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Original poster

dd is 10weeks old having seizures, having tests to see whats causing them, but

154 replies

trace2 · 22/08/2007 17:20

how do i cope? been given diazepan to put up her bum when shes in them longer than 5 mins, waiting to see lots of specialist, what do i ask my minds all over the place at the moment! as any ones little had these since being so young? please i need to know i can talk to some one

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chonky · 22/08/2007 17:23

hi trace2 - I can't help r.e. things like the diazepam, but I'm sure that someone will be along soon who can. There's several parents on this board who have a dc who has epilepsy/ infantile spasms (I think infantile spasms is the term....?).

Who are you due to see? A paed neurologist?

chonky · 22/08/2007 17:28

Just bumping for you - I'm at work at the mo, will be about later for a chat.

FioFio · 22/08/2007 17:32

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Original poster
trace2 · 22/08/2007 17:33

we are due to see an epilepsy nures, paed neurologist? one at our hospital, one at childrens hospital, and shes having another mir scan,

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Original poster
trace2 · 22/08/2007 17:36

i just feel like am imaging it all to be honest

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Christie · 22/08/2007 17:44

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gess · 22/08/2007 18:21

There is a boy on ds1's bus who has the stuff that goes in the mouth after 5 mins. There are people on SN who have experienced what you're going through trace2- we can keep bumping until they see. Hope you get some answers soon (from the mri's etc)

needmorecoffee · 22/08/2007 18:39

Hi Trace2. My daughter started having seizures at 3 months of age and it turned out to be Infantile Spasms. Her first EEG showed normal epilepsy and she was given epilim but the next one showed the characteristic hypsarrythmia pattern of IS. What do they look like? IS tends to be a series of jerks, usually 30-60 in one 'series'. Genrally involving the whole body. Sometimes they look like crunches, other times just a arm jerking up. If it is IS itneeds to be diagnosed immediately and vigabatrin or ACTH started. Don't know how to say this without making you worried but I guess you're worried already!
As for the rescue med, there's a better one called Buccul medazilan (sp?) or Epistatus that goes into the mouth. Much easier to give than Diastat!
My daughter is now 3 and was cured of IS very quickly but now has status seizures and complex partials.
I'll answer any questions you have. We've been dealing with epilepsy from 11 weeks of age and its pretty scary not knowing and waiting for paeds and neuros etc. I also have video's of DD's very first seizures if you want to compare.

Original poster
trace2 · 22/08/2007 18:51

hi thank you, ill try and tell you what happens! first dd head goes to right and her eyes roll more trhe left one her body folds to right to then her right arm goes stiff, it some times looks like she as gone to sleep but found out this time she is not asleep, was in and out for two hours. some times she just stares, or eyes roll other times her lips claping. also her arm goes blue (or white) not same time as fit her eeg came back abnormal but inclonclusvie, so waiting for mir scan.

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Original poster
trace2 · 22/08/2007 18:55

needmorecoffee could you send video to my e-mail please if so its tracypearson6 at hot mail dot com

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magsi · 22/08/2007 19:05

Brings back memories for me trace2. Our ds1 had IS from about your dd's age. I noticed it first when I was breastfeeding him. He would jolt his head forward slightly. This happened loads in 'sections' throughout the day. It was controlled with Epilim and sodium valporate (I think) which never worked so he ended up on Vigabatrin with something else (can't quite remember now). He had to have the full dose of Vigabatrin to control the seizures. Anyway, they were controled and the next thing we were bundled off for an MRI scan. It turned out ds1 has cerebral palsy in the form of a severe right sided Hemiplegia, (affecting only one side of the body). I really don't want to worry you at all, but just to say that IS's can be quickly got under control. He is 5 now and like needmorecoffee's's daughter he has other complex partials and little 'absences'. I shouldn't worry about what questions to ask all the professionals you are about to meet. The conversation will just flow. It helps for someone else to go with you though, as sometimes you come away thinking 'what the hell did they say?" . Really good luck to you and your little daughter.

saggarmakersbottomknocker · 22/08/2007 19:16

Trace - I'm glad you decided to post over here, they're such a helpful lot .

Original poster
trace2 · 22/08/2007 19:27

thank you saggarmakersbottomknocker dd home today am so bloody scared of having her here with no help.

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Christie · 22/08/2007 19:39

This reply has been deleted

Message withdrawn at poster's request.

needmorecoffee · 22/08/2007 19:44

Cos I keep it on my bedside table for when DD goes off on one. Her fits (at the moment) are always during sleep, usually about 1am.

Original poster
trace2 · 22/08/2007 19:47

thank you all how do you cope?

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eandh · 22/08/2007 19:49

sorry to hijack ;-

trace2 you were asking about 3-6month stuff on wanted thread I have replied on that thread as I have some stuff you can have free for p&p if you would like it

needmorecoffee · 22/08/2007 20:05

I didn't cope at first, especially when I found out it was infantile spasms. I freaked and was a mess for ages.Then when she was seizure free for 8 months I started to relax but when she was 15 months old she had amassive status seizure and we had to call an ambulance. I was in such a state I couldn't even remember her name!
But its been 3 years now and it becomes 'normal'. Last year DD had 2 status seizures and one complex partial and I thought, ok, I can cope with that. This year she's had 8 already, including one when I took number 3 camping. In the last 3 weeks she's had 2 1am seizures.
I still worry cos I'm always scared she will regress mentally. DD has severe cerebral palsy and is visually impaired but thats easy to come to terms with. Epilepsy still worries me but you just have to get on with it.
It is hard at first but there's support here and there's a web site called 'parents of kids with epilepsy (POKWE) that has an email list. Plus an Infantile spasms list that is wonderfully supportive.
But you get through it cos you have too and you'll get through this.

needmorecoffee · 22/08/2007 20:14

Just don't let the docs fob you off with 'reflux'. Demand an EEG and MRI as soon as possible. If its clear of IS, demand another one in a month because things can change. Make sure she sees a paediatric neurologist to get a proper diagnosis. If they are dragging their heels, take her to A&E every time she has a fit. try and video them because babies never have seizures when there is a doctor present!
Tell them you're worried about infantile spasms (I had some paed bet his career that it wasn't. Man, was he wrong).

Original poster
trace2 · 22/08/2007 20:28

i can not see your videos!

they tried saying dd had reflux, as shes been 6 times now but on friday took dd to a&e with sezure was still in so yes they have seen her like it took them two lots of larazapam and some thing up her bum to bring her out of it then shes been in since then till today

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lourobert · 22/08/2007 20:30

hI, not got much time to post but just wanted you to know that my son was dx with Infanitle spasms at 5 months. #He was later dx with WIlliams Syndrome. Ive built up a fiar bit of knowledge since this happened to us and from speaking to ther parants whose Children had infantile spasms.

My son is on medication (epilim and vigabatin) and I dont know to jinx anything but were doing well with controoling them.

YOu 'll find SO much support on here so just keep posting and people will be more than happy to help you out the best they can.

Feel free to ask me anything about IS should you need any info somewhere along the line XX

lourobert · 22/08/2007 20:35

also as needmorecoffee suggests don tbe fobbed off with 'reflux' and demand MRI and CAT scans I know we had too. you know your child better than any doctor.

I hate my sons IS. I also say that I wouldnt change the Williams necessarily as they why he looks the way he does but the seixures are bloody awful but you do cope because you have too I guess.

Itys my wish one day that my son wont have to be on medication nay longer, I know its a long shot but Id happily exchange anything for that.

Keep us posted XX

SouthEastLondonMummy · 23/08/2007 23:07

My DD2 had seizures from a few hours after birth, it took massive doses of drugs to control them, and they meant she had to be ventilated etc. They were controlled within 3 days, and she's had none since, but it's always hanging over us. Will check your thread again tomorrow, need to go to bed! Your DD needs an EEG and an MRI. My DD's MRI showed that she'd sustained brain damage during labour, and has cerebral palsy affecting her left side. Seizures don't necessarily mean cerebral palsy though! But your DD needs the EEG and MRI to find out what is going on.

SouthEastLondonMummy · 23/08/2007 23:10

Just want to add, you can talk here, and you're not the only person to experience this, though you might feel like it. I've discovered you can come to terms with anything if you have to, and she is going to give you a lot of joy x

Original poster
trace2 · 24/08/2007 09:34

thank you for making me feel wecome! i really think you all doing great jobs w3ith your children i just hope one day i feel like you all and still be a great mum like yous all.

dd as had a few more little ones since been home, i can not stop watching her and waiting. also how long do i have to wait to see the paed neurologist ? and mir scan, if i knew when they was i might not panic as much, we not got much money but if we can get to see paed neurologist q2uicker i will pay.

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