New and Looking for Answers

[GreenTeaGinger]

inally a site that is active

My son had his first seizure in 2009 on Thanksgiving morning. From what I can figure out it was a tonic clonic (he fell to the floor, jerked, eyes were open and fluttered but he didn't have any mouth foam nor did he have incontinence). We had no idea what was happening and called 911. Since then he has had an EEG which showed seizure activity (sleep deprieved). The Dr. told us that he didn't want to label what they saw as juvenile mylconic because some of the patterns were too slow(?). He also showed evidence of absence seizures. In addition, we began to notice he has partials with his hand clenching and unclencing. This is usually a warning that a bigger one is coming on.

We have him on Zonegran which did stop them for about a year. Then he had one on the 9th during the day (normally they happen very early in the morning). He just had another this morning.

I'm wondering if it's possible that his seasonal allergies could be a trigger. We've noticed they tend to hit on warmer days (we live in the South) after he's been out playing for much of the day. I'm starting to think we need to get him an allergy work up.

 

[Endless]

Hi, GreenTeaGinger,

Welcome to the forum! I'm sorry to hear about your son's seizures.

Just about anything can be a seizure trigger for any individual person. Everyone is different. Allergies can be a trigger, so can heat. There are many members in here who say that heat makes their seizures worse.

Does he have other symptoms of allergies? Runny/stuffy nose, red eyes, itching, etc.?

An easy allergy work-up is to just have his blood checked. It's just one needle stick - a blood draw. They do the test in the lab. Then if they find lots of allergies then they do a skin test. Skin tests aren't fun, especially for kids. It's like being stung by about 30 bees. Get calamine lotion in advance because he's gonna itch.

Here's one short thread on seizures and heat:
http://www.coping-with-epilepsy.com/forums/f23/does-heat-affect-e-you-11536/

 

[Nakamova]

Hi GreenTeaGinger, welcome!

As Endless says, there can be a wide variety of triggers -- it could be the time of year, or the time of day. Many people are triggered by heat or by dehydration. (Make sure he's getting plenty of water/juice. With Zonegran it's extra-important to stay hydrated because of the risk of kidney issues.). Others are triggered by bright sun, or flashing lights, so perhaps that's a factor too.

If you son's seizures are increasing in frequency, it's a good idea to check in with his neurologist about evaluating the Zonegran. His blood levels might need to be tested, the dose might need to be adjusted. Is he otherwise tolerating the Zonegran okay?

I hope he's feeling better after this morning's seizure.

Best,
Nakamova

 

[GreenTeaGinger]

He's good. He just got up and seems fine. No headaches or tremors.

We were thinking about bringing him to an allergist anyway. For now I'll keep him dosed up on his allergy meds. I think he also might need a med adjustment as he managed to finally gain some weight (Zonegran has killed his appetite).

We're just worried that it's getting worst It was hard to have them come back after a year free.

Thanks for the link! I don't think it's heat because he's fine in the summer and wow is it HOT in the summer.

 

[Cint]

Hi GreenTeaGinger,

I used to live in the south and I had seasonal allergies and my son did too, along with a bad case of asthma in the south. My son had the allergy work up, the skin test, done when he was 6 years old, and found that he was one of the worse cases the allergist had seen. So he was getting allergy shots twice a week, along with his asthma treatments. My allergies weren't as bad as his, but my dr. did prescribe something for them. But for me, I don't think the allergies were a trigger for the seizures. Maybe with your son the hard playing along with the allergies could trigger the seizure(s).

And as Nakamova said, check with the dr. to have his blood levels checked.

 

[GreenTeaGinger]

I forgot to add that he has had blood work done. We asked and they kind of stumbled over the question and just said that his potassium was low. I have called them and waiting to hear back.

 

[Endless]

GreenTeaGinger,

Did the doc say what his carbon dioxide and sodium levels were? I just went through metabolic acidosis and am still in it somewhat. It is a side effect of some of our meds. Acidosis has low potassium, high sodium, high C02. All this together would mean the blood is too acidic, which can cause some pretty extreme symptoms when it gets bad enough. For metabolic acidosis, Potassium Citrate to make my blood more alkaline was the remedy.

Low potassium alone is rough enough. Sometimes there are no symptoms, but if it gets low enough it's pretty awful. Symptoms: http://www.medicinenet.com/low_potassium_hypokalemia/article.htm

I hope he feels better soon.

 

[RobinN]

If my child was having seizures and had severe allergies, I would focus on the health of the intestinal tract. When the immune system goes into hyperdrive, it usually means that the gut is not healthy and is overwhelmed - thus cranking up the immune system. It simply can not cope.

Seizures are a symptom. The drug is treating the symptom, not the cause.

 

[GreenTeaGinger]

I wouldn't say that my son's allergies are severe, and it appears that he only has seasonal as opposed to food, etc. We've never had gut problems with him but it's something I am wiling to look into. I hesitate to just automatically assume gut issues because it will mean radical changes for the whole family which is stressful in itself. But it is something we will investigate.

As for treating the cause...well we'll do that for now. I am not comfortable not doing the meds. They have helped my son tremendously in terms of being able to focus (issues I think from the absence seizures) and so far the side effects have been small. My goal is to look into other forms of therapy and use them but in combination with the meds.

Thanks for the comment about sodium, levels, etc. I'll call and ask the Dr. today.

As an update, they did call us yesterday and suggested we up his meds a bit. He's fine now after acting a bit groggy all day Monday.