Joan Pandas Mom

Did you ever do the Bicillin shots? I'm thinking of trying it for my son.

We have been to a few excellent 2-3 week out patient programs for OCD. They told us to STOP doing compulsions for my son. Once you cut one monstrous head off of OCD, another one quickly grows. I am struggling with this same problem right now too, but I am finding when I don't give in and wait out the screaming, crying and yelling, he will eventually fight and do it himself. I am still giving in to things that relay to his health, like food. He lost so much weight that I will still do compulsion to make sure he eats. Eventually, I will stop those too. Stay strong. I know it is torture to watch your child suffer, but eventually OCD will lose and your child will win. The OCFoundation has listings of therapist throughout the country.

Hi Wilma, I'm wish I could be of more help. My son was very hyper too. When this started he too would run around the house, constant movement. He was very active as a little boy, but this was different. I don't know the psych meds your child is on, but I think the meds Sammy was told to stay away from were the SSRI. Sammy was on 1 psch med throughout his healing process, Zyprexa. It helps control the thoughts. I can't find my book, but I think he was on a pretty high dose and it helped.

You are doing such a great job. God Bless.

Thanks for these guys. The LLD, ND we did see thought we should try a different abx approach, maybe bicilin shots with another abx. You think it is worth a try? My son was on augmentin and biaxin when we saw the LLD in July. He had been on a abx for 7 months prior to that apt. and still is (14 months now) different abxs. What is ART? The LLD we saw wanted to refer my son to Dr. J, but my son is 16 and Dr. J CAN NOT take anyone over 14 or 15. I might see LLD in CT too. The LLD we did see said he has never seen Lyme effect only the brain, but he never says never. Since then, my son has lost 14 lbs too.

My older son (non PANDAS) had terrible eczema. We used DML Forte cream. It really helped. Vasoline (jelly) with cotton or vinyl gloves helps heal and sooth too.

My son had the Igenx test done in Late July (7 weeks after his 1st IVIG). Another very knowledgeable and helpful mom on this site told me she would interpret the results as a positive. The LLD we saw twice did not rule it out, but didn't give a definite lyme diax. Any thoughts? IGG Results **23-25 kDA - **31 KDa IND **34 kDa IND **39 kDa - **41 kDa ++ 58 kDa + **83-93 kDa IGM Results **23-35 (all have kDa) - **31 - **34 - **39 - **41 - **83-93 -

Thanks for this--it is very interesting.

I just saw these last two posts. Thank you. I am realizing I can't do alone. I keep holding onto stories of other kids that were crippled with this too, but started to get stronger after 2 or 3 ivig's and abx to at least start the ERP work. He is soooo terrified of beginning it. I have called McLean. I am in the process of filling out their 30 or so page application. Part of me thinks an in patient program would be too traumatic, but the other part of me knows he is using me as a crutch. I have read about people that have gone for 6 week in-patient programs, some people twice, and it has helped them live normal lives. McLean has a 3 month wait list.

When do you say no to OCD's demands, get this do that, wrong cup get another one, turn on the tv, turn it off, then on again, on, and on and on. I'm really gong crazy. Am I making him worse? I feel like I am giving an alcoholic a beer every time I give in to a compulsion. He is 3 1/2 weeks post IVIG #3. He absolutely refuses to doing any exposure work.

When do you say no to OCD's demands, get this do that, wrong cup get another one, turn on the tv, turn it off, then on again, on, and on and on. I'm really gong crazy. Am I making him worse? I feel like I am giving an alcoholic a beer every time I give in to a compulsion. He is 3 1/2 weeks post IVIG #3. He absolutely refuses to doing any exposure work.

Merry Christmas to you. I am so happy you got IVIG quickly and the help you desperately needed. You did a great job. I hope and pray you will see progress every day.

I think once the immune system is turned on in these kids, it takes a really, really long time to turn it off. Dr. B. compared exposure to putting wood on a fire you are trying to put out. i wonder if she is reacting to your son's stomach bug. Does she react to red dye (in Azithro)? Good luck with this, I hope it passed quickly.

We are thinking and praying for you here too. I would fill it. Amox helped with my son with his 1st exacerbation in 2004. I hope this passes fast for you.

Stay strong. We are all thinking of you. I know it is hard to do, but while you are in the hospital, you have some help, please try to take advantage of the help. It's so hard to do alone at home. Hang in there. Things will get better.

Thanks everyone. I think that appointment scared him yesterday, he ate ALOT today. I am still doing alot of compulsions for him. He argues with me that it has only been 3 weeks from IVIG #3. Do you guys still do compulsions for your kids? Every ERP treatment that we have been to has told me not to do any more compulsions for him.

We went to Pedi yesterday. My son has lost 14 lbs. in 4-5 months. He is 6'1" and now weighs 147. What the heck is going on? Pedi ordered a few labs. Thinks part of the problem is missing breakfast (DS he sleeps until 12:00). I know he is eating less (OCD is very picky lately) but he isn't nearly as active as he use to be. He use to play football, basketball and Lacrosse when he was in school. He trained this summer. He probably would burn about about 800+ cal. a day. He has been inactive since I had to pull him from school in late September. Why the weight loss?

My son's handwriting completely deteriorated with his first exacerbation of PANDAS. Dr. Swedo noted it in her research that many kids had this symptom.

Yah! Keep it going! That is next on my list.

Thanks again for the suggestions and support. As I am writing DS is standing in almost a frozen position, he has been that way for about 45 min. now. It was 8 weeks since his second IVIG and I think he had a sinus infect. too. Maybe that is what is making it soooo bad right now. It was 5 months between IVIG # 1 and #2. I scheduled #4 for 6 weeks out, but now I'm wondering if that is too soon. I might have someone lined up for a few hours of help soon, BUT his mom told me he got strep a lot when he was a kid. Now I'm wondering if he is a carrier. I hope not, he is 23 and a nursing student. My son knows him a little. I hope it works out. His mom said they eventually discovered the dog had strep and that is why everyone kept getting it.

Thanks so much guys. I am going to look into these ideas. I have to do something, it can't go on like this. Fixit, I think you are right about the girl tudor! It might help him fight the constant compulsions more too! I'm going to really push the running or walking too, He wanted to do a dvd exercise program, P90X with some of his friends months ago. Maybe I'll get it and see if I can get him into it. We have to get out of this house--were both going to lose it!!!!

I'm sorry to say, it sounds like it might be back. My son had had untreated PANDAS for 5 years, very long story. We started treating PANDAS last Oct. with last huge exacerbation. I have recently been told by a PANDAS expert that had he been on abx long term then, when all of this started, this would be a different story today. If I had it to do over again, I would have found a PANDAS doc then, done long term abx, possibly PEX then definately IVIG. I was afraid 6 years ago when a neurologist mentioned possibly PEX or IVIG for severe cases of PANDAS. How I wish I had done those then. I hope this helps and good luck with everything.

Thanks so much for your compassion and support. Your posts brought tears to my eyes, (good tears!). Dr. B. gave us a script for Prednisone. He started it today to try to get the inflammation down in his nostril so it will drain. He is still getting a bloody nose daily, sometimes twice a day. I think the prednisone makes his OCD and possibly bloody nose even worse. I'm not sure if he will be able to take it. I am going to be withdrawing him from school this week and repeat his sophomore year next year. He has been out on a medical leave for about 10 weeks now and I don't see things improving enough in the next few weeks to return. I'm worried how we are going to fill the day. He is so active and athletic, but I don't want to take him into a gym or school to play basketball or work out--too many germs.

I don't know how much more I can take. We had IVIG #3 last Wed. and Thurs. My DS is in a FULL BLOWN exacerbation. He has been pacing back and forth in his room for about 15 min. trying to get dressed, opening and closing his dresser drawer, crying out at times. This poor kid is doing compulsions every second, all day. I am going to have to put an add in the paper for some help or something. It's too hard to do by myself. I know he is responding to my bad cold, possibly sinus infection. I had the green mucus and put myself on left over abx.

Has anyone noticed an increase in symptoms shortly after getting braces or a decrease in symptoms after removal?