justinekno

Good idea. I don't think I've read it since we've had our Cunningham test results. Thanks.

On a similiar note, I have learned to ask the dr ordering the test (if different from our reg dr) to have the lab cc our regular dr because I know our regular dr will always send me the copies of the labwork when I ask.

I saw on the PANDAS Resource Network website that there is a support group in Southern CT. Is anyone on this board involved with it?

I think if you search "warts" on this board, there was a thread about the other uses for Oil of Oregano, i.e. I believe it can be used as an antibiotic and for stomach issues.

I like this. Thank you for posting.

These are good ideas. I think for now we will stay status quo and keep things like they are but maybe try to shop around for better prices. We eat a very balanced organic diet and we follow the Feingold Diet as far as no artificials, preservatives and we don't do much sugar. I think the food costs are what's really killing me An immunologist was actually the one to say the supplements don't make much of a difference. I was somewhat suprised by the comment.

Which brand do you use?

My son's regular dr is the one who brought up PANDAS to us but admitted that the Cam K. test results info was really over his head so we are working with a PANDAS dr. in conjunction with him. Our dr is very interested in PANDAS and feels he has several patients who may have it so he is looking to me to forward the names of dr's we see who we feel were a help to us.

Interesting page. We have Aetna too. Perhaps it should be printed before they change their definition!

I don't have alot of information to give but will say that my son had stool testing done prior to being diagnosed with PANDAS. He was never really on many antibiotics but did show some bad bacteria in the gut (alpha haemolytic streptococcus, stretococcus agalactiae gp b, agamma hemo strep and enterobacter cloacae. Our dr gave my son Septra and then Flagyl to treat the enterobacter as the level was pretty high. He feels this may help my son avoid the colitis that runs in the family on my husband's side. He didn't seem too concerned about the other bacteria although now I am wondering if the streps can have anything to do with PANDAS symptoms.... The reason for the stool testing was constipation. The dr also put him on probiotics and s. boulardii. He hasn't had any bowel issues since. What did your dr say about the results? I know there was a thread a few weeks ago about the Klebsiella as I posted on there about my dh's experience with it (was on long term antibiotics as a child and has Colitis - dr treated with Bactrim and Flagyl along with some herbal remedies). Maybe if you search klebsiella it will come up?

I'm glad you took him to the dr. I'm sorry I can't answer your questions - we are still trying to figure out what our rash is! Last night after one dose of Biaxin my son shows me a small red pimple like bump on his arm next to the faint rash. I was thinking of stopping the Biaxin for a few days to see if the whole rash went away but then this morning the pimple like bump was gone. I am continuing the Biaxin (we seem to be seeing improvement w/ PANDAS symptoms) and see how the rash is on Monday. I'll call the dr if it's still there. I'm interested to hear how your sons' strep tests turns out.

delete.

My ds(20) has always had low blood pressure (which I'm told by the dr is normal for kids) and passes out very easily when dehydrated or anxious (my husband and I laugh that he will never witness his kids being born!). The dr told us to make sure he gets plenty of fluids days before he will be either in a sports game, in a stressful situation or out in the sun. He said waiting until the day of the "event" won't help as much. So when he's going to have blood drawn, he makes sure he is fully hydrated and that he lays down right away afterwards (in the lab room). He had to have an MRI (where they insert dye) done last summer for a shoulder injury and forgot to tell the technician about his low blood pressure and he fainted immediately after getting up. The nurse said that stress and/or giving blood can lower your blood pressure drastically. After we left, we went straight to the store for Gatorade. Some day he will learn

My son has been taking alot of supplements as suggested by our integrative dr. Another dr told me that supplements are a waste of money and won't really help with PANDAS. My husband has been trying to get me to trim the list a bit (we both agree that probiotics and good yeast are important) but I'm not as convinced as he is that we should cut back. My son eats well and will try any new food so he probably does get alot of nutrients through food. We've been on these supplements since last November. To be honest, I don't really see improvement while taking the vitamins (although he hasn't been sick in over a year but then again, we homeschool) but I am afraid to rock the boat right now. Does anyone feel that supplements really help with your child's PANDAS symptoms?

I love it! I'm glad to hear your son is feeling better.

I agree. I would run it by your dr. Just to play it safe.

Aren't strep rashes usually red though? Our's is more of a raised bump that you can feel more than you can see (although it is visibile). I asked our pharmacist today what the timeframe is if you're going to be allergic to an antibiotic and he said everyone is different. He said for some people it's the next day, for some it can be after being on for months. Nice, huh? I was hoping for the "magic" time where you can breathe a sigh of relief but I guess not. He said to just watch for improvement on the antibiotic and that will tell you also if the body is handling it okay.

My ds got a rash on his arms, face and stomach (light raised bumps, not itchy) the day after he started Zithromax. I thought maybe it was a heat rash at first. Then we started thinking we could be dealing with herxing (we are testing for Lyme). Our dr said it didn't look like an allergic reaction but after two weeks we have decided to switch antibiotics (antibiotic was not doing much for PANDAS symptoms anyway). The rash on the stomach went away but the arms and face still have the bumps. It will be interesting to see if it clears up now that we have switched antibiotics. We'll also know if it was herxing when we get our Lyme results. So now we play the waiting game.

Our dr (immunologist) is running another immune panel to see if he can find one more immunoglobulin deficiency so that our ins will cover IVIG. Not sure if we're going down that road yet but I guess we have to explore all options. I was actually suprised to see that there was even one deficiency bc our other dr interpreted the results saying his immune system was strong.

Is there any significance to an immunoglobulin IgE deficiency?

I ended up going to Clinical Lab Partners too! I asked the lab and was told that they will ship it out according to the order so hopefully it will go to the right place. I wish I had known about this before I did my first WB through Labcorp. Hopefully my ins will pay for this second one too. I'm glad your husband is getting the right treatment - Lyme can be so tricky.

We saw Dr. B. yesterday and he gave me a slip for my son to have another Lyme Western Blot done but this time through Igenex Lab. He said he has never heard of insurance not paying for it and that I just need to ask the drawing station to ship it to Igenex (he wrote those directions directly on the lab slip). Has anyone done this and had success?

Kim, First I have to say that I love your explanation here. It is a nice, basic, easy to understand breakdown of what happens. Thanks! As far as your question about low ASO, but elevated DNASEB, Dr. T. told us (my son has low ASO, but elevated DNASEB) that this likely suggests a non-pharyngeal (rectal, skin perhaps) source. My son gets many rashes (and gut issues) so we are looking at those being the source.

We don't get it either. Bummer. Their site does say they offer free podcasts but it looks like that is after the season is over. Does anyone know if that's the case? I would love to see it before next year!

I get that from my older son all the time. He tells me to stop keeping my son in a bubble. That's why I want him to watch the show because it's easier said than done (and not always realistic in my opinion)!