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I know typically it takes weeks/months for SSRI's to kick in, but I also know they can have some immediate effects too. Since your DS seems to have taken a dramatic turn for the worse, maybe it would be worth considering dropping the SSRI and sticking with the abx/anti viral as that seemed to help before. In my DD's case she started abx and zoloft at the same time. We saw an immediate improvement which I suspected was from abx but could not be certain. DD started shaking and overheating after a few weeks so I took her off the zoloft although the psychiatrist was not in complete agreement that it was the right move, and she has been fine so far with abx alone (and lots of CBT). My DD has a mutation that causes a problem with methylation, essentially she does not detox properly and the serotonin pathways do not work properly (I can't get my head around this but LLM understands it and we have a doctor treating it). So even with a tiny dose of Zoloft it was too much for her, I was worried she was going to develop serotonin syndrome. That said, some children definitely need these types of meds, each case is different. I am wondering if you could give a shot of just the abx/anti virals/motrin and see what happens? without the luvox? Also wondering if you could try an abx combo instead of just Biaxin, in our case Augmentin/Biaxin was a real miracle.

 

Edited to add: I just read that dialated pupils can be a "severe" side effect of Luvox, I'm in no way an expert but that sounds worrisome as a mom

Edited by Hopeny
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We just came back from the therapist. She believes that DS is suffering from depression in addition to/as a result of tPANDAS and OCD. She thinks his reaction today (and DS agreed) was that he was angry at himself for not getting to school and projecting his anger towards his parents. She wants to give the Luvox more time to work as DS doesn't have enough energy to fight the OCD thoughts. She also will talk to Dr.T about continuing the Biaxin and possibly adding Augmentin again. She also said to cut back on theVitamin D (from 1000 to 400).

Hopefully, we'll get the blood results next week and figure out the next plan of action.

Thanks for listening.

T.Anna

DS 14.5

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We just came back from the therapist. She believes that DS is suffering from depression in addition to/as a result of tPANDAS and OCD. She thinks his reaction today (and DS agreed) was that he was angry at himself for not getting to school and projecting his anger towards his parents. She wants to give the Luvox more time to work as DS doesn't have enough energy to fight the OCD thoughts. She also will talk to Dr.T about continuing the Biaxin and possibly adding Augmentin again. She also said to cut back on theVitamin D (from 1000 to 400).

Hopefully, we'll get the blood results next week and figure out the next plan of action.

Thanks for listening.

T.Anna

DS 14.5

 

What was her reasoning for cutting back on the D3? That's the first time I've heard that, so I'm curious. :blink:

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Ok, going to try to get this right: She said that sometimes vitamin D can give patients a nervous energy. She doesn't want DS more edgy. He needs more mental energy right now. She also felt that we could put it back up after we saw the blood test results.

 

T.Anna

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Ok, going to try to get this right: She said that sometimes vitamin D can give patients a nervous energy. She doesn't want DS more edgy. He needs more mental energy right now. She also felt that we could put it back up after we saw the blood test results.

 

T.Anna

 

Hmmm. Never heard that before, but it's an interesting hypothesis. I wonder if that's a response from her clinical experience, or if she has some research reference for it? If/when you see her again and you think to ask, I'd love to know!

 

We have a psych appointment at the end of the month, ourselves, and our psych seems to be pretty "up" on research, so I'm going to ask her, as well.

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Yes, he was checked for Lyme (not a specialized test, but all was negative).

 

I think the hardest part is watching the days pass with no change and no regular "living" for DS.

 

T. Anna

DS14.5

Just curious were all bands negative or do you mean the test was CDC negative? do you have a copy?

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