Joan Pandas Mom

Try not to worry Tami, This disease is always 1 step forward, 2 steps back. The tonsils had to come out, you did the right thing. I know how hard it is, but try to remember healing takes a long, long time with PANDAS. There is a light at the end of the tunnel.

Dr. Daniel Geller (one of Sammy's Doctors and mentioned in Beth's book) with Mass General in Boston, is originally from Adelaide, Australia. Maybe he knows a contact there. Good luck and don't give up hope. My son stopped speaking and eating too. He is about 85% better now.

Hi Kara, How are you? I haven't been on the Forum in a while, but trying to get back. I know an acupuncturist from Worcester who would be willing to speak. Are you still looking for someone? quote name='KaraM' timestamp='1317657497' post='122460'] Hi, We will be holding our third or fourth PANDAS/PITAND/PANS support group meeting on Saturday, Nov. 5 from 1:30 - 3:00. If you are interested in joining us, PM or email me and I will send you the address. We are trying to line up a guest speaker to talk for 30 minuets or so. Potential speakers include a medical psychiatrist or an acupuncturist. Best wishes, Kara

Tears of joy here too! We are so happy for you and your family. God Bless.

Hi Stephanie. I'm there too with the PTSD. My son was doing great for about 6 weeks and I think I finally was able to "let go". I am struggling with depression and anxiety too. I'm trying to force myself to exercise and eat right. I'll let you know if I find anything that works--one day at a time.

We have gone to USF, Dr. Storch's program, years ago. They are excellent. It was before we were realized it was PANDAS so unfortunately the gains did not sustain for more than a month. Good luck. I'm sure you will see big results. I think the key is continuing with ERP daily (at least and hour a day) when you get home too. I noticed on the OCD Foundation website that Dr. Aldea is in Florida too. She use to be at USF but must have branched out on her own. If you can't get into USF, Dr. Aldea is great too. Best wishes for much success. Lynn, I don't know anything about Mayo, but 5 days seems too short of a time frame. We were always told we could do 5 days as a booster after completing a 3 week course. Maybe it depends on how severe the symptoms are.

Thanks everyone for your support and encouragement. Tpotter, I thought about repeating Titers since he as improved so much but never got around to it before the IVIG last Thurs. and Frid. It would be interesting to know if the are now normal.

Hi Nancy, I forgot you son was on 75 mg Zoloft too. That is interesting. I'm not sure what the Namenda is doing. It was added on the 4th week and he was already doing pretty good. Dr. J has about 100 patients on it and it is helping some with OCD symptoms. How are things there?

Hi Everyone, I have been thinking of all of you often, but have been so busy I haven't had a chance to write. Thank God I have good news. Some of you know just how sick my 16 yr old son was last year. PANDAS was suspected at age 10 by pedi in NH and Boston Childrens in 2004 with the sudden onset of OCD and Tics and + strep culture and elevated ASO. Syndenhams was suspected too and he most likely had that too. It has been a LONG, LONG six years of seeing many experts and specialists. We traveled to CA, FL, IL, MD, MA, CT, etc for various treatments and therapies. In 2004 DS improved within 10 days of original abx and was left with OCD severe and incapacitating many times. We treated it as OCD until Oct. of 2009 when a friend told me about the "Saving Sammy" story on the Today Show. I immediately took him in to pedi and sure enough titer was 1014. We started Augmentin 7 weeks, had T&A, intensive outpatient ERP therapy (again). He had been on numerous abx's over the year and a half. In May of 2010 we have first IVIG without any improvement, In Oct. 2010 had second IVIG, Dec. 3rd, and 2 others up until March 2011. We did not see any improvement from IVIG alone. We started to see improvement in April, 2 weeks after entering the OCD Institute at McLean in Belmont, MA. DS was there for 5 weeks. He worked very hard with the ERP. The staff and facility are amazing. He was completely incapacitated before going there. He was so very sick. He had been out of school all year, tortured by OCD every second of every day. We started to see improvement within the first two weeks there. After 1 weeks at OCDI, DS's Zoloft was increased from 25 mg to 50, then week 2 to 75 where he is now. He is also on 15 mg of zyprexa, which he was on for 2 weeks before entering OCDI. He was on 10 mg of zyprexa for about 5 months before the increase to 15. He started his Augmentin day one of OCDI too. He was doing great and a new med Namenda was added on week 4. He came home 2 weeks ago today and is doing so GREAT. He is about 80% better. I don't know if the IVIG set the stage for DS to do the work he had to do there. We are having IVIG #6 right now as I am writing this. I am very worried it is going to rock the boat, but I'm worried if we don't do it he will relapse with the next exposure. It is so hard to know the right thing to do. My feeling is that IVIG may have set the stage for everything else to pull together. I don't feel DS would have gotten better with IVIG and Abx alone. I feel the PANDAS and severe OCD needed to be treated and that there are different treatments and meds for each. Please don't give up hope. It takes so very long for healing with this illness. Lots and lots of prayer, treatments, experts in the different fields and perseverance.

Thanks Nancy. That is really nice to offer to bring us lunch. It would be great to meet. I would do that, but I'm looking for somewhere right in Boston or 15-20 outside Boston. I'm having a scheduling/time frame problem.

I haven't been able to post, but will be soon. I hope everyone is hanging in there. Does anyone know of an infusion center in Boston or surrounding towns? Thanks so much for any input.

I think your box is full now! I just tried to PM you.

Hi, I'll empty some now.

Hi Kara, We saw Dr. Leon Hecht in Portsmouth, NH a few times. He is a ND and LLD. We still don't know if my son has lyme. The last time I saw him he ordered more labs, but DS got so severe I haven't had them done yet. He was featured on NH Chronicle last summer with some of the other LLDs. Good luck and I'm happy you are getting some answers.

I'm sorry you are going through this Wilma. I agree with Worried Dad, try not to wait until it is an emergency. I did wait and it was horrible. I agree with Amy S too, when a child is really sick with PANDAS, don't try to travel. My son begged and pleaded to go to St. Lucia. He wanted some sun and fun after being stuck in all winter. We took him to St. Lucia in the beginning of March. It was a nightmare. I can't begin to tell you how stressful and horrible it was. I will never travel with a sick child again. Good luck with your appointments and I hope she can hang in there until you get there.

THANK YOU SO MUCH FOR THIS. We just had our 4th IVIG. The 4th was at 2g/kg. The first 3 were at 1.5g/kg. We are scheduled for the 5th in a few weeks. We went 5 years untreated. My son is now 16. I am hoping the more frequent IVIG's (every 4 weeks), 2g instead of 1.5/k work.

Dedee, what is the real fix Dr. M was referring to? We went to their 2 week program in 2008 and again in Feb. 2009. They are excellent. We were not on the PANDAS track then, so we unfortunately didn't meet Dr. M. Their CBT and ERP helped relive my son's severe OCD for about a month. I suspect he got reinfected when we returned home and he stopped doing his exposures.

We are in a similar situation. My 16yo son's PANDAS was left untreated for 6 years. He did have very, very short periods of remission throughout the 6 years. We are now treating aggressively with HD IVIG. I let you know if we start to see improvement.

Pandas16 what do you mean you needed multiple procedures as a child? Multiple IVIG's?

I think with Dr. B. it was 279.04 or 279.06. Good luck.

Hi Kara, We live 2 hours north from you, and the ENT that removed my son's T & A didn't know alot about PANDAS, but has heard of it and was willing to remove T&A. When he did, he discovered "Puss and Gravlely tonsils". He was "surprised" the tonsils didn't give him more problems. I love what Peglem said when I posted this back in Dec. of 2009. "Like PANDAS symptoms were not enough of a problem?" If you have a problem finding an ENT please PM me and I will get it to you.

Thanks for the help guys. I tried to put my foot down. He said he didn't know when or if he could start treatment then. Now he is saying he will take it Sat. night when we arrive. Oh, I hope he sticks to that. Two more days. We are going to St. Lucia. I looked up Saint Lucia, it was named after St. Lucy. She is a patron of eyes, a few other things and throat infections.

I think you are right about trusting the OCD more than trusting anything else. It is his constant companion. I tried telling him tonight that OCD isn't his friend. It is trying to hurt him by convincing him not to take his meds. He still is stuck on starting it after we leave. Hopefully he will. Hi Vickie, he is 16. I tried that too and he won't budge. I explained to him that if he goes unprotected without abx he could end up staying like this for a long. time. I reminded him how bad he can get and how long it takes for the body to heal. He is or OCD is so stubborn.

Please don't worry about brain damage. She is still so young. I know how hard it is, but try to take one moment at a time. Whenever your mind goes to the future, brain damage, resisting treatment, etc. stop it in it tracks. Focus on her getting well and staying well. She will. You have lots of time. Where can I get the autism one conference DVD with Lynn and Dr. B?

He might take it Sat. or Sun. OCD has a certain date and he won't tell it to me. I told him he really needs the protection from strep on the plane, but he won't budge. I might just go and hope we can get back early if things get worse (oh, that is a horrible thought). I am planning on taking a few different kinds of abx with me. He is refusing to do any ERP either. Gosh, I hate this disease. It seems every where I turn, I hit a wall.