urination problem

[michele]

Thanks. I private mailed you. I was wondering if she is an Anthem Dr.

Maybe I could get her name and number and call her. I have never been able to get any of our Dr's to prescribe the azith. Good for you! I have tried with several and they all say no because of Mid western Ohio Valley resistance. What kind of Dr. specialty is she?

 

Michele

Hi, I'm new here (my sister has been around awhile: ColleenRN). This is my first post, but I wanted to let you know that my doctor in Ohio is prescribing longer term

Zithromax for my 8year old daughter. She was slow to get on board, but has been convinced by my daughter of the need for it - huge changes in her!

She is in Westlake, off the Clague Rd. exit. It takes us 35 minutes from Brunswick, so it shouldn't be too bad coming from North Canton.

Feel free to email me at justinsmama@hotmail.com if you want her name and number.

-DawnMCH

 

 

 

 

 

If you hit a wall finding someone, let me know and you can try our peds dr in Bingham Farms. We are at the 9 week mark and my son's tics don't seem to be fading. We are 12 days into our attempt at 250mg Azith daily. He is a little less irritable and sleeps better, but tics are still going. After reading Dr K's info, our dr is slowly moving towards IVIG if we don't see improvement. He made the comment that he would want to call Dr K if we go that route, so that leads me to believe he's willing to do it...Good luck!

[EAMom]

greeneyes,

 

re the Azith...tics were the last thing to go away when we started our dd on Azith 250mg/day last June...they took 6 weeks to go away. Her tics were mild and were the least of our worries so this wasn't a big problem. The important stuff, mood, OCD, anorexia nervosa, were all drastically down/or gone by 2 weeks.

 

Despite being on 250mg/Azith, mild PANDAS symptoms started up again in Oct (strep exposure/sister testing positive). Right now she's ticking a fair amount...the most she has since last spring. Her tics are mild though (verbal, throat sound). I think her sister is positive once again so I'm taking her in for a strep test tomorrow. Ughh.

[pmoreno]

My son had IVIG 10.5 weeks ago. Things had progressively gotten better with the tics. But now it seems that we are battling with the need to urinate. Prior to IVIG he had this for one night about 4 times. It would be stopped by a warm bath. He never had it during the day. Recently it seems to be nightly and some day time. It is not stopped by bath now. My question is, for PANDAS moms that have experienced this, what do you do? He is up til late hours, hates it and is now having trouble with it during school. What is this? A tic? Do you think I should have him checked for strep? He says he is not sick, but this has just recently come on and worsened and I dont know what to do about it. Any ideas? Do any of your children do this?

 

 

It seems that more boys have problems with this than girls (in the PANDAS population). The fact that some behaviors get better and some get worse after IVIG makes me think that it has a lot to do with receptor sites. The IVIG mixes things up a little and as the IVIG is competing for receptor sites along with the original antibodies there will definitely be some change. For us it meant an immediate cessation of tics. But then later a few other odd behaviors crept in that hadn't been there before.

 

If you've already ruled out all possible physical causes (like diabetes or urinary tract infections), then it's most likely a compulsion that will be there for a while. Sometimes abx will help (so if he's not on them yet, try them). But as others have posted here, even with the abx, you still get behaviors breaking through because of exposure to antigens. It may be a matter of waiting it out for this compulsion to subside. My daughter's compulsions are different, but they have subsided after a couple of months.

[bmom]

Update on this: Dr. K suggested that he get tested for strep although he was on Augmentin. He said up it to full dose. He tested positive on the swab as did I, his sister, and dad! Ugh! No symptoms for any of us. He did full dose zith and some full dose Augmentin and things are calming down although he still has short periods of it.

[amy s]

Update on this: Dr. K suggested that he get tested for strep although he was on Augmentin. He said up it to full dose. He tested positive on the swab as did I, his sister, and dad! Ugh! No symptoms for any of us. He did full dose zith and some full dose Augmentin and things are calming down although he still has short periods of it.

 

 

wow. this is amazing. Thanks for the update.

[EAMom]

Update on this: Dr. K suggested that he get tested for strep although he was on Augmentin. He said up it to full dose. He tested positive on the swab as did I, his sister, and dad! Ugh! No symptoms for any of us. He did full dose zith and some full dose Augmentin and things are calming down although he still has short periods of it.

 

Wow! that is amazing your son tested positive even on the Augmentin.

I wonder if you are a family of strep carriers? Has the family been tested before? What rx is everybody else on? Make sure to recheck everybody after the abs.