Possible seizures, loss of head control at night, any1 else?

amother

Thu, Sep 20 2012, 2:41 am

Hi everyone, I am looking for someone else with similar experiences to me. (if there are any, I feel like this is a really strange thing)

Since May, my almost 1 1/2 year old (than 1 year old) has been waking up every other week. SHRIEKING and not holding up his head. It flops backwards, he seems to be in pain, it takes about 15 minutes to calm down. It doesn't look like seizures but one of his EEG's (the day after such an incident) came back with suspicious activity. We have been to the neurologist, gastro and did bloodwork to rule out a metabolic disorder. We have yet to do a sleep study. Last night, he was in my bed and I woke up in the middle of th enight because his movements looked funny. His breathing was shallow and rapid and he was jerking around a little bit. This happened once before a week ago or so.

The last time he had a lack of head control incident, in the middle (while still crying, totally conscious), his head flopped forward (usually it flops back), he put out his arms and legs and got really stiff (all while crying) and started jerking back and forth. To me this seemed like a seizure buy my ped said that he has to be unconscious to have a seizure. a few minutes later, I had laid him down to see if he could calm down that way and he got really still and out of it for a few seconds and was staring into space. Then he jerked out of it and started screaming again.

Does anyone have any experience in this? Has anyone been through something similar?

I don't see any reason to bash, but please make sure you dont. This is a very sensitive thing for me. He is not my first and I have never seen anything like this.

TIA

amother

Thu, Sep 20 2012, 3:21 am

Thanks Liba. The doctor's don't think it sounds like a seizure. Which part sounds to you like a seizure?

I am in Israel. I have seen Dr. Edi Aron in Shaarei Tzedek. The second EEG not next to an incident was clear. I am suposed to do another one when he has an incident at night (was thinking maybe I should have gone in this morning after last night, but whatever), but they have been happening on weekends.
I am open to all and any suggestions. I feel so new to this and floundering... (not to mention the emotional wreck I have been)

amother

Thu, Sep 20 2012, 3:33 am

I don't know why your ped thinks that you need to be unconscious for a seizure- google "partial seizure" and you will see this isn't the case at all.

My husband has a seizure disorder and when we made aliyah he was recommended Dr. Dana Eckstein at HEK, she is supposedly one of the top seizure people in Israel. My husband had been a patient of one of the top epilepsy specialists/researchers in the US so he has what to compare to and he and I were both impressed with her.

Refuah shelaima. It sounds terrifying but hopefully you will find the right diagnosis and get it all under control soon.

amother

Thu, Sep 20 2012, 4:32 am

Ur child is definitely having seizures. I myself had seizures and those were the symptoms I had that confirmed that I was seizing. I had grand mal seizures and mini-petite siezures. The reason (most likely) why ur child is crying is because usually after a seizure the person gets hit by a massive headache where nothing can calm it. Again, I'm speaking from experience and research. I feel bad that I can't be of any help here, (I'm in the US) but u should definitely get a good neurologist to thoroughly study the EEG. It might be that there's something triggering the siezuressince u said it happens on the weekends. A good neurologist would be able to figure that out.

Sending u hugs. Trust me, I feel ur pain, and even more, ur child's.

pelle

Thu, Sep 20 2012, 5:34 am

so sorry you and your baby are going through this. my daughter has a seizure disorder. we live in the u.s. so can't help with reccommendations for dr.'s.
YOU SHOULD DEFINITELY get the baby to have a VIDEO EEG in HOSPITAL OVERNIGHT for at least 2 days so they can see and have a record of whAT TYPE OF SEIZURES ARE GOING ON. unless you heard your pediatrition wrong I would look for a new one when things calm down. one can be totaly conscious and have a seizure. sorry about typos my son is climbing on me.... hatzlacha v'bracha and rafuah sheleimah b'karov. may H-SHEM send the right people to help your baby. hugs!

cbsmommy

Thu, Sep 20 2012, 6:37 am

pelle wrote:

This.
DH has a seizure disorder. I agree with what everyone else is saying - this sounds neurological. What you are describing sounds EXACTLY like a partial seizure (or petit mal based on the old terminology.) That jerking and loss of head control sounds like a tonic clonic seizure (often accompanied by loss of bladder/bowel control) and when they "snap out of it" they are in a postdictal state - very confused, in pain, terrified, etc.

I was telling DH what I was typing and why - he turned around and said "time for a new pediatric neurologist."
Then he said the following:

Things to consider:
1) 1 in 100 children have seizures. Epilepsy is on the list of common childhood disorders after asthma, allergies, and diabetes. This means that although its scary and you feel isolated, there are LOADS of other mommies to talk to and lots of other children for your child to speak with when he's older. You aren't alone on an island (even if your pediatrician is treating you like you are).

2) Seizures can have known triggers (DH cannot be around a strobe light, being tired puts him at risk for a seizure) and they can be unknown.

3) There are a number of different types of seizures. Absence seizures (child looks like he/she is staring into space), tonic clonic, etc. Here are some nice clear explanations. http://www.epilepsy.com/epilep.....zures

4) Many seizures start while a person is sleeping. The fact that this is happening in the middle of the night sounds par for the course.

amother

Thu, Sep 20 2012, 10:53 am

This is the OP

Thank you everyone for your responses. I was kind of hoping to hear "yeah, my son did that too when he was one, it went away on its own and hes a healthy strapping teenager" oh well.

I want to clarify what I said before

1) he has these incidents about every two weeks (though bli ayin hara, it has just about been three weeks now). He wakes up screaming and has no head control, takes about 15 minutes to calm down. I have been in the room with him before one happens, and I see no sign of a seizure before hand

2) the last time he had one (only once) the other things happened

3) he also recently (twice in the past two weeks) had some sort of shaking in bed at night incident and there was no crying after, he just slept through.

Now I will go through and respond one by one

amother

Thu, Sep 20 2012, 10:54 am

Liba wrote:

The jerking, the staring and even the crying sound siezure like to me. Shaarei Tzedek is renound for not being the place to go for pediatric siezure disorders. Get to Dr Bruria Ben Zeev http://eng.sheba.co.il/Sheba_H.....tute/ she is in in Tel Hashomer (Tel Aviv), but it is worth the travel.

Thank you. That link was very good. In SZ, they told me they can't do an overnight EEG which is what we want being that the incidents are happening only at night, bah. They happen about 2-3 hours after he goes to sleep. Never after midnight.

amother

Thu, Sep 20 2012, 10:55 am

amother wrote:

Thank you!
I need a pediatric neurologist though. Thanks for your support.

amother

Thu, Sep 20 2012, 10:57 am

amother wrote:

I think they called them atypical clonic tonic seizures, the suspicion of seizures in the first EEG.

He is crying, but not connected to a visible seizure. the seizures (the 2 possible ones that I saw), he slept through.

They dont really happen only on the weekens. the first one was a tues, next was a wed and I decided with speaking to a doctor not to go in. the next few were thurs and friday and they dont do EEGs here on Friday

amother

Thu, Sep 20 2012, 10:58 am

pelle wrote:

Thank you! Does your daughter have regular seizures that are typical? how did you figure out what was going on? If I feel like blowing my cover, can I PM you?

amother

Thu, Sep 20 2012, 10:59 am

cbsmommy wrote:

pelle wrote:

Thank you! It helps to know I am not alone, but I wish I could find another mother to talk to... Would give me some chizuk.

Can he sleep through a seizure and not wake up from it?

Thanks again!

cbsmommy

Thu, Sep 20 2012, 1:14 pm

Hey OP -
I know I'm not another mommy, but I can give an adult perspective. Wile I can't say "oh yes, my DH or DS had that but now he's a healthy 12 year old that has no issues" I can say that DH is a straight A student in a top master's program, he can drive, he's an excellent Abba, and he has a steady job where he's worked for the last 7 years. Dh still takes daily medications, but needed 2 tablets a day doesn't mean that he's a bad person...it means he just needs a daily medication.

Epilepsy runs a spectrum. People can have minor or major seizures.

And although it's scary now, there are LOADS of children (and adults) that have seizures, there are lots of support groups, neither you, nor DH, nor DS is alone.

amother

Thu, Sep 20 2012, 1:37 pm

CBS - you made me cry! THank you for your support. I just want my baby to be healthy. I go back and forth (natural grief, I guess). 1) everything is really ok, they are going to send me home and tell me I am nuts and 2) I DIDN'T SIGN UP FOR THIS! I don't have strength to deal with this. The rst of my family needs me. And I am so far away from any support.

I didn't know there were support groups, I wouldn't even know where to look for one. Our parents don't even know (I told my father, no one else). A select group of close friends know and I am not sure that even makes me happy.

I want closure. I want to know what is going on. I can lull myself into denial in between 'attacks'. and then it strikes, right when I am getting to be the most calm...

Whatever. It's been a rough few months...