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Hi
This is my first time posting and I just want to say how happy and thankful I was to find this parents of special needs forum! I have 2 children, my daughter Jessie is 6 and Justin 5.
My special needs child is my son, Justin who recently turned 5. He was diagnosed at 13 mo. with a severe form of epilepsy. He was a very happy baby and met all of his milestones his first year(except for walking). He suddenly started having atonic/myoclonic seizures at 12 months.
We had no idea that they were seizures because they aren't what you would typically think of. They were split second, he would lose tone and since he was crawling his arms gave out and he would bang his head on the floor,tile and hard wood no less But the more I watched him the more I noticed they were happening every 5 minutes!!!! Some were more forceful than others. I was terrified as you can imagine!!!!
Anyways, very long story about that, he was quickly sent for EEG and MRI. We also quickly got up to see a very good ped. Neurologist who was able to diagnose him correctly with the exact type of seizures with the types of medicines that would help those type. Unfortunately we could not get him on a good combination of medicines to help for what seemed like an eternity.
He was on very high doses of several medicines. As a last resort, at age 17 months he was put on Prednisone ( a steriod). It is an unconventional drug for seizures, but for some reasons(dr's not sure why), it often times helps these kinds of seizures. Lo and behold it did. He was on a high, short term tapering regime and still on the other meds too. We were warned of the side effects (aggressiveness, weight gain, increased appetite etc.)
Ironically, it did not increase his appetite. In fact since Justin had started all these meds at 15 months, his appetite got very poor. He was still developing cognitively which was a great assurance but he wasn't walking either. But we were THRILLED his seizures were controlled.
After being weaned off prednisone after 2 mo, the seizures came back and he went back on a long term (6mo) of prednisone again (and it helped again).
He started walking at 18 months but his language took a back seat ( I was told that was common). His appetite was terrible. He quit growing all together (no height or weight at all for a whole year!) He had low tone, clumsy, etc.
He was on so many medications and had so many side effects (ended up in ICU for 5 days suffering from adrenal crisis when he was 2). He has been developmentally delayed. He has been to every specialist imaginable (Neurologist, Gastroenterologist, Geneticist, Endocrinologist, Opthamologist, Neuropsychologist, Nutritionist, Chiropractor, Oral Motor specialist, Occupational Therapists, Physical therapists, his chart is a book at the Lab, Pharmacy, Pediatrician and Neurologist).
I could go on and on. The good news, praise God, is that he is doing pretty well on his current seizure medication(only one). However, I believe the frequency of the seizures, medication or both caused him to be delayed. He is about 2 years behind. He has been in an ESE pre-k going on 3 years (absolutely wonderful teachers!). He also has an awesome speech therapist/oral motor specialist. He goes 3 times a week and we recently started OT 2 times a week 5 months ago, AND he just started PT 2 times a week (motor lab). We are extremely busy with him!
I am just recently learning that he has sensory issues. I just finished reading the Out of Sync child and it was a real eye-opener! He has a major eating problem (I know part of it is that he has diminishes taste buds due to him having to take and CHEW some of his medication for so many years
He is such a joy with such a great personality, I am so thankful for him and how far he's come. But I have to say that it is so difficult at times especially with the eating. I have read some other posts and I was chomping at the bit to respond! Some people can be so judgemental, even friends! I am so thankful to find a place where other moms understand!!!!
I'm so sorry this is so long, but I thank you for having this forum!!!
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Welcome aboard. Wow, you and your son have really been through a lot!
I have a question for you. My son was having seizures when he was 9 months old and the doctors put him on phenobarbatol. Did any of your doctors ever suggest or tell you anything about that drug? My son seemed to be delayed for the amount of time that he was on it. It was as though everything just stopped. Then when we took him off it, he went on his merry way, just behind about a year and a half.
There are some very knowledgable moms on this board. I'm sure you will love them.
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Thanks for the welcome!
Actually, no Justin was not put on phenobarbital. When he was first diagnosed with epilepsy we saw a local neurologist(not a pediatric one), who gave us a very rosy picture of epilepsy (that he would probably outgrow by the time he was 3, medicine would help etc). He didn't tell us what type of seizures he was having, he just said "partial" and actually they were in the "generalized" category. He put him on trileptal.
He was only on it for a few weeks and we were referred to a pediatric neur. who correctly diagnosed them as "atonic/myoclonic" of the generalized category and he showed us a small list of medicines that would even treat those type of seizures. I dont think phenobarbital was one but I know it is commonly used for babies and small children. Justin was put on Klonopin and Topomax (they call it dopamax because it affects learning). Then prednisone with those 2, then Lamictal in addition. After off of topomax and prednisone then Klonopin, Lamictal and Keppra (which made his seizures worse). The whole time I whole-heartedly believed that Klonopin delayed him.
Finally at 3 1/2 he started Depakote(which I was VERY reluctant to try due to possibility of liver failure), we slowly weaned off the klonopin and lamictal and he has been doing fantastic! He started making huge leaps in his development also
The Dr wants to do another EEG(a long 4 hour one) this month just to see if he is still having any abnormal brain wave patterns. I have to admit I am so scared. I do think the seizures are lurking silently, but we have pretty much run out of options with medicines. I am just glad for where he is and everyday I remind myself where he was and how thankful I am for him. :D
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Welcome to here and the Special Needs Forum. I'm sorry your little guy has had such a tough beginning! My daughter is 13 months and I can only imagine the shock you went through with the seizures! It sounds like you've run the gamut and have been very diligent in trying to get this under control.
With the delays he (understandably) has had, how will you handle kindergarten? Will you be home schooling, or using the resources available through you through your school district? How do you handle his being away from you, or is everything pretty much under control with the medicine? Does your dd just take it all in stride since it is what she knows? Thank you for sharing your story, and I'm sure it will help someone out there who is looking for a path to find an answer.
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First big hugs and welcome on board. Im sure you will get information and support here and you definately will get laugh and a break from day to day issues so post often
Anne
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Welcome! The special needs board is new. I just joined the site a couple of months ago myself. You have been through so much, Reading your story puts my world into perspective. You will find many women here to support you including myself.
My ds 9 is on the Autism spectrum and has had learning delays due to being bounced from class to class. He has sensory and eating trouble as well. He is at a new school and is catching up quick. So, don't give up. With the support system your son has, I am sure that he will catch up with his peers. Hugs to you and your kids.
Mitzi
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With the delays he (understandably) has had, how will you handle kindergarten? Will you be home schooling, or using the resources available through you through your school district? How do you handle his being away from you, or is everything pretty much under control with the medicine? Does your dd just take it all in stride since it is what she knows?
First of all, thanks for your welcome! As far as kindergarten, you definitely hit a nerve there! He actually turned 5 the end of July and should by public school's standards be in Kindergarten. We went through a rigorous 5 month battle regarding that. I was dead-set against him going to any type of K. I really thought he lost over a year of development with the med/seizures, that he needed another year to catch up. Ideally I wanted to keep him in the same class that he had been (pre-k ESE) with the same teacher he had for 2 years and she agreed and so did his neurologist and the school psychologist. But the law states if a child is 5 in the public school system they have to be in kindergarten. You as a parent can make the decision to hold them back a year, but if they are receiving services through the school they have to be in some sort of kindergarten (which would have been a "self contained K-2 mild/moderate delay). I was not for that at all at this time. I did not feel home-school would be the answer either for his needs. I even checked into reg. private preschool but he wasn't even ready for the 4-year old programs.
The good news is that we were able to get a special exception for him to stay in his pre-k class one more year. It is 2 1/2 hrs and 2 other kids and 2 teachers. He loves it and I feel very comfortable with him there. I truly do not know what next year will bring. I know he is not ready for mainstream kindergarten and I worry about his physical endurance(fatigue) and his poor eating, plus how we will manage his private therapies. I know it's almost a year away so we'll just have to wait and see. We keep saying this is his year!
As far as my dd, I cannot say enough about what a true Godsend she is She is 21 months older but has always been ahead of schedule. We made the decision in the begining to bring her to his appt's (except for the EEG's which some took up to 7 hours and he had about 7 the first year). But for all his therapies, neurology appt's, blood draws etc, she was there. as hard as it was to manage both, I think it REALLY helped her to empathize and as one of my friends says "she is wise beyond her years". She is one of his best teachers. She always plays school with him and tries to teach him things or she plays like she is the speech or occupational therapist. He loves her of course and wants to imitate her. She is a little mom to him, which can annoy him at times! But I'm glad they are so close
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Originally Posted by CelticFaerie
Welcome! The special needs board is new. I just joined the site a couple of months ago myself. You have been through so much, Reading your story puts my world into perspective. You will find many women here to support you including myself.
My ds 9 is on the Autism spectrum and has had learning delays due to being bounced from class to class. He has sensory and eating trouble as well. He is at a new school and is catching up quick. So, don't give up. With the support system your son has, I am sure that he will catch up with his peers. Hugs to you and your kids.
Mitzi
Hi Mitzi,
First let me say thanks for your reply. I read one of your posts about "venting" and I totally agree with you! My ds does not have autism, but he has alot of the same issues and we run in the same circles you could say. I know there are good days and bad days, but I feel the same way about some of those moms of typically developed children and their complaints! I especially can relate to the sugary cereals I hear from so many that we're "spoiling him". I get very aggravated at times and other times I just try to ignore their ignorance.
I wish you the best with your son and let me know if you come across any great advice on the eating issues too. That is one of my main sources of frustration at this point.
Hugs to you too
Christy
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Dear Christy,
Welcome to the special needs forum and I am so happy that you have found us. Although we all deal with different issues the forum is a great place to find resources, share expierences, just vent, and be supportive. We all have one issue in common, we have wonderful special needs children.
I thank God that you have a proper dx for your DS and are receiving services for him. I wish you all things good for the future.
Welcome to this forum and again, I am so happy you have shared so much with us.
April
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Originally Posted by jesjusmom
He has a major eating problem (I know part of it is that he has diminishes taste buds due to him having to take and CHEW some of his medication for so many years
Your family has been through so much! My dd Lily is 2-1/2, and due to esophageal issues at birth, she has a feeding tube. We are working on weaning her off the g-tube feedings now, but I have to say, sometimes I'm really thankful for it. Sometimes people will make comments about how nice it will be when we can finally get rid of it, and I have to tell them that it's really not that bad. At least she doesn't ever have to taste any nasty medicine! (I don't think others really understand that though.) Lily has seen OT & ST for feeding therapy, which I'm sure you're probably already doing. We're so thankful that she doesn't really have many texture aversions, and will eat about anything. Her biggest problem is that she just doesn't eat enough to maintain adequate weight gain. She is, however, taking all of her meds orally at this point (Prevacid is strawberry flavored, and she's on Prelone - a steroid - that's grape flavored). I also have to make sure her food is in smaller pieces because if I give her a sandwich, she still has trouble biting off pieces of it. Yet, the kid will eat green olive/mushroom pizza or baby carrots!
Thinking of you, and hoping the latest EEG has excellent results! Hugs!