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So i am starting a new thread because we are moving into the next phase of recovery. My son has been on 22 days of abx and his tics have gone from severe to low/moderate. They are quieter and less frequent. Mostly vocals, the only motor is a head nod but its infrequent. We have 28 more days of azithro before we run out.

 

My gut tells me to keep him on so I am going to get another rx before we run out.

 

However, what are the real risks of long term abx? We give my son 50 bill CFU of Ther-biotic detox daily and we use about 7 drops of GSE a day to keep yeast at bay. We are on a clean diet and have removed all severe and moderate food intolerences and are low sugar.

 

i also give him NAC to help detox. I really think it helps in combo with his methyl B complex that we give 2x a week.

 

What do I need to watch out for with the abx? Can he realistically stay on them for a year?

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We are on year five of constant abx for my son (12 1/2) with no issues. He's been on augmentin, then azithromycin, then biaxin and now minocycline. My daughter (7) has been on azith and then biaxin for 3 years with a few breaks. She also has tolerated them remarkably well. Some of the PANDAS doctors have remarked that PANDAS kids in general tend to do very well on long-term abx without the issues that others may have. Not to say that's true across the board, but in our case, fortunately, it has been.

 

Having said that, I HATE the fact that my kids need constant abx... I wish it wasn't so and I'll do everything in my power to track down other solutions, but in the meantime the alternative is so. much. worse.

 

Sounds like youve got the probiotic thing covered pretty well. (I'm sure you know to give it several hours away from abx). We also give saccaromyces boulardii (probiotic yeast) that CAN be given at the same time as abx, which is helpful.

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It depends upon the individual and how he/she handles consistent abx. My son has been on abx daily for 3+ years, and the combo of 2 (Augmentin 2 x D and Azithromycin 1 x D) for 2 yrs. 5 m. with no major side effects. He did have some candida growth at one point which we got under control with Diflucan. He takes a daily probiotic. The most important thing is to do a CBC and chem screen every 3 months in order to check for liver/kidney concners. So far so good. It is my absolute conviction that if he had not been put on a long term abx regime, he would not have recovered so effectively. That being said, it took IVig and GF diet in addition to the abx to get him here.

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My DS16 has been on abx for over 3 years now - 2 of which he has been on daily IV abx. For him, the benefits outweigh the risks. Long-term abx are not unheard of. It's standard practice of care to prescribe long-term abx for rheumatic fever, which is strep-induced. Often children with RF are on abx until adulthood.

 

We also address immune function and gut health with high doses of probiotics, diet (organic, or at the very least, non-GMO, gluten/dairy free, low sugar) and liver support among other things.

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Your responses sound very promising. So far my son has had no adverse effects from the 3 different types of abx he has been on. He does complain of a belly ache after eating from time to time but its brief and then he is fine. His poops look great.

 

i am in the camp right now of keeping him on the azith until summer. i just don't want to chance it. If he is doing well and remains free from strep then I think we are on to something.

 

thanks for the advice to test for liver functions. I will make sure to do that. i have him on NAC 1200mgs a day to help with detoxing and take some of the burden off his liver. I hope that this helps.

 

Thanks again for your replies!

Edited by cara615
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We did 4 yrs of combo abx (Pandas/lyme). We've been off them since April of this year (knock wood). Here are the issues I had to deal with:

 

1. Yeast - this was a periodic problem. Garlic supplements helped sometimes. Sacc. Boulardis made things far worse for my son. (it helps some people, it disagrees with others). We shoot for 50billion CFUs with high bifido and lacto blends (Truflora, Kirikman Bifido and CP-1 are my favorites). Nystatin and diflucan were needed sometimes. Molybdenum helps the body break down the ammonia and adlehyde emitted by yeast.

 

2. Gut inflammation - from yeast or from abx being too harsh - have tried many supplements (Betain HCL, digestive enzymes). Am seeing positive results from 2x/day glutamine, which improves the mucus lining of the gut. (NAC is a mucus thinner, so just be aware you may need something to counterbalance if you stay with the NAC. Also watch for mood issues - some do great on NAC, others cant handle the high sulfur content). My hats off to you for all the dietary changes you've been able to make! You're a better/braver soul than me! I tried and couldn't do it :(

 

3. Liver - processing abx and diflucan and toxins are all hard on the liver. Make sure you get periodic liver panels - we did every 3-4 months. Milk thistle can help with liver detox (provided you aren't allergic to ragweed - MT is from the same family - and provided you can handle suflurs). SAMe can help so long as you're not an overmethylator.

 

4. Knowing when to stop - despite the risks, I always took comfort from long term abx. It was like having a safety net during the winter months. I hold my breath as we head into winter this year. But like Ariel, we occasionally tried to stop. The third time was the charm. There may come a time when the risks/gut harm outweighs the benefits. So once in awhile, it's good to re-evaluate. But probably during the summer, not now.

 

 

Long term abx are not without risk. But so is on-going inflammation. Spend this time supporting the body like you're doing, letting healing do its thing. You'll know when it's time to reassess.

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LLM thank you for all that good info. I forgot to mention that he gets glutamine every day! So hopefully that is helping counteract the NAC. I am also cooking with a lot of turmeric lately on all his foods.

 

I will make sure to do those liver panels and maybe in the summer see if I can take him off........

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I can't say I ever got comfortable with it, my DD9 has been on combo abx since around April 2012, she has been on ZIth/Rifampin since November 2012. We are weaning her off and will keep her on a prophylactic dose of Zith for the winter to cover strep.

 

FWIW, my non PANS 4 year old has an immune complement disorder and the very mainstream hospital based immunologist she sees has her on a prophylactic does of Zith as well for the winter. That sort of gave me an odd bit of comfort that this was the recommended course from a mainstream institution.

 

We use probiotics, milk thistle and regular bloodwork to monitor.

 

I remember how shocked I was when our pediatrician prescribed 21 days of amox when DD tested + for Lyme. While I would much prefer not to have gone this route, there was no other acceptable option for us. The alternative would be to have DD likely locked up in a psych ward, on painkillers and psych meds. Today she is a (mostly) well adjusted regular kid who has discovered she is big into sports and nail art videos.

 

The decisions have always been difficult and I still struggle.

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