OT - My son had 2 seizures last week

[Syracusecards]

Mods - Sorry to post this on this forum but I really need help with this and know this gets the most views.

All, my 14 month old son Jonathan had 2 seizures last Monday, each lasting about 45 minutes. We spent the past week in the PICU trying to find out what caused them to no avail. They did an MRI and a CT scan, which both showed no brain abnormalities, thank God for that. They've put him on Kepra and he is very listless and not himself since we brought him home yesterday. The whole experience has been the worst experience of my life. I've never felt more helpless and inadequate as a father.

I am posting this to ask if anyone knows about seizures and the effects and how they're treated or if anyone has any feedback or stories to tell that may help me feel like I can sleep at night. Right now, we have a video monitor on him but it won't wake us if he seizes in the middle of the night. We're having him sleep in our room with our dogs hoping they will alert us if he has one while we're sleeping and also have a baby monitor right next to his crib with the receiver right next to my ear.

For those that have experience with this, how do you sleep? Is there something available that will wake us if he has a seizure in the middle of the night? My wife and I are both exhausted. When he's awake, he crys because of the pain from being intubated twice on Monday and coming off heavy sedation and we can't comfort him. When he's asleep, we both feel like we have to sleep in shifts to keep an eye on him.

If anyone knows of a good website, book, or can give advice or suggestions or what your experience with seizures has been, it would be greatly appreciated.

I'm sorry if I'm rambling and incoherent. Thank you for any feedback you can give.

 

[CtCardinals78]

Syracuse,
First off my prayers and wellwishes go out to you and your family. I have a three year old and a five month old, so I can only imagaine what your are going through.

I went to school with a kid and he suffered from a pretty severe case of epilepsy that consisted of both grand mal and petit mal seizures. I forget what his specific diagnoses was, but I know it was a pretty severe problem and one that he dealt with since he was a child. He was getting a lot of special care by his doctors. He was fine, other than he was on a lot of medication and had to get a lot of tests done. Whether or not it was related to the epilepsy or not, I know he also had some learning disabilities as well. With the medication he seemed to live a pretty "normal" life, and you honestly wouldn't know about the epilepsy if you didn't know about it (if that makes any sense).

I am happy to hear that the MRI and CT scan showed no abnormalities, and hopefully the doctors will be able to get a handle on this right away and find out what will make him better. Again I will keep your family in my thoughts and prayers and hope the little guy gets better soon.

PS

I know when our boys are sick I know my wife and I sleep in shifts. Hopefully you guys will be able to figure something out so you canbalance out your sleep cycle as well as caring for your son.

 

[Divide Et Impera]

My daughter had a fevrial (sp?) seizure when she was about 1yr9mos. Scary as hell. Doesn't sound like what you are going through. Hers was due to high fever and brain overheating (basically).

It was tough. Frankly, my wife probably suffered from some type of PTSD for a few years.

Don't feel inadequate as a father, just love him. For every moment you take (waste) second guessing and doubting is just one moment less for you and your son. We have only a finite number of 'moments' in our lives, so we have to budget them, allocate them and use them wisely. That's my only piece of advise for you.

Take care and God bless you, your son and your family....

 

[lauraw]

Our Prayers are with you, SyracuseCards!!!

 

[sportznutt]

Wow..........thoughts and prayers.......good luck and God Bless.

 

[TJ]

I pray for the best

 

[azdad1978]

Prayers for you and your family.

 

[CaptTurbo]

Best to you buddy. Jonathan is one cute little buddy.

 

[BullheadCardFan]

God bless you, your son and your family....

 

[freebyrd]

syracuse..

what kind of vaccine dosing schedule is your son on? its too much too soon for a lot of children check and see if thimerisol was part of the preservative in your sons vaccines
if he got the multi recombinant vaccines like mmr measles mumps and rubella chances are it was
when my son was born five years ago he had not been in the world for more than a few hours when doctors ordered nurses to start his vaccine schedule

i told them to get away from my kid with that stuff
truth be told he never had any after that and hes healthy and started school this year
these fear mongering doctors who have big pharma in their back pockets tried to convince me that he wouldn't even be allowed in school without this vaccine schedule
and all i had to do was sign a waver on religious grounds as to why he didn't have them
i urge you and any other parents or soon to be parents to do some research on this stuff and make an informed decision concerning your childs care

i will ask the wife to pray for you (she's much more pious than i am)
and i send you my best regards and hope this was just a little blip on the radar
seizures can happen any time for a multitude of reasons
heck i myself was over working myself and not sleeping well a couple of years back plus i was weaning myself off some sleep medication i was prescribed that i didn;t want to be dependent on and after a few days i went into full rem sleep sitting up on the side of my bed
long story short
i fell over and cracked the back of my head on my nightstand and hit the floor in full grand mal seizure
and you do feel loopy and not yourself afterward so i feel for your little guy
i even had short term memory problems for a couple of weeks afterwords

and i had never seized before in my life was it sleep deprivation? coming of the meds? the blow to the head that caused it?
nobody knows for sure and all my tests came back negative so it can be a complete anomoly and never happen again i hope thats what happened to your son and you never have to go through it again

its a terrifying thing to watch but speaking from my only experience with the phenomenon your son isn't in any pain and doesn't even know its happening

don't doubt your parenting skills i am sure your a loving father and that everything will be allright
hope i have given you some things to think about and put your mind at ease
if theirs anything else i could help you with or questions i could answer feel free to pm me
freebyrd

 

[CardinalChris]

My daughter had a fevrial (sp?) seizure when she was about 1yr9mos. Scary as hell. Doesn't sound like what you are going through. Hers was due to high fever and brain overheating (basically).

It was tough. Frankly, my wife probably suffered from some type of PTSD for a few years.

Don't feel inadequate as a father, just love him. For every moment you take (waste) second guessing and doubting is just one moment less for you and your son. We have only a finite number of 'moments' in our lives, so we have to budget them, allocate them and use them wisely. That's my only piece of advise for you.

Take care and God bless you, your son and your family....

My oldest had a fabrilic (sp?) seizure when she was about 2. Scared the you know what out of me and she still sleeps in my bed with my wife and I when she has a fever. In fact I almost put her back in her bed the night she had them and and end up vomiting on her back right after the seizure stopped. To this day I freak out that she may have chocked if I had laid her back in her bed instead of keeping her in my bed where her seizure woke me. I wake up about every hour on the hour on nights where she has a slight fever, so I understand why you are so tired.

There is no remedy for your piece of mind IMHO. You and your wife are awake because you are loving parent who care about your child. Although it is exhausting, something tells me it helps keep your mind at ease and offers a little control of the situation. Seizures are so tricky since they can be caused by so many things. Be patient, diligent, and when the doctors come up with a diagnosis it may help rest many of those worries. My wife and I will keep you in our thoughts.

 

[DemsMyBoys]

Syracuse,

First off, the little guy and you and your wife are all in my prayers. Right now.

I've not had this particular problem to deal with but I have taken care of critically ill family members. This is one of the hardest things you will ever do. I agree that trying to sleep in shifts is a good thing if you can do it. Meanwhile I'm sure you're sleeping with one ear open.

I know today's health insurance and medical care can cause additional problems but there is one thing I know for certain: no one knows your son as well as you do and no one can tell when something is "off" with him as much as you and your wife can. Use your parental instincts. If you think something is wrong but the doctors are telling you everything is OK, go with your gut. Something is probably wrong.

Whether back in the hospital or at the doctor's office do not be afraid to stand up for your son. If this means they put "Parents are B&%&%$ds" on the front cover of his file so be it. If you feel that a particular doctor or nurse is not doing enough for your son or is not answering all of your questions, go over that person's head. Find out who the director of nursing or the head of the department is and go pound on their door. I've done this. (In fact I've sat in intensive care waiting rooms and told other families to do this if they have to.) I've seen it get results.

Conversely, if you find a doctor or nurse who you feel has a special connection to your son, grab on to them. They've been sent by God. If you have someone like that they can also help you with beyond the norm questions and concerns.

If you've got insurance, read every word in it. Find out what you are entitled to under that policy. Check to see if it will cover the costs of equipment to monitor your son. No one will volunteer "extras" that may actually be covered. If the hospital has a liason whose job is to be a buffer between the hospital and the family use that person. You've asked some questions here that someone at the hospital should have given you answers for. (When the doctors wanted to put my father into a ward after open heart surgery I went home, got his policy, found out his insurance paid for a double room, and went back to the hospital to shove the policy into the nursing director's hands. He got a double room.) You can do this!

But asking questions here is a good thing because you never know what you can learn from someone who has been through it. So, God forbid, if you are back in the nicu or are in the waiting room of the doctor's office talk to the other parents. Find out what they are doing. Find out how they've gotten help.

Sorry if this is long, but unfortunately I've spent way too much time in hospitals and between my parents and husband I've pretty much seen it all.

Meanwhile, as I said, I'm praying and I'll be asking my friends to pray for you.

Hang tough. You will get through this!

DMB

 

[CardLogic]

I don't have any advice, Syracuse; but you son and your family are in my prayers.

May God provide your son with healing, and your family with comfort and peace.

 

[WildBB]

Hi Syracuse, your family is in our prayers.

What I would suggest is you go to a Barrows Neurologic Clinic. They specialize in all types of neurologic abnormalities and may discover something that can be corrected that others may not identify.

We are lucky to have on right here in Phoenix that many come to from all over the world.

My 17 yr. old son was operated on this summer after discovering one of these abnormalities diagnosed as "AVM", which is a small clot of veins or arteries wraped up in a tiny ball outside the brain, which is more predominant in males and something your born with. It causes seizures mostly from the teens on up but could occur earlier. It can be removed. I would recommend doing more testing. God bless you all!

 

[Goldfield]

I have thee boys and I wouldnt know how to handle something like this. I hope everything works out.

 

[100%CardsFan]

Man I dont know how you are going thru this an not just freaking out of your mind. I have a 8 month old and freak out everytime he just cries.. The helplessness feeling must be overwhelming. our family will be praying to give you peace, patience and guidance through this rough time.

 

[Mitch]

I am praying for your son, Syracusefan. Hope he bounces back strong.

 

[82CardsGrad]

Syracuse,

First off, the little guy and you and your wife are all in my prayers. Right now.

I've not had this particular problem to deal with but I have taken care of critically ill family members. This is one of the hardest things you will ever do. I agree that trying to sleep in shifts is a good thing if you can do it. Meanwhile I'm sure you're sleeping with one ear open.

I know today's health insurance and medical care can cause additional problems but there is one thing I know for certain: no one knows your son as well as you do and no one can tell when something is "off" with him as much as you and your wife can. Use your parental instincts. If you think something is wrong but the doctors are telling you everything is OK, go with your gut. Something is probably wrong.

Whether back in the hospital or at the doctor's office do not be afraid to stand up for your son. If this means they put "Parents are B&%&%$ds" on the front cover of his file so be it. I'd walk into a room to see my Dad and I could feel the dislike from the nurses. I didn't care. I wasn't there to make friends, I was there to be an advocate for my dad and to get him well. If you feel that a particular doctor or nurse is not doing enough for your son or is not answering all of your questions, go over that person's head. Find out who the director of nursing or the head of the department is and go pound on their door. I've done this. (In fact I've sat in intensive care waiting rooms and told other families to do this if they have to.) I've seen it get results.

Conversely, if you find a doctor or nurse who you feel has a special connection to your son, grab on to them. They've been sent by God. My husband had one nurse in the hospital and one hospice at-home nurse who were so terrific I can never thank them enough. The hospital nurse I know for a fact spent extra time with him and went "above and beyond". (They'd watch Laker games and eat popsicles together after the nurse was off duty. There are some wonderful people out there.) If you have someone like that they can also help you with beyond the norm questions and concerns.

If you've got insurance, read every word in it. Find out what you are entitled to under that policy. Check to see if it will cover the costs of equipment to monitor your son. No one will volunteer "extras" that may actually be covered. If the hospital has a liason whose job is to be a buffer between the hospital and the family use that person. You've asked some questions here that someone at the hospital should have given you answers for. (When the doctors wanted to put my father into a ward after open heart surgery I went home, got his policy, found out his insurance paid for a double room, and went back to the hospital to shove the policy into the nursing director's hands. He got a double room.) You can do this!

But asking questions here is a good thing because you never know what you can learn from someone who has been through it. So, God forbid, if you are back in the nicu or are in the waiting room of the doctor's office talk to the other parents. Find out what they are doing. Find out how they've gotten help.

Sorry if this is long, but unfortunately I've spent way too much time in hospitals and between my parents and husband I've pretty much seen it all.

Meanwhile, as I said, I'm praying and I'll be asking my friends to pray for you.

Hang tough. You will get through this!

DMB

This is some terrific advice... Syracuse, you and your family our in my thoughts and prayers. Stay strong as your little guy needs you more than ever.
God bless him and bring peace to this family.

 

[DemsMyBoys]

This is some terrific advice... Syracuse, you and your family our in my thoughts and prayers. Stay strong as your little guy needs you more than ever.
God bless him and bring peace to this family.

I later edited it because I put some personal stuff in there but so be it. I'm sure I'm not the only person on this board who has gone through some pretty awful times.

The horrible moments do pass. But I wish I'd had someone holding my hand and walking me through it at times. So if someone else can learn from it, so much the better.

If there is anything I can do, Syracuse, PM me, please.

 

[82CardsGrad]

I later edited it because I put some personal stuff in there but so be it. I'm sure I'm not the only person on this board who has gone through some pretty awful times.

The horrible moments do pass. But I wish I'd had someone holding my hand and walking me through it at times. So if someone else can learn from it, so much the better.

If there is anything I can do, Syracuse, PM me, please.

Whoops... sorry about that. Just let me know if you want me to delete my post.

 

[LVG]

I can't even begin to imagine what this must be like for you and your family, Syracuse.

My thoughts are with you.

 

[Catfish]

I am so very sorry to hear of your plight Cuse-----I have no advice or knowlege about your situation, but I want you to know that I will be praying for you and your family. It seems like several posters have brought forward some very good to know information for you. I hope you find some peace and help through your request. God bless your son, and your family, and keep you safe in his loving arms and grant you the comfort that you seek for your troubles. Amen

 

[Reddog]

Syracusecards,
You are in my prayers. I also sent you an email with some contact info. I passsed your post on to a friend who's daughter has been having daily seizures since she was 3 months and she is now two. They have a wealth of knowledge and I forwarded a message from them and their phone number to you. Please confirm receipt.

 

[Zeno]

As a child I had seizures anytime my body temperature exceed 99 degrees. I was put on phenobarbitol(sp?) and luckily for me it was a childhood illness and I probably had my last seizure around 5 or 6 yrs old...I honestly have no memories of it.

Just listen to the advice of your doctors they will know what to do.

 

[Syracusecards]

Thank you all for the encouragement, prayers, kind thoughts, and advice. It really means a lot to know there are so many incredible people out there. I feel like I have a direction to go now for information and help that I didn't before so it is really appreciated.

Reddog and PACardsFan, I PM'd you back but want to say thank you again.

This whole ordeal has been extremely difficult. I never in my life envisioned having to give my child CPR and never want to go through that again.

He seemed a little better today, he drank a little apple juice and we hadn't been able to get him to drink anything since Saturday so that was encouraging. He's still very weak and crys a lot. We took him to the pediatrician and found out that on top of everything, he has an ear infection.

Anyway, I just wanted to say thank you all so much for the support and for sharing your stories. It really has helped immensely. Although I knew there are other people that have experienced this, I still felt like we were on our own because we didn't know anyone who personally had gone through this. I no longer feel that way, and thank you again for that. I will keep you all posted on his progress.

God bless all of you.

Sincerely,

Kevin, Michelle, & Jonathan