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What happens if not treated?


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First of all, please do not bite my head off and tell me what a horrible parent I am. Each of our children are different, each respond differently, and each road we go down is completely different.

 

My son was first diagnosed last May when his first round of a azith after a positive throat culture stopped his tics completely. Since then we have tried numerous numerous medications. Some have benefits and some have done nothing, but everyone of them has caused my son more grief. Some have given him severe diarrhea, some of given him severe bone pains, and now most recently after taking azith at night he spends 2 or so hours pacing, mumbling, pulling his hair and eye lashes, and just miserable. This has happened the last two nights since he began the azith again. It occurs about an hour after taking the dose. I was able to get a little video of it and will be sending it to Dr. T and the pediatrician.

 

My husband and I have gotten to the point where we cant continue to watch him suffer from what is supposed to make him better.

Has anyone experienced or heard, what happens if you dont treat the PANDAS? Prognosis? Complications? I have researched, but am not coming up with anything at this point.

 

Thank you for taking the time to read this and not judge.

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I am not judging you. We all do what we think is best and what we feel will give our kids the best quality of life. My understanding is that kids with infection-triggered issues continue to deteriorate over time if not given some sort of biomedical support. This does not have to be from antibiotics - some have had success with homeopathy or herbals or diet - but some sort of support system for the body, to make the body strong enough to fight the infection. I'm not aware of stories where kids just somehow get strong enough to fight the infection on their own and recover. But then, those parents wouldn't be on the forums where I visit and their stories probably wouldn't be widely known. So who can say for certain.

 

The fact that the zith is exacerbating his symptoms sounds like herxing to me, but again, I have a lyme perspective, so that is going to alter how I see the world. I have seen my kids get worse when put on the right antibiotic for their particular infection. When bacteria die, they release toxins (some strains of strep release the toxin that causes scarlet fever). Sometimes it's the toxins, more than the bacteria itself, that exacerbates the situation. In the lyme world, not attacking the bacteria isn't an option. So the focus shifts to helping the body get rid of the toxins or lessen the load to get relief. We talk a lot about detox.

 

You obviously have to do what you feel is best for your son. Having been on this forum for awhile, you've probably already seen suggestions to get checked for lyme and bartonella or to see an LLMD. I respect Dr T but have not gotten the sense that he gives much consideration to lyme (which is ironic, given his complete belief in the power of myco p. to induce Pitands and myco p. can be transmitted by ticks). Only you know whether this is something that makes sense. I hope you find peace with whatever decision you make and that you're able to give your son the best long term situation possible. It's obvious he already has all the love you could give.

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Wickedmaineah --

 

I hear you. Sometimes the cure feels worse than the disease . . . at least short term.

 

I think the question you have to ask yourself, as your DS's guardian, though, is what about the long-term? I can't remember your son's specific behavioral manifestation of the PANDAS, but in our case, PANDAS treatment brought our DS back from the brink and immeasurably improved the quality of his life overall. If your son is definitely more functional off the abx than on, then I guess that makes the decision harder, for sure. That wasn't the case for us.

 

I'm not certain about your DS's specific reaction to the azith; hopefully Dr. T. or your ped can help you unravel that one. Perhaps your try a different abx, perhaps you find a way to press on a bit longer with this one and the reaction (herx?) will diminish over time?

 

As for diarrhea, s. boulardi was a lifesaver for us, and as DS's system got more accustomed to the abx, his gastro distress waned anyway. Bone pain from abx? Have you googled that? Bone, or joint? You can tie this pain directly to the abx, and in the absence of abx, it disappears entirely?

 

I don't know of any empirical studies illustrating the long-term impacts of untreated PANDAS, but I suspect you can see those results anecdoatally all around you. My DS went for 6 years undiagnosed and untreated, until his OCD literally escalated to the point where he was homebound, roombound and miserable. It seems to me that a life filled with psychiatric disturbances and psychiatric drugs is the most logical answer to the question, "What if we choose not to treat?" Could there be "self-curing" or "self-regulation" from an immunological point of view, as a person's body, mind and chemistry mature? I suppose so; I think there's anecdotal evidence of that all around us, as well. But it's a gamble. And what of the quality of life in the meantime?

 

Everything is a delicate balance, and there are seldom 100% wrong or 100% right answers.

Edited by MomWithOCDSon
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I just want to second what LLM said- all of it probably. I also think having more than one doctor on the team - multiple PANDAS docs, an LLMD, an integrative medicine, whatever (or ideally a combo of those!)- might really be what you need. We have consulted with Dr T and I will say LLM is accurate in what she said also. We had a positive (CDC+) lyme test at the time, too!

 

Since you asked about the future- I guess it depends on your child's ability to function. I mean, lots and lots of adults live very good lives while being treated for psychiatric symptoms. However, there are some who do not. I have no answer for you, but to say that you are not the only one thinking this. I am imagining I might have an adult child I am supporting down the road. I sure hope not, but we have done so much and though we see improvement, it does not last.

 

OK & after reading MomwithOCDSon-- DITTO.

said it so much better than I ever could have even thought it :blink:

Edited by PowPow
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I have not treated my son yet with immunomodulatory treatment. I think it's a difficult decision. My son son just started namenda and he is doing great on it. My husband and I were told that if PANDAS goes untreated, the consequences would be getting behind in school and not developing proper socialization skills. I think the key is to get these kids functioning as fast as possible so they don't fall too far behind?

Edited by LaurenK
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As for the those behaviors surfacing after starting the abx, what brand was the Azith? Was it from a different pharmacy than the first time? Some docs say they see improvements with certain brands.

 

I'm not judging. I'm concerned over the possible reaction and why it may be occuring.

 

 

 

Right.

Dr. Schulman told me that Azithromycin, Greenstone brand does not work. Only Teva or Sandoz.

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Just want to add that one of our children's response to Azith was similar to Vickie's child's-- she worsened the first few days on it, then started to improve. In our case, we are pretty sure dd does not have Lyme or other co-infections-- her tests were negative and her PANDAS treatment has been quite successful (knocking on wood...)so far. But I remember prior to her IVIG when she went on a course of Azith she'd worsen for a few days-- to the point I wondered if we should stop it-- then things would settle and we'd start seeing improvement. I was documenting and charting her symptoms for the docs at the time, and it's amazing how consistent the timing of the reactions and subsequent improvements were over several courses. For us, it was worth sticking it out through the first few days because the medication was ultimately beneficial-- but as you noted, every child is different. It's great that you were able to video your son for the doc-- it should help him to actually see what's going on and decide how to proceed. I hope you will see things start to improve soon!

 

TH

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I have no idea if this applies to your kiddo. However, my son (5) is doing very well and has been doing well (with a dip in November d/t Strep exposure) since early August. However, when he started Azith & Augmentin combo July 27th, he went thru a couple of weeks of serious herxing. I was totally freaked out because he would look good 1 day and then the next, really fall apart. These days came intermittently and after a couple of weeks he evened out and has been doing 90-100% since (except in Nov. for a few weeks he was doing more like 75-85% but we recently took labs and he showed elevated titers where there have been normalcy, leading us to believe that he exposed). This abx combo has been nothing short of miraculous for us. Have you talked with Dr. T about herxing? We see Dr. B and felt that this was true in our case, as it ended and he has been doing wells since....lots of warm wishes to you and your family! -Kath

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Hi,

I would agree with everything that LLM and Momwithocdson had to say.

 

My dd had PANDAS untreated for 3 years before diagnosis. (and a year after that we figured out the lyme piece) She deteriorated slowly in obvious exacerbations over those 3 years until she was completely incapacitated by ocd, so much so, that I thought that if her life did not change for the better, that she would be better off dead. If we had not started antibiotics when we did, I feel that in a few days time I would have had to have her put in a psychiatric facility for debilitating ocd.

 

Every once in a while, during a herx, we see a glimpse of that and I am thrown back to just how horrible it was and it scares me to death. But then things turn around again for the positive.

 

When dd started lyme treatment, she worsened considerably for 16 weeks before she turned around. One very long herx, unfortunately.

 

Sometimes things with lyme get worse before the get better. Something to consider. Best of luck.

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