Update on my one year old and mold question

[colleendonny]

So, I posted before about my daughter, who just turned 1 last week. She started doing things with her eyes back in March. We thought it may have been a seizure disorder, but she had a 24 hour EEG, and there were no abnormalities. Although, she never did the blinking spells while on the EEG...

She does this thing where it looks like her eyes roll back quickly, and then she does this forceful blink that lasts about 2-3 seconds . When she was hospitalized after doing 6 episodes of that in 6 hours, she was on Cefdinir for an ear infection. Wasn't sure if maybe this was the way she dealt with the ear infection pain.

Then she started with the episodes on May 31st, a Sunday. I brought her in Monday and she had aan ear infection. We did Cefdinir and when the epsiodes didn't stop, we did Azithromycin for 2 days. Her ears cleared up, but she still was doing many of these episodes. Probably aboy 40x per day.

 

We have one neuro who wants a brain MRI, which I may set up. (Although I would like to try anoyther EEG first). Another neuro thinks it is a sleep disorder and referred to CHB sleep clinic. That appointment is in July. I brought her to a pediatric opthamologist. Her eyes are in good condition. Her optic nerve is normal.

 

We had a Dr. B follow up on Wednesday. I brought Lucy and showed him the videos. He thinks it can be early PANDAS, resulting in a tic... So she is on day three of Azithromycin. The eye movements have lessened. (Which I guess doesn't rule out or diagnose PANS/ PANDAS). I may opt for the blood work to be done on her as well at our follow up in August.

 

I wish I knew how to post a video on here from my phone...

 

Also, does anyone here know about mold and the best way to test for it?

We have a house that is 112 years old. But we did completely gut it back in 2006.

[JuliaFaith]

Also, does anyone here know about mold and the best way to test for it?

We have a house that is 112 years old. But we did completely gut it back in 2006.

We started out with the ERMI from www.mycometrics.com for around $300. It will give you a list of molds and their amounts measured in the rooms you test. It is a good starting point to see if you even have issues. Since we were not happy with ERMI test result, we remediated as much as possible on our own, then re-did ERMI, with not so good results (better but not a '2'), we hired a biohealthy contractor, who did actual air testing in the same rooms with the laundry room and attic added in. It was $250 + $100/per air test. We found the attic was extremely high and everything else fairly low. Not what type of mold but that it was high. Then did remediation based on that.

 

Good that you are thinking about this, since it can have results as major as lyme etc. I believe the mold may have been the precursor to 'PANDAS' for my son. We bought and read the book 'Surviving Mold' and keep up-to-date on it with www.survivingmold.com. Skipped the chapters on lawsuits ectera because they were way beyond what I needed. Just wish the book had an index so I can easily refer back to information. Also, once you go to the above website, they have all the medical testing information on that site too, I believe. Our dr. only did some of the tests that Dr. S recommends, but they were eye-openers to say the least.

[LNN]

Colleen,

I think you're right to take this as an early sign of something but try not to let it drive you nuts. You may want to talk to Dr M about testing her HLA-DR gene and/or for pyroluria. It could be that when she's fighting an illness, she could be having problems with either ridding her body of toxins and/or keeping her body supplied with enough zinc/B6 to support a taxed immune system. It could be that she's running at maybe 90% efficiency when she's healthy and you don't see any abnormalities. But then when she gets sick and needs 120% of resources and she only has 90%, that's when the deficiency really shows up as tics.

 

It's only my theory, but in hindsight, I think this was true for my son. When he was 2, he developed an eye tic for a few days when he was sick and the pedi just shrugged. He went on to exhibit odd outbursts of pre-pandas behaviors as a toddler but they were so sporadic that no one put two and two together. Had we known about pyroluria and his struggle to detox normally, it may have lessened the impact of Pandas. The pyroluria test is $70 (tho not sure how you do a urine catch on a 1 yo) and the HLA-DR test is covered by insurance.

 

If Lucy's body is killing bacteria but can't get rid of the die-off toxins or the dead cells (b/c her glutathione levels are low), this could be one cause of tics. Having to deal with mold toxins would only add to the overload. In a sense, it could be a herx-like response to fighting the infection and/or mold. Maybe she can handle the toxins from one or the other but not both at the same time. Zinc, B6 and alpha lipoic acid might be worth discussing.

 

We never went thru the ordeal of ERMI testing but we did find mold (replaced 2 rugs, tossed everything in the basement, found a leak in the roof that had made some attic insulation wet and found mold inside my washer drum that was making three of us sick). A 100 yr old house near the ocean would certainly be suspect. Sometimes, this becomes a multi-pronged approach where abx is only one tool. Dr M would be a good one to use as a sounding board on this.

[colleendonny]

Thanks for info on the mold checking. This is something that will he on ky list of things to do. I do think we have some in the attic...

 

Laura,

Thanks for your ideas on Lucy. I will definitely bring this up to Dr. M. I'm sure I will have to set up a new patient appointment for her.

What you are saying definitely does make sense. I'm wondering if I could get my pediatrician to order the pyroluria test for me rather than waiting until August to see Dr. M. I Kay have to reschedule our appointment too, because I just realized it is DD's first day of kindergarten. It will certainly be difficult getting a urine catch on a 1 year old.

I will be off to do some research tonight.

My head is spinning!

[colleendonny]

Excuse my typos. I seem to always post from my phone