dd 16weeks old posturing to side ( not all the time) did this happen to

[trace2]

any of your children so young? dd was told havings sezures from 3 weeks now told what she as is unusal she postures to right or left side from time to time it lasts about 5 mins to 8 hours the longest, she also does othr things but wondering if any other child as done this from such an ealy age, they told us they dont know whats wrong with. and if they is have they gone on to do anything else, as she now this time went unconcious and told we have to watch 24 hours a day, as they dont know what she will do next. inbetween shes a happy normal very placid baby

i justneed to know whats wrong so maybe we could cope

[needmorecoffee]

dd's seizures always turned her head to the right. She started at 11 weeks old. The first few EEG's were clear then we saw spikes, then hyps.
Wish I knew the answer.
The only things that leap tomind are Infantile spasms (they would eventually show up as hypsarrythmia on an EEG), Sandifers syndrome or some kind of dystonia.
Is she developing normally?

[trace2]

hi needmorecoffee they ruled out Sandifers syndrome her reflux not servire enough he said i still think its some kind of fits but just dont know

[needmorecoffee]

You must be so fustrated, especialyl at how slow the docs are being.
And misinformation about turning the head. In seizures the head will turn to the side the seizure starts on (no idea why) so its pretty common.
When her head is turned, can you turn it back? Is she aware? Is she happy/not happy?

[Diddum]

Ms ds's seizures started at 3 days old. They were well controlled under medication for a few months. We haven't had good control over the Summer but it's improving again now.

Hs's EEg shows a spike. He had EEGs at 8 days, 3 months and 6 months - all similar. His seizures have sometimes changed in the way they present. At this stage of life a baby is going through big changes in their brain so I suspect this is why the seizure types change. No known reason for ds's seizures. Nothing on EEG. Nothing to suggest a syndrome yet - that could change in the future but the neuro team think it is most likely that he has epilepsy of unknown origin and that hopefully his developement will not be affected. But no guarantees. Next neuro appt in a few weeks.

I think that the only people who can asign a diagnosis are you and your medical team who have the facts and information about your little girl. Push them to give you as much information as possible and talk to them about the things you're worried about. And you may have to wait to see how things unfold. that is very hard.

I don't want to start amanteur diagnosis but I think Infantile Spasms usually present after 3 months (so they were never considered likely in my ds). No guarantee that they couldn't start earlier but it would be less usual.

DS's seizures can be nasty enough. He goes pretty blue - especially when he was smaller. they've gotten a bit better as he gets older but he still goes off colour.

Hope you get some clarity soon and that your dd stays well.

[trace2]

no we can not move it a lady pead did a few weeks ago with great difficulty, and dd screamed in pain our pead said she shoulnt have done that,and some times shes aware, but unhappy cos she carnt move other times shes stares or goes unconcious.

diddum, sorry abouy your ds, yes we have been told we have to sit it out, her first eeg was abnormal but inconclusive, the second was clear, the pead she is under is not near us only sean him once and its him who says shes not having fits

[dizzy34]

Hi, My son had seizures from four days old. He always turns to one side during a seizure, but also some days when he is not having a seizure he favours one side over the other and we can not move his head. He is four and half now and has done this from being tiny. Dont let anyone ever try to move her head if its not moving easily, or her limbs during a seizure (i know you prob know this).

Your diagnosis and tests seem to be taking ages. I suppose we were lucky (if you can call it that!!!) we went to the a&e at our local childrens hospital and we got a fantastic pead consultant neuro, who we seen daily while we were in and weekly when we were home (we were in for about 8mth-one yr in the first year. 8 months non stop and then the rest in and out.) Every year since we have had about 4 months in and out with pneumonia.

Have you been referred to a consultant neuro yet?

Dizzy

[trace2]

hi yes seen an nuro pead this week, he says hes taking our videos of chloe to a senimar with diffrent consulants nuros around to see if they have seen any thing like hers as he says that they are some kind of sezues but dont know what he is a top nuro from sheffields childrens hospital,but to be honest i am losing confidance in him! so now have to wait 6 more weeks to see him again