Seizure and stiffness in 6 weeks old baby

[RebeccaG]

Oh I'm so so sorry. God will take really good care of him I know. I don't really know what to say apart from my prayers are with you. xxxx

 

[sun]

I'm so sorry to hear about the loss of your angel

 

[Blue12]

I am so sorry for the loss of your precious angel. XO

 

[netty]

i'm so sorry

 

[sophxx]

So sorry for your loss x

 

[BrandiCanucks]

Zaki, I have a family who would like to get in contact with you. Would you mind PMing me? They know of a good support group.

 

[17thy]

Zaki I'm so sorry dear

 

[Zaki]

Hi Guys

Just wondered if you could help me

My son was born on 7thof November after 22 min of his life he was having seizure and jerky movements.on top of that he was also very stiff.he was transferred to London hospital to intensive care unit as he had to be ventilated.
He had all possible tests done like MRI metabolic test luper puncture all come back normal, only his EEG showed he was showing seizures but doctors couldn't figured it out what was causing it and where it came from.
He is on clomazepan and phenobarbital and levetiracetam also takes dopamine dose to makes me relax his mussel as he is very stiff most of the time.
Doctors told us they will never be able to find out why he is so stiff and what's causing his seizures so they can only treat what they see which is very difficult for us to deal with.
Sometimes on a good day he only gets 1 or 2 seizures and they go away quick but when he's having bad day it could be up to 5 episodes when he's dropping his oxygen level dramatically his heart rate goes to 40 and he goes blue in a second... Doctors don't know why his breathing is like that they say it could be due to the medication ( they reducing dose of one med and increase another) or his condition is just getting worse. They are trying to finish with clomazepan and phenobarbital eventually so he can be on one drag only ( levetiracetam ) but until they reach the right dose we won't know.
He can be asleep and suddenly he will just go blue without any seizure jerky movements so it's difficult for them to know why???
Some day he copes well and he needs no oxygen support but other days he doesn't manage without it at all.
He is fed by tube at the moment.
Please contact me if your child have gone throught similar condition ( seizures , jerky movements and stiffness)

Thank u xxx

My angel didn't make it. Agony - that's my name

 

[netty]

Hi Guys

Just wondered if you could help me

My son was born on 7thof November after 22 min of his life he was having seizure and jerky movements.on top of that he was also very stiff.he was transferred to London hospital to intensive care unit as he had to be ventilated.
He had all possible tests done like MRI metabolic test luper puncture all come back normal, only his EEG showed he was showing seizures but doctors couldn't figured it out what was causing it and where it came from.
He is on clomazepan and phenobarbital and levetiracetam also takes dopamine dose to makes me relax his mussel as he is very stiff most of the time.
Doctors told us they will never be able to find out why he is so stiff and what's causing his seizures so they can only treat what they see which is very difficult for us to deal with.
Sometimes on a good day he only gets 1 or 2 seizures and they go away quick but when he's having bad day it could be up to 5 episodes when he's dropping his oxygen level dramatically his heart rate goes to 40 and he goes blue in a second... Doctors don't know why his breathing is like that they say it could be due to the medication ( they reducing dose of one med and increase another) or his condition is just getting worse. They are trying to finish with clomazepan and phenobarbital eventually so he can be on one drag only ( levetiracetam ) but until they reach the right dose we won't know.
He can be asleep and suddenly he will just go blue without any seizure jerky movements so it's difficult for them to know why???
Some day he copes well and he needs no oxygen support but other days he doesn't manage without it at all.
He is fed by tube at the moment.
Please contact me if your child have gone throught similar condition ( seizures , jerky movements and stiffness)

Thank u xxx

My angel didn't make it. Agony - that's my name