Kathy4Him

My son was taking the pearl probiotics and after 2 weeks or so we noticed tics...lots of them. I stopped the probiotics and after a week the tics stopped too.

Kara...thank you so much for sharing! So happy for you and your family!!! Just love the praise reports.

Please stay away from tanning beds!!!! As the wife of a stage 3 melanoma survivor I can tell you that your child does not need an added problem> Tanning beds are not healthy no matter what anyone says. Sunshine 20 min a day 3-5 times a week is the best way to get vit D. Otherwise low supplementation is the best way to start because too much Vit D can also be a problem. Don't mean to get carried away but just want you to be careful/

Oh...so very sorry, I will be praying for her today that she will be able to eat and drink without being sick. Will keep her mom in prayer too!

Just FYI: I looked up the ingredients in Florastor and did some further research. If your kids are taking anything to suppress their immune system, FLorastor may not be a good idea for them. I was considering trying it until I read the following. Because my son is on Cellcept and immunosuppressant and prednisone, it is not recommended. Weakened immune system: There is some concern that critically ill people, people who have a weakened immune system, and people who are taking medicines that alter the immune system might have an increased risk for developing a yeast infection that spreads to the bloodstream and the rest of the body (fungemia) if they take Saccharomyces boulardii. Although Saccharomyces generally doesn’t cause disease, there have been numerous cases of fungemia following its use, primarily in people with a weakened immune system.

1 tired mama This is what we bought and used for a while...it works to put on weight and muscle GNC Pro Performance AMP Amplified Mass XXX With water 750 calories, 1000 with milk. Even if he could drink a half of a glass several times a day. We were desperate and this did help. Our son was 20 when he was drinking it. He had lost 25 lbs. You can check it out and order it online. GNC

Megan, 3 seperate rheumatolists at 3 locations did bloodwork. ANA titer was high, Anti RNP strong positive, as well as physical symptoms. Yes it was wonderful and we thought we were done with autoimmune diseases. oh well...not so true. but he did get 10 years of good health before this PANS/PANDAS attack.

Megan, I would get an appt with a pediatric rheumatologist. When my son was 9 he had joint and muscle pain and distinctive rash. Our Dr. sent us to ped. Rheum. who diagnosed him with autoimmune disease JDMS. Interestingly enough, in 3 mths symtoms went away BUT now he has PANS/ PANDAS. With joint pains, I always think rheumatologist is the way to go.

Sorry for this quick reply but look up Saint Vitus Dance also known as Sydenham's Chorea. My son had similiar movements Dr had me video when I could. The movements could be result of strep is what Dr. told us.

Our kids are going to get better!!!! 100%...hold onto that!

i just looked at photos and a desription of PR. Sure looks like what he has. Thanks for sharing as I have never heard of it and will be sure to ask Dr.

i'm thinking it could be from a virus. Sure hope the dermatologist can shed some light on that tomorrow. How are your kids? I think about them often since they are older like my son.

My son has a rash all over his back. The spots are raised red spots that look like pimples. He had this once before in 2010 and the only med he was on was an ssri. I noticed today the rash has returned. He is taking zithromax, prednisone, and cellcept. I am wondering if anyone else has dealt with this. We have an appointment with the dermatologist tomorrow and with his rheumatologist. Thanks for any help/advice/ideas you can offer.

If he will drink smoothies, GNC sells a type of weight gainer smoothie that at one point in 2010 was the only thing our son (ate) for 7 mths. I had his Dr. and a Dietician check it out, they both said it was fine. He was getting about 2600 calories a day drinking 3 a day. Not a great diet but it kept his weight up and kept himout of the hospital.

Pow wow...I sent you a pm. Let me know if you do not receive it.

My son has finished 3 weeks on cellcept and started week 4 today. Dr. started him on 500mg in morning. 2nd week he took 500mg in morning, 500mg in evening. 3rd week he took 1000mg in morning, 500mg in evening, and today he took 1000mg in morning and 1000mg in evening. He will remain on 2000 mg for at least 90 days provided he can tolerate it. His Dr. uses it for autoimmune diseases/illnesses. It does take a few weeks to months to work. He is also on prednisone and zithromax. Please feel free to pm me if you have questions. Kathy

Please don't wait. I too was given a steroid burst for my son in 2009. This was 3 yrs before I knew about this forum. I never gave it to my son because I was afraid of the side effects. He is now beginning his 4th week of tapering from 60 mg prednisone to 40 to 20 to 10 today. Yes I was worried when we started but trusted our Dr. knew what he was doing. First week was fine, 2nd week saw increased anxiety, but the good news is it is helping. In retrospect, I wish I had tried the steroid burst in 2009. His anxiety began to slow up last week.

Child & Adult OCD Treatment Program, University of South Florida Program Director: Eric A. Storch, PhD Contact: Eric A. Storch, PhD USF OCD Program 800 6th Street South 4th Floor North, Box 7523 St. Petersburg, FL, 33701 Phone: (727) 767-8230 Fax: (727) 767-7786 E-mail: estorch@health.usf.edu Website: health.usf.edu/medicine/pediatrics/rothman/index.htm Detailed Program Description Program Summary:Intensive Treatment Program ■ Separate tracks for adults, adolescents (13-19) and kids (2-12) ■ Length of the program is 3-10 weeks ■ Daily, individual, 90 minute sessions ■ Total capacity of the program is 75 Traditional Individual, Outpatient Therapy ■ Frequency of visits, length of sessions, and length of treatment are all individually tailored to the needs of the client. ■ Separate tracks for adults, adolescents (13-19) and kids(2-12) ■ Average length of the program is 12-14 sessions (but can go longer) ■ Once to twice a week individual, 90 minute sessions ■ Total capacity of the program is uncapped Insurance companies we accept payment from: BCBS, United Health Care/United Behavioral Health, Champus/Tricare Standard, Aetna, Humana, Commercial Insurances, and Medicare (among possible others.) We offer a discount for self-paying.

The Rothman Center is at the University of South Florida All Children's Hospital in St. Petersburg, Florida They are listed on the OCD foundation site as one of the outpatient OCD clinics in the South. Director Eric Storch is over the cognitive behavior programs. Dr. Tanya Murphy, is a leading PANDAS Dr./researcher at the Rothman Center.

rsuggs...So sorry you are dealing with the anorexia at such a young age! My son had just turned 19 when his symptoms began. The first 2 symptoms were abrupt onset ocd and anorexia/severely restricted eating. They both took us by surprise as he had never had either before and he loved to eat out with us all the time and would eat anything I cooked at home. He was never overweight to begin with because he was a tournament tennis player so maintained his weight around 145-150 lbs. He very quickly lost 10 lbs and has been as low as 118 lbs. It has been a scary struggle to battle the eating issues along with the ocd. Unfortunately, we began to accomdate his "rules" concerning food as you do what you have to do to keep them out of the hospital. We have had some great Drs in the last 2 1/2 yrs to help with monitoring him. He has been on several "crazy" diets including 7 mths of drinking high protein shakes 3 times a day with no solid food. Currently and for the last year he eats only 5 things and will only eat at certain times. It is hard but we manage and he is up to 135 lbs which was an avg weight for him when he was playing lots of tennis. I hope you can find some things your son will eat and know that you are not alone in this battle. Kathy

I am so sorry! It is hard enough to go thru this then add in the expense of treatment and it is overwhelming. I want to share the approach our Dr, a Rheumatologist is taking. He treats autoimmune illnesses all the time. He has thoroughly researched Pandas/Pans and feels he has chosen a good treatment plan. I might add his wife is a Chemotherapy Pharmacist. My son is 23 so a bit older than most, we have been dealing with this for 4 1/2 yrs but even as a youngster had multiple streps/sinus infections. So treatment is this: Cellcept...an immunosuppressant 500mg 1st week 1000mg 2nd week 1500 3rd week and finally 2000 mg 4th week. This will continue for at least 90 days Prednisone 60 mg 1st week 40 mg 2nd week 20 mg 3rd week 10 4th week and finally 5 mg for the remainder of 90 days zithromax 250 mg everyday (he is allergic to penicillin, augmentin and keflex) The goal is to suppress his immune system so that it will stop making bad antibodies and reset. He also recommended IVIG one high dose to be spread over 5 days but so far our son is refusing because of the "donor" antibodies. The Dr. believes treatment may work without it. We have also consulted with another Dr. Internist and medical teaching Dr. and he agrees with this treatment. I say all of this to tell you the meds cost less than $125 for 90 days. It is slow, it is risky, he will have labs done every 2 weeks because of the cellcept but if it works it could help so many families who cannot afford ivig. Prayers for your family!

Oh thank you so much...just shared with my son. So encouraging and I am so happy your children are doing well!

My son did wean off prozac last year. He was 22 yrs old. He was taking 40 mg. We went to 30, then 20, then 10, then 0 over about 6 mths. According to his Dr. it takes 21 days for prozac to get out of your system. At about the 15-20 day mark after he was totally off, he had a really hard time. Stopped eating, high anxiety. Quite frankly I think it was withdrawal from the med, but you will hardly ever find a dr to agree with that. Eventually we had to put him back on it. We have just completed another withdrawal from 40mg to 20mg, at about day 24 and seems ok. A few days were a little rough. I really think if you hang in there and allow time for her chemicals to balance she will be fine. I really dislike these meds!

My DS 23 was supposed to have IVIG last week, Nov 12. but had a severe panic attack over having donor antibodies put into his body. Needless to say, he has not done it yet. If your children have done IVIG with success can you please post stories so I can show him. His counselor thinks it will help him to see positive results in others. Thanks so much! Happy Thanksgiving. Kathy

Praying for her and for you too. Hugs