i think my 7 week old son is haveing seizures

[xxloopylollxx]

hi all hope u are all well.
i was looking for some advise, my 7 week old baby is haveing what apears to be seizures, they only last a few seconds but can happen 50+ times a day, while i was pregnant with him i felt him shake inside me would feel like he was vibrateing, he was 4weeks and a day early and has had these shakeing episodes since he was born.
he suffers from silent reflux and he is milk intolorent so on Neocate (cows milk free) also is on ranitidine.
when he gets the shakeing sometimes its just his head that shakes and his eyes roll and he makes a grunting noise, other times its just his arms n hands twitching rapidly, other times his whole body. it is really scareing me and his dad and we are waiting for his referal to peaditrician to come threw which has taken 5 weeks already and nothing yet. have any of u any ideas what this is? xx

 

[MrsRabbit]

Sounds like seizures my daughter has had. I would report your concerns to the doctor. He will need an EEG to know for sure. It's a scary uncomfortable test but it's worth it.

 

[xxloopylollxx]

thanks for getting back to me hun. how is your daughter doing? did she do the shakeing inside u when u were preg to?
we have seen the doc and been refered but the appointment is takeing forever to come threw xx

 

[MrsRabbit]

Keep calling. Call them everyday.

We got rushed in because I took DD to the ER because she stopped breathing.

 

[capel]

I would tell you to film it and show to the doctor. My daugther had her first seizure when she was 2 hours old and as we were in hospital she got seen straigth away. After they stoped but came back after a few months. People would say I was being paranoid. So filmed her and showed to the doctor. We got an EEG 2 weeks after and epilepsy was confirmed. She is now on medication and did not have a single seizure in the past 2 years.

 

[Aidedhoney]

Hello,
I have witness Alex having 2 seizures, his were very very sutble, i was lucky that his happened while he was in PICU while recovering from surgery.
Alex was started on a drug to stop them and came off it very radidly as his siezures were caused by swelling to his brain.

I see you are in Aberdeen we are as well, Alex is under Dr shah who is fantastic, i really hope you dont have too long to wait but as said above i would phone every day chase it up.

Good luck x

 

[Lottie86]

Definately get your gp to chase the referral up. If they are seizures then it will be good to get an EEG done asap to confirm it and get meds started and if not (it could be related to the reflux rather than seizures) then at least it will put your mind at ease that he has been checked.

Hope all goes well x

P.S: I'll put in another recommendation for Dr Shah, he's fantastic!!!

 

[xxloopylollxx]

Hi all, ty for your replies, we ended up takeing Caelab to hospital, but the doctors dnt beleive what we are telling them, they are saying they havent witnessed these "episodes" so wont do any tests, and basically saying that if its only lasting a few secconds its not a real seizure... we dont kno what to do. x i hope all ur little ones are ok x

 

[lozzy21]

If it happens again ring an ambulance.

 

[xxloopylollxx]

its so stressful knowing something is wrong with him but the docs wont listen, he has also had diarrhea for 4-5 weeks now, they have changed his milk and thickner to see if helped, but no change, every time he farts has diarrhea poor baba xx

 

[sophxx]

Film them then you have the proof also like lossy said ring a aumblancex

 

[Septie]

Could be infantile spasms - it's important to get them (or any other kind of epilepsy) under control asap, as it can hinder development. Lots of drugs for treatment exist, and I am SHOCKED that they would not take you seriously!!! You must be so terrified - and then that kind of treatment
Videotape them to get evidence, call ambulances, go to the ER.
There was a lovely lady on here a while ago whose baby had a severe form of infantile spasms...

 

[jessr123]

First off big hugs. It can be so scary when you see your LO suffering.

Reflux can cause an infant to look like they are having a seizure, but the hospital can easily tell with an EEG if it is reflux or seizure activity. It is an easy test to do on a baby, just some electrodes which are stuck to the baby's head to measure electrical activity. You won't get instant results from it though as it needs to be 'read' by a doctor who doesn't usually administer the test themselves.

If you think your little one is having seizures please take the to a and e. If you can film them then that is good, but don't worry. You need to be able to describe them. I was always told if you can bring your LO out of an episode by talking to them/stroking their face/squeezing their toes/blowing on their face then it is unlikely to be a seizure. You will get seen quicker at a n e than through a referal!

My LO has has seizures since birth, and they developed into infantile spasms, and now looks like he has another form of epilepsy too, although this is yet to be confirmed. He is on a variety of drugs, and has delayed development, although whether this is caused by the seizures, brain damage, whatever is causing the seizures or the drugs is yet to be determined. His seizures are not yet under control and we are 8months into treatment now. If you ever want a chat please free to message me.

 

[hatbox]

I agree with PP. Film him and call to see when your appt is. If they refuse to get you in NOW, take him to the ER.

 

[Emmea12uk]

I hope you get the hospitalto take you seriously. It is disgusting they aren't. My son had one episode before he was booked in for an emergency eeg (which is simple and painless). I would go down the a&e route as well as gp as many times as it tool for them to listen. After 2 visits I would demand to speak to the patient liason service.

Never let a stranger no matter how qualified tell you they know more about your child's behavior.

 

[lynne192]

i am soo sorry to hear i woudl get a video camera and record what is happening also take pictures of everything contact your health visitor the moment this happens call her every time it happens even when its out of hours! contact NHS24 and your own doctors write a diary and that doctors are utterly useless in my eyes with my son i fought with them tooth and nail for most things and then ended up taking photos and givin proof etc its disguesting they should just do the bloody EEG its not Skin of thier bloody nose this is just god awful i am sorry hun hope you get some help and answers soon xx

 

[xxloopylollxx]

Thank u all for ur replies, Caelab is seeing Dr Shah on the 25th, so hopefully will get some answers, tho i dont kno how much they will do at first appointment xx hope his angel brother will be looking after him and wispering in Dr's ears to help his lil bro xx love and hugs to u all hope u are all well xx

 

[lynne192]

thats good i hope they do something keep note of everything up until they and let us know how you get on xx

 

[xxloopylollxx]

thank u hun, good luck with tryin to concieve and floaty kisses to ur angel xx

 

[lynne192]

thank you so much. on my way to hospital for fertility clinic now so here's hoping we'll get our joy soon x