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I Think That My Four Year Old Has Dysautonomia - Help Please


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I think that my four year old has dysautonomia. It's been two years trying to figure out what's wrong with her. We've ruled out so much. A couple months ago I called her cardiologist because her heart rate was so varied. It was speeding up then slowing down a bunch one morning when she was sleeping. I noticed because my hand was on her chest. Anyway, her cardiologist (she has a cardiologist because she had a hole in her heart as a baby) and I were talking on the phone and I briefly mentioned her symptoms and he said "that sounds like dysautonomia". I paid close attention to her heart rate for a week and it didn't happen again and at the same time we were seeing a GI who was convinced she had some bacterial overgrowth in her intestines. So it turned out she did not have a basterial overgrowth, and finally the light bulb clicked and I remembered what the cardiologist said. I called him this morning and we have an appt at 3:30. She's symptomatic right now, but it's her last day of symptoms so they are fairly mild, I hope it will be enough for him to get a good idea of what we are dealing with. I've been reading all I can in the last 16 hours about dysautonomia trying to wrap my head around if this is really what she has (we've had SO many doctors tell us it's one thing and it turns out it's not). Here are her symptoms... Can you tell me if it sounds like a match?

Since age 2 she's had these symptoms. They come and go lasting usually 3-7 days but as long as four weeks. Usually a week or 3 of feeling ok in between. Usually, almost always it seems to be triggered by artificial ingredients in food - dyes, flavorings, preservatives, medicaltion etc. Obviously we avoid this whenever possible, but there have been slip ups and the symptoms come within 48 hours. There have also been a few times when I couldnt associate it with a food, so I'm guessing there is another trigger, perhaps something enviromental. But for example, Saturday she had a few bites of a cupcake with dye in the frosting (I purposely let her just to really make sure it was a trigger - as i said, we've thought we are right about other things a few times, so i'm so worried to get it wrong again), and by sunday morning she was so sick - all symptoms below - full blown. Today, Tuesday, she is tapering off, still not herself, but temp is going down - she's (99.1 right now but was 99.9 sunday morning), and bloating and swelling going down too.

Symptoms:

Dilated pupils
Bloated stomach (without gas)
Stomach pain
Constipation/diarrhea (we have ruled out pretty much all GI causes with an endoscopy/biopsy)
99.5 to 99.9 temp (not normal for her, she is normally 98.1)
Lethargy (laying on the concrete at a splash pad park, too tired/weak to play, for example)
Mood swings (emotional, short tempered, someties rage/hysterical)
Looks unwell (pale and a little puffy around eyes)
Stares into space a lot (we had an EEG and ruled out seizures)
Sometimes gets a mild rash on buttcheeks

Help. I'm so so tired of trying to figure this out and she's really suffering :(

also - i want to add, there are also a few "symptoms" that I'm not sure are symptoms or me being hyperaware. The above are for SURE symptoms. but here are somethings i noticed are a little off with her, but i can't be sure, like had she not have had the other issues, i wouldnt have thought twice about these: 1. thirst - particularly for drinks that are warm... i.e. she asks for us to warm her juice, water, milk, etc. and she throws fits for drinks. when she is symptomatic she would lay on the couch all day and drink a gallon of warm almond milk if we let her. but this could just be a preference or a comfort. 2. her trunk is very vein-y. not the case in my other two children, which is why i notced. looks like a roadmap. 3. she has trouble getting warm once cold. Last weekend we went to the beach. It was 80 degrees out and kids were in and out of the water playing happily. Molly comes out of the water and is shaking she's so cold. It took twenty minutes, wrapped in two warm towels, me holding her, trying to warm her up for her to stop shaking. And she was still cold to the touch. she also gets very upset when warm. today jumping on the trampoline the other two kids were fine and she started to scream and cry because she was hot. again, could just be her being dramatic, not sure if it's a real symptom, but i thought worth mentioning.

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Hi katieincalifornia,

It could be some form of dysautonomia. It also reminds me somewhat of mast cell activation syndrome (MCAS), which can be an underlying cause of dysautonomia and/or found comorbidly with dysautonomia. Here is our physicians list link:

http://dinet.org/index.php/physician-list?view=physicians

There may be a dysautonomia specialist in your area on the list.

Also, there is a pediatric GI specialist at Johns Hopkins named Peter Lowe who has a special interest in children with dysautonomia. In the past, members have had good things to say about their experiences with him regarding their children.

There are some highly specialized MCAS docs around the country too. If you want their info just let me know.

My guess is that to get a diagnosis in a child this young for dysautonomia or MCAS, you will have to go to a specialist that has a subspecialty specifically in these diseases.

Take care,

Katie

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