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Posts posted by T_Anna

  1. Happy Holidays,

    DS 14.5 and dx with pandas about a month ago has been spiraling this past week. Should I take him to a clinic or ER to have tests to see if he still has an infection? He tested positive for strep, mycoplasma and coxsakie. He was taking Augmentin, biaxin, anti viral and steroid burst. He seemed about 30% better, but now it all seems back to OCD and mood swings. What should I do? I have a phone appt with Dr. T Wednesday at 5:30, but that'll be almost three days before I get any answers/treatment for him. Right now he's not taking anything but Advil and multi vitamins.



  2. In my daughter's case, Lyme was the cause of her severe lethargy. That symptom has gone away with treatment. She also has elevated ASO, Mycoplasma etc. Steroids can exacerbate Lyme, unknowingly taking steriods when you have Lyme seems to reactivate it. It may be something you want to explore if you have not already, for some reason a number of kids seem to have the PANS trifecta, Lyme, Strep and Mycoplasma. Other tests I would ask for would be Mono.

  3. My DS (14), who was recently diagnosed with PANDAS/PANS (positive for cocksakie, mycoplasma & strep), cannot wake up fully in the mornings. This started on Saturday and it has become worse and worse each day. Today he is still sleeping and it is 11.15am. The therapist thinks it's biological, not behavioral or psychological. He spoke with the therapist on the phone, but was incoherent and falling asleep.


    He was taking Augmentin, Anti-viral, Biaxin and Predisone. He took the last of the pills on the past Saturday.


    On the plus side, his OCD and his ability to control it has grown and he seemed fine last night (went to sleep at 12).


    He isn't angry anymore, but apologetic that he keeps falling back asleep.


    Any ideas? Anyone experience anything like this?




  4. Thank you for the responses.


    He was on the abx/antivirals for 10 days. I have an appointment with Dr. T to discuss further treatment. A blood test to see what issues still remain is a good idea. IVIG also seems to have done wonders for others, but how long does that last?


    This morning he woke up again in a rage /angry mood and wouldn't get out of bed. We finally left, as I had to take other two to school and one had a play at school today (ds has two younger sibs). But contrary to Monday's episode, he finally did "snap out of it" and started getting ready. He made it school (very late)and was in a good mood.


    Has anyone else have morning bed OCD issues? It's scary, but I feel the bed is his trigger now in the mornings. This is new for us as generally his rituals were confined to nights. Now that the nights have eased a bit (it's been a few days, not much of a track record), maybe the anxiety has moved to mornings.


    Another question: Have you noticed a drastic connection between food intake and OCD symptoms (specifically proteins)? Logically there should be a strong correlation, but I've stopped thinking logically a while ago.



    Thanks again,


  5. Hi, Allow me to introduce myself.


    My son is 14.5 yrs old and has been showing severe OCD since late September. We had him tested for PANDAS and he came out positive for strep, mycoplasma, cocksackie among others - but the levels weren't super high...someone referred to it as partial PANDAS. He has always been a tightly wired kid and over the years we had him tested for a variety of issues, like Austism at age 4 & ADD at 10. But he never tested positive for any of those issues, although at 9 he tested positive for dysgraphia (writing?). Now I realize that he may have had PANDAS all these years and we didn't know to look at that as an illness.


    His OCD became so severe that he was not sleeping due to rituals (doing them all night) and was also unable to make it to school the next day, etc.


    My question: since getting the blood work results, he has been on Augmentin, Biaxin, Predisone, and an anti-viral (cannot remember the name, big blue pills).

    He completed the last of the pills on Saturday (he is still taking vitamin d and a multi vitamin for iron).

    How long does it generally take to see significant results?


    We are doing a lot of CBT with a therapist and have had some good days and very bad days. I wanted to try another steroid burst, but he was too sad from the steroids the first go round.


    This past weekend was really rough. We discovered that he was suffering from severe sleep deprivation and he was turning into a nasty semi-human (he averaged 3 hours a nigh - way too little for a teenager).


    Yesterday he finally got some real rest and when he finally woke up he was great! He cut down on his rituals and got to bed at a decent hour. This morning he was awake on his own and acted like a real kid.


    Are these results from the medication? Does it take so long to kick in? I'm reading this forum and many report almost immediate results.


    I'm just trying to get an idea of the course these things can take since I don't want the other shoe to drop.


    Opinions? Suggestions?


    Thanks in advance,


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