Ore ida

[charmdb 0]

I'm so confused!

I have a two year old son. For the last 18 months or so he has been having symptoms that at first seem unrelated, but now I'm starting to think maybe it's all connected.

When he was a baby, about 8 or 9 months or so, he had 4 or 5 seizures over a week time frame. What I thought were grand mal. We saw a neurologist who did a sleep deprived EEG and a CAT scan, both were normal. I never saw another seizure of that type again. Then a several months ago I started to notice him doing something really weird. He was kind of staring and he was holding his hands weird and it all just looked weird. He was totally zoned out. Then I started noticing that they were happening very randomly, I thought maybe he was just day dreaming, but the way he held his hands was so weird. I finally caught one on video using my cell phone. I showed it to his doctor and explained the seizures he had the year prior. They sent me to a different neurologist for a second opinion. This neurologist did a 24 hour EEG and of course it was normal. Not one time during that EEG did I notice one of his staring spells. They don't happen on a daily basis so I wasn't surprised.

Then I noticed that he no longer had an appetite as he always had. By this time he was almost two and they assured me it was normal. His weight fluctuated, he'd drop a pound or two then next appt he'd gain it back, it was up and down. But never over 25 lbs. No one seemed worried about it. He is constantly thirsty and I thought maybe I let him drink too much. So I tried making him eat and not giving him drinks as much. That just made him mad. He didn't want to eat!

Then he started waking up in the mornings soaking wet. He's not potty trained, but he'd wake up with a diaper so bloated that it leaked, getting him and his sheets soaked! It turned into an almost every night occurrence. So I started limiting liquids at night. Nothing after 7ish. And still he'd be soaked. I finally called the doctor, they said that if I was limiting liquids and it was still happening, then I needed to bring him in. So this last Friday (12/11/09) we went in. I explained the story, I didn't mention the seizures at first. She checked his weight gain over the last few visits and noticed he hasn't gained any weight! He has fluctuated but not gained and there should be some gaining. He is still 25lbs and has been for a while. He is in the 10th percentile for weight and the 5th percentile for height, so as far as two year olds go, he's tiny! She is the first doctor to notice that he hasn't gained any weight. I knew he was fluctuating but no one ever said anything about it. So that was a big red flag for her. Then I mentioned the neurological issues and I told her that maybe I watched to many medical dramas on tv, but I asked her if it was possible that they were all connected. She said yes it was. But first she wanted to get a urine culture, test him for diabetes, and an xray on his abdomen. So Friday he had a urine culture and an xray, his diabetes test isn't until this Friday. His urine culture was fine but they said from his xray that his intestines contained a "large volume" of poop. She told me there would be no way I could know that, that he would have normal bowel movements but could still be backed up. So now he is on some laxative to help him get rid of all of it.

So last week I saw the Dr. Oz show and their segment on Celiac Disease. I didn't catch where Elizabeth was talking about the symptoms, I only caught the tail end of that part. But I saw the rest and I saw where she mentioned the weight loss part of it. I was diagnosed with IBS. I have found that through diet, I can control it. My diet happens to be low carb. So over the weekend I was looking up exactly what gluten was and what a gluten free diet involved. Then I saw a link for a website on Celiac Disease, I clicked on the link and was just looking. I noticed that all of my sons symptoms fit! The seizures, the loss of appetite, all of it!

I know you can go to any website of some medical disorder and come out thinking you have it. But it just really seems to fit!

I've been to more than on website and one seems to fit him and another doesn't. On Friday I want to talk to his doctor about it, but I don't want to look like an idiot! Like walking in there and diagnosing my kid with something he couldn't possibly have! I figure someone who actually deals with it first hand would know better than a website!

And he is always complimented on what long beautiful eyelashes he has!

[lisa25 8]

You might consider reading some of the articles on dogtorj.com. The left side of the webpage is a list of topics which includes one about epilepsy and how it is related to food sensitivities. From the research I have done, a lot of autoimmune diseases can be linked to food sensitivities, so whether or not your son has Celiac I think this would be a good read.

[carecare 9]

I have a friend who's daughter had siezures and it was a result of her having celiac. Going gluten free has totally cleared her of all seizure activity for years. It must be frustrating to be told they found nothing but yet you know something is going on. From what you describe it sure does seem like a type of siezure activity. Hope you can get to the bottom of it. My sister had a baby in her care that she felt was having several siezures an hour and the dr didn't feel it was of concern. Well, my sister told the mom there was definitely something wrong so she brought him to Mayo's...8 hrs away and indeed baby was having many seizures and is brain damaged now ...his case of course is much much worse...but just wanted to prove a point. Don't let a dr. tell you there's nothing wrong if in your gut you feel there's something going on. Get more video.....get another opinion if you have to.

Like the other poster...I'd also think about other sensitivities to other foods as well if celiac doesn't seem to be the cause. I think having the dr. run a celiac blood test panel would be wise.

My boys were always in the 5th % for weight and height...but I suppose they kind of stayed that way...with a slight weight gain each year...and no weight loss. They don't have celiac that I know of (currently thinking husband has celiac along with daughter).... I'm sure seeing weight loss is of concern...and hope you get to the bottom of your son's issues. I also have a nephew with diebetes...who got so sick at the age of 3 ....and eventually diagnosed diabetes. I'm glad they are checking into that....it's not something to mess around with.

Good luck and keep us posted!

CC