View Full Version : anyone else who's child has
epileptic encephalopathies? DS seizures are unable to be controlled by meds and the doctors are looking at steroids and I am trying to find ANYONE who has been through anything similar!
hey there sorry dont have any experience with this but wanted to give you a link to this
its a special needs forum from the US (mods its nothing like BH totaly difernt topics etc,and i really think it may help this mum out who is going through a hard time )
Im sure you will find mums on ther with simalar kids there is alsorts on there can be overwelming at times on there but a great group of special needs mums i know ther is alot on there with epelipsy, i dont know a much about that side of things my DD has epelipsy but not to the sverity of your son
hello my daughter has suffered infantile seizures since the age of six months she is now 27 months and still suffers from seizures, she has had steroids both in tablet form and ACth injections, whilst she was having the injections there was an improvement although her weight ballooned dramatically from the steroids, unfortunately the injections are only short term and the second they stopped the injections the seizures returned and the oral steroids just didnt work for her at all. i have read many positive reports on steroids and lots of success stories but unfortunately we werent one of them, i hope that your son gets better and i hope the steroids have a positive impact on him!! take care.
Thanks to both of you. DS had his 3rd injection today and so far they have made no difference. Although he has gained a bit of weight and is currently grumpy 24/7.
My son has epilepsy. He had a course of ACTH a few years ago, at the time it made him cranky and he did have less szs. How ever as soon as the needles stopped the szs were back, and were different to before he started the ACTH. Are you checking blood pressure and sugar levels, and did they give him something to help with the stomach irritation? My son was taken off the steriods because his blood pressure went up, so for him it was a waste of time.
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