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Avatar universal

A very strange disease of my baby

Hi everybody,

Please help if you can!!

My baby is doing a very strange thing.He has seizures for hours!! He has no epilepsy.

It always starts 20 minutes after he has fallen in sleep. His face goes red and he has myoclonus in his abdomen at every 2-5 10 seconds. Usually you cannot get is contact with him when he is doing this. it terrifying!!! After every myoclunus he throws his legs and moves his arm in a strange way.

Doctors do not know what his illness is. Plesase help me if you have any idea I started going crazy about it and I am very sad as well and frightened.

Thanks a lot!!!
20 Responses
Avatar universal
Hi sorry to hear your baby is having these spells it must be relly distressing for you. My son has epilepsy and I know anytype of seizure is quite frightning for the observer. Don't really know if this will help but apparently babies and children can have seizure like episodes which are non-epileptic. I read an article that said they normally resolve themselves in time if there is no other underlying reason for the events. I would imagine that if you have not seen a peadiatric neurologist then you would be wise to do so as this type of event is their specialist field. The article I read was on paroxysmal non-epileptic seizures in babies. I cant give you  a link (dont know how too) but perhaps you could type it in google and read a few articles too see if it matches up to your babies symptoms. Hope this helps a little . Take Care Crystaly
Avatar universal
First off, sorry to hijack this thread.

Crystal,

to provide others with a link, bring up the appropriate webpage and click on the address URL box (starts off with http://)such that the whole address is highlighted (turns blue);  you can also  highlight it manually by clicking one end of the address and then dragging the mouse across the address until the whole thing is highlighted.  Next, copy the address  (PC: hold down the buttons ctrl and "c" simultaneously.  Mac: hold down the apple and "c" buttons sim,ultaneously.  Alternatively, you can go to the "edit" tab on brower tool bar and click "copy").  You can then paste the link, in a post for example, by simultaneously clicking ctrl and "p" on a PC, apple and "p" on a Mac, or by going to edit tab and then clicking on the paste button.
I know this isnt medically related but now you can (hopefully) provide links to others that they may otherwise be unable to find on their own (sometimes one "stumbles" upon a particularly useful link).
Take care and please let me know if you need any more information.
Avatar universal
Hi Judson,

I posted a similar comment yesterday to what I will post now but dont know what happened to your thread!

Sorry to here about your baby - it is very scary!   I believe you need to see a pedatric neurologist to get to the bottom of the seizures.  Do you have an idea of what the temperature of your baby is when these incidences occur?  If you baby is overheating this could cause a seizure - this is a very long shot but still a "remote" possibility.  A specialist is your best bet for an appropriate diagnosis.
Avatar universal
Thanks I will try and follow that advice Im a bit of a technophobe I think ! I will have ago though and appreciate the info you gave. I usuallly find things by default as I dont really get links and stuff. Language barrier (computer jargon) Your right about the temperature bit it could have been febrile convulsions(high temperature)  but I think if I remember rightly the Drs had ruled this out. Thanks alot anyway I will write the instructions down you gave cos I wont remember anyway. Take Care Crystaly
Avatar universal
hi IF IVE DONE IT RIGHT HERES THE LINK FOR THAT ARTICLE i WAS READING
http://cat.inist.fr/?aModele=afficheN&cpsidt=2889523.
iF IT ISNT THIS i APOLOGISE ,  iF IT IS THANKS SPADE. CRYSTALY
Avatar universal
Good job! Link works well (only thing I would recommend is not putting the period at the end of the link as some people may think thats part of it)
Avatar universal
Hi just a suggestion, is it possible to have your baby brought to a sleep center to be analyzed whie the baby is sleeping. Maybe the can tell from there.   If you havent done so go to a pediatric neurologist.  Wishing you so much luck for your baby.
Avatar universal
hi everyona, thanks for your answers.

Cristaly , I read that article  thanks a lot. They don't write about that thing that my son is doing but   somehow they are similar to it as they are all  movement disorders. It would be so nice if  one day it disappeared.

Many many doctors have already seen him and they do not have an idea. He had eeg video eeg Mr  blood tests .


I aksed my doctor what if we took him to a sleep lab but they s
Avatar universal
Spade, my topic yesterday disppeared  as I gave my own email address there and it is not allowed that is why it disappeared. I opend it again today.

Sorry so much wrong spelling in my previous comment.
Avatar universal
Sorry that article wasn't much use to you but if tere are similarities it does suggest that some conditions exist which are similar. I know this doesnt answer your questions but it does offer some hope for the future for you and your baby. As a mum, and grandmom I know one of the hardest things in the world is when your children are ill . It is even harder when you have no reason. I wish you and your family all the best . Take Care Chrystaly
Avatar universal
Your post is too vague. 1yr or older/talks/happens everyday &
everytime for nap/only when flat/soon after eating/Dr's saw
actual myoclonus/is the reaching possibly for help or imaginary
object/eyes open or shut when reaching/do you hold the moving
arm for touch afterward till over. You don't need a sleep clinic
to test for now. In the US, many stumped Dr's will tell Mom to
set up a series of (different night) video recordings of events.
They can take those to a childrens hospital to have a panel do
a review. You can buy/rent/borrow/set up a type 'nanny-cam'.
The stomache could be wrenching & not myoclonus during this.
Triggers like an allergy to a food can do this. If child is
aware of problem (depending on age), even a baby, they can have
sub-conscious anxiety buil up to where a trigger goes off. It's
the same as you will not sleep through night well if you know
you have an important appt next day. Is child ok after episode?
Often Mom will say 'my baby' & she may use that term for a 4 yr old. How/what to test may limit tests & can only be dx'd by
clinically seeing event. Get a 'nanny-cam' or? I hope this gets
resolved soon w/ an answer. Gd-luck.
Avatar universal
Chrystaly,
don't say that!! it was really useful to read that article !! thanks.
Avatar universal
You said that my comment was vague. maybe it is because English is not my mother tongue.  If something is not clear let me know.
I do not quite understand what you wrote is it also because the language.

We recorded this event that my babay is doing and showed to the doctors. As he is doing it so often the doctors had seen already in live.

He has not been tested to allergy yet as  doctors say that it cannot be that. Of course I kept on asking for an allergy test but they would not sent me there.

Unfortunately I  have to keep on reading and contacting with people(just like now) because I want to find my baby's problem( who is 9 months old:)))

I cannot belive that he is the only one who has this problem this problem in the world.

Thnaks for everybody who tries to help me !!
Avatar universal
Very sorry to confuse you. Many of us here type English & assume
we all live in US till you let us know. You did just fine with
what you just said on last post. I will try to help do some
look ups now that I know it's a 9mo. old & you've had visual
attack with Dr's observing. There is St. Judes childrens hospital in US I was going to suggest but maybe be they have
a dept. that's searchable. If you are in Europe, they have some
special clinics also. I doubt that your baby is alone in this world with this condition. It sounds like a communication of
what Dr's are telling you. Ask for (theories) on what they think
it is. Get copies for a home-file on tests & scans. This will be
valuable information as the child grows. I'll let you know if I
come across anything. I'm sure this is a very difficult thing
for you. You mentioned no epilepsy but has these seizures. Did
Dr's mention anymore about types of seizures? We will try to offer any support. Maybe get someone to help interpret this.
Gd-luck.
Avatar universal

Hi judson,

I responded to your thread earlier and then it disappeared. I had posted a link in that thread in reference to a rare gastrointestional disease that can cause someone to have myoclonus in the abdomen and symptoms that appear to be seizures.

I hope you saw the information because I forgot the name of the disease and cannot find it via google.com now. There were very few links on this disease. Let me know if you saw the link earlier...
Avatar universal
Sorry I have not seen that link before!!!

can't you remember the name? I know that there is something called Sandifer syndrome but doctors say that  it does not long for hours  as in my baby's case.
Avatar universal
thanks for your answer again.

It is me who keeps on saying that I cannot believe that it is olny my baby who is doing such thing:))
doctors simly just do not know what this is, they have not seen such thing before. That is why I keep on searching throug the internet  hoping that I can find some help, that for example someone says that'I know what this is, you should do this or that to stop this thing coming  again.'

Please let me know if you have any ideas.

Seizures: they called it like that  just to give a name to it -i think. fortunately his saturation is OK during this but as he spends so much time in this 'state' he cannot develop well- And he is weak  because of the medicines.

Judith
Avatar universal
My previous topic  has been deleted as I gave my email address there  and it is not allowed( i did not know)
Avatar universal

It was Sandifer's syndrome that I was trying to remember.

I wish you the best of luck... and keep pushing for answers !
Avatar universal
thanks. I hope that some day it turs out  what it is.
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