My newborn baby and his seizures [Archive] - Giant in the Playground Forums

Caesar

2012-01-28, 01:14 PM

DISCLAIMER: THIS IS NOT A THREAD ASKING FOR MEDICAL ADVICE, DO NOT POST MEDICAL ADVICE HERE AND LOCK MY THREAD.

I am posting this thread to see if other people here have experienced anything similar, to see how they dealt with the emotional trauma, and maybe to hear how things turned out for them, although I know that isnt how things will necessarily turn out for me. Please, dont post medical advice, none of it will be followed as we have a team of world class doctors who are already in charge.

So my son was born the other day. He had a rough labor that lasted 43+ hours from the onset of contractions (not part of the problem) and which ended in a hyper-acute cesarian section. My son had a little trouble waking up, but seemed fine, until he started having seizures about 12 hours into his new life.

Now he is in a neonatal intensive care ward. Its been a real rough ride, but he seems to be stablizing. Me and mom have it horribly, but we are doing better and we are still in there fighting the good fight. We got some tentative MRI results, he has had some kind of "changes" that effect a major part of his brain, tho not any core systems, and which are the cause of his seizures. It looks like bloodclots, but then again, not really. Truth is, the doctors (and we literally have our countries' best) have never seen anything like it before.

But he is stablilizing. And his background brainwave activity is normal. And he can grasp and suckle, tho he is kept unconscious for most of the time. We know that infant brains are "unmapped" so to speak, and they can recover from vicious damage that would kill an adult. They can also regenerate dead or damaged tissue, unlike in adults. So we have that going for us. We have a lot of hope that he will come thru this without permanent effects, but of course we live in constant dread that things will not end so well.

Has anybody else lived thru such an ordeal? How did you cope? How did your children come thru it all? Thanks for listening, and thanks for not locking my thread.

Ravens_cry

2012-01-28, 01:23 PM

This, quite literally, made me cry.
My gut reaction is to give you a hug.
My next reaction is to get you a cup of tea.
But I can't do any of that because I am across the Internet from you.
But I want you to know that, as much as it is worth anything, we're here for you. I can only give you my condolences and shared sorrow on your hardship, and my hopes and, if you like, prayers for you and your sons future together.
I honestly can not say I know what this is like, but I do know this must be a punch in the gut to put it mildly. My heart breaks to read your words, I hope beyond hope that things grow better for you and your newest member of the family.
Peace,
Ravens Cry

The Succubus

2012-01-28, 01:33 PM

Is it a form of epilepsy? I suffer from that myself but it seems to be under control at the moment through medication.

I really hope things turn out for the best for you and mum.

Caesar

2012-01-28, 01:45 PM

They dont really know what it is, but no, its not epilepsy, tho his seizures are very similar.

Caesar

2012-01-28, 02:01 PM

Ravens_cry

2012-01-28, 02:13 PM

Marcus, I'll remember that.

THAC0

2012-01-28, 05:37 PM

My friends went through something similar with their second child. They knew before the birth though, so that gave them time to prepare. The prognosis was very negative and that turned out to be true.

I was constantly amazed by the strength and grace with which they handled the situation. I know for them religion played a very large role.

I hope that you can find some answers and that your son lives a long and happy life. I will be thinking about you and your family.

Asherion

2012-01-28, 06:09 PM

I don't know if it helps or not, and it's a bit of a different situation. When our child was a year and a half old, she had a seizure. She was standing in the living room, and just collapsed, twitching. We ran to the hospital, and... nothing. No epilepsy, no fever (fever seizures are common in infants and toddlers, I guess?), no abnormal activity. She was lethargic for the next day, and then they basically told us good luck, no idea what's wrong, and sent us home.

She's been perfectly normal, funny, and smart since, and she's three and a half now.

I was petrified when that happened, and can't imagine what you'd be going through with a newborn.

I hope that it's something isolated, like it was with ours. It's not very comforting that the doctors didn't explain it, but it IS comforting that it's not happened again.

Either way, I hope for the best for your family!

Dumbledore lives

2012-01-28, 06:14 PM

I'm afraid I don't have any experience with anything like this, but I'm holding you and your family, and especially your son in the light.

Occasional Sage

2012-01-28, 06:30 PM

Marcus (and of course you and his mom) have a high place in our hearts and thoughts.

Neither of our children have a seizure disorder that has manifested yet; our oldest spent some time in the NICU at birth for breathing problems, though, which gives me an inkling of what you're feeling.

It's devastating to think that there may be a problem with somebody so tiny and helpless, but we made it through on the amazing tide of love we felt for Finn. I hope you three are able soon to go home and begin your life together, with this time a slowly-fading memory.

EDIT: Also, we want pictures! I know the NICU has strict rules about electronics, but one of these days....

Raddish

2012-01-28, 10:30 PM

I hope and wish for everything to work out for Marcus so that he may live a long and happy life.

I can never actually put how I feel when I see babies in hospitals, whether in life, on tv or just in my head when I read about them. My family has had it's share of health problems with babies which makes them affect me a lot...

Good luck to you and your family.

Mauve Shirt

2012-01-28, 10:44 PM

Has anybody else lived thru such an ordeal? How did you cope? How did your children come thru it all? Thanks for listening, and thanks for not locking my thread.

Yep. I was born premature, didn't get enough oxygen at birth, was in the NICU for a while. About a week into life I had a seizure that caused me to go catatonic. They blamed it on my probable brain damage. My epilepsy went unnoticed until I turned 6 or so.
I'm 23, and doing quite excellently actually. :smallsmile: I'm keeping you all in my thoughts.

H Birchgrove

2012-01-29, 12:17 AM

*hugs*

:smallfrown:

I'm so happy that my nephew is healthy, aside from being lactose intolerant, and having the occasional infection.

My sister was pregnant earlier, also a boy... He died in her womb... She still had to do labour... :smallfrown:

Lycan 01

2012-01-29, 01:53 AM

Hopes and prayers for the best, man. Not really sure what else to say, as I've never been in a situation like that before. :smallfrown:

arguskos

2012-01-29, 02:03 AM

I'll keep you in my thoughts and ask the gods to look in on you and yours. May your ordeal conclude swiftly, Caesar.

_Zoot_

2012-01-29, 02:11 AM

I know there is nothing I can say that will make it any better, but know that I'm thinking and praying for you, your wife and your boy. :smallfrown:

Skeppio

2012-01-29, 02:20 AM

I know there's not much I can do to help, but you, little Marcus and your wife will be in my thoughts and prayers. :smallfrown: *hugs* I wish the best for you all.

thubby

2012-01-29, 02:25 AM

i have no experience, so i cant offer any advice.
were i religious man, I'd pray for him.
were i there, I'd offer you a hug.

as it is, all i can give are my sympathies :smallfrown:

Caesar

2012-01-29, 10:14 AM

Thank you everyone. He seems to be a lot more stabilized now, they are pretty much ramping him off the drugs, and he even woke up for a short time. Groggy as all get out (which was scary because you are sitting there thinking, omg is it braindamage or a hangover? theres not much difference..) and still pretty sleepy. But he got some boob. Or at least, he slept on one. Which has gotta be a highpoint in any little boy's life.

We will get some more solid explanations about his MRI tomorrow. I'll keep you posted.

EDIT: Also, Finn is an awesome name. I actually mentioned that one, but my wife shot it down.

KenderWizard

2012-01-29, 01:12 PM

That's something unimaginably tough to have to go through. I'm glad he woke up for a bit, that's a great sign!

No matter how it turns out, best case, worst case, or somewhere in between, there are probably support groups near you, so you can talk to other parents who have gone through the same thing, maybe even meet their kids and stuff. They can also be a huge help if Marcus needs extra support as he grows up. Maybe the doctors or nurses would know of a group, or know how you could find a group. If there isn't a real-life group, there are internet forums dedicated to all aspects of parenting, and to most conditions children can be born with or contract very early in life.

Wishing you and your little family the very best.

Asta Kask

2012-01-29, 01:53 PM

My best friend had something similar. He's a doctor and a father and is doing well. Babies are tougher than dirt.

Lycan 01

2012-01-29, 01:56 PM

Glad to hear things are improving. Hope it stays that way. :smallsmile:

Occasional Sage

2012-01-29, 06:11 PM

We're glad to hear that things are looking better, and hope this continues! Babies are, indeed, super-resilient.

Caesar

2012-01-30, 06:02 AM

Mauve Shirt

2012-01-30, 06:27 AM

Ravens_cry

2012-01-30, 07:22 AM

In the words of the Internet, Woot!
I am so very glad Marcus is doing better.

H Birchgrove

2012-01-30, 08:45 AM

.... Marcus is my first name too...

:smallbiggrin:

Way to go, Italian Marcus! :smallcool:

Melayl

2012-01-30, 09:38 AM

I am glad to hear your son is improving. I will keep you all in prayers. Babies are resilient as all hell, so I have high hopes for little Marcus.

Telonius

2012-01-30, 09:40 AM

Good news! Marcus has learned how to breastfeed. He just needed a little plastic dims around the nipple to help him get started, and then he went right at it. Good going, little man! :smallbiggrin:

We get more news from the specialists in the next few hours.

:smallsmile: Way to go, Marcus! Now get off the internet and get some sleep. :smallbiggrin:

My own daughter had a seizure when she was a bit over a year old. Basically just went really lethargic and limp for about 20 minutes. She was with her grandma at the time; my wife and I were both at our jobs. Grandma thought she was dying and called 911 right away. Fortunately daughter recovered as soon as she was on her back (at the direction of the 911 operator). We're still not sure if the positioning fixed it or if she just got better on her own when the seizure passed. Grandma called us right after she was off the phone with 911, and the ambulance guys arrived. Rushing home and then to the doctor's was about the scariest couple hours of our whole lives.

Afterwards at the doctor's, they told us this sort of thing is a bit more common when there's a family history of epilepsy (there is - not me fortunately), and that she would probably "grow out of it." A year and a half later, she hasn't had any recurrence.

Caesar

2012-01-30, 10:24 AM

Well, unfortunately things are not nearly as good as we had hoped. In fact, they are pretty much worse case scenario.

Marcus has an as yet unknown genetic disorder which has effected the metabolism in his brain. This in turn has caused wide spread and rampant damage to his brain tissues. This is the kind of damage which a baby does not spring back from.

Marcus has an exceedingly high risk of being severely physically and mentally retarded in his development, and will probably end up blind and unable to even walk. He has a vanishingly low chance of having anything that even remotely resembles a normal life.

I hope to God the doctors are wrong, or that we get some kind of miracle development.. but at this point we might as well just go out and buy a lottery ticket and quit our jobs beforehand, the chances are just that low.

Thank you for your kind words and support, and for your continued prayers.

-a mortified father

Asta Kask

2012-01-30, 11:11 AM

What disease is it? Do they know?

Edit: Oh, and a long, ribcrushing *hug*, obviously

Dark Elf Bard

2012-01-30, 11:16 AM

I'm afraid I don't have any experience with anything like this, but I'm holding you and your family, and especially your son in the light. I pray for your family.

H Birchgrove

2012-01-30, 11:39 AM

*hugs Caesar*

*pray for little Marcus*

:smallfrown:

Ravens_cry

2012-01-30, 12:06 PM

Normal life or not, I know Marcus is loved dearly by at least two very special people.
What more can any of us really ask?
Take care you all, my prayers and hopes continue.

Lycan 01

2012-01-30, 12:20 PM

I don't really know what to say or do. I don't know what can be said or done. Just know that the thoughts and prayers of the Playground are with you and your family.

Mono Vertigo

2012-01-30, 12:58 PM

... dear.
I'm terribly sorry about the direction it's going.
I sincerely hope that whatever happens from now on won't be as painful as you fear.
Mentally hugging Marcus, your wife, and you. It's not much, but I wish I could do more. :smallfrown:

thubby

2012-01-30, 11:13 PM

D:>
:smallfrown:

Xondoure

2012-01-31, 01:19 AM

Here's hoping that each of our voices can make this unimaginable burden a little easier. As it is all I can do to wish you and your family as much love as possible.

Dumbledore lives

2012-01-31, 02:00 AM

Well miracles do happen, and life goes on regardless of circumstances. He's alive and loved, and in the end that is what matters. I wish it was different, but sometimes wishing isn't enough, but if it helps I'm holding Marcus you and your wife in the light.

Vacant

2012-01-31, 04:59 AM

In a possible weird response, I was a baby doing the same. In my case, it was from lack of oxygen doing birth (not to say that this is the case, here, obviously, just that it was for me), and I turned out decently well. Which is to say that my awful traits were clawed into me by experience, not by something like this. I hope all goes well, my thoughts and prayers are with you.

The Succubus

2012-01-31, 06:48 AM

I really don't know if there's anything I could say or do that would help you. I'm not a praying man but if there's anything out there watching over us, I hope it gives Marcus a chance. I really do.

Melayl

2012-01-31, 09:41 AM

I cannot imagine how difficult this must be for you and your wife, and your families. I will continue to hold all of you in my prayers. Never give up hope. :gigantic hugs:

Caesar

2012-02-02, 11:55 AM

Well now they have slightly reversed their horrible prognosis, but he is still considered to be in serious danger of major developmental handicaps. They dont know why (testing to try and disprove the metabolic pathway scenario, among other things, results in on monday), and honestly they have no idea how he may or may not turn out. He is doing surprisingly well, they say. Very alert and active when he's not sleeping, takes to the breast just like his dear old dad, he is hungry and eating well and gaining weight, and he has solid motor skills for his age. He also focuses his eyes and follows movements as a newborn should, which is a great sign as his visual cortex is one of the areas they were definitely sure took a big hit.

Im tired of this emotional rollercoaster tho. I got his lab journals and MRI scans on a disk, and am trying to contact some more specialists via the interweb. We are taking him home tomorrow, and we will hope and pray for the best. (He is being discharged at any rate, its not like I am removing him from the care of his doctors, who will still be doing lots of follow ups on him.) Thank you all again for your continued thoughts and prayers.

NinjaStylerobot

2012-02-02, 04:06 PM

Oh thank god. Lets hope things get better.

bluewind95

2012-02-02, 05:28 PM

It's very difficult for them to predict at the moment in any accurate way what will happen. I have, however, heard of babies with a really poor prognosis that turned out just fine. Love him. Stimulate him. Cuddle him. The love you give him will make all the difference. He'll turn out as well as possible, I'm sure. I'll definitely pray(or hope, or however you prefer to call the good wishes) for that and I'm sure many others will, too.

Melayl

2012-02-02, 09:30 PM

I am very happy to hear he has improved! I will continue to pray for all of you.

Love him. Stimulate him. Cuddle him. The love you give him will make all the difference.

This. Most definitely this. The more you work with him while he's awake and the more contact (physical and emotional/psychological) he has with the two of you the better.

Lycan 01

2012-02-03, 01:58 AM

Glad to hear there's been some progress. I hope things continue to improve. And of course, you will remain in all our thoughts and prayers.

Ashtar

2012-02-03, 09:26 AM

... I am a loss for words after reading this ...

I just want you to know that I wish Marcus, you and your wife the best.

Ravens_cry

2012-02-03, 11:23 AM

I hope you don't mind, but I told my family about you and Marcus situation and they send their support and prayers as well.
Be well, Marcus, be whole, and most importantly, be loved.
You got the last covered at least, best hopes for the rest.

KenderWizard

2012-02-03, 02:59 PM

It's really really good that he's active and responds to things and is taking breastmilk. That's all going to make it much easier for you and his doctors to help him deal with any long-term issues that he has, so I'm glad to hear those things, even though it sounds like he's got his work cut out for him. Well done to you and your wife for giving him the attention and love that he needs.

(I know this is early days, but something that might be helpful to look into, socially speaking, as he starts to grow, is baby sign language. If he does have learning, speaking, motor or hearing problems, baby sign language can be very helpful and allow babies to communicate much younger than if they have to wait to control their whole mouth and throat with a high degree of precision. Hands are much easier!)

Thinking of you, your wife and little Marcus and hope the news continues to improve.

Caesar

2012-02-10, 11:15 PM

baby seems ok. for now. we know what very possibly awaits us tho.

lawyers are getting involved. things are turning south. my heart is heavy.

Starwulf

2012-02-11, 02:57 AM

baby seems ok. for now. we know what very possibly awaits us tho.

lawyers are getting involved. things are turning south. my heart is heavy.

....Why are the lawyers getting involved for? Do they believe the hospital is at fault? Or is it a "quality of life" thing and they want the baby taken off life-support? Or some other reason entirely? Whatever happens, you and your family are in my thoughts(and have been since I first read this thread). I'm sorry that you have to go through this, no-one deserves to live through such hardship :-(.

Asta Kask

2012-02-11, 05:48 AM

baby seems ok. for now. we know what very possibly awaits us tho.

lawyers are getting involved. things are turning south. my heart is heavy.

Oh, I wish there was something I could do! Except hugging.

Elm11

2012-02-11, 07:14 AM

You have my prayers. God willing, he'll be alright, and, while I can't pretend to understand what you're going through, I also pray that you keep up the valiant effort it must take to keep going.

H Birchgrove

2012-02-11, 10:37 AM

:smallfrown:

Get well soon, Marcus.

Penguinsushi

2012-02-11, 10:51 AM

Caesar -

Don't have much to say, but I'd like you to know that, in this moment, one more person is honestly hoping and praying for the best for you, your family and your little one. I've never been in your shoes, but I have a 9-month-old daughter and I can only imagine what this must be like.

Peace, my friend, and thank you for letting a bunch of well-meaning strangers share in your trials.

~PS