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zoloft, megavirus & other thoughts from new psych


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So we met with a new psychiatrist today who has seen a number of PANDAS patients and generally seems very knowledgable. Three things have come out of it that leave us looking for feedback:

 

1) she does recommend starting a "microscopic dose" of zoloft to help lower DD's anxiety. We are nervous about this given all the negative things we've heard about SSRI's and PANS kids, but certainly woudl like to alleviate the anxiety level for DD if possible. For those who are using Zoloft, what is your dosage and woudl you recommend trying it?

2) she questions the possibility of a "Megavirus" given we don't have any strep evident in bloodwork etc. and DD's history of ENT issues/coxsackie and wants to do a MRI to see if there is anything evident in her sinus tissues, etc. or elsewhere in the ear, nose, throat region. Something about a kind of virus that hides in a biofilm somewhere that makes it very hard to detect?

3) While we were generally impressed by the doctor and thought she was very good with DD, DD did not really respond to her and says she doesn't want to go back. She instead wants to go back to this pscyhologist who is very nice, but no pandas expereince, DD had seen her for two sessions in teh past so it's not like there is an established relationship, but she always went willingly and would do so again. We feel like the psychiatrist is the better fit for her condition, but aren't sure exactly how she is supposed to treat her if she is refusing to go!

 

Meantime, today was day three on the regimen of 1 dose Augmentin, 1 dose amoxicillin (and day 12 of taking amoxicillin straight after being on five days, off five for a couple of weeks) and in the alst 48 hours we have really seen a major difference in DD. Emotional libility is greatly improved (except when in the psych's office when she was quiet, nervous, figity, kvetchy), no tantrums, happy, herself, etc. and a little better eating and sleeping. clothing issues (OCD/Sensory stuff) ist sill pretty out of hand.

 

So....any thoughts, feedback, etc. on the psychiatrist's recs and/or how to get DD to participate in treatment? similar experiences? Looking for any or all advice!

 

Thanks!

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Hayley --

 

It's always a personal decision, but our DS has benefitted from low-dose Zoloft for a couple of years now; it took us a little trial and error to find his "magic" dose, though, because SSRIs are not dosed by age or weight, typically. He's 15yo, 155 lbs., and he takes 75 mg. now. But we began with 25 mg. and titered up slowly (over about 2 months) to his current dosage.

 

Most younger/smaller kids, anecdotally here on the forum, I see beginning with something about half of what my older, bigger DS began with: around 12.5 mg. or so. The main thing is to start low and go slow . . . meaning, don't titer up too quickly out of a sense of impatience or thinking it's not doing anything. And depending on just how PANDAS-savvy the psych is, she may suggest titering up too quickly, as well, just because the psych wants the child to get relief too, as well as the parents. Hopefully, though, you're in good hands and she won't push the dosage too quickly.

 

We see good results but, again, it can vary widely from person to person.

 

Regarding the microbe hiding in biofilm, particularly in the sinuses . . . yes, I think looking into that may be a good idea. Our DS, for example, never had any classic strep symptoms, but he's almost always had some upper respiratory issues that began with ear infections as a toddler and have carried through to allergies in his pre-teen and teen years. Because he required abx for so long, plus we've had him taking a biofilm buster (NAC) for a couple of years now and his respiratory issues are much improved these days, I feel fairly certain he had some "nasties" hanging out in his sinuses and it took us quite a while to eradicate them. There have been other families who've found illness hiding in the sinus cavities here, too (like Kimballout), so I wouldn't dismiss the opportunity to investigate that.

 

Finally, sometimes our kids show a dis-preference for a psych or therapist who's "on to" them and/or pushing them to confront some issues they'd rather not deal with. Unfortunately, we wasted quite a bit of time and money on a therapist for our DS that DS liked quite a bit, but he was, frankly, way too gentle with DS and did not engage in meaningful ERP with him on a regular basis because DS would disengage when he tried. Now, our current psych and therapist were not immediately to DS's liking because they had his number pretty quickly and tended to hold him more accountable than the previous, "friendly" one did. In the end, we made the right choice to change it up, and over time DS has not only progressed with respect to handling his OCD behaviors, but he's come to like and trust these folks, too.

 

So I would encourage DD to try seeing this savvy doc again. Maybe talk with her a bit about the differences she sees between these two professionals and what it is she likes more or less about one or the other. If you can get to the bottom of why her preferences are what they are, you could give the new psych some feedback, and perhaps she will decide to alter her approach with your DD a bit while they get to know one another.

 

Good luck!

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We started on 12.5mg Zoloft and doc asked me to increase it in two weeks (or was it one??). I reminded them that the medication did not take full effect for 6 weeks and I would not increase it until we saw what a base line was at that time. The higher the dose, the more likely side effects are. We ended up staying on 12.5mg for the last 6 months. DD was/is in the 55lb range. No real side effects that I can tell, but my kiddo is expressively delayed.

 

Now I am off to find out how much Doxycycline to put in my fish tank.....when it rains it pours---my fish are now sick too (not strep at least HAHA).

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Nancy has given you excellent advice, IMHO.

 

We started my dd on zoloft, 12.5mg. It didn't seem to help. We only had one negative side effect- difficulty sleeping, which went away after about 2 weeks. I (personally) think zoloft is worth a try AFTER you have given pandas treatment two months. The issue I have with zoloft is that you need to titer up the dose VERY slowly, and you may need to be at full dosage for 4 to 6 weeks to see improvement. This could mean several months before you see progress. For us, pandas is VERY variable, usually getting worse, then improving, rarely static. How do you tell if it is the zoloft working, or pandas treatment, or what? Doesn't mean you shouldn't try- just that you should be aware. We TRY not to change more than one variable at a time- however when in crisis, I would say throw everything (including the kitchen sink) at it at once.

 

Also- we have an amazing psych at USF (ped PCD experts) who told us if your child "llikes" the psych, then it is not the right psych. We found this to be so true! IN THE END our kids liked him- when they got over their issues- but NOT while they were "working" on it. We wasted a lot of time and $$$ with "nice" psychs who had a great repoir...

 

Good luck!

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While I agree that the psych can't be too nice, our experience was that our DS could only make progress with a psych that he liked. When all of this first started with DS, he was in really bad shape (in a full PANDAS exacerbation with anxiety, intrusive thoughts, meltdowns, inflexibility, suicidal, etc) We were traumatized and very, very worried, and found a psychologist for him to see (initial diagnosis ODD and mood disorder -- likely bipolar). DS took an immediate, intense dislike to the therapist, told us so, but we insisted that the therapy was essential. DS refused to go many times, locking himself in his room, havng total meltdowns at the idea of seeing this therapist, saying he hated the Dr. and wouldn't go, etc. We tried to stick with that therapist for months, even though DS vehemently disliked him and objected, eventually attacking DH everytime he needed to take DS to the therapy appt. It was only after 5 months of this that I finally figured out that he might have PANDAS, we got that diagnosis from Dr. B (and eventually Dr L) and started antibiotics which made an immediate difference in his mental state. At about the same time that we started the PANDAS treatment DS switched to a different therapist (really out of desperation on our part. DS refused to go see the first therapist, and clearly was in a deep psychological crisis) Maybe it's because the antibiotics caused a rapid and notable improvement and made DS psychologically available for therapy, or maybe it's because the current psychologist is truly skilled, but DS has mostly done well with his current therapist. I do wonder at times if the current therapist is too nice, but the bottom line is that DS is actually willing to go see him, likes him, and benefits from the visits, and the psychologist is still working really hard to build a rapport with DS. DS couldn't benefit from the appointment with the therapist that he really disliked. I feel like, in hindsight, we stuck it out too long with the first therapist, but this was all so new to us, and our first experience with a child in this condition.

Edited by DeterminedMomVA
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A brief history my 8 yo daughter seemed to become suddenly depressed and withdrawn, I thought it was due to inhaled steroids for asthma so we took her off but took her to a psychcologist. She seemed to improve off the steroids. Out of the blue one day, she started to mention suicide. we were referred to a psychiatrist. Then we got the Lyme (&Co) and then Mycoplasma, PANDAS dx. DD also has one copy MTHFR 677T, I mention this because I understand it may impact Serotonin. She had a brief improvement on amox and then tanked off it. ID doc put her on high dose amox and she spiraled downward for 17 days, a ball of anxiey, obsessions, suicidal begging to die, tellng me one day she thought her clothing was going to hurt her etc. (a pretty low moment in my life ) We had some ups and downs like this and psychiatrist (PANDAS familair but not expert) emphatically recommened 10 mg of Zoloft to dose up to 20 mg. DD is 64 pounds. At the same time started Augmentin/Biaxin. Literally the same day. Saw HUGE improvement in a few days. Skin picking went away. Obsessive thoughts mostly gone. Was not sure if was abx or from Zoloft, even though they say it doesnt work that fast. After maybe 4 weeks, I noticed she was massively overheating, and I mean scary like I was thinking we need to go to ER. She came home from tennis one day and told me she couldn't stop shaking. The psychiatrist insisted it was not Serotonin Syndrome but I had had enough. Not sure how old your DD is, but that is important to weigh too. These meds are really experimental in children especially under 12, and the effects/dosage can really be unknown. So if the risks outweigh the benefits, as they did for us at the time, there is not much of a choice, you need to give your kid the medicine. However if you see improvement without, and your child is not in danger, I would consider trying the abx route first. BTW I don't know why but Biaxin seems to be of particular help, when I stopped it for 24 hours because DD had a stomach ache, the obsessions came back. In our case fortunately DD seems to be ok and improving without psych meds.

 

Regarding the therapy question, each situation is different. My leaning is to stick with the one your daughter likes if you think they are competent, and if they are open to learning about PANDAS and understanding the medical component. Your daughter will make more progress if she is comfortable with the person and it will make it easier for you to get her there and get her help. My daughter did not like the psychiatrist she was seeing (although generally I did) and I found she actually got worse/agitated when she had a session. Ditto for another social worker and psychologist she saw, it ended being another annoying Drs visit for her and she would protest before and after and said it made her feel worse etc. I ended up finding a center that specializes in CBT and while the psychologist I found has no experience with Lyme and some with PANDAS, she specializes in kids with chronic illness (Lupus) and she really, really really gets it. DD cannot wait to go to the sessions and we are early in but she is making progress(this is a complete 180). In my intake with the psychologist she told me "she is probably really tired of being poked and prodded so I am not going to do that." This was exactly what DD was complaining about with the previous psychiatrist, asking her too many questions! After the first session with the new psychologist DD said "Mommy if she asked me any questions, I didn't realize it. Can I go back?" If your daughter does not trust the therapist it will be difficult to make any progress and could do more harm than good. Good luck these are very difficult decisions to make. Let your intuition guide you.

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Since the psychologist cannot prescribe meds or tests, maybe a compromise would work (depends on the age of your kiddo)? See the psychologist for your daughter to talk to and get advice from, but see the psychiatrist just for the meds and tests. It would likely not be twice the amount of visits, but it may a few more than if you just went to the psychiatrist; however, if DD will not allow psychiatrist to help her, all those visits will be a waste or detrimental. Psychologists and psychs frequently work together anyway. Have the two docs communicate with each other well if possible, and you can cart records back and forth as needed. This way your child feels that they have a say in their care and you may get the best of both worlds this way.

 

Oh, and if you really want to stick just with the psychiatrist, maybe the psychologist (in the best interest of the patient) would recommend she see the psychiatrist and hopefully she would be less resistant.

Edited by Mayzoo
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Hi! Just personal experience here with our dd. Prozac - started when she was at her worst so did nothing. (Took for 3.5 months). Zoloft 12.5 took for less than 2 weeks as she became so intensely anxious and restless "inside" that she would cry, shriek, pace, collapse and curl up in a ball etc. Awful:( Stopped zoloft and stopped having these super intense panic attacks by the next day!

NOW we are on Celexa 10mg for 8 days now..... things I notice or she has commented on, both positive and negative: zoned out, smiling, giddy, brighter eyes, quieter moments in her head, tired, exhausted by bedtime, mild tics returning(havent had since IVIg really), and last few days restless legs and restless "inside" as well as increaaed anxiety. I am in contact with psychiatrist and we r watcbing closely.

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My dd8 also did not like her psychiatrist in the start, she would walk in and lay face down on the couch refusing to look or answer anything the Dr. ask'd. It was very frustrating, but really showed our Dr. that we had serious problems ! After 2 yrs of visits, our dd10 started to loosen up and actually sit on the couch for a few minutes to answer questions as long as she could go play right after. Now at 4 yrs, our dd12 will actually sit and talk to her Dr. Everything that deals with treatment or help with PANDAS is slow moving. It takes time. Hang in there ;) And Celexa proved to be our best friend over all the rest. But remember that every child can respond diff to each medication.

Edited by MIA'S MOM
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