lfran

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 hearing loss. He is also on Augmentin, so I took him off the azith and the ibuprofen, and I'm waiting to see what the hearing test shows. (Hearing loss runs in my family, though, so it could be completely unrelated). Can anyone help us out on this? Thanks.

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 augmentin. Once he went on high dose augmentin he was a different child within 48 hours. I was told he was "aggressive", and "bad" at 14 months, and the adjectives just got worse as he got older. Your child is so fortunate that you are recognizing PANDAS now. My wish is for Parents of young children with PANDAS to one day have a book to follow - kind of "what to expect - the PANDAS toddler years"... to help sort things out! Keep notes on what you do. Maybe one day you will write the book!

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 the exact same thing in March of 2008, in the middle of his highest exacerbation ever. We took him to the ER who did an ultrasound and eventually found nothing wrong. Many months later, I thought of this. He was never vaccinated for MMR, but when we did an titre challenge to MMR as part of his immune workup, he showed a response to mumps. Then I read that many people can have asymptomatic mumps. So, that is possible. BUT...I just read this right now when I was searching for verification of what I just typed .. strep (and staph) can cause orchitis (swollen testicle). GRRRRR! Here's the link: http://www.webmd.com/sexual-conditions/inflammation-testicle-orchitis My son also covers his ears at loud noises. We should talk sometime. I hope your appt goes well today. Since the wait is so many hours, can your son stay with someone for the hours of waiting and just be brought to you when they are ready? That will probably save both of you a lot of stress. Wishing you all the best. You and your son deserve it.

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, etc. I remember a friend of mine had a child who would eat only yellow things. No one mentioned OCD and I guess that phase passed -- but it just goes to show how normal childhood and OCD can overlap.

He is, for a short time. It was prescribed by Dr. T, and others on this forum have said that they have done the same. He was doing so well, but last evening things went downhill and I'm trying to figure out why.

Does anyone know how close together I can give DS9 his two daily Augmentin doses? He is on 1000 mg (500 two times a day). Since it seems to "wear off" in terms of controlling his behavior, I'd like to give one in the am and one in the early afternoon and figure he's not going to get infected when he's sleeping in his bed at night (he's also on zithromax, so that should also cover him infection-wise). I'll ask the doctor, but just hoping for some personal responses. Thanks.

Are you using liquid or tablets? If it's the liquid, you could ask them to ship it to you unmixed and you could add the water yourself. Would that get rid of the red dye?