Joan Pandas Mom

Thanks for this. You are right. I pm'd him over the summer. He was very helpful and encouraging. It is so hard right now. I feel like I should take him to the Hospital for sedation. This is so awful. His son saw best improvements after family was treated for high titers and 2 ivig's fairly close together. What pulled it together was Sammy dose Augmentin (which my son started again about 4 days ago.) We have IVIG #2 next week. I personally feel they were scheduled too far apart. Oh well, we are all still learning.

My son is opening and closing (slamming doors) for last 10 minutes. He is screaming out in frustration. This is 45 minutes after 1.5 mg of Clonazepam. I am in living ######. Is IVIG #2 really going to help?

Colleen, in case this hasn't been mentioned, PLEASE have your sons T & A biopsied. I didn't think to have that done. The ENT said he could almost guarantee there was strep still in there (although his culture was negative a few weeks before and he had been on abx at least a couple of months by that time.)

Changing your toothbrush is a good idea. Change your toothpaste too. I buy the little travel ones and so they are thrown out pretty quickly. Your son CANNOT go off antibiotics. You need to see one of the PANDAS docs here that know what they are doing ASAP. My son was treated with a 10 day course of abx when this nightmare started. He got a little better for a very short time then it started in again. We were not sure it was PANDAS then, not enough was known, this was 6 years ago, so the initial prescription took enough of the horrible PANDAS symptoms away that we were left with what looked like ocd. That became his diagnosis from then on, ocd. You have to keep him on abx at least a year for recovery.

Thanks Peg. Have you or anyone else here added abx with exposure in the house? I am going to ask Dr. B's office tomorrow, but just curious in the meantime. He is currently on 1000 augmentin xr twice a day. I started my older son on biaxin until I can get a hold of his dr. He, older brother, went to get checked out a week ago Sat. because I was worried about his cough. Dr. said it was allergies. I didn't ask for strep culture because I knew he had had the ASO the day before and we were just waiting for the results. It makes me realize I need to do a much better job of educating pedi about PANDAS. When there is a coughing, congested sibling in the house run the cultures, titers, etc.

We are going to the 5:00 Mass. Prayers coming your way. Hang in there Vickie.

We are in the middle of a HORRIBLE exacerbation here. We got results this morning. DS older brother's ASO is 244 range being 0-200. Mycoplasma IgG 415 range 0-99. Why do some PANDAS Docs treat IgG mycoplasma and others treat ONLY if IgM is elevated? We are having IVIG late next week. Is this too close? How long does it take for abx to work on older brother?

My son just turned 16 last month. He is 6'2" and 165 lbs. He has had this for 6 years. He was a great football player until this illness took it away from him, together with attending school anymore. He has been too sick over the last two weeks and has been sitting on the couch most days. At times he has really resisted treatment too. I had to bribe him to get his T&A. I recently had to tell him that if we don't get this under control soon, this could cause permanent brain damage. I know his might sound awful, but it did help him to press forward with treatment. Good luck and if we can help in any way please let us know.

Thanks so much. I got him in to psyciatrist today too because I was so freaked out by the EXTREME anxiety. I thought I was going to have to bring him to the hospital for sedation at one point there today. You think I would be use to this by now. Psyciatrist recommended foregoing the Zyprexa and giving him 1.5 - 2 mg of clonazepam every 4-6 hours to get him through next week and see if the IVIG gives him some relief. I gave him 1.5 mg after I had it filled and he is doing a little better. I was giving him 1 mg occasionally before and wanted to go up on it my he wouldn't take it. I also gave him 3 advil, I will try to get 3 more into him before bed. Next week can't come quick enough. I would guess his YBOC is about a 38 right now.

I think you are right. I am really starting to panic and grasping at anything I think might work. It probably is best I wait until 4-5 weeks post ivig and if things don't improve consider it then. His compulsions are so intense. To watch him scream out in frustration and at times in tears, at times slams things, punched things, I feel so helpless. I have been giving 3 advil once a day for about 4 days. Should I increase that?

I thought Zypreka because Sammy was on it. Is it ok to take with Prednisone? He is suppose to start the prednisone Tuesday for upcoming IVIG.

I just asked Dr.'s office. They need the results to determine what type of Gaummeguard they give. It doesn't have anything to do with his immunity, what I was thinking. Thanks though.

That is awesome. I'm glad they are slowing it down too. You must feel better. Good luck for continued healing.

I talked to his office yesterday and they said it would be ok. It is so hard to figure all this out.

My son's Immunoglobulin A Qn, test came back 92 with reference range 61-348 IgA, Subclass 1 57.3 LOW range being 58.2-263.5 IgA, Subclass 2 7.6 LOW range being 12.2-140.7 What does this mean?

Would or has anyone used Zyprexa during IVIG. We are having IVIG #2 next week. I want to start Zyprexa thinking it might help a little. My son is soooo bad right now. Has anyone tried that while having IVIG. I probably should 3 - 4 wait until weeks after IVIG but not sure. I'm getting desperate.

I wouldn't do it.

I get it now. Sorry for the stupidity here. Anyone else have horrible brain fog these days? Overload! So, why are our kids getting only 1.5mg?

So if it's 1mg/kg/day are our kids getting 1.5mg/kg/day making it 3 total? I don't know how this works.

I'm wondering if I should push for 2 since 1.5 wasn't very helpful.

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

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?

Does anyone know if Dr. Swedo do 2g/kilo or 1.5? If she did do 2? Why are our kids receiving 1.5?

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.

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.