Joan Pandas Mom

We must be on the same wave length! We are going home tomorrow on the redeye. I decided to take Wed. to rest and get caught up on mail, BUT Thursday I'm starting. My plan is to wake up 45 min. earlier and exercise .I don't feel right and have definitely ignored my health. Dr. K said PANDAS parents always look so tired. I know I have aged A LOT over the years.

There are a few natural anti-inflammatories too. I will get the name of one we got from our Lyme Doc. we saw. It has tumeric, rosemary, green tea and a few other natural anti-inflamatories. I am concerned about the green tea in it though. I don't know if it has caffeine. I definitely don't want to give my son Caffeine! I need to calm his brain, not stimulate it!!!!

Lynn, Good luck with your treatment. My sister-in-law had undiagnosed lyme for many years. The 3 months of treatment were tough, but she is doing great now. I have and have had the symptoms you described for many, many years too. I have had to put them off too, but after reading your post, I'm going to get on it. Keep us posted if you can. Best wishes for health very soon.

How do you know if there is an immune deficiency? What are the tests? I think we probably had them done, we are still in Calif. for ERP so I will need to check when I get home.

I'm so happy to hear she is 9*%! A huge YAHHHHHH! Thanks for the update. It helps.

My son will be starting school (hopefully) in three weeks. I know they test all the kids for TB. Do PANDAS kids react to that test like some do to the flu mist? My son will NOT be getting the test, but is he at risk from others getting it?

I know Dr. Tanya Murphy is in St. Petersburg, FL. Also, my son didn't have any strep symptpms, but his pedi had just heard of PANDAS (2004 when this nightmare started) and did a strep test. My son had a + culture and elevated ASO. Your son could have had strep then without any symptoms like so many kids here. His ASO could have gone back to normal and something else is triggering an exacerbation. My son also had Mycoplasma Pneu. without any symptoms.

Hi Kim-- I just tried to pm you and it wouldn't go through. I will try again after treatment. Thank you.

Hi Melinda, Thanks for those words of encouragement. I really needed them this AM. Today is day 11 of treatment. I don't see my son putting in the efforts he needs to get better. It is really discouraging, but I am learning I can't control his actions. If he doesn't do the work I will have to accept it and go from there. We did see a Lyme Doc. but I didn't know we were suppose to wait at least 12 weeks post IVIG. We did the Igenex test at 7 weeks post IVIG, so we need to redo it when we get home. Right now he is on 500 mg Clarithromycin 2 x a day and 500 Augmentin. We are switching to Augmentin only in a day. Dr. K. wants to go to 500 mg a day, but I'm going to beg him to go higher.

Hi Pricilla, We did a high dose with Dr. K. on May 10th and 21st.

Has anyone else out there had VERY little progress from IVIG #1? Next week will be week 12. Do we need another or is the fact that we had very little help from it an indicator that it isn't going to work for us?

My son had low Ferretin too. Dr. K. told me to be careful with supplements too. I'm going to try to get it through diet more and I bought a cast iron pan.

We are 12 weeks post IVIG on August 19th. I wonder if Dr. K. is going to recommend another IVIG then. I'm curious because my son really didn't receive a lot of relief from the first one. It did get rid of the head tic, but OCD remained OFF THE CHARTS. I'ms wondering if because he didn't receive a lot of results that he might not recommend another IVIG. Are there others who didn't see a whole lot of results from ivig #1?

Hi Karen, We were able to cover my son's absences and tartiness through his IEP. About 4 days a week we were late because the compulsions took too long. The school also worked with me in regard to his homework. At times he would try for hours to complete an assignment, so when that would happen, he was graded on effort through my discretion. It helped a lot. It helped relieve some stress trying to get out the door, having to wait for compulsion after compulsion.

For those that have had more than 1 IVIG what time frame did you wait between the two? Thanks. Joan

Thanks Nancy, you hit on a few key things discussed here. One of the two psychologists we met with had/has PANDAS/OCD as a child. She told my son she hated summer break because it gave her too much time for OCD. She had to keep busy and the busier she got the less time she had for it. She also thought he didn't have ADHD, that is was the OCD getting in the way. It is so hard to tell. Does your son take any SSRI's. Mine stopped in Oct. of 2009 after I read Dr. Murphy's study. It is so hard to know what to do. Like OCD wasn't complicated enough without PANDAS thrown in!

Got a great laugh out of that. How true!

Does anyone know how Lauren Johnson is doing? I know she had 2 IVIG's and was doing well. I tried to e-mail her mom a while ago, but for some reason it didn't go through.

My son's PANDAS diagnosis was ? by pedi 6 years ago this September. It was dismissed by quite a few dr's since, including Boston Children's ER and followup with Neuro associated with BCH. My son had a physical 3 weeks ago with pedi. We saw his pedi about 4 months ago and I thought his pedi told me about another PANDAS patient in the same group of pedis and I asked him how that patient was doing today. He said it was another dr's in the group's patient and he thinks the patient is fine now. I asked how that patient was treated. He answered with monthly penicillin shots. Had my son been treated by the same pedi instead of referred out to a neuro, we probably wouldn't be here right now. How do these doctors say it doesn't exist when kids are getting better? Do they believe in Syndenham's Chorea? ARGHHHHH

My son had Mycoplasma without any symptoms. My sister-in-law had Lyme with joint pain but it wasn't diagnosed until she did the Igenex Lyme test. Sorry, not much help.

I know I have asked this before. Has anyone had any success with ADD meds? Dr. K wants to wait another 2 weeks, making it 12 weeks post IVIG to think about starting them. He wants to give the IVIG a full 12 weeks before introducing chemicals. He feels they might cause tics. I think he is right, but was curious if anyone has any success with these other than Sammy.

I can't thank you enough for these posts and encouragements. As all of you know it is really tough being away from home trying to conquure this monster ocd. I refuse to give ocd capital letters anymore! It doesn't deserve it!! He did seem a little calmer this AM. I asked the psychologist if we could cut back a little on the work. My son said his ear hurt him a little this AM. I am wondering between the exposure to the sore throat and ear pain if he is fighting another infection. Dr. K put him on 3 more days of Biaxin, 500 mg 2x day. Then wants to go to 500 mg augmentin. I love Dr. K. he is so smart and good, but I still ? his abx protocol. From everything I have been reading and so much help from everyone here, it seems like HIGH doses of abx work.

That is a great point Peg. We are out in LA doing intensive outpatient ERP and my son is really regressing today and tonight. I wonder if it is just too much, opening the BBB and autoantibodies are getting in starting this cycle over again. I'm wondering if we should just go home and rest. I'm seeing things I haven't seen before tonight. He never had the compulsion of flushing the toilette over and over. As all of you know the work is pointless if he is giving in to compulsions. This was the 8th day and he is now as bad as day 1.

All of you are so great. I just finished reading all the posts. I read them to my son. They help. One of the Dr.'s my son met with today had PANDAS as a child and OCD as an adult. She noticed she was having obsessions over the weekend and started with a sore throat yesterday. She also started an abx yesterday. Today was my son's first meeting with her. I met with her on Wednesday. She is excellent too. I wonder if the exposure caused a downturn in my son. Can it happen that quickly though--after a couple hours after we met with her he started on a downward spiral. Or, is he getting really exhausted from this very difficult work?

Thanks so much for the support. I think I spoke too soon though. We worked through the weekend and he was doing so good but, today and tonight are HORRIBLE. I feel like we are getting back close to day one of treatment here. We are in the same hotel room and he is trying to do his OCD exposures (writing) and he keeps flipping the pages of his notebook over and over and over. I am really starting to wonder if my son has permanent brain damage from untreated strep/PANDAS. I know that was mentioned on Mystery Diagnosis and Dr. K. briefly started to talk about it to me, but stopped. I'm wondering if that is what he is thinking.