Help! Abx stopped working?

[ashley]

My DS(10) has been on azithromycin since mid-January and on GFCF diet since early March. He made great progress from February to mid-March - his "bad thoughts" went away, all but one tic disappeared, we were able to take him off clonidine at night and replaced with melatonin to help him sleep. I was so optimistic I even signed him up for a week of sleep-away camp in June! But things started to creep back in starting March 17th and he has continued to decline, becoming more emotional volatile, tics have increased, several bouts of out of control hyper activity, and several nose bleeds. We tried to ignore what was happening, but yesterday he was once again afraid to be alone (even in the bathroom) and was terrified to sleep by himself, so we are clearly headed right back to where we were in January.

 

Why is this happening??? Has the antibiotic stopped working? I have a call in to our pediatrician but feel so helpless and overwhelmed. Hoping someone might have some insight.

[amyjoy]

It sounds like there is something(s) else going on that is still (or again) triggering your child's immune system, and the zithromax does not treat it, or treat it enough.

Have you done additional testing for other infections, such as myco, lyme, viral etc and have him on plenty of probiotics?

has he or anyone in your home been sick, or strep at school?

[ashley]

Amyjoy, we haven't done any additional testing but maybe I need to request that. No one around him has been sick that we are aware of, other than seasonal allergies. He is on a daily allergy med and daily probiotic - how do I know if it is enough? Also an anti-fungal to combat yeast.

 

I wish the doctor would call me back already.....

[Rachel]

Viruses can cause problems. My son takes the extended release clonidine and normally sleeps through the night. However, last night he woke up sick to his stomach. Which is not the norm for him. He is also on Bixan for Mycoplama P. but I have not seen major improvement in symptoms but no regression yet either. I'm glad that you posted this. Hope you will get some other answers because I have been wondering what signs to look for if the antibiotic does stop working.

[amyjoy]

ashley, if you really look on these pages, people are doing lots of testing. Once the pandas-type immune dysfunction is happening, practically anything that triggers the immune system will just keep the symptoms rolling or happening again. Going gluten free for many people, like you, can help the blood brain barrier and reduce inflammation and pandas symptoms, so that was a good call. Its important to look deeply for immune issues and immune triggers as well, and treat everything you find. You will also see people talking about detox pathway problems on this forum, that can be big as well. People are doing the genetic testing to figure that out, and also, functional stool testing to look at that huge aspect of the immune system. PANDAS is complicated, i think of it like a cluster-f***, so many things overwhelming that kids immune system.

[MomWithOCDSon]

Ashley -- Since you're dealing with autoimmune, as AmyJoy and Rachel have already suggested, other triggers that can set off the immune system can cause issues, too; it's no longer limited to the original/initial trigger. If you think of the immune system as a glass, there's only so much it can hold/handle at one time. So if it's already close to fully topped off, even though relatively well controlled through your interventions, an additional immune-demanding load can top it off and cause it to run over.

 

So, if anyone has brought a virus around (there have been a lot of those this past winter), or since allergy season is emerging with the Spring, either of those could be at play here. This is supposed to be an especially bad allergy season, so if your DS has any other signs of environmental (pollen or mold) allergies, I would probably look that direction first.

 

Quelling the immune response should help your DS re-achieve the good trajectory he's demonstrated recently.

[ashley]

Thanks for all of your responses. This is so hard, and I am so incredibly tired . . . but we will keep going and we will figure this out one way or another.

 

Is there a comprehensive list somewhere of the testing we should be doing?

[amyjoy]

I'll tell you what we test for, even though its always a little different for each person

strep, myco, viruses (cmv, ebv, coxsackie, hhv6, sometimes toxoplasmosis or other depending on history)

lyme, coinfections, c6 peptide - as a first stop, if money is an issue and you can't do igenix or advanced labs or something that is out of pocket for these tests, you could run them through Quest which sends them out to Focus Labs and Specialty Labs. They are not as good as igenix but they are way better than standard quest or labcorp or hospital, and insurance will cover. but remember that if they are negative, it doesn't mean lyme may not be a problem. we always say, due to the low sensitivity of the testing, that a positive is a positive but a negative is a maybe.

mold - c4a we send out to national jewish labs in denver, through quest. sensitive indicator of mold-induced neuroinflammaton.

cd-57 if you're having to use labcorp, which helps with lyme testing.

cyrex gluten testing panel#3, at the minimum.

if you can't get that test through your provider, try a sincere gluten free diet for 2 months and see if it helps.

of course you're already doing immunoglobulin levels.

then there are the basics - chemistry, hematology, ferritin, vit d, b12 and folate, zinc, copper

sometimes a toxic screen, or heavy metals

we always do a functional stool analysis, because the gut IS the immune system. often there are major imbalances and infections that are under the radar and must be treated to get the immune load down.

GI problems can create allergies or make them worse.

test for allergy specifics - foods, pets, bedbugs, mold, resp.

reduce all exposures.

use a air filter if he has any resp allergies, and an anti-histamine of some kind, med or herbal, to get that trigger down.

these are just ideas.

good luck with everything!!!

[pr40]

have you tried 2 abx? our dd who has some similar symptoms, like nosebleeds, had to start second abx, augmenting was our first and zytro second, three months after the first. after she started augmenting things were improving very slowly, with two we saw a bump.

I am more skeptical about testing that previous posters since in most cases solution is to do 2 abx. my point is, why test if results would not lead to a drastically different therapy.

that said, I do think we should try to get rid of things that are not good for you like mold in your house.

Edited April 6, 2014 by pr40

[ashley]

Wow. Amyjoy that list absolutely terrifies me! I am printing it out and taking it to our next appointment though. I spoke with the pediatrician who had similar thoughts to pr40 in regards to testing - basically let's hit it with everything we've got because tests are expensive and may or may not actually give you any answers. We may revisit that issue pretty soon here though. In the mean time we have switched him from zith to omnicef and things seem to be stabilizing again. Finger crossed.

 

I am definitely concerned about mold though. We live in a very warm and humid climate and I wouldn't be terribly surprised to find we have mold issues. The question is how to locate and eradicate them . . . so much research!