justinekno

I second these questions! I am picking up zithromax today too for my son. Have you tried other antibiotics before this one?

We are just discovering that the years of this rash in the rectal area was probably strep. He had the exact symptoms as the article states. My dr always said it was a "diaper rash" and to just use Desitin. AGH! We then moved onto have strep in the gut. He had lots of fevers at the same time. Coincidence? I think that rash was the beginning of all of our problems.

Could you contact the lab directly? We did this testing and I seem to remember they had a customer service number although I don't know if they are open on Saturdays...

Our take on this test is that it is a piece of the puzzle and not the "diagnosis". We are using this information along with other tests (strep related and others) to determine the best medical care for our son. For us, it was confirmation that we are going down the right road - no more, no less.

I just got our's. I am still digesting it and trying to figure out our next move. My son's score was 167. We have done 4 weeks of penn which helped mood and handwriting but then we hit a plateau. We then did two weeks of Augmentin (per D r. T.) and that didn't seem to help either. We are also waiting on test results for repeat strep titers and more immunological tests.

I buy their capsules which do not contain stevia (even though they say the problem was corrected). I used to open them and put into a smoothie but now my son will just swallow them (they are very small). I read that you should give it either between meals or at bedtime and not at the same time as magnesium, if you give that.

I'm not sure what the amounts are to supplement with but you could ask your dr to run some bloodwork to see if your son is deficient. We supplement with a higher dosage but only under the guidance of our dr. I think zinc is one you have to be careful with as too much can be harmful but then if your deficient, the normal guidelines won't be enough. As an FYI, we use Kirkman's Labs brand because they read pretty clean as opposed to some in the stores. Justine, You might be right. I was supp'ing Michael w/zinc awhile ago and it really helped w/his appetite...I didn't notice the sensitivity to light part but I'd guess he's zinc deficient....going to get some zinc. Thanks!

Just thought I would add our experience in regards to sensitivity to light. My son tested very low in his zinc levels and we are currently supplementing. We have been supplementing since November and he is still measuring low so we have recently raised the amount of zinc. We don't know the actual cause of low zinc but at least we know the the cause of the sun sensitivity. It has made a difference in his sensitivity although he still requires sunglasses while outside. Our neurologist told me to make sure he wears "polarized" sunglasses and not the cheap kid glasses because polarized blocks more light. I searched high and low for kid's polarized glasses that didn't cost an arm and a leg and ended up at LL Bean (nice because they will take them back if the break or get scratched!). As an aside, I have always needed sunglasses which I read is common for people with blue eyes. My son's eyes are brown so that rationale didn't work with him though.

Wow, that is really interesting. Thanks for sending.

Hahaha!

I have been thinking about doing this test for three months. My fear is that it doesn't give us the answers we're looking for but felt it was the logical next step. We also repeated the ASO, anti-DNaseb and did bloodwork for the anti-Pneumococcal antibodies and quantitative immunoglobins and streptozyme. The wait begins

Oh, how funny. You'll have to keep us posted.

Just sent my son's bloodwork to Dr. Cunningham. Keeping my fingers crossed that we will have some answers soon as to whether we are going down the right road.

I actually just heard back from Kathy and she said, any payment is fine - they are just happy to have the help!

I am planning to get the bloodwork for the Cunningham test today. Can anyone tell me if there is a preference on how to send payment - check or credit card? I emailed Kathy Alvarez but I want to get this done today and not sure if I will hear from her that quickly. Thank you.

I'm sure the veterans here will give you the information you're looking for as we are new to the PANDAS world but I was wondering what the test for kam 11 is. I thought that was tested within the Cunningham test?

I'm so happy to hear that the visit went well and that you have direction now for your son. Your perseverance has paid off

Thank you for some options. I'll check them out. Anything is better than straight fish oil!!

Have you seen any improvement? or did you just start? Our first dr, a naturopathic dr, suggested cod liver oil for my son but it was soooo nasty tasting I couldn't make my son take it when he gagged on it the first time. I remember taking it as a child - ick. My husband has the flavored one but it still tastes horrible. Does anyone have a good suggestion for a liquid gel one?

I'm curious if the consensus is that fish oil is a help to kids with non ts tics.

I did a little research and it doesn't seem like it. My son had some testing through Genova Labs which did some of the neurotransmitter testing (I didn't realize until I pulled out the testing). It does look like the place you gave the link for will file an insurance claim so that's helpful. I will ask my dr about going forward with it. Thank you for the info.

So it's not something that can be done by a mainstream lab?

I think if you search probiotics on the board you will see alot of talk about timing and amounts. We staggered our probiotics about gave about 2 hours after antibiotic (twice a day). We also use S. Boullardi which is good yeast which helps protect the stomach also. We did have issues with a different probiotic which gave my son diarrhea and vomiting. We changed types and haven't had a problem since.

How do you check neurotransmitters?

Somewhat on the lines of this subject, I am wondering how many people did the Cunningham test prior to being more aggressive in treatments, i.e. steriods and ivig. I apologize if I missed an older post about this already. I searched but didn't see much.