Kathy4Him

Please add Kathy and my son Austin to the list too. If any of you are on facebook, I started a private group in September 2013 called Pandas Parents Unite in Prayer. Please msg me on facebook if you would like to join it. Kathy Noel. We currently have 162 members and they are praying moms. We post prayer requests, scriptures, encouragement daily. It has been the best source of help for many of us.

I am finding this discussion so interesting because for several years my son has been low on D and drs prescribed high amounts 5000-10,000 iu a day for 3-6 mths. After a few days on these doses he is worse and I stop it. We have tried many times with the vit D and it always seems to make him worse but Drs do not agree it could be a problem. I definitely think he cannot tolerate it.

thanks for sharing!

My son's dr. just called and he is going to add another med to Zithromax. He currently takes 500 mg of Zithromax. He is 24 yrs old weighs about 130 lbs. Dr. is considering doxycycline or rifampin. And we really do not know what we are treating for sure. Any experience with either combo? Thanks!!! Kathy

My son experienced this for 6 weeks in the fall 2010 before I knew about this forum or too much about pandas much less lyme. Drs never thought much of it, but I kept a journal of temp. Everyday it would go up between 99-101. It always came back down. After about 6 weeks it stopped. He also had some trembling in his legs during this time period. Dr. thought restless leg syndrome but we didn't know what it was. Seemed like a seizure.

Cellcept is an immunosuppressant drug. Our rheumatologist uses it quite often to treat autoimmune diseases. The reason he picked it for my son was that it is used in kidney transplant patients and in his research he felt some of the same medical reasoning for using it for transplant patients fit some of the things that lined up with pandas/pans the whole autoimmune illness. He and we met with another Dr. one of the professors in chg of the med school and an internist who spent hours pouring over our son's records and the 2 drs felt our best chance at beating this was to suppress the immune system with the cellcept and methylprednisone while using abx and the ivig at the same time to inject new antibodies into his system. Drs wife is an oncology pharm D and she agreed with treatment. It was a great plan and all supposed to start the same day. Only problem is our son took all meds but would not leave house to get ivig and later that eve told the sweet nurse who came to talk with him that he did not want donor antibodies. What the Drs told me was that without ivig it could still work but would take 1-2 yrs. The cellcept caused our son to have major fatigue and after 5 mths we stopped it. The plan was to start back in a month but cannot unless he does labs. You have to watch the white cell and platelet count closely. Hope this helps.

Surfmom, I am so glad to hear this. My son was on cellcept for 5 mths: 2000mg a day and pred and zith. We had to stop treatment because he was so fatigued. Dr. wants to start back but my son will not do blood work (ocd thing I am certain) so dr says it is too dangerous. We were doing labs every 2 weeks. Also my son refused the ivig...so sad because we had it set up. Please keep us posted on cellcept. Our Dr had thoroughly researched and felt it was best immune drug to treat.

IgeneX tests for lyme For those of you who have done this test, can you please tell me which tests I should order. I have ordered kit, his Dr is going to test and want to make sure we do right ones. The Complete lyme test is one but what about for co-infections??? We know when our son was 7-9 he was bit by ticks in Arkansas...Petijean and Degray Lake. Thanks!!!! Kathy

Hoping you can help advise me

teechamp, our dr gave us an rx for amantadine but we have not tried it yet. It is an antiviral. Are you using it?

Our son who is now 24 had high AST and ALT triple what they should be for over 2 years. He had two liver biopsies done during this time. Dr. put him on 60 mg steroids for 1 week 40mg for 2nd week and enzymes had cut in half. After 4 weeks they were normal. Dr felt there was inflammation in liver. Both biopsies did show dialated sinusoids. (cause unknown) We saw the chief of hepatology at Tulane Medical Center who told me liver enzymes can go up in the thousands and liver is still ok. He said sometimes meds can cause the increase. He was really not overly concerned.

My son's behavior has gotten worse over last few weeks. Seems more depressed, doesn't speak so doesn't complain, eyes have that far away look. I noticed today his pupils are dialated. Any theories on this? Meds include: 500 mg Zith 25 mg luvox once daily 5 mg buspar twice day 500,000 units nystatin twice a day Lemon Balm twice a day 300 mg Omega 3 Magnesium Optimag 2/day Thanks, Kathy

We use optimag also

No ideas but wanted you to know I am going to be praying for you! So sorry you feel so bad, but I am glad you are reaching out to this group too.

Praying for you and your son! wisdom for drs peace for you healing for your son