soda (once a day in diet soda)
7) 1/8 tsp. of salt on food through-out the day
8) MiraLax (once a day in diet soda)
9) Citra K - we do not have it yet, but need to get as it helps reduce chances of getting kidney stones which is a known side effect of the diet and of Zonegran.
So, I have saved the best for last! His seizures have drastically reduced!!!! Yeah! Double fist pump! We have not seen (knock on wood) an atonic (drop) or absence seizure in over 1 week. It is absolutely amazing when we were seeing these EVERY day. I was told to expect an increase in seizures over the first month, but we have had the opposite experience. One of the Mom's on my yahoo support group called him a "super responder" to the diet. I hope it's true. His Myoclonics still persist when he is falling asleep, but they have been drastically reduced. He is usually under 10 for the day and often times would be at 50 before. It is crazy! I'm very excited, but I am cautiously optimistic as tomorrow will be two weeks and we are still very early into this. I'm fearful this is just the honeymoon period and that they will slowly sneak back in, as that has happened when we added different medications. For now, I will take the reduction and am trying to just enjoy, although even that is hard as I'm still constantly looking at him waiting for one to happen. I suppose that will ease with time.
Joshua is also acting more like himself again (well as much as he can when he is on heavy drugs). Last week I didn't recognize him because he was so lethargic and out of it, but this week is so much better. As soon as he started eating he began to come around. He is only taking 1 nap a day now and is starting to play again. I have even seen him smile and laugh a few times - the best feeling EVER! I really was beginning to feel like I was losing my precious boy. He has been home with me the last two weeks, but I think next week we will try out sending him to daycare to see how that goes (I will be packing his lunch and snacks).
I also registered him for preschool today as he starts in two weeks (on June 1st!). Our IEP meeting is next Friday (May 25th) and we will get to meet his teacher, nurse, therapists, etc. and see his classroom. I'll be working on what I want to go in his IEP this week. I already emailed his teacher and told her all about Joshua's condition and gave her some "homework" reading on Doose Syndrome. :-) Hopefully by June 1st we will be further along on the diet and it won't be such an issue. He will only have snack there as it is only 2.5 hours so we will just be packing him a snack.
In other, unrelated, news Cole turned 7 last week! Chip was working so we had a low-key evening at home with just me and the boys and Joshua was pretty sick so we didn't go anywhere. Cole was a trooper! We bought him a new bike for his B-Day and it was sitting in the family room the morning of his B-day and he was so excited. He rode it as soon as we got home from school that afternoon. Cole's B-day party is tomorrow evening and it will be a few kids coming to our house for a few hours. Cole is excited! Also - Cole went to his support class (siblings of children with a chronic illness) and he really liked it. I think he liked having somewhere to go that was "just for him". He said he wants to go back, but unfortunately they don't have classes again until the fall. But, we will for sure go back when it starts again - I think he will really benefit from it.
I think that catches everyone up on the week. Phew!
Michelle
His ketones have gone down since he has started eating and were non existent yesterday which is not what we want so I had to analyze what I might be doing wrong to cause that. After consulting with my parent support group online the consensus was he is not getting in enough fat. So, now in addition to restricting his carbs I am pushing as much fat as I can. I try to cook everything in coconut oil, but he refuses most of those items so I have started giving him butter instead. As gross as it sounds, I have started to put a side of butter on his plate and he eats it straight. I have been giving him 15g of butter with every meal and snack today and he eats it up. The dietitian tells me that is a fine way to get his fat source in and then I won't have to use as much oil. Until he is willing to eat more things with oil in it I guess we will have to let him eat butter. We definitely have to get used to a new way of thinking on this diet. I did get him to take in some oil yesterday when I gave him MAD hot cocoa and he drank it all so that was good. All of his Jello is mixed with whip cream (heavy cream that you whip into whip cream with a splash of sweetener) and that helps him get in his fat as well. We finally got his juice box of his Keto Cal drinks and he is taking in some of that, however not as much as he needs to. He is supposed to have two juice boxes a day and it is taking him about 1 day to drink 1 box. I suppose we will get there over time.
We met with the Dietitian again this week for a check-up. Joshua was down 3 pounds from the week and 1/2 prior, but that was to be expected with him not eating. His blood work revealed that he is getting acidotic which means he has increased acidity in his blood. This is a common side effect of the diet due to the accumulation of ketones. To combat this we were told to give him 1 full can of diet, caffeine-free soda per day with 1/8 tsp. of baking soda in it. Additionally, he is to have 1/8 tsp. of salt per day on his food. So, far he loves being able to have the soda and salt! The dietitian is also concerned about him being constipated as he had not had a BM in 1 week. She told us to start him on MiraLax once per day and we can mix that into his 1 can of soda with the baking soda. Since we started that on Wednesday he has gone once, but it is still not enough (she wants him going every day). I usually talk to the dietitian a couple times a week by phone and we go back in for our next check-up on June 1st.
Joshua vomited last night all over his bed and this is a common side effect as well due to the high fat content of the diet. I don't know if it was the fat that he had or just the fact that he had more to eat yesterday than he had in almost two weeks and his body just could not take it. Either way, it was gross! I hope this doesn't happen often, but I have heard it could (there is medication we can try to give for that as well if we need to). The dietitian told me that if his constipation and vomiting continue over the next two weeks then she will probably get Joshua referred to a Gastrointestinal Dr. at Mary Bridge. She said that is not uncommon for kids on the MAD diet. Oh, boy - one more Dr. (possibly) to see.
Also, this week we had a HORRIBLE time with his meds and we almost ended up in the hospital Sunday night to get his Depakote administered through an IV. I think I mentioned they changed manufacturers on us and Joshua started refusing the new kind. This led to a late night conversation with Dr. Korol on Sunday (Mother's Day) and a run to a 24 hour pharmacy in Tacoma to find another one. Dr. Korol said if he wouldn't take that one we would have to go to the hospital to get it administered through an IV because he CANNOT miss a dose! Luckily, he took the one we got from Tacoma after a LOT of prodding. I spent the week dealing with pharmacists and finding out about manufacturers (and paying over $100 out of pocket b/c insurance wouldn't cover since we already had filled the original prescription), but finally got everything settled. We are now back to the original Depakote and he is taking it with little issues. Phew!!!
Our daily "medicine" routine now consists of:
1) Depakote (3 pills twice a day, served with apple sauce)
2) Zonegran (1 pill twice a day, served with a liquid due to bitter taste)
3) Zarontin (liquid twice a day)
4) Multi-vitamin (once a day)
5) Calcium supplement (once a day)
6) Baking soda (once a day in diet soda)
7) 1/8 tsp. of salt on food through-out the day
8) MiraLax (once a day in diet soda)
9) Citra K - we do not have it yet, but need to get as it helps reduce chances of getting kidney stones which is a known side effect of the diet and of Zonegran.
So, I have saved the best for last! His seizures have drastically reduced!!!! Yeah! Double fist pump! We have not seen (knock on wood) an atonic (drop) or absence seizure in over 1 week. It is absolutely amazing when we were seeing these EVERY day. I was told to expect an increase in seizures over the first month, but we have had the opposite experience. One of the Mom's on my yahoo support group called him a "super responder" to the diet. I hope it's true. His Myoclonics still persist when he is falling asleep, but they have been drastically reduced. He is usually under 10 for the day and often times would be at 50 before. It is crazy! I'm very excited, but I am cautiously optimistic as tomorrow will be two weeks and we are still very early into this. I'm fearful this is just the honeymoon period and that they will slowly sneak back in, as that has happened when we added different medications. For now, I will take the reduction and am trying to just enjoy, although even that is hard as I'm still constantly looking at him waiting for one to happen. I suppose that will ease with time.
Joshua is also acting more like himself again (well as much as he can when he is on heavy drugs). Last week I didn't recognize him because he was so lethargic and out of it, but this week is so much better. As soon as he started eating he began to come around. He is only taking 1 nap a day now and is starting to play again. I have even seen him smile and laugh a few times - the best feeling EVER! I really was beginning to feel like I was losing my precious boy. He has been home with me the last two weeks, but I think next week we will try out sending him to daycare to see how that goes (I will be packing his lunch and snacks).
I also registered him for preschool today as he starts in two weeks (on June 1st!). Our IEP meeting is next Friday (May 25th) and we will get to meet his teacher, nurse, therapists, etc. and see his classroom. I'll be working on what I want to go in his IEP this week. I already emailed his teacher and told her all about Joshua's condition and gave her some "homework" reading on Doose Syndrome. :-) Hopefully by June 1st we will be further along on the diet and it won't be such an issue. He will only have snack there as it is only 2.5 hours so we will just be packing him a snack.
In other, unrelated, news Cole turned 7 last week! Chip was working so we had a low-key evening at home with just me and the boys and Joshua was pretty sick so we didn't go anywhere. Cole was a trooper! We bought him a new bike for his B-Day and it was sitting in the family room the morning of his B-day and he was so excited. He rode it as soon as we got home from school that afternoon. Cole's B-day party is tomorrow evening and it will be a few kids coming to our house for a few hours. Cole is excited! Also - Cole went to his support class (siblings of children with a chronic illness) and he really liked it. I think he liked having somewhere to go that was "just for him". He said he wants to go back, but unfortunately they don't have classes again until the fall. But, we will for sure go back when it starts again - I think he will really benefit from it.
I think that catches everyone up on the week. Phew!
Michelle
Saturday, May 12, 2012
1 Week on MAD
We have made
it to the one week mark. Joshua is still
not really eating and is very lethargic/sleepy.
I can see he is making very little strides, but it is not much. Yesterday he had 2 bites of eggs, 1 PB ball
and 3 little slices of apple. Today he
had 1 little mandarin orange slice at lunch and asked for a string cheese. He ate a little of the string cheese and then
spit most of it back out. For dinner he
had some green beans, but then spit most of it back out. I don't know how much he actually ate. I am taking it as a good sign that he is at
least picking up his fork and eating a very small amount.
He is
drinking which is good. He is having
some Glucerna (low carb drink suggested by my pediatrician) and the PowerAde Zero. He is urinating 2-3 times per day which
my pediatrician said was okay. I have checked his
ketones every day and they are in the 80-160 range which is where we want them.
The most
amazing thing is that his seizures are going away before my very eyes!!!! We have not seen a drop attack since Monday
afternoon and haven't seen an absence since Wednesday. His Myos are still happening, but drastically
reduced from about 30-40 (at bed time for example) to an average of about 11, but
last night was only 4. I can hardly
believe it!! With every passing day I
begin to think this is not a coincidence and this could really work.
But, I have
to get him to eat. I don't want to give
up and am not going to, but don't know how long docs will let me continue on in
this manner (so far they have been great).
My neurologist even gave me her home # last night as she was worried about me
getting a hold of someone if he got worse over the weekend. I am lucky she is our doctor.
I am
delighted by the seizure reduction, but unbelievably frustrated with the food
intake. Apparently we have one stubborn
boy!
And, just to add insult to injury, we got a new type of Depakote (pharmacy changed manufacturers) and he hates them! He has started spitting them out and we have tried everything. I know he got barely any of his night time dose tonight. I'm a bit freaked about that as you are not supposed to stop taking the meds and I don't his seizures to increase. I am thinking I need to find a pharmacy that uses the same manufacturer that my pharmacy was using before, but I probably can't do that until Monday. I am not sure what to do in the mean time. I really wish we could catch a break!
Michelle
P.S. Happy Mother's Day out there to all of the wonderful mothers I know. And, a special thanks to my unbelievably awesome Mom who has helped us out tremendously over the last several months by coming to my house multiple times a week to help us. I love you, Mom!
Wednesday, May 9, 2012
Diet Not Going So Well
Today was Day # 5 and things have gotten worse since my last post. Joshua refused to eat completely on Monday and Tuesday and even started to refuse drinking liquids. I was able to get some low carb hot cocoa down him twice on Monday (it is made with heavy whipping cream, oil, unsweetened cocoa, & almond milk), however after the second time he threw some of it up so I don't know how much he really got in his system. He did not eat anything solid on Monday at all and slept almost all day. Yesterday he did almost the exact same thing - refused to eat everything and I only got a little bit of cocoa down him before he started refusing that too. Last night I got a little bit of broccoli down him, but he started gagging and threw that up as well.
I talked to our neurologist's nurse on Tuesday and they told me I should have him seen by the Pediatrician right away to get him checked out due to possible dehydration and other issues. I wanted to wait until this morning to take him in because I wanted to see his regular Dr. (Dr. Hendrie) who knows about his condition and what we are trying to do, but the neuro nurse insisted we see a Dr. yesterday and I could not get in to see her, so settled for another doc. The other doc was not too helpful, but to tell us that Joshua was a little dehydrated, but not enough to admit him to the hospital for IV fluids. So, I kept the appt. with Dr. Hendrie for today.
We saw Dr. Hendrie today and she said that physically he is fine other than being a little dehydrated, but not to a dangerous level where he needs to be admitted yet. His sleepiness and lethargy is all due to him not eating and getting into a ketosis state (she assumed he was because he is not eating) and ketosis is what we want him in to reduce seizures. Dr. Hendrie encouraged us to not give in and give him what he wants (his regular food) as he is physically okay and she thinks he is just doing a power struggle against us and she has never seen a kid starve themselves before. Basically, she thinks he will eventually start eating. But, how do we keep him safe in the mean time? Well, push the fluids and she wants me to give him Glucerna which is a drink supplement for diabetics so it is low in carbs and has nutrients, vitamins, calories, etc. that can sustain him. So, I picked the Glucerna up today and at first he refused. But, my Mom got him to drink about 1/2 of one bottle this evening so that is a start! My Mom also got him to eat 1 tsp of peanut butter and two small slices of a banana. We stayed within his carb count for the day so we were okay and he ate just a little. Perhaps this is the start? We'll see what tomorrow brings. I have to check in with Dr. Hendrie every day to report his status so she knows if we need to bring him back in for evaluation or admit him. I'm doing everything I can to avoid having him admitted to the hospital for IV fluids and tube feeding.
I also talked to his neurologist today and she was supportive of us continuing on this path as he is not in immediate danger and she thinks the rewards will be worth it. She is also going to check in with us every day to monitor his progress. The Dietitian wants us to get his blood drawn tomorrow so she can check everything out so another trip to Dr. office tomorrow (will make 3 in 3 days). Unfortunately, I am getting used to these types of weeks.
There is some good news. I think (stress the think) that Joshua's seizures are already reducing due to him being in ketosis. We have not seen an Atonic (head drop) since Monday and we only saw one that day and one on Sunday (we typically see 3-5 of those per days). We have seen less absence (staring) seizures as we only saw 1 today. Also, his Myoclonics seem to be reducing. Typically at night he will have 30-40 of these and last night I only counted 11. Chip said when Joshua fell asleep with him today he did not count any!!! I didn't get to count tonight as Joshua fell asleep in the car, but I will check tomorrow night. I am trying not to get too excited by this as it could be a coincidence or we could see it go back up when he starts eating or it could be short lived, but it is hard not to think about the possibilities if this really does work.
The other bit of good news is that we know Joshua is in ketosis as I bought ketone strips at the pharmacy and when he finally went pee tonight (only time all day) I was able to get a sample. The strip showed that he was in ketosis. Of course, him not eating is NOT the way we want him to get in ketosis, but it shows that when he is in ketosis we can see some reductions. So, this gives me hope that this path is worth continuing on despite how unbelievable awful the last several days have been. I really want to push through as I feel something good will be on the other side. I just hope Joshua will start eating and we can get into ketosis the correct (and healthy) way.
I knew this diet would be difficult and we would have our struggles, but I did not expect Joshua to completely shut down and stop eating. This has been harder than I thought it would and watching him be hungry, sick, have stomach pain, be so lethargic he can't play, sleepy, etc. is sooooooo hard! I don't want to fix one problem and create another one, but I am trying to have faith that we will get there and it will be worth it in the end.
Thanks everyone for all the support - I really appreciate it!!!
I talked to our neurologist's nurse on Tuesday and they told me I should have him seen by the Pediatrician right away to get him checked out due to possible dehydration and other issues. I wanted to wait until this morning to take him in because I wanted to see his regular Dr. (Dr. Hendrie) who knows about his condition and what we are trying to do, but the neuro nurse insisted we see a Dr. yesterday and I could not get in to see her, so settled for another doc. The other doc was not too helpful, but to tell us that Joshua was a little dehydrated, but not enough to admit him to the hospital for IV fluids. So, I kept the appt. with Dr. Hendrie for today.
We saw Dr. Hendrie today and she said that physically he is fine other than being a little dehydrated, but not to a dangerous level where he needs to be admitted yet. His sleepiness and lethargy is all due to him not eating and getting into a ketosis state (she assumed he was because he is not eating) and ketosis is what we want him in to reduce seizures. Dr. Hendrie encouraged us to not give in and give him what he wants (his regular food) as he is physically okay and she thinks he is just doing a power struggle against us and she has never seen a kid starve themselves before. Basically, she thinks he will eventually start eating. But, how do we keep him safe in the mean time? Well, push the fluids and she wants me to give him Glucerna which is a drink supplement for diabetics so it is low in carbs and has nutrients, vitamins, calories, etc. that can sustain him. So, I picked the Glucerna up today and at first he refused. But, my Mom got him to drink about 1/2 of one bottle this evening so that is a start! My Mom also got him to eat 1 tsp of peanut butter and two small slices of a banana. We stayed within his carb count for the day so we were okay and he ate just a little. Perhaps this is the start? We'll see what tomorrow brings. I have to check in with Dr. Hendrie every day to report his status so she knows if we need to bring him back in for evaluation or admit him. I'm doing everything I can to avoid having him admitted to the hospital for IV fluids and tube feeding.
I also talked to his neurologist today and she was supportive of us continuing on this path as he is not in immediate danger and she thinks the rewards will be worth it. She is also going to check in with us every day to monitor his progress. The Dietitian wants us to get his blood drawn tomorrow so she can check everything out so another trip to Dr. office tomorrow (will make 3 in 3 days). Unfortunately, I am getting used to these types of weeks.
There is some good news. I think (stress the think) that Joshua's seizures are already reducing due to him being in ketosis. We have not seen an Atonic (head drop) since Monday and we only saw one that day and one on Sunday (we typically see 3-5 of those per days). We have seen less absence (staring) seizures as we only saw 1 today. Also, his Myoclonics seem to be reducing. Typically at night he will have 30-40 of these and last night I only counted 11. Chip said when Joshua fell asleep with him today he did not count any!!! I didn't get to count tonight as Joshua fell asleep in the car, but I will check tomorrow night. I am trying not to get too excited by this as it could be a coincidence or we could see it go back up when he starts eating or it could be short lived, but it is hard not to think about the possibilities if this really does work.
The other bit of good news is that we know Joshua is in ketosis as I bought ketone strips at the pharmacy and when he finally went pee tonight (only time all day) I was able to get a sample. The strip showed that he was in ketosis. Of course, him not eating is NOT the way we want him to get in ketosis, but it shows that when he is in ketosis we can see some reductions. So, this gives me hope that this path is worth continuing on despite how unbelievable awful the last several days have been. I really want to push through as I feel something good will be on the other side. I just hope Joshua will start eating and we can get into ketosis the correct (and healthy) way.
I knew this diet would be difficult and we would have our struggles, but I did not expect Joshua to completely shut down and stop eating. This has been harder than I thought it would and watching him be hungry, sick, have stomach pain, be so lethargic he can't play, sleepy, etc. is sooooooo hard! I don't want to fix one problem and create another one, but I am trying to have faith that we will get there and it will be worth it in the end.
Thanks everyone for all the support - I really appreciate it!!!
Monday, May 7, 2012
First Two Days on MAD Diet
Well, the first two days on MAD have been completed and the good news is that we survived. The bad news is that Joshua refused to eat most things resulting in him being hungry, irritable and lethargic.
Saturday morning I made him scrambled eggs w/ cheese, cantaloupe w/ whip cream (heavy whipping cream that you mix into whip cream) and "milk" (heavy whipping cream diluted with water and some liquid sweetener). He refused to eat everything and it took me about 45 minutes to prepare and weigh everything. For lunch I made him a hot dog and he ate about 1/2 of it, but nothing else. For dinner I made him a Keto pizza and he took one bite of it and spit it out. It took me an hour to make his pizza. We ended up giving him chicken and he ate some of that, but refused everything else (green beans & "milk"). He even refused to eat his Keto ice cream which I thought he would like as it's a good way to get them to eat their cream.
This morning I gave Joshua low carb pancakes that we made yesterday that took a lot of time. Joshua took one bite and promptly spit them out and refused to eat anything else. I asked him if he wanted eggs or any thing else and every time I was told "no". Two mornings in a row with nothing to eat. I did get him to eat a snack today of Sugar-Free Jell-O and whip cream (to get some fat). For lunch today we tried Low carb mac & cheese which is with "Miracle Noodles" that have zero carbs and calories. I made a low carb cheese sauce to go on top and thought he would really like it. At first he would not even try it, but after a lot of prompting we finally got him to taste the sauce. He liked that so had a little bit of the mac & cheese, but not a lot. We did get him to eat a bunch of fresh mandarin oranges today and that is where most of his carbs came from today. For dinner I made hamburgers with cheese (no bun), broccoli and carrots. I think he only had 1 or 2 bites of the hamburger, but did eat the broccoli. He took a carrot, but spit it out (not sure what that is about because he likes carrots). I am not sure if his taste buds are changing due to the meds. I made Keto root beer floats for desert, but he fell asleep on the couch while waiting so he didn't get to try them. But, Cole and Mom gave them a big thumb's up.
I spent all weekend cooking and planning and don't have a lot to show for it as he didn't eat much and spit out the stuff that took a long time to make, but I will keep trying! Joshua was REALLY lethargic, sleepy and loopy today and I was told to expect that in the beginning as their bodies adjust and I'm sure the meds have a bigger affect on him when he is not eating. He also complained a lot that his stomach was upset (again, probably from meds on an empty stomach). He didn't want to do anything and was so tired. We took him to the park and he didn't want to play - he just sat in my lap and snuggled. We took a walk and he could not walk far at all - I had to carry him for part of it. I hope one day I will get my obnoxious, full of life little boy back. I think back to December and how he was and it is hard for me to see where he is now. I just don't know how all this happened and I'm staring at a boy who can hardly make it for a quick walk and I don't understand it. I hope the diet is the key to getting him back.
His meds are also different as the Zonegran was a liquid and is now a capsule that has to be put into a drink and in order to do that we had to increase it a little. Our neurologist also increased his Zarontin dosage to 4 MLs twice a day and wants to go to 5 MLs starting next week. The Zarontin is also a liquid, but we cannot change over until he learns to swallow pills, which she wants us to teach him over the next couple weeks (sigh - one more thing to do). His Depakote is staying the same (for now).
He did take his multi-vitamin (thank goodness), but I still need to get his Calcium and Citra K (to help with kidney stone). I need a bigger pill box for him now as there is so many to take daily between the meds and the all the vitamins.
I was supposed to take him to school tomorrow, but not sure I can with how he is feeling. I am also afraid he will be so hungry he will take someone else's food at snack time or lunch. I will figure out in the morning how I am feeling and decide if I am going to take him or keep him home and try to work at home. Chip is on 12 hour shifts this week so he cannot watch him like he normally does.
Right now the computer program and all the numbers are so overwhelming and the Dietitian told me to concentrate on his carbs so right now my #1 priority is to keep his carb count where it needs to be for the day and see where the other numbers fall out while I get a handle on it. I am also trying to push the fat through the cream, but we are not even close to where we need to be, but we will get there. I also don't have the Keto Cal yet so will be ordering tomorrow and will start as soon as we get it (I have to call a special number to order it and hope that my prescription has been processed for it).
I hope to report next week that things got easier because he got hungry and started eating.
Michelle
Saturday morning I made him scrambled eggs w/ cheese, cantaloupe w/ whip cream (heavy whipping cream that you mix into whip cream) and "milk" (heavy whipping cream diluted with water and some liquid sweetener). He refused to eat everything and it took me about 45 minutes to prepare and weigh everything. For lunch I made him a hot dog and he ate about 1/2 of it, but nothing else. For dinner I made him a Keto pizza and he took one bite of it and spit it out. It took me an hour to make his pizza. We ended up giving him chicken and he ate some of that, but refused everything else (green beans & "milk"). He even refused to eat his Keto ice cream which I thought he would like as it's a good way to get them to eat their cream.
This morning I gave Joshua low carb pancakes that we made yesterday that took a lot of time. Joshua took one bite and promptly spit them out and refused to eat anything else. I asked him if he wanted eggs or any thing else and every time I was told "no". Two mornings in a row with nothing to eat. I did get him to eat a snack today of Sugar-Free Jell-O and whip cream (to get some fat). For lunch today we tried Low carb mac & cheese which is with "Miracle Noodles" that have zero carbs and calories. I made a low carb cheese sauce to go on top and thought he would really like it. At first he would not even try it, but after a lot of prompting we finally got him to taste the sauce. He liked that so had a little bit of the mac & cheese, but not a lot. We did get him to eat a bunch of fresh mandarin oranges today and that is where most of his carbs came from today. For dinner I made hamburgers with cheese (no bun), broccoli and carrots. I think he only had 1 or 2 bites of the hamburger, but did eat the broccoli. He took a carrot, but spit it out (not sure what that is about because he likes carrots). I am not sure if his taste buds are changing due to the meds. I made Keto root beer floats for desert, but he fell asleep on the couch while waiting so he didn't get to try them. But, Cole and Mom gave them a big thumb's up.
I spent all weekend cooking and planning and don't have a lot to show for it as he didn't eat much and spit out the stuff that took a long time to make, but I will keep trying! Joshua was REALLY lethargic, sleepy and loopy today and I was told to expect that in the beginning as their bodies adjust and I'm sure the meds have a bigger affect on him when he is not eating. He also complained a lot that his stomach was upset (again, probably from meds on an empty stomach). He didn't want to do anything and was so tired. We took him to the park and he didn't want to play - he just sat in my lap and snuggled. We took a walk and he could not walk far at all - I had to carry him for part of it. I hope one day I will get my obnoxious, full of life little boy back. I think back to December and how he was and it is hard for me to see where he is now. I just don't know how all this happened and I'm staring at a boy who can hardly make it for a quick walk and I don't understand it. I hope the diet is the key to getting him back.
His meds are also different as the Zonegran was a liquid and is now a capsule that has to be put into a drink and in order to do that we had to increase it a little. Our neurologist also increased his Zarontin dosage to 4 MLs twice a day and wants to go to 5 MLs starting next week. The Zarontin is also a liquid, but we cannot change over until he learns to swallow pills, which she wants us to teach him over the next couple weeks (sigh - one more thing to do). His Depakote is staying the same (for now).
He did take his multi-vitamin (thank goodness), but I still need to get his Calcium and Citra K (to help with kidney stone). I need a bigger pill box for him now as there is so many to take daily between the meds and the all the vitamins.
I was supposed to take him to school tomorrow, but not sure I can with how he is feeling. I am also afraid he will be so hungry he will take someone else's food at snack time or lunch. I will figure out in the morning how I am feeling and decide if I am going to take him or keep him home and try to work at home. Chip is on 12 hour shifts this week so he cannot watch him like he normally does.
Right now the computer program and all the numbers are so overwhelming and the Dietitian told me to concentrate on his carbs so right now my #1 priority is to keep his carb count where it needs to be for the day and see where the other numbers fall out while I get a handle on it. I am also trying to push the fat through the cream, but we are not even close to where we need to be, but we will get there. I also don't have the Keto Cal yet so will be ordering tomorrow and will start as soon as we get it (I have to call a special number to order it and hope that my prescription has been processed for it).
I hope to report next week that things got easier because he got hungry and started eating.
Michelle
Thursday, May 3, 2012
Preschool
We had our 2nd appointment today with the school district and Joshua did qualify for the special education (Child Find) preschool program. He will be starting on June 1st at Wildwood Elementary, which means he will only get two weeks in this year, but at least we can get him started. They qualified him in speech/communication, gross motor skills (PT), fine motor skills (OT) and learning/cognition.
The teachers said that some of the tests were inconclusive because he had such poor focus and little attention span, but they qualified him so he would be guaranteed to get the services. They suggested that one of his goals be to work on his focus and "staying on task" because it is not where it should be. We are not sure if it is his disorder or the meds (or both) causing the issue, but either way it is impacting him. This also matches what the neuro psychologist said as he had a hard time getting Joshua to focus and work on a particular task.
We have to do the following prior to June 1st so that he can attend:
1) Register him at the school, which includes filling out a bunch of paperwork, bringing in his birth certificate, etc.
2) Get his shots up to date (he is missing his chicken pox shot because our pediatrician has been out of it the last few times we have been in to get it)
3) Have Individual Education Plan (IEP) meeting with his teacher, school nurse and therapists for the disciplines listed above. In this meeting we will all agree on his goals for them to work with him on during preschool.
4) Have neurologist sign off on paperwork for his emergency rescue medicine Diastat in case it has to be administered at school.
5) Fill out medical action plan and then meet with school nurse to review and finalize so we have an action plan on file for his seizures and medications.
6) Fill out paperwork regarding his diet restrictions so they know they cannot give him any food or drinks at school.
We got him into a morning class which we were excited about because he has to have his nap (or he has more seizures) and he is just not as attentive in the afternoons as he gets tired very easily. They worked with us to get him into a morning class. They also put him in a school with a nurse on staff every day (due to his medical needs) so that helped alleviate some of my fears. They also told me that they have other kids with epilepsy who also have rescue meds at that school and the teacher is familiar with it so that should help. I'm sure I will have to educate her on Doose Syndrome and his specific type of seizures, but it's a great start.
Overall, I am glad he got in so he can get the help he needs, but just sad that he needs the services in the first place.
Michelle
The teachers said that some of the tests were inconclusive because he had such poor focus and little attention span, but they qualified him so he would be guaranteed to get the services. They suggested that one of his goals be to work on his focus and "staying on task" because it is not where it should be. We are not sure if it is his disorder or the meds (or both) causing the issue, but either way it is impacting him. This also matches what the neuro psychologist said as he had a hard time getting Joshua to focus and work on a particular task.
We have to do the following prior to June 1st so that he can attend:
1) Register him at the school, which includes filling out a bunch of paperwork, bringing in his birth certificate, etc.
2) Get his shots up to date (he is missing his chicken pox shot because our pediatrician has been out of it the last few times we have been in to get it)
3) Have Individual Education Plan (IEP) meeting with his teacher, school nurse and therapists for the disciplines listed above. In this meeting we will all agree on his goals for them to work with him on during preschool.
4) Have neurologist sign off on paperwork for his emergency rescue medicine Diastat in case it has to be administered at school.
5) Fill out medical action plan and then meet with school nurse to review and finalize so we have an action plan on file for his seizures and medications.
6) Fill out paperwork regarding his diet restrictions so they know they cannot give him any food or drinks at school.
We got him into a morning class which we were excited about because he has to have his nap (or he has more seizures) and he is just not as attentive in the afternoons as he gets tired very easily. They worked with us to get him into a morning class. They also put him in a school with a nurse on staff every day (due to his medical needs) so that helped alleviate some of my fears. They also told me that they have other kids with epilepsy who also have rescue meds at that school and the teacher is familiar with it so that should help. I'm sure I will have to educate her on Doose Syndrome and his specific type of seizures, but it's a great start.
Overall, I am glad he got in so he can get the help he needs, but just sad that he needs the services in the first place.
Michelle
Tuesday, May 1, 2012
Meeting with Dietitian
Well, if there is word to describe our meeting with the dietitian today it would be overwhelmed! Holy Cow - lots of information and numbers! Our appt. was scheduled for 1 hour and it lasted 2.5 and probably could have gone longer had she not had to run. Joy is our dietitian and she was great and was "on the ball" from the beginning and was very fast paced (which I liked). There is too much information that we received to share everything, but here is an overview of what Joshua will be required to eat everyday.
1) 2 KetoCal drinks per day (these are specific drinks for people on the Keto diet and from what I am told are kind of like a milk consistency). We have to purchase these from a special website and are extremely expensive.
2) 90 Grams of Fruit (only certain ones allowed) per day
3) 90 Grams of Vegetables (only certain ones allowed) per day. Note: 90 grams is not much!
4) 2 teaspoons of coconut oil 3 times a day
5) 115 grams of heavy cream per day (either drink it or mixed into a recipe)
6) 21 grams of protein per day minimum
7) 129 grams of Fat per day minimum
8) No more than 21 grams of carbs per day
9) Calorie goal - 1,342 calories per day
10) 49 oz. (6 cups) of water per day
In addition he is being put on a multi-vitamin supplement (sugar free), Calcium vitamin and Phosphorus. We ordered the multi-vitamin online, but still need the other two. We also have to get his seizure meds changed over to non-carb/sugar substances, but don't know yet how that is going to work. We also had to go buy low/no carb/sugar products such as toothpaste, soap, shampoo, sunscreen, cough medicine, ointment, etc. because these products can be absorbed through the skin and can add unwanted carbs to the patient and cause them to get out of a state of ketosis (therefore causing seizures). Who knew!?!? I find that kind of fascinating...
We came home and tried to put some meals together in the online tool (Keto Calculator), but it proved difficult to find the right meals to equal out the right amount of everything for each day (took us an hour to calculate 1 breakfast and 1 snack). When the book says you do not have to weigh anything on MAD they were wrong! From what we found out today MAD is just like Keto except it is a lower ratio than Keto and you can have a bit more food. Instead of trying to figure out how to do all the calculations tonight we decided to brain storm meal ideas and then tomorrow put those in the tool and then tweak the recipes to meet his numbers. I think that will be easier (I hope!).
We are going to start this Saturday and I'm a nervous wreck about it!!! But, I want to start so we can hopefully see seizure reduction faster. Chip unfortunately is working 12 hour shifts from 3PM - 3AM the first 10 days we are on the diet so that makes me even more nervous. My Mom is going to come over this weekend and help me do some planning and cooking and help me power through my first few days. Thanks, Mom!!!
I will post this weekend about how our first few days are going and how he is handling the new foods we are giving to him. I'm sure it will prove to be an exhausting weekend.
Tomorrow morning is our appt. with the school district for placement into special education preschool. I will post tomorrow night the results as we should know tomorrow if he will be put into the preschool or not and if he will start this year or in the fall.
I'm exhausted after a long day and am going to bed!
Michelle
1) 2 KetoCal drinks per day (these are specific drinks for people on the Keto diet and from what I am told are kind of like a milk consistency). We have to purchase these from a special website and are extremely expensive.
2) 90 Grams of Fruit (only certain ones allowed) per day
3) 90 Grams of Vegetables (only certain ones allowed) per day. Note: 90 grams is not much!
4) 2 teaspoons of coconut oil 3 times a day
5) 115 grams of heavy cream per day (either drink it or mixed into a recipe)
6) 21 grams of protein per day minimum
7) 129 grams of Fat per day minimum
8) No more than 21 grams of carbs per day
9) Calorie goal - 1,342 calories per day
10) 49 oz. (6 cups) of water per day
In addition he is being put on a multi-vitamin supplement (sugar free), Calcium vitamin and Phosphorus. We ordered the multi-vitamin online, but still need the other two. We also have to get his seizure meds changed over to non-carb/sugar substances, but don't know yet how that is going to work. We also had to go buy low/no carb/sugar products such as toothpaste, soap, shampoo, sunscreen, cough medicine, ointment, etc. because these products can be absorbed through the skin and can add unwanted carbs to the patient and cause them to get out of a state of ketosis (therefore causing seizures). Who knew!?!? I find that kind of fascinating...
We came home and tried to put some meals together in the online tool (Keto Calculator), but it proved difficult to find the right meals to equal out the right amount of everything for each day (took us an hour to calculate 1 breakfast and 1 snack). When the book says you do not have to weigh anything on MAD they were wrong! From what we found out today MAD is just like Keto except it is a lower ratio than Keto and you can have a bit more food. Instead of trying to figure out how to do all the calculations tonight we decided to brain storm meal ideas and then tomorrow put those in the tool and then tweak the recipes to meet his numbers. I think that will be easier (I hope!).
We are going to start this Saturday and I'm a nervous wreck about it!!! But, I want to start so we can hopefully see seizure reduction faster. Chip unfortunately is working 12 hour shifts from 3PM - 3AM the first 10 days we are on the diet so that makes me even more nervous. My Mom is going to come over this weekend and help me do some planning and cooking and help me power through my first few days. Thanks, Mom!!!
I will post this weekend about how our first few days are going and how he is handling the new foods we are giving to him. I'm sure it will prove to be an exhausting weekend.
Tomorrow morning is our appt. with the school district for placement into special education preschool. I will post tomorrow night the results as we should know tomorrow if he will be put into the preschool or not and if he will start this year or in the fall.
I'm exhausted after a long day and am going to bed!
Michelle
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