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

Our son 24 started taking nystatin about a week ago. He is taking one in morning and one at night. 500,000 units. I have noticed he is getting a rash on his face. In addition he seems depressed, not his usual smiling self. Could this be from med. Dr. told me today she thinks it is a die off and a good thing. Thanks! Kathy

Yes, hubby is a civil engineer

I will tell my Drs theory. He is certain this is autoimmune in our son due to testing but told me a few nights ago: "I believe he has a bacterial infection in his brain" So who knows, I am like worrieddadnmom, don't really care about what word he uses at this point, just want my son to get better. I know it helps to put a name to it, but so far, dr has not been able to get specific about cause even after multiple blood/urine/scans/mris/and invasive tests. Well my uneducated self asks this question then if brain infection is not the same as auto immunity as you all point out. It is still infection that is affecting the brain. What came first? 1) the infection 2) the auto immune response against the brain due to the specific pathogen 3) the immune dysregulation from previous entrenched infections that leads to the auto immunity. http://www.epidemicanswers.org/epidemic/biological-dysfunction/immune-dysregulation/# Quite honestly, I don't care about the specifics of where we are at in the pathogen/immune response cascade to full blown Pandas. Maybe I should, but I still think they are really one in the same at the end result of neurological inflammation resulting in the ###### we all experience. Not trying to fight with the entire board, but I am trying to make the broader points and explain my rational (or irrational ) to all of this mess. Again, thanks to all the people continuing the dialog and helping all the Newbies.

My son has always excelled at math, even in college. Not only did he make A's in math but he loved it! Used to write theorems for his calculus ap instructor in high school, drove her bananas! Of course my husband and his dad are/were engineers. Go figure.

No tomatoes from me Nancy just an AMEN! While my heart hurts for this mom and her son, I was troubled from the start over the hubbub on FB linking pandas to such violence as my son is 24 yrs old and I would NOT want anyone to look at his diagnosis and think he could be capable of such a horrific act. My son has never been violent, never had rages, love the Lord, smiles all the time even while suffering thru this illness. On the day of his 2nd liver biopsy and heart cath, the chief of hepatology at the hospital told me, he went in smiling and came out smiling. With that said, we never allowed violent video games, tv shows or movies in our home...he never asked for them either.

Christian mom says you can help me find a good lyme dr closest to us. Please pm me so I can msg you or email you. Thanks so much!!!!

We have seen 2 different neurologists. One in the beginning just did mri, found nothing. The 2nd Dr. last year ordered spinal tap and mri, and lots of blood work which was different from anything else we had previously ordered. He found 2 arachnoid cysts on brain thru mri. He was from Jordan and said he learned about and treated pandas in his country before moving here. interesting...He worked very closely with our treating Dr to determine plan of attack for pans/pandas. I think it is easier for a neurologist to order mri of brain and spinal tap mainly done to "rule out" anything else. By the way, my son did CBT at Rothman in 2010. at the age of 21. 4 weeks did not help at all. At that time they were not interested in talking about pandas. I think much has changed now for the better.

New Chapter lemon balm. softgels in dark purple very small easy to swallow.

We are having great success with lemon balm also. New Chapter brand. It enabled us to get our son off prozac safely this time with no eating issues. The last two times we tried he quit eating. I can tell it is helping with stress. Not so much with ocd though.

Kara, I do not know much about lyme, we are treating pandas currently but feel lyme is a possibility although previous labcorp tests were neg. Something you said in this post caught my attention: that the lyme could be in cyst form. On my son's brain mri he has 2 cysts that they said were arachnoid. Wondering does lyme cause cysts in brain? Also remember urologist telling me he has cyst in kidney, this was after kidney stones. Thanks, Kathy