New to this Forum, help appreciated

[abbe]

Hi all,

 

I have been on this journey at on the "tic" discussion board for three years . My son broke out in tics suddenly at his Halloween class party in 1st grade age 7. Prior to this he did have an eye roll but I never knew it was a tic. After finding this board I did everything for my son. He has no dairy, gluten, supplements, cleared mold, yeast , you name it , we did it. My son never had strep, (his brother has had it) and had always been healthy not sick. I never did the blood work for strep or mycoplasma. After the outbreak in Leroy and my so getting sick this past week it hit me that I had to check for strep and myco. We have managed his tics with sups and 15mg topamax. I have an apt with a tmj dentist since his bite is off also. I am always searching. His Dr. who is open minded to "all of this" Dr. Chung saw him last night and said he was picking strep up in him. He muscle tested him. We drew blood last night. I am a bit overwhelmed mentally thinking if this is it why I didn't insist earlier. He put him on Amoxiciiian. I need to know what is the antibiotic that most people are using for strep? for Mycoplasma? Also you test everyone n the house? I know my other son has had strep and had small tics but nothing to be crazy concerned about. My other son (I have 3) went through ocd for one year in high school but "cured" himself 100% with no medical intervention. It seemed to be more about his nerves....

 

 

Thanks for your advice/help.

 

 

Also how do I handle that my son's best friend gets strep every other month it seems??? Tell him they can't play together?? I already don't let him eat half the foods he is allergic to, he takes sups etc. etc I don't want his life to turn upside down

 

 

abbe

[Kayanne]

Most of my family had several strep infections in 2009. My PANDAS daughter's strep was cleared with an adult dose of 10 days of Clindamycin. My other children were cleared by Duricef (a cephalasporin) combined with Rifampin and Amox (penicillin) combined with Rifampin. I was cleared with 2 z packs (azith).

 

I think a lot on the forum have also had success with Augmentin.

 

Here is some good information to know:

 

http://www.pediatricnews.com/views/id-consult/blog/amoxicillin-failure-in-strep-throat/bedfe23ae7.html

 

http://www.urmc.rochester.edu/news/story/index.cfm?id=981

 

Good Luck

[MomWithOCDSon]

Hi Abbe --

 

We're one of the families who did well with Augmentin; our issue, however, was strep and only strep, no myco p.

 

I think we're all constantly trying to balance "quality of life issues" when it comes to our kids, so I can completely empathize with your predicament and your son's best friend; my DS has a friend who's similarly "always sick," so, even on abx and not actively "catching" the strep that goes around, my DS would still flare from exposure in the company of his BF. Like you, I didn't want to turn his world upside down, and let's face it: our kids can't live in a bubble. The "exposure flairs" have improved over time with respect to their length and intensity (i.e., gotten shorter and less impactful), and I also figure that if it weren't his BF who set him off, it would be some other kid in the class, walking around with some microbe or virus they weren't even aware of. So, when exposure happens, we just circle the wagons and dig in for a little extra TLC, an extra dose or two of ibuprofen and supplements, and ride it out. Now, for a kid for whom exposure wreaks greater havoc, I suppose you'd have to go back to the balancing act and decide what you can weather, and what you need to avoid.

 

I find it a bit telling, also, that your high-school-age son had OCD one year and "cured himself." OCD is pretty tenacious and self-cure without any therapy or counseling, or in the case of PANS/PANDAS without medical intervention, must be quite rare. It makes me entertain the possiblity that his OCD was infection-based, also, but that his more mature immune system helped him fight the underlying microbe off more effectively than younger kids generally can.

 

All the best to you!

[WorriedDADNMOM]

Hi Abbe-----our dd's have both been on amoxicillin. 1 time for impetigo and I do not believe it eradicated the impetigo. She came down a year later with an asymptomatic strep infection leading to 1st severe tic and amoxicillin did nothing for it. We changed after 10 days amoxicillin and 2-3 days post amox to penicillin. It took care of the tic. Have since found mycoplasma and have been doing azithromycin for it and strep. She has had one or two exacerbations. Tic cleared fairly fast with azithromycin. Doing better and also on supplements and lt abx.

 

Other dd8 developed severe sep anxiety/anxiety after bout with normal typical symptomatic strep caught pretty early. 10 days amox I again DO NOT BELIEVE it eradicated the strep. Her tonsils and glands stayed very large and anxiety started about 3-4 weeks post infection. Large glands, cyclical vomiting and anxiety remained for several months. Changed ped and got azithromycin. Anxiety was gone almost immediately. Subequent visit to pandas ped, more abx, supplements, dd is back her I would say 95-98% of where she was. She was perfectly healthy prior to strep infection.

 

So, My only suggestion would be is go with your gut and try to get to a Pandas knowledgeable ped. Also, testing for aso titer for strep may not show elevated titer. This does not mean strep was not previously present.

[abbe]

Thanks all-

 

 

Thank you for your responses. I have a very good relationship with my son's Dr. Dr Chung. He is not his pediatrician. So the Majority of the people on this board used Azithromycin not Amoxicillan? If I could present the reasoning or logic to Dr. Chung he would read and write the script. I want to have my son on the correct antibiotic and then take him off the topamax and see what I see.

 

I really appreciate your help. And yes my oldest son who had OCD to have therapy and did work through it. But my middle son also had a slight tic, and can have anxiety. I never looked into any of this since we overcame all issues until my youngest son had the tic explosion, has separation anxiety, sleep issues. Etc.

 

 

Thanks so much for your help

 

 

abbe

[abbe]

Thanks all-

 

 

Thank you for your responses. I have a very good relationship with my son's Dr. Dr Chung. He is not his pediatrician. So the Majority of the people on this board used Azithromycin not Amoxicillan? If I could present the reasoning or logic to Dr. Chung he would read and write the script. I want to have my son on the correct antibiotic and then take him off the topamax and see what I see.

 

I really appreciate your help. And yes my oldest son who had OCD to have therapy and did work through it. But my middle son also had a slight tic, and can have anxiety. I never looked into any of this since we overcame all issues until my youngest son had the tic explosion, has separation anxiety, sleep issues. Etc.

 

 

Thanks so much for your help

 

 

abbe

 

bump

[WorriedDADNMOM]

Abbe--------The understanding I have with why azithromycin is more commonly used 1) High failure rates of amoxicillin which is a derivative of penicillin. 2) Allergy to penicillin. 3) Broader spectrum of antigens it is effective against. 4) Supposed immune modulating properties. Hope this helps.

[colleendonny]

We use azithromycim along with Augmentin. Augmentin is a popular abx used for PANDAS. Have you read Saving Sammy? His medicine was Augmentin.

Where do you live? You should make an appointment to see a PANDAS specialist asap.

Hang in there. I know, easier said than done. I'm relatively new here , since October, so I'm sure others will chime in. Everyone here is wonderful and helps out a lot. You'll get great advice and suggestions.

[NancyD]

Many people here on this forum take either Augmentin XR or Azyth for PANDAS. For PANDAS and MycoP you might be better off with Azyth. My DD takes Augmentin XR and Azyth (as well as Tindamax and other abx) but we are also treating Lyme/Bartonella in addition to PANDAS/MycoP.

[abbe]

Thank you all I am all over this...

 

 

abbe

[BoyIowa]

My ds has Pandas, Lyme and Myco P. He is on Augmentin XR and just switched from zith to Biaxin XL.