Special needs
- Special needs
- Infantile spasms/fits
7/9/08 22:03
7/9/08 20:57
bailey and seths mum
i am so sorry for your loss*** alt="" src="http://my.bounty.com/smiley/msn/broken_heart.gif" />
i have just looked at your web site and i cried so much,he had so much love in his short time in this world but it seems so unfair and words can not say how sorry i am
sally xx
5/9/08 19:08
Hi. I am so pleased Ellie is doing so well.
Seth was originally diagnosed with west's as his eeg showed sever hypsarythmia(sp). He was also having terrible seizures and together with eeg results west's was diagnosed. The meds started to help the seizures but Seth had severe jolty movements. It wasn't until they realised he wasn't having cluster seizures but involuntary movements that he was transferred to a specialsit hospital and investigations started. he was ventilated as he became very poorly and the movements were unstoppable.
we were then told once there that he didn't have wests but epilepsy was an underlying symptom of something much worse. they could tell us he had a degenrative brain disorder but didn't know why or what was going to happen. We spent weeks and weeks in hosp waiting for a diagnosis which we didn't get until 4 weeks before he died. He had an X linked genetic condition called Aristaless type homeobox (ARX). There are only a few cases world wide and Seth had a new mutation, the first child world wide to have this new strength. The only child to have sever brain atrophy.
My baby boy's brain was shrinking by the day and there was nothing anyone could do to stop it. He lost his feeding reflex, his smile, his laugh, his muscle tone, his cry, his sight, eventually all he could do was lay down and be cuddled. Please take a look at his website.
5/9/08 17:12
it's funny - i met the first family i've seen with Wests the other day. Their little boy is still having spasms. Eleanor is doing so well, she has been spasm free since May and med free for a month now ( i apologise if i've said that already), and I almost feel guilty that my child is doing ok. When we were first told she had West syndrome i didn't fully appreciate what a scary horrible diagnosis it was - i read all the web pages that 'factually' tell you the likelihood of long term problems and even death and it never really sunk in. I am so sorry about little Seth. It sounds like he was such a fighter and brought so much love into your lives, but that life dealt him such a hard blow that he couldn't survive it. You mention Seth also had a neurodegenerative disorder, I assume that that had a lot to do with why he was so unwell?
5/9/08 09:04
Thank you. i just didn't want to come on here and scare everyone but equally I would have loved to have had this much support when we first knew about Seth. XXX
4/9/08 21:15
Just wanted to say that i'm thinking about you and your family Karen - we're here for you too XXX
4/9/08 19:40
Trying to cope with every day as it comes really. Life is awful without Seth but he was so so poorly an he couldn't fight any more. It is his first birthday tomorrow and I can't stop thinking about what could and should have been. Thank you for asking. XXX
4/9/08 18:34
silly question but how are you karen? xxx
4/9/08 15:21
I have been reading your posts for ages and I hope you wont be offended. i just wanted to say how wonderful it is to see you all being so supportive for each other. When we were originally given the West Syndrome diagnosis there didn't seem to be anyone to talk to so i am pleased you all have each other.
Karen. XXX
4/9/08 15:18
pants is pretty mild ..... thanks 4 advise... lewis as not had a fit 4....9days now
he had an eeg yest which was a vast improvement on his last... x2/9/08 21:29
IS is pants isn't it?
Eleanor seems to have been quite lucky ( thank goodness). We got it diagosed and onto treatment in about a week ( thanks to videos on You tube!) - she was on high dose prednisolone and vigabatrin. She stopped fitting over about 2 -3 weeks and has been fit free since may ( ish). We weaned her of the vigabatrin and she has been med and spasm free since the 1st of august. I am just beginning to believe that she may have a chance of staying spasm free - something which I couldn't have dared to hope for even two months ago. eleanor has symptomatic IS secondary to a brain haemorrage around birth, so we were given a really poor prognosis. The good news is she is progressing fantastically, she is now able to sit and over the last few days stand up ( with a bit of help) - which is amazing as she is hemiplegic from the stroke. We had an amazing first birthday at the weekend . I wish you so much luck with your little one - i hope your little baby will be a 'success story' in a few months and I hope i can be of help if you need it. The only other place i've found useful for Wests is an american forum - infantilespasms.com/forums. It's a bit 'american', but it's quite useful - if only to 'boast' about how infinately more simple our health service seems to be over here.
2/9/08 10:54
Hiya can i join you??? my ds lewis as just been diagnosed with infantile spasms.. hes just finished a 2week course of injections(one every other day) tomorrow he starts on pregnisalone (sp).. hasnt had a fit for a week now... poor lil guy as been thru so much... he was born with downs syndrome (which is absolutelty fine) he had a heart bypass in april and we were just about 2 get discharged from hosp when the fits came!!! makes u wonder what next??????? XxX Tina & Lewis (7nhalf months old) XXX
21/8/08 17:40
Hi
ive just found this section of the forum and thought it post.
my son harvey has tubeorus sclerosis, epilepsy, wolff-parkinson white syndrome and west syndrome (infantile spasms)
when he was 2 weeks old he started having proper full blown epileptic seizures and was diagnosed with the epilepsy and after scans and tests revealed he had tumours on his heart, kidneys, and brain he was diagnosed with tuberous sclerosis complex.
he had been in intensive care and in and out of neurology wards in alder hey childrens hospital and when we got him home he seemed fine,
not long after he turned 5 months he started havin spasms that consisted of him bendin forward violently and screaming at the same time, he would have about 20-30 of these in the space of 10 minutes and would have about 4 attacks a day. at first the doctors at our local hospital on the isle of man thought it was his epilepsy but as i knew it was different to his seizures i insisted he saw a neurologist in alder hey and thats where they diagnosed him with infantile spasms (or west syndrome as they called it)
he was put on vigabatrin to control them aswel as phenytoin and carbemazepene that he was already on for his epilepsy.
he is now 10 months old and has been spasm free for 3 months now due to the vigabatrin, he is sitll havin the odd epileptic fit but for now the spasms are under control xx
15/8/08 14:30
Hi Mums
I just joined the bounty club this morning, just to see if any other babies out there there just like my Millie.
Millie has just turned 10 months old, and she first starting having fits / seizures from 7 weeks old, her fits have stopped since 17th February but she has on going appointments with her consultant just to rule out anything wrong. Shes has her eeg which came back normal and she just had her MRI scan on Tuesday which we are awaiting results on but my mian concern is that Millie has no balance what so ever, she can't sit un supported, she isn't crawling and she isn't reaching out for anything, she is seeing a physio on Monday for an assesment, but it is quite concerning. Has any body else had this experience or am i just panicking????
13/8/08 08:44
aimee had her second sezuire on the 27th, not had anymore since but waiting for her eeg results which we should get when we see her consultant on monday but he thinks it may be the start of epilepsy so will prob put her on some medication to stop them29/7/08 07:32
Hi Nathard it must be hard especially when you are weaning her off drugs but you don't know wether they are symptoms or not, i know what you mean, like Zoes seizures i keep thinking is it me am i neurotic like they are making me feel, but then i am thinking no it isn't normal for a baby to be doing this and she needs sorting out i am at war with them peads now. Hope you get your daughter sorted out and i hope she is seizure free when she does come off the drugs. Crossing fingers. Sharon x
28/7/08 10:39
just keeping an eye on her for the next few days. One minute i am absolutely convinced the hypsarrhthmia is back then i'm convinved it isn't - i feel like i'm on a roller coaster. We are weaning the vigabatrin, as they don't like them to be on it for long as it is known to cause irreversible visual problems if used for a prolonged period of time ( the FDA in america won't approve it for that reason!). I also have a bit of a morbid fear of her being 'drugged up' on antiepileptics for any period of time, though i have to acept it may be the better of two evils.
28/7/08 10:38
just keeping an eye on her for the next few days. One minute i am absolutely convinced the hypsarrhthmia is back then i'm convinved it isn't - i feel like i'm on a roller coaster. We are weaning the vigabatrin, as they don't like them to be on it for long as it is known to cause irreversible visual problems if used for a prolonged period of time ( the FDA in america won't approve it for that reason!). I also have a bit of a morbid fear of her being 'drugged up' on antiepileptics for any period of time, though i have to acept it may be the better of two evils.
28/7/08 10:38
just keeping an eye on her for the next few days. One minute i am absolutely convinced the hypsarrhthmia is back then i'm convinved it isn't - i feel like i'm on a roller coaster. We are weaning the vigabatrin, as they don't like them to be on it for long as it is known to cause irreversible visual problems if used for a prolonged period of time ( the FDA in america won't approve it for that reason!). I also have a bit of a morbid fear of her being 'drugged up' on antiepileptics for any period of time, though i have to acept it may be the better of two evils.
28/7/08 07:46
Hi i am sorry to here about your little girl nathard, will you have to put her back on the full dose of meds again? Why were you taking her off them were they seeing if she has grown out of them?
Hi Sally i am sorry you haven't got answers, at least they are trying to do something not like my peads they just fob me off like i am a neurotic mum they think it is linked to the reflux but i don't think it is, i have been doing a lot of research and allergies can cause seizures as well as low blood sugars and metabolic disorders have they ruled all these out. They said that Zoe isn't allergic to milk but they haven't checked for intolerance which they have to do a different test for. But even better her total ige(antibodies) the normal range for Zoe is 0.5-29.0 Zoes is 291.0 so her antibodies are high but guess what they just didn't say a thing said everything is ok i am sorry but that is not ok bloody sods, i have been trying to get hold of the consultants secretary, i am going to ask about other allergy tests because i think it is all related with the seizures she hasn't had pasta for a while and she hasn't had any seizures, i am going to try her this week and see what happens. It may be just a coincidence. They said they were going to try another eeg but i said what is the point she will carry on again but i want them to now but i am going to ask if they can sedate her as she won't let them do it otherwise or do one whilst she is asleep which would be even better as this is when hers are happening, she does stare a lot but i think it is to do with tiredness. Sharon x
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I'm sure you've read on ttc - but i looked at your website too Karen. it is so sad, but such a wonderful memorial to an incredible little boy. I know that when you are in a situation that you have no choice about, you have to try your best to cope with it, but you did so well to allow Seth to spend his last days at home with a wonderful family who loved him
I look forward to getting to know you and good luck with the whole baby mking thing XXX