VERY BAD here IVIG #2 next week.

[Joan Pandas Mom]

Things are so bad here. Last night I thought my son was crossing that fine line in the brain of no return. THANK GOD we are scheduled for IVIG #2 next week. I pray it works. It has been 4 1/2 months since IVIG #1. He has been out of school since Sept. 18th. He wants to go badly, but is just consumed with obsessions and compulsions all day long. I felt so helpless last night. I could not help him, he was so frustrated. No matter where I went in the house to try to get away from it for a little while, I could hear the door to the bathroom open and close over and over. It must have been about 15 minutes of it. I feel like this is a form of torture for the whole family. Next week can't come fast enough. He wants to go to the school and play basketball. I'm worried about him catching something right before IVIG. Any advice? My gut tells me to keep him away but he is so bored and getting depressed at home on the couch or running errands with me. I did get him to go for a run yesterday. I walked. Even that is hard to do. At one point he stood in the road for about 5 minutes stuck in a compulsion.

[tygertoo]

My son also has OCD (he has had OCD symptoms for over 5 years) and is currently on long term abx....while that has helped in many ways the OCD is tough to stop. What I am finding out is that even though you are reducing the inflammation and infection his brain has been trained to do things a certain way...so it is also undoing what he things is his "normal". So CBT has been very effective for us....he had been doing it weekly and now we just see his therapist every few months for a "reminder" session on his techniques he has learned...Here is a link if you are not familiar with CBT....we are not out of the woods by a long shot but I can say it is much improved. Good luck and hopefully the 2nd IVIG will help.

 

http://www.helpguide.org/mental/obsessive_compulsive_disorder_ocd.htm

 

-Karen

[Joan Pandas Mom]

Hi Karen, thanks so much for that. We have been dealing with it for a long time too. We have gone to intensive outpatient programs 4 times now. Twice they worked pretty good for about a month but OCD always returned. I don't know if my son got reinfected making it difficult to fight. We returned from our latest 18 day treatment in California at the end of August. He improved about 40-50% but stopped doing the exposures and ocd is growing again, fast and furious.

[EAMom]

 

 

What antibiotic and dose is he on?

 

Have you checked family members for strep (throat culture, then titers if that is neg?).

[Joan Pandas Mom]

He is on 875 mg Augmentin and 500 mg Biaxin daily. He has been on this or close to this for about 1 1/2 - 2 months. He was on 875 mg augmentin twice a day before that. Before that was on 500 mg biaxin 2 x a day. He has been on fairly high dose of abx since October 2009. With that October exacerbation we did 7 weeks of 1,000 Augmentin XR twice a day before switching to azith, We tried Clindomycin in dec. 09 too.

[EAMom]

He is on 875 mg Augmentin and 500 mg Biaxin daily. He has been on this or close to this for about 1 1/2 - 2 months. He was on 875 mg augmentin twice a day before that. Before that was on 500 mg biaxin 2 x a day. He has been on fairly high dose of abx since October 2009. With that October exacerbation we did 7 weeks of 1,000 Augmentin XR twice a day before switching to azith, We tried Clindomycin in dec. 09 too.

 

I don't know about Biaxin, but I am a pretty strong believer (I know there are docs that feel otherwise) that Augmentin must be give 2x daily. It just doesn't make sense to me, that if Amoxillin or penicillin has to be given 2x daily (due to a short 1/2 life), then Augmentin should be the same (since it's half-life is essentially the same).

 

How big is your son?

 

What dose of Azith. was he on?

 

It seems like if he is having a bad time right now, it would make sense to increase the Aug. to 2x daily (or go back to XR 2x daily) to see if it helps matters.

[EAMom]

He is on 875 mg Augmentin and 500 mg Biaxin daily. He has been on this or close to this for about 1 1/2 - 2 months. He was on 875 mg augmentin twice a day before that. Before that was on 500 mg biaxin 2 x a day. He has been on fairly high dose of abx since October 2009. With that October exacerbation we did 7 weeks of 1,000 Augmentin XR twice a day before switching to azith, We tried Clindomycin in dec. 09 too.

 

It looks like Biaxin is a 2x daily drug as well.

 

Some PANDAS kids just don't do well on lower doses (or less frequent dosing) of antibiotics.

[Joan Pandas Mom]

I agree with you completely. I will start augmentin twice a day. I still have 1,000 xr. We meet with the Lyme specialist again next week. He hasn't completely ruled out Lyme, but I think he might. He suggested bicillin shots 3x a week. Have you ever looked into that?

[EAMom]

I agree with you completely. I will start augmentin twice a day. I still have 1,000 xr. We meet with the Lyme specialist again next week. He hasn't completely ruled out Lyme, but I think he might. He suggested bicillin shots 3x a week. Have you ever looked into that?

 

Ohh. Ouch. Nope. But that's just penicillin, right? I would think Azith. or Augmentin would be more effective.

[Joan Pandas Mom]

It is just penicillin. I know another child around here had those when she was dx with PANDAS. I had the wrong Pedi.

[tygertoo]

Hi Karen, thanks so much for that. We have been dealing with it for a long time too. We have gone to intensive outpatient programs 4 times now. Twice they worked pretty good for about a month but OCD always returned. I don't know if my son got reinfected making it difficult to fight. We returned from our latest 18 day treatment in California at the end of August. He improved about 40-50% but stopped doing the exposures and ocd is growing again, fast and furious.

 

 

The key with CBT is to enforce it daily/hourly/by the minute with your child....every time I catch my son doing something I confront him. We call them "worry bullies" so there is no negative connotation associated with it. When he has to do something methodical (so many times) and lets say it is 3. He is given the direction that he can only do it 2x or he can do it 4x but not 3.

If he "tells on himself" he is only able to do it 3x a day and we have worked down to 1x a day. It is doing the opposite of what his "bully" is telling him to do or doing something different or throwing it in the "trashcan". It truly does work if you keep on it all of the time.... they eventually just disappear. We do this with all of his OCD habits...don't let them try and fool you though..he is smart enough to tell me that it is a tic when I know better! :-)

[norcalmom]

Joan so sorry you are going through this. Have you tried any steroids? Maybe you did them in the past and they didn't work?

[EAMom]

Joan so sorry you are going through this. Have you tried any steroids? Maybe you did them in the past and they didn't work?

 

I was thinking the same thing, but then saw the note about seeing the Lyme specialist...so I assume that she wants to make doubley sure Lyme isn't involved b-4 doing steroids...but how about ibuprofen?