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What next?


kleek3

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Good Morning All,

 

My DS4 started with a Strep infection in April 2012. Tics, behavior, frequent urination, dilated pupils etc. We saw Dr. L at Yale and was dx with Tourettes. We chose to seek a second opinion with Dr.T late Sept and was dx PANS because Myco P seemed to be the issue in the labs work. He started with prophylactic Penicillin in June 2x's/daily. Some, nearly all of the tics went away - behaviors continued to be an issue. Dr. T switched him to Zith with the Myco P detection and he gave us a script for 3 10 day refills. We just refilled the 3rd Zith script because we are afraid if you will to take him off meds. The twist is this, his tics are back. They seem to be some of the old shoulder rolling and facial grimacing and now, licking, sucking shirts, blankets, and jackets....sometimes licking fingers and then running them on me to feel the wet? Behavior, aggression, clinginess, easily frustrated continue to be a problem.

 

With the storm in the North East, I KNOW how Dr. T and the NY area have been effected as i am from NY. I have tried probably 6 times to email and called the office Thursday to find out if they are in fact receiving my emails. I emailed yet again this am to try to determine WHAT the next step is. If the Zith is NOT working, what do we do? I'm more than anxious to get in touch with Dr.T and am looking for some suggestions what to ask or suggest to Dr. T in regard to a possible med change? Thoughts PLEASE!!! Thank you so so very much in advance!

 

KK

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It could be from exposure to someone who is sick or someone who has strep. Is he in school/daycare? I know I am in a different part of the country, but a lot of stuff is circulating around our schools right now. I know you said his issue is myco, but it could not hurt to get him strep tested as well. I would at least finish out all of the zith you have and keep trying to get in touch with dr.t.

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Missmom,

 

My husband and I are both Strep carriers. He goes to VPK 5 days so he could be getting something from the other school kids. When you say strep tested, do you mean a throat swab? I emailed and will Dr. T call later this afternoon. Let yas know how I make out...

 

KK

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If you are dealing with Myco p. it would not be unusual for the Zith to stop working after a period of time. It helped my daughter slightly for maybe a week or so but that was it. We then switched her to Biaxin and then we started to see much better results. Myco p is a stealth pathogen and can not be treated for only a few weeks. It takes many months to eradicate Myco p. Sometimes even a year or more depending on how long the patient has had it. There is a lot of great reading if you just google it. Hope you see better results soon.

 

Dedee

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Thank you Dedee! I will Google it! I have to be honest, sometimes the information on the Internet can be SO overwhelming! The Zith didn't ever work looking back. Within 4-5 days the tics were coming back and his behavior was tough to say the least. He goes from fine to high speed to aggressive and irritating to clingy to baby talk to bouncing off the walls to antagonizing...some behaviors quite normal on a smaller scale for a 4 year old. However watching him is like doing it with the tape stuck on fast forward. Tough on all:( We started in April12, first labs drawn OCT12 with the Myco p discovery.

 

KK

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Missmom,

 

My husband and I are both Strep carriers. He goes to VPK 5 days so he could be getting something from the other school kids. When you say strep tested, do you mean a throat swab? I emailed and will Dr. T call later this afternoon. Let yas know how I make out...

 

KK

Be sure to also tell dr.t ( if you haven't already). That you and hubby are both strep carriers. You should both be treated just to eliminate any possibility beyond myco p that your son is also reacting to you both. I would want to eliminate any possible triggers and that to me sounds like an easy one to start with. Also I second the suggestion of biaxin, although that can be rough on the stomach so be sure to keep the probiotics coming.

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Hello All,

 

I was able to reach Dr. T tonight and what we have decided to do is this....

 

~We will continue the low dose Zith to try to cover the Myco p

 

~Starting him on an additional dose of Augmentin tomorrow 2xs daily to see if this covers the Strep

 

Because we had the Myco p in all 4 of our labs, he aimed at it with the Zith. Now that his tics almost immediately returned after the stop of Penicillin 21 days ago, he feels that there may be a Strep that we are not seeing on the labs. My husband and I are both Strep Positive. He also said that bc we are Strep Positive does not mean that we are infectious. I asked how soon we should see a difference with the Augmentin and he said it should be fairly soon. I will keep my fingers crossed, hope and pray for this combo to work. Lastly, he said that a Steroid burst is possible but he is trying this option out first. Amy, you truly are a lifesaver. Sometimes when I am at my wits end with this PANDAS journey....you give me hope again. Thank you for your endless supply of knowledge and willingness to share.:) I could not fight this fight without having this site to ease my fears. I'm not the best poster, but I sure do read tons of info right here! on a daily basis. You ladies are my meds:))) Hugs to you all!

 

KK

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kleek -- i am happy you were able to reach dr t and i am not posting to say in opposition to his advice, OF COURSE.

 

just wanted to mention that for my ds, i absolutely hate zith and cannot imagine any situation i will ever have him take it. it was the first abx he was prescribed and he had a terrible time with it. some behaviors that had left returned with a vengenance. it was rxed by our useless ped at the time and for 5 days. i was so very happy when that 5 days was over. he then returned to his level of before the zith. about a month or so later, when we switched peds, he was put on kelfex and had 100% remission in about 3 days. at the time,i thought it was just that different abxs work differently for different kids. later, we discovered lyme. i do believe zith can cause a herx reaction for some lyme patients. we will never know what the exact situation was. just wanted to mention b/c i think you said you think the zith has never had a positive effect for your son. good luck!!

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Kristin, you give me too much credit. I owe everything I've learned on our PANDAS journey to these mother - (and sometimes father ) warriors on this forum. I credit my daughters slow, but steady recovery over 4 years to everything I gained right here....from doc. Referrals and med. recommendations, to support for myself when sometimes I thought I'd loose my mind. You are doing everything you can for Brennan right now- it's trial and error. Different things work for different kids; as evidenced by all the opinions on here. Sometimes you'll feel like you've tried them all and reach out here and find something new to try. Let your trip refresh you and you'll come home more ready than before to fight this battle.

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kleek -- i am happy you were able to reach dr t and i am not posting to say in opposition to his advice, OF COURSE.

 

just wanted to mention that for my ds, i absolutely hate zith and cannot imagine any situation i will ever have him take it. it was the first abx he was prescribed and he had a terrible time with it. some behaviors that had left returned with a vengenance. it was rxed by our useless ped at the time and for 5 days. i was so very happy when that 5 days was over. he then returned to his level of before the zith. about a month or so later, when we switched peds, he was put on kelfex and had 100% remission in about 3 days. at the time,i thought it was just that different abxs work differently for different kids. later, we discovered lyme. i do believe zith can cause a herx reaction for some lyme patients. we will never know what the exact situation was. just wanted to mention b/c i think you said you think the zith has never had a positive effect for your son. good luck!!

 

 

My son is allergic to penicillin, augmentin, and keflex. Zithromax seems to be the only thing he can take. Do you know of anything else that has worked?

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He is not allergic to Penicillins. I am out of town and just FaceTimed him. He is not seeming to be getting better in the ticing department. Also, he has a URI. This could be bring out the tics too. We shall see when I return home. UH! I loathe the fact that I am not there to help him right now. There is nothing I can do from half the world away. Lesson learned, I thought I could go to work and he would hold his own. Either way, its nearly impossible to shelter him from life. I get that. But it seems like EVERY time I have to travel....he gets sick. Home in 2 sleeps:)

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