Yesterday we met with Joshua's team of teachers at his school to discuss his progress and the plan for next year. It was a full room with his teacher, speech therapist, occupational therapist, physical therapist and school psychologist.
The good news is that they have graduated Joshua from physical therapy and speech therapy so he will no longer receive those services at school. On his testing he scored within the "normal" range and has met all of his IEP goals for the year in those two areas. This is consistent with the reports we have received from him private speech and physical therapists so I'm glad to see everyone is on the same page.
He will still qualify for services next year for cognitive, adaptive, reading, math, and fine motor skills. He still has a lot of short term memory and expressive skills issues that are making school difficult for him. He can only identify 1 letter of the alphabet and 1 number despite working on it all year. He cannot identify the letters in his name, not even the "J" after repeatedly working on it. In addition, he cannot follow directions from his teachers without being shown the activity and be given a lot of visual cues and help. Once he is shown how to do something a few times and witnesses it, he can then usually do the activity. However, for simple tasks the expectation in Kindergarten is that he can be told to do something and he can follow the directions - unfortunately he is not there yet. In addition, he still sometimes shuts down in class, refusing to participate or sits out by himself. He also still has low energy days at school where he won't engage.
Based on all of the above (and a few other things) they have recommended that Joshua attend Developmental Kindergarten instead of General Education Kindergarten. Although this was exactly what I expected based on earlier discussions with his teacher, it is still hard to hear the difficulties he continues to have at school when it is read aloud to you. I'm glad of the recommendation though because he does need the extra help and I think General Ed Kindergarten would have been way too difficult and stressful for him. He will be going to another new school next year as the program is in a different school with a different teacher. This will be a very difficult transition for him and I'm not looking forward to making the change either. He absolutely loves his teacher (Ms. Janet) and we do too so it will be hard to leave her. She has been so amazing to our Joshua and I'll be sad she won't be teaching him anymore. Ms. Janet will be setting up a time to take us to the new school to meet the new teacher and see his new classroom which will be great. I have a lot to update his new teacher on regarding the diet and his condition. I'm happy though that her classroom size will be very small (approx. 9 kids), she will have a para educator and she has a special education degree just like his current teacher.
I'm glad we had the meeting and that we now have the plan for next year as it has been weighing heavily on me. I'm a planner so I feel better just having a plan and knowing where he will be at next year. I'm extremely thankful for the great programs in our school district and that Joshua is able to get the help he needs.
Friday, April 26, 2013
Cheating..........and Seizures (we made it to 50 days)
We have been having a hard time lately keeping Joshua from cheating. He has been getting up very early in the morning before Chip and I are awake and getting into the refrigerator and eating whatever he can find. It is so unbelievably frustrating when we try so hard all day to keep him on his diet foods. We try to explain "why" he is on the diet, but I really don't think he understands. Since his seizures have only been in his sleep for so long I don't think he even knows he has them so he probably doesn't think anything bad happens if he cheats. It is weird because sometimes he can be so good and will find a piece of food on the floor and pick it up and hand it to me and say "I can't eat that", but then he will turn around and try to take food off of one of our plates.
I can't fully explain the heartache it causes to deny your own child food or to physically wrestle food they cannot have out of their hands, even when you know it is for their own health benefit. I often don't talk about it because I am so thankful for the diet and I KNOW it is saving him, but sometimes it is difficult. I think about what it will be like in the future (someday) to let him eat anything he wants and be able to take him out for ice cream. I know that sounds like stupid things, but when you cannot do it anymore, it is hard. I don't think anyone can fully grasp a change like this until they are faced with it and deal with it every day.
Although Joshua is 5 we have to treat him like a baby and not let him out of our sight. We can't even go to the restroom without making sure someone can watch him because he may try to sneak food. The minute I hear a bedroom door close I go running because usually that means Joshua has gotten into something and is hiding. It is a strange fear to live with, I have to say. Our cupboards are locked so he cannot get into the food and that has worked well. However, the refrigerator has not been as successful (Joshua has broken off two sets of locks already). We are now contemplating getting a bike lock and putting that on the fridge at night so he cannot get into food while we are sleeping. These are not thoughts that most parents have, but it is a reality in our house.
All of Joshua's cheating caught up with him last night when he had 11 seizures when I put him to bed. I was not surprised at all due to the cheating, but it was still heart-breaking. Our last seizure free stint was 44 days and this one was 50. I hope someday we will have longer stints, but it just did not happen this time. Today we started over. He is in such a better place than he was a year ago so I should be nothing but thankful, but yet, it crushes me every time he breaks his seizure free stints. I cringe knowing that his brain still knows how to seize and that he is not healed yet. I hope that one day his brain will be completely healed and this will all be behind us. I can't describe what it feels like to hold your child in your arms and watch/feel them have continuous seizures - I don't think it is something that will ever leave me.
I don't write this post so that people will feel sorry for us - I do it to bring awareness. Before Joshua I knew NOTHING of seizures or epilepsy and the pain that it causes and the toll it takes on a family. Now that I know I want to make sure I share this with others so people will have empathy and donate money for research and will not treat people with epilepsy differently. I'm appalled by how little research funding epilepsy gets compared to other brain disorders, yet more people are affected by and die from epilepsy every year than those other disorders. I have a lot of friends that I have met on this journey and they are all fighting for their kids, their families and their sanity - I want so badly to help them. If nothing else, help me spread awareness and understanding for those living with epilepsy and their families who live with the struggles every day.
Today we started over. We will continue to fight and hope for a life without seizures, medications and a restrictive diet. We will win.
I can't fully explain the heartache it causes to deny your own child food or to physically wrestle food they cannot have out of their hands, even when you know it is for their own health benefit. I often don't talk about it because I am so thankful for the diet and I KNOW it is saving him, but sometimes it is difficult. I think about what it will be like in the future (someday) to let him eat anything he wants and be able to take him out for ice cream. I know that sounds like stupid things, but when you cannot do it anymore, it is hard. I don't think anyone can fully grasp a change like this until they are faced with it and deal with it every day.
Although Joshua is 5 we have to treat him like a baby and not let him out of our sight. We can't even go to the restroom without making sure someone can watch him because he may try to sneak food. The minute I hear a bedroom door close I go running because usually that means Joshua has gotten into something and is hiding. It is a strange fear to live with, I have to say. Our cupboards are locked so he cannot get into the food and that has worked well. However, the refrigerator has not been as successful (Joshua has broken off two sets of locks already). We are now contemplating getting a bike lock and putting that on the fridge at night so he cannot get into food while we are sleeping. These are not thoughts that most parents have, but it is a reality in our house.
All of Joshua's cheating caught up with him last night when he had 11 seizures when I put him to bed. I was not surprised at all due to the cheating, but it was still heart-breaking. Our last seizure free stint was 44 days and this one was 50. I hope someday we will have longer stints, but it just did not happen this time. Today we started over. He is in such a better place than he was a year ago so I should be nothing but thankful, but yet, it crushes me every time he breaks his seizure free stints. I cringe knowing that his brain still knows how to seize and that he is not healed yet. I hope that one day his brain will be completely healed and this will all be behind us. I can't describe what it feels like to hold your child in your arms and watch/feel them have continuous seizures - I don't think it is something that will ever leave me.
I don't write this post so that people will feel sorry for us - I do it to bring awareness. Before Joshua I knew NOTHING of seizures or epilepsy and the pain that it causes and the toll it takes on a family. Now that I know I want to make sure I share this with others so people will have empathy and donate money for research and will not treat people with epilepsy differently. I'm appalled by how little research funding epilepsy gets compared to other brain disorders, yet more people are affected by and die from epilepsy every year than those other disorders. I have a lot of friends that I have met on this journey and they are all fighting for their kids, their families and their sanity - I want so badly to help them. If nothing else, help me spread awareness and understanding for those living with epilepsy and their families who live with the struggles every day.
Today we started over. We will continue to fight and hope for a life without seizures, medications and a restrictive diet. We will win.
Monday, March 18, 2013
Updates, Updates, and more Updates
Lots of updating to do tonight since my last post so bare with me.
Diet Update:
We are still holding out at a 2.75:1 ratio. We were going to go up to 3:1, but since things have been going pretty well lately we have decided to stay here for a little while longer. Since Joshua is still cheating the Swedish team is worried to take him up to 3:1. I think we will talk about it again after we get back from vacation. We are also talking about increasing his calories because of his cheating, but we are not convinced he is cheating because he is hungry - we think it is more behavioral. He is gaining weight and growing so I think the calories are probably appropriate. Whatever we decide it won't be until we get back from vacation as it is too stressful to change right before we leave.
Blood Work Update:
We had Joshua's blood drawn again on March 6th as there were some areas we wanted to re-test from his blood draw in January and get more definitive results. They checked EVERYTHING (8 vials of blood were taken). His blood results were great - only area that was a little under was his red blood cell count so we are starting him on an iron supplement. His blood ketone level was great at 5.7 and his Zonegran medication level was right on. All his other tests - calcium, vitamin D, carnitine, cholesterol, potassium, etc. were great. Yahoo! We will have his blood checked again in 3 months, but we are good until then (I think that may be one of the longest stints of not getting blood work that we have had since we started).
Genetic Testing Update:
Joshua's genetic test results are in and all are negative! This test checked for many genetic abnormalities and issues and none were found. This also tested for Glut-1 deficiency and that was negative as well which is great news. If Joshua had Glut-1 it would have meant that he probably would have been on the keto diet the rest of his life as it is the only known treatment for it. I'm glad that his genetic test came back negative, but at the same time it would be nice to know WHY this all started. I guess we will never have an answer.
Seizure Update:
As I said during my last post we have lost some seizure control since the end of January. We enjoyed 44 great days between mid-December and late January and then it un-raveled a little. We had some absence seizures and then the Myoclonics came back as well. We had 50 total seizures in February which was a huge bummer, but if I remember where we come from at well over 100 per day that is still great. Most of February he continued to have seizures every few days, but March has been much better. He has only had a few seizures in March and I'm happy to report that today marks 14 days of seizure freedom! I feel like we are back on the right path and hope this seizure freedom sticks to the end. Please pray it sticks this time and we don't see them come back ever again.
Dr. Korol (neurologist) Update:
We had our check-up with Dr. Korol today and it went well. I think it was one of the shortest appointments we have ever had at 1 hour. We talked about where we are seizure wise and what that means for getting him off his last medication, Zonegran. Because he was having seizures so recently and the fact that we just took him off Zarontin she does not want to wean the Zonegran yet. We want to have another EEG that looks as good (or better) than the last one and then we will take him off Zonegran. We agreed to have another EEG in July and if it is clear then we will wean Zonegran and be done with drugs! I CANNOT wait for that moment - I will be so excited!
Dr. Korol wants us to go back to the neuro psychologist and have Joshua tested again to see where we are at cognitively speaking. We had him tested last year, but he would not sit through most of the tests so it was difficult to get an accurate assessment. Now that he has better focus and attention span we want to try it again to see if we can get a complete evaluation. By the time we get it scheduled, it will be a year since we had it done so it seems timely to get it done again. I'm nervous about the results, but feel it is important to find out where he is at if we can get the complete analysis done.
Behavior Update:
Joshua's behavior has improved overall so I think for now we won't be pursuing a behavioral therapist. We are still winning the battle over PJs - at least when we leave the house. I think it will just take some getting used to for him that he now has consequences for his actions now that he is feeling better.
School Update:
We received Joshua's progress report today from school and we were pleasantly surprised to see that he has made a lot of gains over the last trimester. There are still some areas he is struggling in, but it was nice to read the areas where he has improved in recently. And, I find it very interesting that all of these gains were shown in the most recent trimester (Dec. to now) right after we took him off Zarontin. Coincidence? I don't think so. Here are results which are aligned to each of his IEP (Individual Education Plan) goals.
A. Speech - not yet meeting his goals, but making progress. "Joshua is still having issues with spatial concepts and expressive language. His receptive skills are improving well."
B. Fine Motor Skills - line tracing - Joshua is meeting his goal of tracing lines.
C. Fine Motor Skills - Copying lines and simple shapes - Joshua is meeting this goal and can copy simple lines and shapes.
D. Fine Motor Skills - Cutting with scissors - Joshua is meeting this goal and is moving onto cutting out shapes! Yahoo!
E. Cognitive Skills - Attention during circle time - Goal met! "Joshua can now stay in circle time and sit with his peers while participating in group. He is paying attention much better and participating more than 80% of the time."
F. Cognitive Skills - Follow multi-step directions - goal not met yet, but making progress. "Joshua needs time to process what is being asked of him and he needs to practice following through on more than one step. Once he has learned the directions, he is able to follow through on them daily."
G. Cognitive Skills - Letter Identification - little progress made. "Letter identification is really hard for Joshua. Keeping his focus on the task at hand in order to teach him the letters is difficult. We will continue to work on this in the spring."
H. Cognitive Skills - Spell Name - goal not met yet, but making some progress. "This continues to be difficult for Joshua. He has trouble really watching while we identify the letters in his name. He has a higher percentage of identifying the J and the A, but even those are not consistent yet. We'll continue working on this goal in the spring."
Overall, we seem to be in a pretty good place right now so I will take it! Please pray that seizure freedom continues and that Joshua continues to make cognitive strides in school.
Diet Update:
We are still holding out at a 2.75:1 ratio. We were going to go up to 3:1, but since things have been going pretty well lately we have decided to stay here for a little while longer. Since Joshua is still cheating the Swedish team is worried to take him up to 3:1. I think we will talk about it again after we get back from vacation. We are also talking about increasing his calories because of his cheating, but we are not convinced he is cheating because he is hungry - we think it is more behavioral. He is gaining weight and growing so I think the calories are probably appropriate. Whatever we decide it won't be until we get back from vacation as it is too stressful to change right before we leave.
Blood Work Update:
We had Joshua's blood drawn again on March 6th as there were some areas we wanted to re-test from his blood draw in January and get more definitive results. They checked EVERYTHING (8 vials of blood were taken). His blood results were great - only area that was a little under was his red blood cell count so we are starting him on an iron supplement. His blood ketone level was great at 5.7 and his Zonegran medication level was right on. All his other tests - calcium, vitamin D, carnitine, cholesterol, potassium, etc. were great. Yahoo! We will have his blood checked again in 3 months, but we are good until then (I think that may be one of the longest stints of not getting blood work that we have had since we started).
Genetic Testing Update:
Joshua's genetic test results are in and all are negative! This test checked for many genetic abnormalities and issues and none were found. This also tested for Glut-1 deficiency and that was negative as well which is great news. If Joshua had Glut-1 it would have meant that he probably would have been on the keto diet the rest of his life as it is the only known treatment for it. I'm glad that his genetic test came back negative, but at the same time it would be nice to know WHY this all started. I guess we will never have an answer.
Seizure Update:
As I said during my last post we have lost some seizure control since the end of January. We enjoyed 44 great days between mid-December and late January and then it un-raveled a little. We had some absence seizures and then the Myoclonics came back as well. We had 50 total seizures in February which was a huge bummer, but if I remember where we come from at well over 100 per day that is still great. Most of February he continued to have seizures every few days, but March has been much better. He has only had a few seizures in March and I'm happy to report that today marks 14 days of seizure freedom! I feel like we are back on the right path and hope this seizure freedom sticks to the end. Please pray it sticks this time and we don't see them come back ever again.
Dr. Korol (neurologist) Update:
We had our check-up with Dr. Korol today and it went well. I think it was one of the shortest appointments we have ever had at 1 hour. We talked about where we are seizure wise and what that means for getting him off his last medication, Zonegran. Because he was having seizures so recently and the fact that we just took him off Zarontin she does not want to wean the Zonegran yet. We want to have another EEG that looks as good (or better) than the last one and then we will take him off Zonegran. We agreed to have another EEG in July and if it is clear then we will wean Zonegran and be done with drugs! I CANNOT wait for that moment - I will be so excited!
Dr. Korol wants us to go back to the neuro psychologist and have Joshua tested again to see where we are at cognitively speaking. We had him tested last year, but he would not sit through most of the tests so it was difficult to get an accurate assessment. Now that he has better focus and attention span we want to try it again to see if we can get a complete evaluation. By the time we get it scheduled, it will be a year since we had it done so it seems timely to get it done again. I'm nervous about the results, but feel it is important to find out where he is at if we can get the complete analysis done.
Behavior Update:
Joshua's behavior has improved overall so I think for now we won't be pursuing a behavioral therapist. We are still winning the battle over PJs - at least when we leave the house. I think it will just take some getting used to for him that he now has consequences for his actions now that he is feeling better.
School Update:
We received Joshua's progress report today from school and we were pleasantly surprised to see that he has made a lot of gains over the last trimester. There are still some areas he is struggling in, but it was nice to read the areas where he has improved in recently. And, I find it very interesting that all of these gains were shown in the most recent trimester (Dec. to now) right after we took him off Zarontin. Coincidence? I don't think so. Here are results which are aligned to each of his IEP (Individual Education Plan) goals.
A. Speech - not yet meeting his goals, but making progress. "Joshua is still having issues with spatial concepts and expressive language. His receptive skills are improving well."
B. Fine Motor Skills - line tracing - Joshua is meeting his goal of tracing lines.
C. Fine Motor Skills - Copying lines and simple shapes - Joshua is meeting this goal and can copy simple lines and shapes.
D. Fine Motor Skills - Cutting with scissors - Joshua is meeting this goal and is moving onto cutting out shapes! Yahoo!
E. Cognitive Skills - Attention during circle time - Goal met! "Joshua can now stay in circle time and sit with his peers while participating in group. He is paying attention much better and participating more than 80% of the time."
F. Cognitive Skills - Follow multi-step directions - goal not met yet, but making progress. "Joshua needs time to process what is being asked of him and he needs to practice following through on more than one step. Once he has learned the directions, he is able to follow through on them daily."
G. Cognitive Skills - Letter Identification - little progress made. "Letter identification is really hard for Joshua. Keeping his focus on the task at hand in order to teach him the letters is difficult. We will continue to work on this in the spring."
H. Cognitive Skills - Spell Name - goal not met yet, but making some progress. "This continues to be difficult for Joshua. He has trouble really watching while we identify the letters in his name. He has a higher percentage of identifying the J and the A, but even those are not consistent yet. We'll continue working on this goal in the spring."
Overall, we seem to be in a pretty good place right now so I will take it! Please pray that seizure freedom continues and that Joshua continues to make cognitive strides in school.
Friday, February 15, 2013
Increasing Ratio
We had our check-up apt. with the Swedish Keto team this week and we had a lot to talk about (another 2 hour apt.). It is a good thing we always go at the end of the day and are their last patient of the day. :-)
After a long discussion regarding the recent seizure activity we decided to increase Joshua's Keto ratio to try and gain back seizure control. So, on Wednesday this week we went up to 2.75:1 and then in a few weeks we will go up again to 3.1:1 which is where we were at prior to Joshua getting really sick in December. I am hoping this will do the trick to gain back complete seizure control. The Keto team does not think that the stamps and/or food coloring had anything to do with it, but it is more likely caused by his sometimes cheating and/or his Doose Syndrome doing what it does to a lot of kiddos. So, we will press on and increase the ratio and hope that things settle down. We are also going to increase the amount of MCT oil he takes in from ~20g to ~30g per day as MCT oil boosts ketones which should help stop the seizures. So far he has been fine with the increase in ratio and the added oil so that is good news!
They also want us to get new labs drawn in about 3 weeks so that we can take a look at his complete blood panel, med levels and ketone levels. We will not add any iron supplements until we get the new blood drawn as they want to ensure he really is anemic before making us give him another supplement since we already have so many to get in him every day. Also, he hasn't been taking his multi-vitamin every day so we are going to do better at that and hopefully that will help with his iron levels as well. We will stay tuned until we get his new lab work back in about a month.
Still no word on the results of his genetic testing so we are still in a waiting/holding pattern on that. I wish they were back, but we knew it would take several months to get the results.
We are supposed to go back to see his neurologist on March 18th, but I now have to go out of town that day so I will need to move that appt. I'm hoping to still get into the neuro in March as we have quite a lot to discuss. I was really wanting to talk about getting off Zonegran, but with his recent seizure activity I doubt that will be an option. :-(
We haven't seen anymore absence seizures which is great, but he is having some Myoclonic seizures still, although not every day. Last night he had quite a few - about 8 when I put him to bed. I'm hoping we are back to 0 tonight. Every night is a new hope for another seizure free day.
As if we didn't have enough Dr. appointments, we are thinking of going to see a behavioral therapist who can help us with Joshua's behavior as the last few months have been extremely bad/difficult and things have gotten even worse over the last few weeks. I think we need some outside help to deal with some of his behavior and emotional issues as sometimes we are just at a loss as to what to do. The good news is that this week we had a breakthrough regarding PJs and Chip won the battle! He has been wearing clothes last few days so it feels good to have gotten past one small hurdle. Hey, we will take the "wins" where we can.
Until next time......
After a long discussion regarding the recent seizure activity we decided to increase Joshua's Keto ratio to try and gain back seizure control. So, on Wednesday this week we went up to 2.75:1 and then in a few weeks we will go up again to 3.1:1 which is where we were at prior to Joshua getting really sick in December. I am hoping this will do the trick to gain back complete seizure control. The Keto team does not think that the stamps and/or food coloring had anything to do with it, but it is more likely caused by his sometimes cheating and/or his Doose Syndrome doing what it does to a lot of kiddos. So, we will press on and increase the ratio and hope that things settle down. We are also going to increase the amount of MCT oil he takes in from ~20g to ~30g per day as MCT oil boosts ketones which should help stop the seizures. So far he has been fine with the increase in ratio and the added oil so that is good news!
They also want us to get new labs drawn in about 3 weeks so that we can take a look at his complete blood panel, med levels and ketone levels. We will not add any iron supplements until we get the new blood drawn as they want to ensure he really is anemic before making us give him another supplement since we already have so many to get in him every day. Also, he hasn't been taking his multi-vitamin every day so we are going to do better at that and hopefully that will help with his iron levels as well. We will stay tuned until we get his new lab work back in about a month.
Still no word on the results of his genetic testing so we are still in a waiting/holding pattern on that. I wish they were back, but we knew it would take several months to get the results.
We are supposed to go back to see his neurologist on March 18th, but I now have to go out of town that day so I will need to move that appt. I'm hoping to still get into the neuro in March as we have quite a lot to discuss. I was really wanting to talk about getting off Zonegran, but with his recent seizure activity I doubt that will be an option. :-(
We haven't seen anymore absence seizures which is great, but he is having some Myoclonic seizures still, although not every day. Last night he had quite a few - about 8 when I put him to bed. I'm hoping we are back to 0 tonight. Every night is a new hope for another seizure free day.
As if we didn't have enough Dr. appointments, we are thinking of going to see a behavioral therapist who can help us with Joshua's behavior as the last few months have been extremely bad/difficult and things have gotten even worse over the last few weeks. I think we need some outside help to deal with some of his behavior and emotional issues as sometimes we are just at a loss as to what to do. The good news is that this week we had a breakthrough regarding PJs and Chip won the battle! He has been wearing clothes last few days so it feels good to have gotten past one small hurdle. Hey, we will take the "wins" where we can.
Until next time......
Saturday, February 9, 2013
5-Year Check Up
This week Joshua had his 5-year check up with his pediatrician.
The first thing they wanted to do was check his vision so the nurse asked me "will he do better identifying shapes or numbers on the chart?". Since he does not recognize any numbers I had to go with shapes and tell the nurse that my 5-year old does not recognize numbers yet. He named the shapes she pointed to with boys eyes open, but didn't understand the concept of covering up one eye and doing the same thing so he started shutting down and that was the end of that test! :-)
Next they wanted him to put on a gown for the appt. and when we suggested it to him, he started to have a major melt down so we "passed" on wearing the gown (I knew his Dr. would understand and work around it). To give some background, Joshua has been refusing to wear clothes for quite awhile now and will only wear PJs. I'm sure to most people this sounds absurd and they are thinking to themselves - well just force him to wear clothes - after all, we are the parents. Parenting a child with special needs is a whole other ball game and this is not a normal child's type refusal - we have hour long BATTLES over wearing clothes in which I don't even want to describe the level of rage he gets into over it. So, we usually just decide to choose our battles and let him wear PJs. Anyway, we had been making some progress in this area in getting him to wear clothes OVER his PJs, but on the day of his appt. we actually got him into his clothes with no PJs. Since we had won for the day, I was not going to rock the boat in the Dr.'s office over a silly gown. Our Dr. didn't mind in the least. :-)
Next the nurse told us that the Dr. likes to check all kids iron levels at 5 years old so she said she was going to take his blood via a finger prick. Joshua was sitting on the table by this time and heard "take out blood" and so he immediately slid his shirt sleeve up and held out his arm to her for her to take his blood. It was cute, but also sad to see that he has had so many blood draws that he hears the words and just gives his arm over like a pro. You would not see that in most kids! We explained they were just going to poke his finger and he didn't need to have blood taken out the normal way. She poked his finger and he sat there, totally un-phased and no crying - the nurse was amazed. Yep, our Doosie is a tough guy!
Keto can stunt kids growth because of what they are eating and the calorie restrictions so I was really interested to see how his weight and height would compare to last year and I was pleasantly surprised that he did indeed grow some from last year. Granted, we didn't start diet therapy until May and didn't switch to keto until November so he may not grow as much in 2013. He gained 2 pounds (now 45 pounds) and grew 1 and 1/2 inches (now 44 inches) in the last year. He is 75th percentile for both height and weight so that is great news!
Joshua's iron level came back low (he's anemic) which is not too surprising when you look at what he eats every day. She wanted to put him on an iron supplement, but when I asked what kind she said it was a liquid and I told her it probably had sugar in it and so he can't have it. So, we agreed I would ask our Swedish Keto team next week at our apt. what kind of iron supplement is okay to have on Keto. So, we'll get that straightened out next week. His pediatrician also wants him on fluoride, but we were unsure if we could do that as well so we'll get that answered next week too. So much to think about with this diet - everything has to be carefully thought out.
Everything else checked out well with the pediatrician so that was good. We did talk about Joshua's behavior issues and she did mention that being anemic can make a person really irritable and crabby so that if we get his iron levels back up with a supplement that he may start acting a bit better. Wouldn't that be nice! All in all it was a successful trip to the pediatrician!
In other news, we seem to have lost a bit of seizure control over the last couple weeks. We have been seeing some absence seizures during the day (not every day mind you) and some Myoclonic seizures at night (albeit very small ones). I'm not sure why we have lost some control - I thought it started because of some stamps and food coloring he got into, but my Keto team said that is not very likely and since he has continued to have seizures since then, I'm beginning to agree with them. We go back to see the Keto team on Monday so will discuss what we think is going on and possibly decide on raising his ratio. We weaned off a med in December (Zarontin) and that med is supposed to help with absence seizures so I'm hoping it is not the wean that did it as I REALLY don't want to put him back on the med. Since coming off the med he is starting to retain some information and learn a little bit at school. Since coming off that med he has started counting, saying his ABCs and singing songs (all things we lost when seizures started). It would kill me to have to put him back on that med and lose those skills again. I would much rather go up on his ratio on the diet and try to fix the issue that way. We had a great seizure free run from December 14th - January 26th (44 glorious days), but things started to change on Jan. 27th when he had two absence seizures at dinner time. That was heart breaking because we have not seen a daytime seizure in MONTHS and I just had a pitt in my stomach about it. I have faith we will get it figured out and get full control again, but it certainly is frustrating.
People asked me a lot when he was seizure free if I was just over the moon excited and could finally relax. My response was always that I'm over the moon that TODAY he is seizure free, but that I'm cautiously optimistic about every day forward and that I'm still nervous every day about seeing a seizure. I think some people thought that was weird - why not just enjoy it? It is hard to explain, but with epilepsy and his disorder especially it is hard to get comfortable as you are always suspecting a shoe to drop because well, so far one always has. I've heard countless stories from other Doose parents about losing control at various times, so like I said, cautiously optimistic! This fight is going to be long and so we take it one day at a time and are grateful for every seizure free day we get along the way.
More to come next week after we see the Keto team on Monday. Hopefully we won't have any seizures this weekend while we wait.
The first thing they wanted to do was check his vision so the nurse asked me "will he do better identifying shapes or numbers on the chart?". Since he does not recognize any numbers I had to go with shapes and tell the nurse that my 5-year old does not recognize numbers yet. He named the shapes she pointed to with boys eyes open, but didn't understand the concept of covering up one eye and doing the same thing so he started shutting down and that was the end of that test! :-)
Next they wanted him to put on a gown for the appt. and when we suggested it to him, he started to have a major melt down so we "passed" on wearing the gown (I knew his Dr. would understand and work around it). To give some background, Joshua has been refusing to wear clothes for quite awhile now and will only wear PJs. I'm sure to most people this sounds absurd and they are thinking to themselves - well just force him to wear clothes - after all, we are the parents. Parenting a child with special needs is a whole other ball game and this is not a normal child's type refusal - we have hour long BATTLES over wearing clothes in which I don't even want to describe the level of rage he gets into over it. So, we usually just decide to choose our battles and let him wear PJs. Anyway, we had been making some progress in this area in getting him to wear clothes OVER his PJs, but on the day of his appt. we actually got him into his clothes with no PJs. Since we had won for the day, I was not going to rock the boat in the Dr.'s office over a silly gown. Our Dr. didn't mind in the least. :-)
Next the nurse told us that the Dr. likes to check all kids iron levels at 5 years old so she said she was going to take his blood via a finger prick. Joshua was sitting on the table by this time and heard "take out blood" and so he immediately slid his shirt sleeve up and held out his arm to her for her to take his blood. It was cute, but also sad to see that he has had so many blood draws that he hears the words and just gives his arm over like a pro. You would not see that in most kids! We explained they were just going to poke his finger and he didn't need to have blood taken out the normal way. She poked his finger and he sat there, totally un-phased and no crying - the nurse was amazed. Yep, our Doosie is a tough guy!
Keto can stunt kids growth because of what they are eating and the calorie restrictions so I was really interested to see how his weight and height would compare to last year and I was pleasantly surprised that he did indeed grow some from last year. Granted, we didn't start diet therapy until May and didn't switch to keto until November so he may not grow as much in 2013. He gained 2 pounds (now 45 pounds) and grew 1 and 1/2 inches (now 44 inches) in the last year. He is 75th percentile for both height and weight so that is great news!
Joshua's iron level came back low (he's anemic) which is not too surprising when you look at what he eats every day. She wanted to put him on an iron supplement, but when I asked what kind she said it was a liquid and I told her it probably had sugar in it and so he can't have it. So, we agreed I would ask our Swedish Keto team next week at our apt. what kind of iron supplement is okay to have on Keto. So, we'll get that straightened out next week. His pediatrician also wants him on fluoride, but we were unsure if we could do that as well so we'll get that answered next week too. So much to think about with this diet - everything has to be carefully thought out.
Everything else checked out well with the pediatrician so that was good. We did talk about Joshua's behavior issues and she did mention that being anemic can make a person really irritable and crabby so that if we get his iron levels back up with a supplement that he may start acting a bit better. Wouldn't that be nice! All in all it was a successful trip to the pediatrician!
In other news, we seem to have lost a bit of seizure control over the last couple weeks. We have been seeing some absence seizures during the day (not every day mind you) and some Myoclonic seizures at night (albeit very small ones). I'm not sure why we have lost some control - I thought it started because of some stamps and food coloring he got into, but my Keto team said that is not very likely and since he has continued to have seizures since then, I'm beginning to agree with them. We go back to see the Keto team on Monday so will discuss what we think is going on and possibly decide on raising his ratio. We weaned off a med in December (Zarontin) and that med is supposed to help with absence seizures so I'm hoping it is not the wean that did it as I REALLY don't want to put him back on the med. Since coming off the med he is starting to retain some information and learn a little bit at school. Since coming off that med he has started counting, saying his ABCs and singing songs (all things we lost when seizures started). It would kill me to have to put him back on that med and lose those skills again. I would much rather go up on his ratio on the diet and try to fix the issue that way. We had a great seizure free run from December 14th - January 26th (44 glorious days), but things started to change on Jan. 27th when he had two absence seizures at dinner time. That was heart breaking because we have not seen a daytime seizure in MONTHS and I just had a pitt in my stomach about it. I have faith we will get it figured out and get full control again, but it certainly is frustrating.
People asked me a lot when he was seizure free if I was just over the moon excited and could finally relax. My response was always that I'm over the moon that TODAY he is seizure free, but that I'm cautiously optimistic about every day forward and that I'm still nervous every day about seeing a seizure. I think some people thought that was weird - why not just enjoy it? It is hard to explain, but with epilepsy and his disorder especially it is hard to get comfortable as you are always suspecting a shoe to drop because well, so far one always has. I've heard countless stories from other Doose parents about losing control at various times, so like I said, cautiously optimistic! This fight is going to be long and so we take it one day at a time and are grateful for every seizure free day we get along the way.
More to come next week after we see the Keto team on Monday. Hopefully we won't have any seizures this weekend while we wait.
Sunday, February 3, 2013
Seizure Freedom (mostly) and 1-Year Anniversary
I've been meaning to post this for awhile now and life seems to be getting in the way of my blogging time. :-) I wanted to post when Joshua hit one month seizure free and that came and went and before I could post he had a seizure so our "clock" had to be reset. Let me back up a little.....
December 13th was Joshua's "last" seizure for quite awhile and so December 14th became our new seizure free clock day 1. We made it through the rest of December without incident and the first few weeks of January so on January 14th we celebrated BIG time as we had made it one month without seeing a seizure. That was a HUGE milestone for us and I was beginning to think he would NEVER have another one and this Doose beast that we had been fighting would be dead forever. Well, I guess we should never get too comfortable. January was going exceedingly well until January 27th (Sunday) when Joshua had two absence seizures in our kitchen around dinner time about 20 minutes apart. The first one made both Chip and I pause and we looked at each other not speaking, but our eyes said "was that just a seizure?". About 20 minutes later Joshua was sitting with me at the dinner table and he went into a deep stare for about 5 seconds and Chip and I were calling his name and I was snapping my fingers right in front of his face to no response. We knew then for sure it had been a seizure and so was the other one. We both tried hard not to appear devastated, but it was hard. For me, the hardest part was knowing he has not had a seizure while being awake in MONTHS and I wondered if were going to descend into hell again. I was trying to figure out why Joshua would have two seizures this night and when I gave him a bath that night I noticed he had green food coloring on his legs from when he got into the cupboard earlier in the day. I also noticed he had a few leftover stamps on his hand from the day before. It dawned on me that he perhaps got carbohydrates absorbed through his skin from these products. I reached out to my keto peeps on whether this was a possibility and got some different responses. So, while I don't know if that is what caused his seizures, I'm certainly hoping that is the case because it is preventable in the future. Joshua has never been sensitive to environmental carbs like some kids, but this was a reminder that we need to be more vigilant as never know what can be a trigger. While going to bed that night I could not sleep so we had to put the baby monitor on Joshua again as I was just too nervous something was going to happen. Nothing did, but it just put me back in that old place of being so worried again - ugh!
Joshua also had a Myoclonic seizure on January 28th and again on the 29th (his birthday) shortly after falling asleep. They were small and not noticeable to someone who doesn't know what they are looking for, but I'm pretty certain that is what they were. So, we started Joshua's seizure clock over on January 30th and it had been going well up until today. Joshua fell asleep with Cole today in the recliner and Cole reported a Myoclonic seizure, but I can't be 100% sure because I didn't see it. However, Cole has seen a LOT of Myoclonic seizures from Joshua over the last year so it wouldn't surprise me if he could spot one. And, when I put Joshua to bed tonight I'm pretty certain he had one as well. So, we will re-start the clock again tomorrow, Feb. 4th. I would be lying if I didn't say I was nervous about the recent activity and am hoping like hell it is just a blip and not a return. I'm still keeping the FAITH and HOPE that we will beat this beast called Doose Syndrome.
We have another apt. with his keto team at Swedish next week so we will talk to them about the activity and see if they want to do anything - we could possibly increase his ratio on the diet. We'll see what they have to say. We also have another apt. with his neurologist in March and I will want to talk about weaning him off his last medication - Zonegran. I really want him off all his meds so we can see what his cognitive abilities will be like without drugs, but I also don't want to rush it, especially if we are seeing activity. Weaning the other two drugs did not scare me, but this one does. It is a fine balance to know what to do and when.
It is hard to believe, but we have gone past our 1-year anniversary of dealing with seizures. We first noticed Joshua having seizures (well, we didn't know they were seizures at first, but "something") in early January 2012. I suspect he was having them prior to us noticing and I will always wonder for how long, but our journey has been in full swing for 1-year now. For a long time in 2012, I just wanted to turn the clock back and go back to Christmas of 2011 before seizures took over our lives. I am now in a place where I don't want to turn the clock back, but want to move forward. I would NEVER want to re-live 2012 again and am hoping for a much calmer and happy 2013. So far, that is proving to be the case. Chip and I have survived the hardest year of our lives and proved that we are much stronger that we thought and that we are true team, in every sense of the word. Sometimes I am not sure how we survived and I know that none of us will be the same, but we continue to march forward having faith and hope that one day seizures and keto food will not consume our thoughts all day every day. Until that day, we will keep fighting for Joshua (and all kids who battle epilepsy) and if we have to, keep re-setting our seizure free clock.
P.S. Please educate and advocate regarding epilepsy whenever possible! It is so important to get the funds for research that epilepsy desperately needs.
December 13th was Joshua's "last" seizure for quite awhile and so December 14th became our new seizure free clock day 1. We made it through the rest of December without incident and the first few weeks of January so on January 14th we celebrated BIG time as we had made it one month without seeing a seizure. That was a HUGE milestone for us and I was beginning to think he would NEVER have another one and this Doose beast that we had been fighting would be dead forever. Well, I guess we should never get too comfortable. January was going exceedingly well until January 27th (Sunday) when Joshua had two absence seizures in our kitchen around dinner time about 20 minutes apart. The first one made both Chip and I pause and we looked at each other not speaking, but our eyes said "was that just a seizure?". About 20 minutes later Joshua was sitting with me at the dinner table and he went into a deep stare for about 5 seconds and Chip and I were calling his name and I was snapping my fingers right in front of his face to no response. We knew then for sure it had been a seizure and so was the other one. We both tried hard not to appear devastated, but it was hard. For me, the hardest part was knowing he has not had a seizure while being awake in MONTHS and I wondered if were going to descend into hell again. I was trying to figure out why Joshua would have two seizures this night and when I gave him a bath that night I noticed he had green food coloring on his legs from when he got into the cupboard earlier in the day. I also noticed he had a few leftover stamps on his hand from the day before. It dawned on me that he perhaps got carbohydrates absorbed through his skin from these products. I reached out to my keto peeps on whether this was a possibility and got some different responses. So, while I don't know if that is what caused his seizures, I'm certainly hoping that is the case because it is preventable in the future. Joshua has never been sensitive to environmental carbs like some kids, but this was a reminder that we need to be more vigilant as never know what can be a trigger. While going to bed that night I could not sleep so we had to put the baby monitor on Joshua again as I was just too nervous something was going to happen. Nothing did, but it just put me back in that old place of being so worried again - ugh!
Joshua also had a Myoclonic seizure on January 28th and again on the 29th (his birthday) shortly after falling asleep. They were small and not noticeable to someone who doesn't know what they are looking for, but I'm pretty certain that is what they were. So, we started Joshua's seizure clock over on January 30th and it had been going well up until today. Joshua fell asleep with Cole today in the recliner and Cole reported a Myoclonic seizure, but I can't be 100% sure because I didn't see it. However, Cole has seen a LOT of Myoclonic seizures from Joshua over the last year so it wouldn't surprise me if he could spot one. And, when I put Joshua to bed tonight I'm pretty certain he had one as well. So, we will re-start the clock again tomorrow, Feb. 4th. I would be lying if I didn't say I was nervous about the recent activity and am hoping like hell it is just a blip and not a return. I'm still keeping the FAITH and HOPE that we will beat this beast called Doose Syndrome.
We have another apt. with his keto team at Swedish next week so we will talk to them about the activity and see if they want to do anything - we could possibly increase his ratio on the diet. We'll see what they have to say. We also have another apt. with his neurologist in March and I will want to talk about weaning him off his last medication - Zonegran. I really want him off all his meds so we can see what his cognitive abilities will be like without drugs, but I also don't want to rush it, especially if we are seeing activity. Weaning the other two drugs did not scare me, but this one does. It is a fine balance to know what to do and when.
It is hard to believe, but we have gone past our 1-year anniversary of dealing with seizures. We first noticed Joshua having seizures (well, we didn't know they were seizures at first, but "something") in early January 2012. I suspect he was having them prior to us noticing and I will always wonder for how long, but our journey has been in full swing for 1-year now. For a long time in 2012, I just wanted to turn the clock back and go back to Christmas of 2011 before seizures took over our lives. I am now in a place where I don't want to turn the clock back, but want to move forward. I would NEVER want to re-live 2012 again and am hoping for a much calmer and happy 2013. So far, that is proving to be the case. Chip and I have survived the hardest year of our lives and proved that we are much stronger that we thought and that we are true team, in every sense of the word. Sometimes I am not sure how we survived and I know that none of us will be the same, but we continue to march forward having faith and hope that one day seizures and keto food will not consume our thoughts all day every day. Until that day, we will keep fighting for Joshua (and all kids who battle epilepsy) and if we have to, keep re-setting our seizure free clock.
P.S. Please educate and advocate regarding epilepsy whenever possible! It is so important to get the funds for research that epilepsy desperately needs.
Survived 1st Keto Birthday
Wow - I haven't posted in awhile! :-) I had to commemorate that we survived Joshua's 1st birthday on Keto - yahoo! When we started diet therapy (will be 9 months on Tuesday) one of the things I feared the most was his birthday. How were we ever going to get through his birthday when he can't have cake I wondered. At the time I thought "Well, that is months away - I will deal with it when I have to". It snuck up on me faster than I thought it would, but it ended up being so much better than I ever imagined.
Joshua turned 5 officially last Tuesday on January 29th. We had a quiet celebration at home with just the 4 of us, but Joshua got a special "treat" - his birthday keto cupcake! A few weeks prior to his birthday I emailed Joshua's dietitian (Nancy) and asked for cupcake and/or cake recipes that I could use for Joshua's birthday so he would not be completely left out. Nancy created several recipes for us to try in our ketocalculator and I was so grateful. The weekend prior to this birthday I started to make the "practice" cupcake and it turned out great. It not only tasted like a "real" cupcake, but also looked like one (including keto friendly frosting - aka whip cream). Joshua LOVED his practice cupcake so I knew he would love it all the more on his birthday. He saw me make it the night before his birthday so he was excited about it all day and could not wait. We sang Happy Birthday to him after dinner and he had the biggest smile on his face as he ate his birthday cupcake. He was sooo happy and I was so glad we could still make his birthday special.
Yesterday we had his birthday party at Super Jump Party Zone (a bounce house type place). This was super special to me because his birthday party last year was scheduled at this place, but when he started having so many seizures I cancelled his party there and moved it to a bowling alley. I was just way too nervous to have him in a bounce house while he was having so many seizures per day. Last year's birthday party was really hard for me - he was just not "himself". I can hardly bring myself to look at the pictures from his party last year as he is having absence seizures in so many of them and it just breaks my heart. It was the beginning of a hell that I hadn't even fully known yet and it was just starting.
It was awesome to be able to give Joshua his bounce house birthday party this year! I was still a nervous wreck throughout the party and watched him very closely, but he did great! He had so much fun and had enough energy to run around. He did get tired a few times and had to take breaks, but he had more energy than we have seen in almost a year. We had no food at the party except for cupcakes as I thought it would be too hard on Joshua otherwise. I gave Joshua his special keto cupcake first with a candle that he blew out and he lit up when he saw it. He really loved everyone singing "Happy Birthday" to him and being the center of attention. He ate up his cupcake just as quickly as he did the 1st time and not once asked me for a "normal" cupcake like I had for the other kids. Instead of focusing on food, we focused on friends and playing and that is what is most important anyway. He had a great time at his party and it warmed my heart to see him so happy and full of joy.
Below are a few pics from his birthday party and one last time I just want to shout "We survived our 1st birthday on Keto!!!!".
Joshua turned 5 officially last Tuesday on January 29th. We had a quiet celebration at home with just the 4 of us, but Joshua got a special "treat" - his birthday keto cupcake! A few weeks prior to his birthday I emailed Joshua's dietitian (Nancy) and asked for cupcake and/or cake recipes that I could use for Joshua's birthday so he would not be completely left out. Nancy created several recipes for us to try in our ketocalculator and I was so grateful. The weekend prior to this birthday I started to make the "practice" cupcake and it turned out great. It not only tasted like a "real" cupcake, but also looked like one (including keto friendly frosting - aka whip cream). Joshua LOVED his practice cupcake so I knew he would love it all the more on his birthday. He saw me make it the night before his birthday so he was excited about it all day and could not wait. We sang Happy Birthday to him after dinner and he had the biggest smile on his face as he ate his birthday cupcake. He was sooo happy and I was so glad we could still make his birthday special.
Yesterday we had his birthday party at Super Jump Party Zone (a bounce house type place). This was super special to me because his birthday party last year was scheduled at this place, but when he started having so many seizures I cancelled his party there and moved it to a bowling alley. I was just way too nervous to have him in a bounce house while he was having so many seizures per day. Last year's birthday party was really hard for me - he was just not "himself". I can hardly bring myself to look at the pictures from his party last year as he is having absence seizures in so many of them and it just breaks my heart. It was the beginning of a hell that I hadn't even fully known yet and it was just starting.
It was awesome to be able to give Joshua his bounce house birthday party this year! I was still a nervous wreck throughout the party and watched him very closely, but he did great! He had so much fun and had enough energy to run around. He did get tired a few times and had to take breaks, but he had more energy than we have seen in almost a year. We had no food at the party except for cupcakes as I thought it would be too hard on Joshua otherwise. I gave Joshua his special keto cupcake first with a candle that he blew out and he lit up when he saw it. He really loved everyone singing "Happy Birthday" to him and being the center of attention. He ate up his cupcake just as quickly as he did the 1st time and not once asked me for a "normal" cupcake like I had for the other kids. Instead of focusing on food, we focused on friends and playing and that is what is most important anyway. He had a great time at his party and it warmed my heart to see him so happy and full of joy.
Below are a few pics from his birthday party and one last time I just want to shout "We survived our 1st birthday on Keto!!!!".
Playing Skee Ball
Playing Fuse Ball
Going down the big slide!
Look how steep that is!
With his two "besties" - Kendra & StellaAnne
So happy!
Blowing out his candle
Enjoying his leftover whip cream
The "gang"
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