lfran

I re-read your post, and I read your post wrong. Sorry. In case anyone wants it, here is the link to the Igenex tests as a PDF. It's part of what they send you in te mail. http://igenex.com/files/PATIENT_TEST_REQUEST_FORM.pdf

We just did the Igenex test Monday. I chose the basic one because the difference between the basic and the 4050 is the PCR analysis, which you can't do on antibiotics anyway (have to be off abx for 10 days, they said when I called but which they DON'T say on their literature). So, since DS9 is on abx and isn't coming off them anytime soon, I saved the money and did the one without the PCR -- which is the one available for NY anyway, if I'm understanding it correctly. And thank you to whoever posted recently about the abx and lyme testing. Otherwise, I would never have known to ask.

My younger son (now 6) had all but one of his DTAPs and I didn't want to give the last one. I asked for titres to check his immunity and he was fine. So you may be fine, also. Good luck.

In California, you *can* pick and choose, at least in the recent past. You sign an affidavit saying that you have a philosophical exemption to some or all vaccines. In my experience, the schools won't ever offer it to you and won't even tell you about it, but when you ask for it, they hand the form right over (at least, they did at both our private daycare/preschool and the public elementary school).

Thank you. A test with an audiologist is set for next Tuesday. But....what happens if he *does* have hearing loss? What do they do? If it is caused by the zithromax, will it come back on its own? And..I assume it is safe to stay on the Augmentin, but I am feeling very cautious right now. Did your son's doctor tell you what to do if...? Thanks.

Someone recently posted that azithromycin (esp. combined with an anti-inflammatory) can cause hearing loss. Can you (or anyone) tell me the steps you took to determine this and what, if any treatment or follow-up you pursued. We noticed DS9 saying "What" an awful lot for one ear during a recent phone conversation. My ENT examined him and said there was no fluid buildup or other obstruction and sent him for a hearing test (happening next week). The ENT also did not think that azithromycin causes hearing loss, although some quick googling did bring up some case reports of azith-related he

Us too. Usually a flare right around a lost tooth. Also, biggest exacerbation ever was a few days after a tooth extraction from the dentist with no prophylactic abx (didn't know he needed them. Now I ask for abx for every dental visit).

Us too. Usually a flare right around a lost tooth. Also, biggest exacerbation ever was a few days after a tooth extraction from the dentist with no prophylactic abx (didn't know he needed them. Now I ask for abx for every dental visit).

Anyone know an LLD in Los Angeles? I emailed ilads.org, and there are none very close (within an hour, which is okay, but I would have thought in a city the size of LA there would be more. Of course, there are probably not a lot of ticks in an urban desert!)

Do you know what the kg/mg is to be considered "high dose" Augmentin? Right now, DS9 is on 1000 mg Augmentin and he weighs 78 lbs. If I did the math right, that's 28.5 mg/kg. I want to try high-dose Augmentin, but don't know exactly what that is!!! Thanks! You were told that a 14 MONTH old was a liar and was over reacting? How does a toddler lie and overreact? UGH!! My son had PANDA as a toddler. He had chronic sinusitis and his behavior was unmanageable (biting, head butting, climbing on things, climbing out of crib, couldn't sleep at night) whenever he was off high-dose

Greetings. So sorry you are here, but as others said, it is a good place to be if you need it. It sounds like you are paying cash for the IVIG. If so, have you had your daughter tested for immune deficiencies? If she is immune deficient, then I believe that insurance will pay for all or most of the IVIGs that are needed. Others can speak to that more.

That is soooo wonderful. That is a past vacation spot for us...but I chickened out (as an adult) when I got to the top of the line for the parasailing. Congrats to your daughter!

I am so sorry for all your stress and unhappiness. How is your child feeling? My DS9 has primarily tics, but he isn't particularly bothered by them -- just me! I know that mourning is important, but what your husband says is also valid. We have been dealing with this for many years, but in kind of an intense mode for 2 and a half years, and I keep reminding myself that it isn't life-threatening and doesn't cause him pain, and that we are fighting for him as best we can and that someday we will beat this. That said, I am extremely curious about the testicle issue because my DS9 had

We've tried lots over the years. Nothing makes much difference. He has cam Kinase of 139 and anti Dopamine 2 levels of 32000 -- so I think he's definitely in the PANDAS camp. Just looking for other things that might also help. Thanks!

Oops. I didn't know about the antibiotics. Do you have to be off of them for the other tests also?

We are in Southern California, but frequently vacation (especially in the summer) in Arkansas and Philadelphia/NJ and Florida (scattered grandparents). I have been bitten by ticks in Little Rock, but have not gotten infected, as far as I know. My DS9 PANDAS is primarily tics. It has been going on for 5 years. Do you think Lyme testing makes sense? Thanks

We are in Southern California, but vacation each summer in Arkansas and Philadelphia/NJ and Florida (scattered grandparents). I have been bitten by ticks in Little Rock, but have not gotten infected, as far as I know. My DS9 is primarily tics. It has been going on for 5 years. Do you think Lyme testing makes sense? Thanks

You might want to look into Habit Reversal Therapy. The Wall Street Journal just did an article on it yesterday -- here's the link. http://online.wsj.com/article/SB10001424052748704913304575371502395023416.html

I just called them for my DS9 and they recommended their panel #6050 as the place to start. Not cheap -- in the $400s -- but that's their recommendation.

Here is an anti-anxiety medicine you may not have thought of. I was put on atenolol (propanolol) for an irregular heartbeat, and noticed almost immediately that my high level of anxiety went waaay down. I asked the cardiologist about this, and he said that it is known to have an anti-anxiety effect in some people. (I think it is an off-label usage. I did some research about this and found it confirmed). It is a beta-blocker, and considered pretty safe. It might be worth asking about.

I think I have noted some light-related issues. Too tired to go into now, but will tomorrow or soon.

That is wonderful. I am so happy for you!

Also, if you don't want to use the word PANDAS, you can say "motor tics, like in Tourettes. Most people have heard of Tourettes, and really, the camp director doesn't need to know all the details -- just needs to do what you want.

Hi all. Just asking this again, in a different way. DS9 (76 lbs) is on 1000 mg Augmentin (500 mg twice a day). Does anyone know, does this mean it has to be every 12 hours or can dose #2 be closer in time to dose #1. I think it "wears off" after about 8 hours and would like to know if anyone has been told how often to give it. Thanks.

You know, I'm not too familiar with the OCD info, as DS9's PANDAS is mostly tics (although I wonder where motor tics end and motor compulsions begin for some of these kids. How do we tell the difference?) However, given that a lot of leeway is given to so many kids as "terrible twos" or "just a stage", I would think that a lot of childhood OCD could start pretty early and just not be recognized. I have read so many stories of parents getting an autism diagnosis for their child and then in retrospect realizing that the lining up of toys and things like that weren't just personal quirks, e