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Still OCD after all the meds?


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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,

T.Anna

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Hi t.anna. o man... i remember firat staring this journey almost one year ago exactly. I felt like back then it seemed everhones child did get better easily and or quikly. And my dd wasnt. For me i think it was the shock of all of it and the posts and info i was reading....i was lookkbg (and hoping) for a quik cure... well a year later and one thing i want to stress is that pandas/pans is an autoimmune problem -- and there is no quik and easy fix for these. BUT time and the right treatments do decrease the symptoms to managable and sometimes almost nonexistant. Seems every child rrquires something a bit different to function optimally. Some kids have more underlyying immune issues. And some, like my dd10 conquer one thing onlg to have another rear its head. I hope this doesnt sound bad - just real. Hang in there and keep on fighting for.your kiddo. And ask away kn this forum it is wbere i learned the most for sure!

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T. Anna,

 

Welcome to the forum. It looks like the medication is finally working.

 

A couple of questions--how long was your DS on antibiotics? Many do report rapid results with antibiotics, but often those are children having their first outbreak. From the sound of things, your DS has had this for a number of years and it usually takes longer to get results. My DD is 19--some of her symptoms resolved after a month on antibiotics, but others lingered on and did not resolve until after IVIG. She has some symptoms coming back--not as bad as before and may need to go back on antibiotics.

 

Have his tests been re-run to ensure his infections have cleared? You may need to consider having him on prophylactic antibiotics to help prevent future infections.

 

I hope he has been on probiotics--you do not want to add a yeast infection to everything else.

 

Sleep does miraculous things. Unfortunately, insomnia plagues many of our children. Many here use melatonin or benadryl.

 

Ko's Mom

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Welcome to the forum. I am sorry for what your son is going through. It sounds like he was on a good antibiotic combo. What worries me is that he did not take it long enough. You say he was positive for Myco p. It takes months to years to clear chronic myco p. From the history you give I would say your son has had some lingering infections causing his behavioral issues for some time. It sounds like you are doing all the right things. I would only add that you should find a doctor who understands Myco (usually a LLMD is best), to truly get that cleared. He will not get completely better as long as that is lingering. Best of luck.

 

Dedee

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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,

T.Anna

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