Don't even know

[momto2pandas]

What a disturbing experience; I'm so sorry that you and your family had to go through that.

 

I don't know if this will be helpful at all, but I had episodes like that during a period of a couple of weeks when I was in the neighborhood of 20 yo, during a bad PANDAS flare (started right after a kidney infection, not sure if that was the cause). I am not a ragey person at all - far from it - but I remember throwing glass all over the place and being physically restrained by my freaked-out boyfriend... and then I remember just "checking out." I was conscious, but it was like my mind had just closed in on itself and I couldn't interact or even move. I mention it just because during the medical work-up I had at the time my thyroid was found to be incredibly out of whack - WAY, WAY out of the normal range, as if the gland had just quit. Correction with full replacement doses of synthroid ended it. Could have been coincidence, but severe hypothyroidism is known to present as psychosis/catatonia. Inflammatory cytokines, which become elevated in the presence of infection/inflammation (and which I believe become abnormally elevated in PANDAS), interfere with the conversion of T4 to T3 (active thyroid hormones), and thus can really mess with the thyroid, which messes with the brain. Of course other things are messing with the brain in PANDAS, but for me, when things got this bad, it seemed that the effect on the thyroid had pushed things over the edge of what I usually saw in response to infection, and when that was corrected things got back to normal. (Note that to check for this type of thyroid dysfunction, you have to check TSH, T4, and T3, since TSH alone - which is sometimes the only check of thyroid function done - won't necessarily show it properly.)

[7upMom]

He takes Lexapro(OCD) and Penicillin( PANDAS) in am and then eve takes Penicillin( PANDAS), abilify ( nos mood disorder) and clonidine ( tics and sleep)

 

How long has he been on the Lexapro? Have you noticed his symptoms getting worse and worse as time goes on or did they get better?

It was our experience with an SSRI that our dd's symtoms just kept getting worse while she was on it. Each time the dose was increased, more bad behaviors surfaced. It was during this time, that we experienced one of our "exorcist" rages. We took her off the SSRI against the advice of our physician and we had a different child - for the better - I'm not saying she by any means was at 100 %, but it took her from 5% to 50%, I guess. After we did that, we read somewhere that SSRI's sometimes make the symptoms of PANDAS worse. Not saying this is your case, just trying to see if there might be a connection?

 

He started on the lexapro in Dec (sudden onset OCD) it hasn't touched the compulsions, they continually have gotten worse, same with clonidine (started 6 mths ago and hasn't touched the tics- but works for his sleep. As far as the abilify it did work at first for a short while and then nothing, so they kept trying to up it and nothing anymore. Same with behavioral therapy- 2 years of weekly sessions - hasn't touched any of the behaviors. Its worth a shot to see if it gets better, I def will make sure I wean him off approp through his psych but if it isn't helping, it surely can't hurt to get him off of them and see.

[mama2alex]

I am SO sorry your family is going through this. It sounds like it's been a long haul. I am very relieved to hear you have an appointment with Dr. K on the 22nd, but you have an urgent situation and if you can get in sooner you should. Maybe call his office Monday morning, briefly explain the urgency/change in circumstances, and see if he's had any cancellations before the 22nd. Or maybe she can call you if there are any. Let her know you think your son may have had a seizure. Hang in there - Dr. K will help you.

[T_Mom]

7upmom-- I am so sorry you are going throught this--

 

I AGREE with Mama2alex you need to get to Dr K sooner then the 22nd--like THIS week, tomorrow.

I would call and beg to get in--

 

if it was a seizure you need to know in case of further issues--hang in there.

[thereishope]

The Pen dosage sounds like a prophylactic dosage. If he has an infection that wouldn't help. How's the weather by you? Can you get to urgent care, tell them he has a hx of rheumatic fever (info you supplied from the other thread), he is only on a proph dose of Pen and you suspect he has strep. If he is on abx, a strep test can come back false negative. Hopefully, the urgent care people will put him on something stronger. If he has an infection, every day makes a difference with abx.

[CandKRich]

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Edited August 12, 2013 by CandKRich

[kcdc3]

[

Hey there - - I just wanted to say a word about going off the Lexapro - - I was on it for over a year and didn't really feel like it was making a difference - - at any rate, I had to start the weaning process 2x because the side effects were so great - - nothing emotionally, but I got these CRAZY "brain zaps" - - all the time - - the only way I can describe it was feeling like I was "zapping out," "zapping in" - - over and over and over - - a million times a minute - - along with dizziness. It took a few months for this all to actually go away - - and I went A LOT slower on the tapering down in dosage than "recommended."

 

Yes - my dd went through horrible withdrawals when she came off of Zoloft- she mentioned the "brain zaps", dizziness, also. It took her several weeks to come out of those, but she was only on the Zoloft for 4 to 5 months. The withdrawals were worth it, though when after she came out of that she was much better in some ways.

[thereishope]

PANDAS kids do have to be careful when using SSRI's. Some PANDAS kids have adverse reactions. As stated on the PANDAS Fact Sheet ...

 

http://www.latitudes.org/forums/index.php?showtopic=6265

 

 

Cognitive Behavioral Therapy (CBT) has been shown to be effective in some children with PANDAS and to provide families with coping strategies during a PANDAS flare [storch2006]. Caution is recommended for using SSRI's with PANDAS/OCD as there are reports of higher activation rates in such cases [Murphy2006]. In addition, there is a lack of controlled studies showing safety and efficacy of anti-tic or anti-OCD medications (e.g., SSRI and anti-psychotics) for children in the PANDAS subgroup.

 

 

 

This does not mean all PANDAS will have adverse effects with SSRI's, but they should be used with caution. There are some kids who use a SSRI on this forum and do fine with what dose they have been given. Also, if anyone decides to wean their child off meds, you should do so with the help and guidance of a doctor. Only add or omit one thing at a time with a child so you can tell what is helping or hindering.

[kcdc3]

Yes, I agree- if you choose to wean off of an SSRI, it has to be done very slowly. We took our dd down in 25 mg increments every 2 weeks. When I told my doc that I was going to take her off of it, he told me that he really thought she should stay at just a lower dose. I asked him if I wanted to take her off completely, how would he recommend and he did state every couple of weeks to lower by 25 mg (since that is the dose that the pills came in). We got to the "lower dose" he recommended and nothing changed, so we just kept taking her down. I think in all it took us over 2 months to get her off of it totally. If your doc doesn't want your child to go off of it, he should at least tell you how to take him off should you choose to do so. You will be able to tell as you come down in dose if things are going to get worse. If nothing changes, then it might tell you if it was helping to begin with.

 

 

PANDAS kids do have to be careful when using SSRI's. Some PANDAS kids have adverse reactions. As stated on the PANDAS Fact Sheet ...

 

http://www.latitudes.org/forums/index.php?showtopic=6265

 

 

Cognitive Behavioral Therapy (CBT) has been shown to be effective in some children with PANDAS and to provide families with coping strategies during a PANDAS flare [storch2006]. Caution is recommended for using SSRI's with PANDAS/OCD as there are reports of higher activation rates in such cases [Murphy2006]. In addition, there is a lack of controlled studies showing safety and efficacy of anti-tic or anti-OCD medications (e.g., SSRI and anti-psychotics) for children in the PANDAS subgroup.

 

 

 

This does not mean all PANDAS will have adverse effects with SSRI's, but they should be used with caution. There are some kids who use a SSRI on this forum and do fine with what dose they have been given. Also, if anyone decides to wean their child off meds, you should do so with the help and guidance of a doctor. Only add or omit one thing at a time with a child so you can tell what is helping or hindering.

[7upMom]

It is good to know what to possibly expect when we do wean him down. My head is just spinning right now, this evening wasn't any different- same scenario only the rage was from not wanting to go into church> again physically aggressive and violent, spit in my face etc, etc. We have always done the just follow him/or sit by him for his safety but last night and tonight it is to the point where you have to physically restrain him he is so violent and out of control. It is breaking my heart and I don't know how much longer we can do this. I am going to try calling Dr K's office in the morning and get him in sooner- thanks for the sugg. I have a script from last month, they prescribed as a precautionary when he had a sore throat ( but strep was neg) it is cephalexin 250. Would this work better to give him than the penicillin??