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I just met with Dr. K yesterday to recap on DS. Ds just started another episode about 5 days ago. While I was not sure if it was going to be full blown, I started Motrin (round the clock every 6 hours). It worked beautifully!!! Day 6, yesterday, I met with DR K and reported this to him. He advised stopping the Motrin because it is only a band-aide and does not treat the originating problem. He instead said that he would prefer I go to the full strength abx after 5 days of consistant symptoms. So yesterday I did not give him the motrin after school....as the earlier does completely wore off, I was shocked to see him go to higer lever symptoms....ugh...which for him is repetitive motoric symptoms of running up the same 3 steps over and over and then crashing his entire body against our walls...over and over and over.

 

While I hated to see him in this way, it made sense that the motrin was masking and not giving a true picture of what was really going on and how bad. I am conflicted because I know that motrin helps tremendously. That being said, it seems that DR. K is right. I have decided that I will do higher abx and only use Motrin when I absolutely have too. He scared me about the liver damage.

 

So, I guess I am voting for the abx approach in your situation. Or maybe you can use both?

 

I see how tough it is for you, and I am sorry for your circumstances. Hopefully some of the above suggestions from other forum members will be helpful.

 

Hugs to you.

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Fl mom-

 

Sorry for your situation. Are you near St Petersburg? There is an excellent therapy program there for kids with OCD and/or pandas. We went with my kids. I can tell you that pandas so changes the dynamics of the family- we learned to take back our power and authority as parents. I believe that if this is what the doc prescribes, you should compel your son to comply if his reason to not take the mess is to just be difficult. It is not easy, but this means nothing until he complies; no screens, no phone, no going out, no food treats, etc. as our psych explained, if it gets to this pt a parent need only provide the minimum food, clothing, shelter.

 

Tough love.

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Perhaps this will help you.... Before I started the antibiotics my child took any pill that I stuck in her mouth. She did whatever I wanted her to do. After being on the antibiotics for 3 months, she starting giving me a really hard time. I think because they were making her so sick and more agitated. She just became so difficult. The antibiotics in our case help with severe insomnia but they make her much more agitated and aggressive. Not sure if this could be happening with your son. Good Luck.

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Thanks for all the advice.

I will look into that book. I need the right script to follow with him. The sad thing is is that he is perfectly content with how he is. I know he really isn't, but he says he is, so telling him how/where he will end up doesn't seem to be working. He'd just as soon be dead, as far as he says.

 

The blood work we got back from Dr. K wasn't significant--no strep, and low IGG (not sure what the low IGG means), so I'm not even sure he has Pandas. Last year HHV 6 was high, but both Dr. K and Dr. Murphy downplayed it saying most do show that in blood work. I will push it further if we don't see results with antibiotics (if he will take them continuously).

 

I figured I'd let him try the ibuprofen test through the weekend and see if I notice a difference. His mood seems calmer(but his mood cycles normally, so I don't know if it is related to the ibuprofen), but OCD seems about the same. Should I expect to see improvements with OCD while on it? I so wish I would so it would confirm what we are dealing with.

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Hugs.

My 9 yo son also had contamination ocd- today's day 14 of a double does of abx and today's actually the best day we've had in a long, long time, so I will speak in past tense as I hope this is in the past- he was unable to touch or be touched by anything that has been touched by a girl. I have a daughter, so basically everything in our house was contaminated, including his bed/sheets/pillows etc bc they touched the floor, which of course, my daughter has walked on.

You said his mood is calmer, even while his ocd isn't. It's a great time to set and enforce absolute rules. With my son, bedtimes were taking hours, bc of his contamination tic. He just couldn't lie down. I HAD to do something. So I took media away, which he adores. No ipad, no minecraft, no computer, nothing. It was (for him AND me), but I knew it was the only thing that I could hold over his head. It still took him a loooong time to find a way (this is nights into it, not right away; I've never found that magic "change now!" cure!!) but eventually we found a way (albeit a wierd one, taking a mattress of his bunkbed, turning it upside down before touching the floor with it, putting it on the floor with only a sheet on it [one that he chose which was the least difficult for him to use], and using NO covers- though as time progressed I was able to give a little media, then use it as a tool to get him to choose something to put over him when he sleeps; all the blankets in the house were contaminated but he was able to find two sheets to pull over him, as long as they never touch the ground and nothing touches them). He was at his worst in a long time when this started, and now two or three weeks into it, we've developed habits that help him get to bed (he had to "practice" going to bed each night and making it work before getting media before bedtime) and help him deal with his ocd.

Point is, take advantage of his calmer mood to enforce the fact that he is required to takes these medicines, and if/when he cycles into a poorer mood again, hopefully some habits will be in place to help him cope.

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Not to hijack the thread, but I am thrilled to report that it took only 2 days of higher dose abx to restore dx back to 100%. 5 days and holding....Dr. K explained to me that while it takes IVIG a year to do it's thing, we will continue to experience flares. However, his flares should slowly start to become farther in between, less intense and duration. This seems to be holding true, since he recovered miraculously fast this time around. (GOD I hope I don't jinx the situation by reporting this).

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Qannie, That is great news! I'm thrilled for you that his flare resolved so quickly!

jph, THanks for sharing your story. My son has similar contamination issues with things that his sister has touched (everything!) He has no place to sit in our living room to watch tv with us. Last night he brought in a lego box to sit on. I offered him money to sit on the couch, but my price wasn't high enough. I sometimes wonder if I should just raise it...after all, its much cheaper than what I was paying for therapy per session. And he's broken ocd habits before by my paying him, and then finally he realizes he doesn't have to do those things.

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Dcmom, We are less than 2 hours from St. Pete. I assume you are referring to the USF program. I am looking into it. My only concern of starting it is if we do start it, how will I know what is making the difference: the therapy or the antibiotics? I don't know how they differentiate that.

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