Azithromycin or coincidence?

[Haileymadison]

Hey all, My soon to be 6 year old daughter has always been somewhat of a drama queen and at times I would even call her a spoiled brat. This past August, she presented with frequent urination and separation anxiety (fear of being kidnapped). In September, she developed an extreme fear of choking and dying. It was then, that I found this website and had her cultured for strep. She cultured positive and was placed on 10 days of Suprax. Within a couple of days, symptoms were 80% resolved. She was placed on another 10 days of Augmentin. At the end of this cycle of antibiotics, symptoms were 90% resolved. The only remaining symptoms would be some separation anxiety ( afraid to go upstairs to her bedroom and toy room alone).

 

Since this time, she was given MMR, Polio and Chicken Pox vaccines with no new symptoms of Pandas. Last month, she developed a stomach virus and am happy to report, she had no increase in symptoms.

 

2 weeks ago, she started running a fever (102). I took her to the doctor the following Monday morning and strep test was negative and was told it was viral and to let it run its course. Within a 3 or 4 days, she was getting worse. I noticed her breath was horrible and and her eyes were extremely dilated. She was not showing any odd behavior, as a matter a fact, she was extremely sweet and loving. I took her back to her doctor and they did a finger stick, which did show she was fighting some kind of infection. Her doctor thought it was a sinus infection and placed her on 200 mg. of Azithromycin for 5 days.

 

This is where it gets interesting. After only one dose of the Azithromycin, her bad breath is gone. She says "Mommy, Can I eat my breakfast upstairs in my toy room. I am not afraid to go upstairs by myself anymore." I was floored. I took her cereal to her toy room and she played upstairs by herself for hours. I had to check on her several times just to make sure she was OK. This is a kid that has not walked upstairs alone for 5 months. Not only has her last bit of Pandas symptoms disappeared, I kid you not, she is absolutely the most loving and sweetest kid that I have ever seen. She was never this sweet, pre pandas. I keep pinching myself to see if this is just a dream.

 

What are the odds that one course of Azithromycin would have that effect on my daughter? Is this just a coincidence, or is Azithromycin a miracle drug?

 

I forgot to mention that the dilated pupils resolved after a couple of days on antibiotics.

Edited December 23, 2010 by Haileymadison

[Fixit]

Hey all, My soon to be 6 year old daughter has always been somewhat of a drama queen and at times I would even call her a spoiled brat. This past August, she presented with frequent urination and separation anxiety (fear of being kidnapped). In September, she developed an extreme fear of choking and dying. It was then, that I found this website and had her cultured for strep. She cultured positive and was placed on 10 days of Suprax. Within a couple of days, symptoms were 80% resolved. She was placed on another 10 days of Augmentin. At the end of this cycle of antibiotics, symptoms were 90% resolved. The only remaining symptoms would be some separation anxiety ( afraid to go upstairs to her bedroom and toy room alone).

 

Since this time, she was given MMR, Polio and Chicken Pox vaccines with no new symptoms of Pandas. Last month, she developed a stomach virus and am happy to report, she had no increase in symptoms.

 

2 weeks ago, she started running a fever (102). I took her to the doctor the following Monday morning and strep test was negative and was told it was viral and to let it run its course. Within a 3 or 4 days, she was getting worse. I noticed her breath was horrible and and her eyes were extremely dilated. She was not showing any odd behavior, as a matter a fact, she was extremely sweet and loving. I took her back to her doctor and they did a finger stick, which did show she was fighting some kind of infection. Her doctor thought it was a sinus infection and placed her on 200 mg. of Azithromycin for 5 days.

 

This is where it gets interesting. After only one dose of the Azithromycin, her bad breath is gone. She says "Mommy, Can I eat my breakfast upstairs in my toy room. I am not afraid to go upstairs by myself anymore." I was floored. I took her cereal to her toy room and she played upstairs by herself for hours. I had to check on her several times just to make sure she was OK. This is a kid that has not walked upstairs alone for 5 months. Not only has her last bit of Pandas symptoms disappeared, I kid you not, she is absolutely the most loving and sweetest kid that I have ever seen. She was never this sweet, pre pandas. I keep pinching myself to see if this is just a dream.

 

What are the odds that one course of Azithromycin would have that effect on my daughter? Is this just a coincidence, or is Azithromycin a miracle drug?

 

I forgot to mention that the dilated pupils resolved after a couple of days on antibiotics.

 

i think it was the rotation of the 3 abx...or that the other 2 weren't long enough...she was still getting a little better on her own ...and the then you hit it with another abx and wha-la

[peglem]

We've had that kind of quick response w/ zithromagic! You say she was a drama queen even before PANDAS. I wonder if it was just the early stages- "PANDAS LITE".

[mom love]

The right antibiotic is like a miracle with all this. I would definitely recommend you getting to a pandas doc asap. Perhaps contact Dr. Trifilleti in NJ. He is a very good pandas doctor who does phone consults and can consult with your doc. IMHO, your daughter should have more zithromax, longer that is. I think that is a standard among most pandas docs. It takes longer for pandas kids to heal. zith is also anti-inflammatory.

 

p.s. the same exact thing happened to my daughter when she was 4, when she was finally given zithromax for a stubborn strep infection. Only 5 days and she had total remission after that for a while. It did unfortunately return. She was not on prophylactic antibiotics though. IMHO, you should seriously consider prophy abx, I'm sure your pandas doctor will recommend it. For zith, it is only 2 days a week. I have to say, I wish I had known then what I know now about the importance of it. Call asap for a pandas doc.

[nicklemama]

Interesting. Maybe it is the zith. My DS was on biaxin for 60 days and he is about 90% back to his former self. We started prophylactic zith 250mg, 2x weekly, a week and a half ago and while he has always been very affectionate and loving, he is incredibly loving since zith. I thought he was just feeling better and trying to make up for some pretty awful things he said and did during the worst of his PANDAS.

[Haileymadison]

Thanks for the replies all!!! I know that I need to find a Panda's doc. ASAP. I was encouraged that these other illness's were not causing any new exacerbations and I guess hoping that this would all just go away!!!

 

Peg, you may be on to something, maybe she was pre-pandas.

 

Mom Love, You said that your daughter had total remission at 4. At what age did she have her second exacerbation and was it caused by another strep infection?

[mom love]

Her next exacerbation was when she was 5. She had a sore throat, negative for strep but not sent to a regular lab to grow out. We did go in for a second swab that was also neg. We didn't know any better then to demand a lab culture. She presented 10 days with extreme separation anxiety that lasted for 6 months and affected every part of her life. Then remission again. She has had some strep with symptoms and she was treated with a normal course and did fine each time, except on amoxicillan which failed for her and she had some ocd while on it. Then it all went away on a new ab. She is now 8 with a new very bad motor tic that appeared suddenly and we did the whole blood work up with a pandas doc and it found her strep titers had risen only slightly, but did rise, and she was positive for mycoplasma pneumonia with no symptoms except for the tic. If we had done prophy zith she may not have gotten so bad, but we will really never know. So, our case is now pitands and she is on heavy abx with initial improvement being 90% with zith. Zith is good for myco p as well as some streps. Her initial trigger could have even been myyco p, we will never know.

 

I pray with all my heart that your case is mild with lasting remission. I highly recommend you get a pandas doc you are comfortable with, do all the bloodwork, and go from there. In the meantime, you could research OLE, and give her some children's motrin (dye free) if you see any symptoms return.

 

I don't know where you live, but here are a few pandas docs if you don't already know of them:

 

Dr. Trifilleti in NJ -

Dr. Bouboulis in CT -

Dr. Latimer in MD - long wait

There is another in TX

 

Search the doctors thread and perhaps post where you live and others can add local docs perhaps.

[Cristo]

The right antibiotic is like a miracle with all this. I would definitely recommend you getting to a pandas doc asap. Perhaps contact Dr. Trifilleti in NJ. He is a very good pandas doctor who does phone consults and can consult with your doc. IMHO, your daughter should have more zithromax, longer that is. I think that is a standard among most pandas docs. It takes longer for pandas kids to heal. zith is also anti-inflammatory.

 

p.s. the same exact thing happened to my daughter when she was 4, when she was finally given zithromax for a stubborn strep infection. Only 5 days and she had total remission after that for a while. It did unfortunately return. She was not on prophylactic antibiotics though. IMHO, you should seriously consider prophy abx, I'm sure your pandas doctor will recommend it. For zith, it is only 2 days a week. I have to say, I wish I had known then what I know now about the importance of it. Call asap for a pandas doc.

 

You said that you wish you had known then what you know now. A pandas doctor would do the prophelactic dose you said. Is that what you mean? Is your daughter on a prophelactic dose now? Is she better now?

 

I try to get my son on azithromycin whenever he starts a fever, and tells me that he feels all those things coming on. It seems to stop it in its tracks. Last year, I was able to put him on 12 mg/kg for 15 days, and he really really improved. All of his coughs, chest pains, and chronic sinus issues went away. His behaviour improved. Looking for advise on what Dr T would likely do that you believe is good.

[Cristo]

Her next exacerbation was when she was 5. She had a sore throat, negative for strep but not sent to a regular lab to grow out. We did go in for a second swab that was also neg. We didn't know any better then to demand a lab culture. She presented 10 days with extreme separation anxiety that lasted for 6 months and affected every part of her life. Then remission again. She has had some strep with symptoms and she was treated with a normal course and did fine each time, except on amoxicillan which failed for her and she had some ocd while on it. Then it all went away on a new ab. She is now 8 with a new very bad motor tic that appeared suddenly and we did the whole blood work up with a pandas doc and it found her strep titers had risen only slightly, but did rise, and she was positive for mycoplasma pneumonia with no symptoms except for the tic. If we had done prophy zith she may not have gotten so bad, but we will really never know. So, our case is now pitands and she is on heavy abx with initial improvement being 90% with zith. Zith is good for myco p as well as some streps. Her initial trigger could have even been myyco p, we will never know.

 

I pray with all my heart that your case is mild with lasting remission. I highly recommend you get a pandas doc you are comfortable with, do all the bloodwork, and go from there. In the meantime, you could research OLE, and give her some children's motrin (dye free) if you see any symptoms return.

 

I don't know where you live, but here are a few pandas docs if you don't already know of them:

 

Dr. Trifilleti in NJ -

Dr. Bouboulis in CT -

Dr. Latimer in MD - long wait

There is another in TX

 

Search the doctors thread and perhaps post where you live and others can add local docs perhaps.

 

How long has your daughter been on azithromycin for? Is she on the highest dose possible, which is 12 mg per kg of body weight?

[mom love]

Cristo, she was on the highest strep dose at onset, and has been for 4 months. We recently have lowered to 250mg per day. She is also on a second ab for a possible strep exposure exacerbation but so far not getting better yet.