Seizure and stiffness in 6 weeks old baby

[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

 

[henrysmumkaz]

I have no experience or knowledge whatsoever but that sounds utterly terriifying and I am so so sorry that your little one is going through this. You must be one brave mummy to be able to cope, blimey. I truly hope that everything turns out okay x

 

[pixiebaby87]

my brother had fits daily it was horrific to watch, and even worse for my mother as im sure it is for you.

i cant offer any useful information , he was epeleptic.

i just wanted to offer a hug, and say i really hope they find out whats going on soon i bet you are out of your mind xx

 

[BrandiCanucks]

Have they looked into Migrating Partial Epilepsy of Infancy? I don't know a lot about it, but I have two friends whose children had it. Ask for an MRI.

 

[DollPosse]

I don't know if I would be any help but I have has seizures since birth. I had issues like you described.

 

[RebeccaG]

Oh hun huuuuuuuge hugs to you all! My LO had a completely normal birth and first few weeks and then less than a week after his first jabs started having seizures - October was the worst month ever for us in and out of hospital, MRI and EEG etc. His EEG showed partial seizures. Which hospital are you with? Where are you? We are seeing a super guy from Addenbrooks, Cambridge next week and Im hoping we will get more answers. Don't know what else to say but I can understand what you're going through - pmessage me anytime!! xxxx

 

[TweetiePie]

I'm so sorry your going through this.
My little girl started having seizures at 7 weeks old.
Drop me a pm if you want to chat x

 

[RebeccaG]

I'm so sorry your going through this.
My little girl started having seizures at 7 weeks old.
Drop me a pm if you want to chat x

How is your little girl? Did they find a cause? The doctors still don't know what was the cause of my son's seizures but I'm worried it was the jabs!

 

[TweetiePie]

I'm so sorry your going through this.
My little girl started having seizures at 7 weeks old.
Drop me a pm if you want to chat x

How is your little girl? Did they find a cause? The doctors still don't know what was the cause of my son's seizures but I'm worried it was the jabs!

My little girl still has hundreds of seizures a day unfortunately. She is on her 19th medication combo. Nothing seems to work for her. We havent found a cause, lots of tests done. How is your son? Do you have any control?

 

[RebeccaG]

Thankfully his are under control although I hate saying that as when I did last time they started again! He hasn't had a seizure for nearly 10 weeks now. His worst days he had 20+ seizures a day. He is on phenobarbital but we are speaking to a specialist on 9th about weaning him off that. I'm terrified they will start again.
Really sorry to hear they aren't under control for your daughter. Which hospitals are you under? Have you got a good consultant? xx

 

[CatB]

Hi, i know exactly how your feeling, my daughter was born at 36wks but the scan showed she had not grown since my 34wk scan, my baby was breach and i went into labour thats why i had a scan at 36wks to see if she had turned but she hadnt, that is when they noticed she hadnt grew... I was rushed in for an emergency c-section & then she was whisked off to neo natal, where she spent the next 4wks, as she had high acid in her blood, they tested her for metabolic, but all the tests came back normal, we also noticed how tence her legs were, they were always in the air and could not bend, we were told it was because she was breach.... the next clue something was wrong was she could not suck, she was eventually allowed home with a feeding tube & we were told her milestones would now be monitored as she cant suck - it can be a sign of brain damage.... We were devasted but we continued to try with the sucking and after 6 wks she began to suck and after a few wks was sucking all her feeds. The next problem was at her 6wk check she would not follow objects and could not smile, we put it down to her having gone through so much when she was born. We took her on holiday to essex at 15wks, she began to get really grumpy & was crying constantly, an slavering alot, we thought she was teething, 5 days into our holiday she had a seizue, her eyes rolled back, her body really stiff, and a blank look on her face, we took her to hospital & they said this was normal, but i want convinced, we ended up driving the 8 hour journey home to scotland, which on route she has a total of 15 seizures.... It was the worst time of my life we took her straight to hospital, they did a eeg, which the results confirmed she was having seizure and that her brain wave was not normal, we were told her brain seemed so badly damaged she would never walk or talk... She also had an mri scan which confirmed her brain has severe damage all the way round, i felt like my world had crumbled. She is on lots of medication, epilim for the seizures, baclofen to relax her very tence muscles. Renidadine for her reflux & domperidome for the sickness all these meds cause. We also have physio once a week to make sure her muscles dont seize up completely.... They say the symptoms are going to be like a child who has cerebral palsy, we have since found out she has a stroke at34wks as i had a mri scan at 30wks as i was in so much pain and her brain was perfect.... I also asked when they told us she may have brain damage at 5 wks why could she not get an mri scan and i was told it would be too early to tell. My stunning daughter is now 8 months, and we do get the odd smile that makes it all worth while... I hope this helps and i hope your little one gets better soon or the find out the cause because i know the unknown is alot worse

 

[Zaki]

Thank u for your post x
You are one brave mummy, it is really sad what our little angels have to go through! It breaks my heart to see my boy going through many seizures a day but we can only be strong for them,doctors told me saki might be slower with his development but that doesn't bother me as long as they can controll his seizure I will be fine.
He seems to be more relaxed now and I try to massage his body and do some physio so hopefully that helps. In terms of his seizures he is looked after by top neurologist in uk so for that I'm greatfull but at the moment they are still playing with his medications as he's not responding to them so it could be long long road for us!
Maybe we could swap the numbers and stay in touch even for support as we know how painful that is for us. My boy is now 8 weeks and he's a fighter. U stay strong Hun for your little angel and pls let me know abt tel numbers. Would be easier to talk then to type I think.
All the best xxxx

 

[Zaki]

Hi hope your ok
How's your little girl doing? Is she ok?
How many times a day is she having those episodes? Are they strong? Is she at the hospital?
My boy still at the hospital as eurologist are trying to find right treatment for him, it could be long road for me. It is so unfair isn't?? My heart bleeds every day when I see him going through them. How are you finding it? What your doctors are saying
Take care Hun xx

 

[Zaki]

Thank you Hun x that's so nice of you!
It is tough but my boy needs me so I have to be strong or him, let's pray doctors will find right treatment which will controll them gpnasty seizures.

 

[Zaki]

Hi Hun x
Thank you for your reply.
How are you with your seizures? Are you still having them? X

 

[Zaki]

Sorry Hun just read your reply to someone else abt your little girl
I'm so sorry to hear that she is suffering so much
Did you ever have to go to a&e with her? Did she ever stop breathing? What your doctors are saying? If you ever want to talk then feel free we could swap the numbers.
Trust me I know how hard and painful it is. So sad to see our kids suffering like this
How is your Daugther fed? By tube or can she suck and swallow? My boy can eat from the bottle but doctors won't allow him as his seizures. It could e months before they find right treatment for him.
Stay strong xx

 

[BrandiCanucks]

Zaki, have they looked into Migrating Partial Epilepsy of Infancy?

 

[RebeccaG]

The time in hospital is just awful - it all goes by in such a blur! I just prayed and prayed and got all my family to pray and got LO put on churches prayer lists. I really do believe in the power of prayer!
I'm glad that you are under a good doctor - I'm not sure how I feel about our appointment with this super baby neuro guy on Monday. Im a bit worried he might tell us something I don't want to hear...
Will keep praying for you all and your LOs! xxxx

 

[Zaki]

My beautiful angel passed away 2 weeks ago he was 3,5 months
His illness was just too strong...
I'm lost without him and pain is tearing my heart apart
Hope God will look after him for me!

 

[BrandiCanucks]

I`m so sorry, Zaki.

Did the doctors figure out his condition? It sounds like MPEI to me. If it was, I can connect you with other families of angels with the condition.