Cunningham Results are back and not sure about what they say?

[Rachel]

Hi Cara

 

I went back to look at my son's Cunningham Panel results. The first results indicated Unlikey because nothing was elevated. My son was having symptoms but had just been on an antibiotic for a sinus infection. However when my son got a double ear infection,all his symptoms increased ( headache, vocal tics, hypersensitivity, tremors, muscle and scalp pain) everything on the second test was highly elevated. To me this test is confusing but it did let me know that whenever my son gets sick, the antibodies are present.

[cara615]

i just got off the phone with Bradstreet and he seems to think the high tubulin titres suggest a possible Mercury burden. So we are going to do a urine test while provoking DS with 100mgs of DMSA which is supposed to give us an idea of how much Mercury burden his body actually has.

 

i have given him cod liver oil since he was 6 months old - Nordic Naturals. I wonder if there is mercury in there. I stopped giving it to him about 6 months ago.

 

As far as tics go, ds is vocal tic free. This is the first time in over a year and a half that he is not doing any vocal tics. He does however have 3 motor tics with one being head jerks. I HATE THOSE!!!!!!!!!!!!

 

Another factor is that his brother has had strep 4 times this year with the latest case being in May and keflex did not kill it. He is now on clindamyacin with rifampin and will have a T&A on July 30th. I can't have him getting strep 4x a year and setting his brother off.

 

As for PANDAS ds, we are moving him to a prophylactic dose of azithro (250mgs 2x a week). I am so scared that his tics will come back. i am praying he can handle the reduced abx especially since the Bravo has been healing his gut.

[tj21]

Only Cam KII was high on ds14's Cunningham Panel, everything else in "normal" range. Still waiting for the D2 to come it as well. @rachel, your Wieslab article had a nice (eg. layperson's) description of what only an elevated Cam KII "means."

 

Meanwhile, we continue to treat for PANS (since March 2014) and gut healing, and have seen a huge decrease in tics. Still getting aggressive/euphoric flares, about every 3-4 weeks.

 

Just got YouScript Cytochrome and Pharmasan Neurotransmitter results and working w/Integrative PANS NP to balance Serotonin and Glutamate out. ds14 is on NAC and has elevated Glutamate, what is the contraindication, @rachel?

 

Completely exhausted here too, though now I could be an honorary LCSW!

[HopeinHIM]

SSS thanks for weighing in I do appreciate it. I am so beaten down by this disorder and how to get rid of these freaking tics that I have aged 10 years. I am so tired of playing doctor. So so tired.

 

We have a fabulous PANDAS doctor but if I called him every time I had a question, I would be broke. Its just not fair what we all have to go through.

I am sorry and feel it too. Every time you talk to the docs their bills are sent in the mail that very moment. Our docs are Good and caring but overwhelmed and expensive. I am not a scientist like so many of the parents seem to be. I don't trust myself either in that arena. I journal al his symptoms and keep myself educated and on sites daily !!! the rest I must leave up to God! It seems like time must pass for the healing and that is the biggest trial of all. Waiting!!