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Ohtahara Syndrome Type 2

I need some help my son has been diagnosed with Ohtahara Syndrome type 2. I have read up on the Internet about it but cannot find type 2. Does this mean that 2 is worse than 1? Does anyone know where I can find out more about this Syndrome or help me in anyway??? -Vicki Mayers
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My son, who is now nearly 18 months has Ohtahara Syndrome. He is very developmentally delayed, and has lots of fits - but in himself he is healthy and beautiful! I have never heard mention of 'type 2'. There is a web community on Yahoo Groups for Ohtahara Syndrome - http://health.groups.yahoo.com/group/ohtaharasyndrome/

Tamie Horak is the site leader, and looks after her grandson, Tyler, who I think is now 9 ish, and also suffers from OS.

There is lots of support, and discussions about drugs and caring for our children.

I hope things with you are ok, and that you are coping with the diagnosis. Whatever your current situation - please consider joining the group - it proves that we're all not alone in this, even if we're all a bit geographically spread out. Take care. -Liz
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I was wondering if your son was born normal and then started to get worse? Zachary's speech was always slightly delayed but he could walk, run, ride a bike do all those things. He got Seizures last year at 5years old and has just gotten to the point now that he cannot walk on his own anymore. When I look at my son I cannot believe it is the same child. If my son was born this way it would be alot easier to deal with but I am just watching my son get worse and don't have a clue why?? That is alot for a mother to deal with. Right now they have Zachary on Keppra and I have stopped because he is like a total Zombie and he body at night is constantly jumping. It says not to be given to children under the age of 16yrs old. Why would it be given to my son. what seizure medication do you give your son? Zach was on Lamictal and he got Jaundice. I don't know whatelse to do. I am hoping to hear back from Sick kids hospital as he is to have a spinal tap, Muscle Biopsy and a test from his eyelid. Anyway just a really frustrated mom. -Vicki
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Hi Vicki, Yes, Josh was born apparently ok - but he started having fits at 12 weeks old. Prior to this he was doing normal baby things, but obviously given his age, it wasn't that much! Maybe this is why they've described your son as having 'type 2'?

One thing does occur to me, OS is a tricky one to diagnose, without stirring water unduly, I would be thinking about trying to push them as to why they've made this diagnosis and possibly getting a 2nd opinion. The reason I say this, is that OS is normally a condition that is present either within hours of birth (with some babies actually fitting in the womb), and certainly within the first 12 weeks of birth. I have never heard of someone developing OS at the age of 5, and it is not the 'normal' presentation that Dr. Ohtahara has described.

Josh has an abnormality of the brain, so although he seemed fine at first, that he was going to have problems was unfortunately inevitable. But, I can understand your heartbreak at seeing your son go downhill so rapidly.

Josh currently is not on any anti-convulsants as quite frankly none of them worked. However, he was on Keppra - and it just didn't do anything for him, he didn't really have the side effects. But I have heard that being like a zombie is common with this drug. Don't worry too much about it not being normally prescribed for children under 16, half the stuff Josh has been on hasn't been given a formal ok for children, but the drugs the dr's have used for him, do get used on children with severe epilepsy, they're not guinea pigs! As I understand it, here in the UK at any rate, the testing for children and then getting permission to use it for children is far more lengthy, complex, and costly so the drug companies don't do it for unusual drugs such as AEDS (anti-epilepsy drugs).

Life with this condition is pretty terrifying - the fits are so severe and so frequent - and watching our children struggling with them is heartbreaking. I know what you're saying about knowing about it from birth - but having to deal with Josh who only smiled for about 6 or 7 weeks, and has never done anything at all, I feel you're blessed to have had sometime with your son being able to enjoy life. I am pleased that I didn't know there was anything wrong with Josh for the first 3 months, although looking back at the pictures is sad in some ways, in others I can look back and smile at the joy and the brief time when we were just like everyother new parent. But the feelings are very personal and very raw, and so you have every right to be cross, sad, furious, depressed, and all the other feelings of grief, after all we're all grieving for the loss of our children whether they're still with us or not.

This is a list of drugs Josh has tried, none of them have worked, but as his problem's structural this is pretty much what we were told to expect:

Vigabatrin - I believe this has been a wonder drug for lots of children with OS; Clobozam Topirimate (Topamax) Prednisolone (ACTH or steroids) Keppra Phenobarbitol

Here are a couple of links you may find useful - try and take it easy, get as much support as you can, and if people offer to help - accept!

http://www.epilepsy.org/ctf/ohtahara_syndrome.html http://health.groups.yahoo.com/group/ohtaharasyndrome/ http://www.ninds.nih.gov/health_and_medical/disorders/ohtahara.htm

I have to say the information about OS is quite negative, but bear in mind it is quite rare and that all children are different. Also, as I say above, I've never heard of children getting it as late as your son, so I wonder if something else is going on.

Take care, hope this helps in someway, and if you need any advice or anything, either email me or do join the yahoo group - there's so many people on there with knowledge of different aspects of this. Plus, Tamie has been living with it for years with her grandson, and knows about lots of different families who aren't necessarily on the site. I have posted this on the original website where I found you too as I didn't know whether this would reach you through the address above although I assumed it would! All the best. -Liz