jyl

Angela Shaw....Have you seen any improvements??? Came across this old post???

- From: jylmary <jylmary@aol.com> To: Rachel.kuschner <Rachel.kuschner@Yale.edu>; nurses <nurses@advanced-allergy.com> Sent: Fri, Nov 25, 2011 7:54 am Subject: Study recruits-spoke to Dr Leckman MEDICAL EMERGENCY My son is 19 and suffers from PANDAS since age 6. The past month out of nowhere his symptoms are debilitating. He was in psychiatric unit, and no other hospital would take him due to PANDAS. HE is now out, with horrific tics-his tics were always mild. He is on psychiatric meds, and before had 2 IVIG treatments. He needs them more frequently , according to the doctor who was treating him. The doctor will no longer see him now due to missed appointments, when he was still in denial about his disease. Upon release from the hospital he had to stay at the shelter, since we couldn't trust he behavior. He is back home now, after us getting one look at him, his tics are shocking and he can barely function. His head is jerking back, arm thrusting, and leg kicking. He realizes now that he needEd to succumb to this illness. He is begging for a treatment. He is on the antibiotics and steroids for weeks. The insurance will was approved. He has a supportive family and girlfriend. He begged us to come back home, and when we saw him, we were devastated last night. THE NEXT STEP WILL HAVE TO BE THE MEDIA! How can health professionals turn their back on someone? Please let me know if you can help us. Jyl Gallup

Thanks Lynn-I'll give it a shot!

My ds18 had his first 2 IVIG treatments last week with Dr. B. No significant news yet to report-which seems typical-one day at a time. Soooo glad no bad side effects though. I am -along with an outpatient program-trying to find a therapist/psychiatrist in Fairfield County/Satmford that treats PANDAS, or at least uses cognitive behavioral therapy-which seems to be reccomended for PANDAS. Any and all suggestions are appreciated.

My ds-18 (!) is getting first IVIG next week. It took so long for insurance to approve, etc. He has done 2 different rounds of antibiotics and steroids-dramatic improvement both times. He was actually diagnosed correctly (AMAZING) by ped neurologist at the end of kindergarten, but was never treated correctly. At the time, they treated with antibiotics until culture was negative, and the bloodwork was never checked again! I was always told there was no treatment except tenex for tics, and tried different ADD meds which always made things worse! It wasn't until I read Saving Sammy until I begged our family physician to do the bloodwork as described in the book. Sure enough.....1300 Dnase-the highest the lab goes. I was heartbroken and excited at the same time to think there could be an answer that would improve his quality of life-and ours! I was lucky enough to find Dr. B. in our immediate area, and we did a round of antibiotics and prednisone. We noticed a difference in personality right away. He, however, did not believe us, and being really oppositional (had become a way of life) refused to take any more. More heartbreak!!! After recent knee surgery and vicoden became raging etc. and ended up in the hosp. (mental health unit). He has now thru the grace of a definite higher power and/or listening to therapists been on antibiotic and steroid. He is better than we've seen in years. IVIG is scheduled for Monday. Any advice or comments are welcome. I wouldn't have even found the wonderful doctor if it wasn't for this forum!

I am wishing we could have a brain scan done to actually see what's happened/happening since my son was left "untreated" for the past 10-12 yrs., even with the correct diagnosis of PANDAS so long ago-how sad is that" Is it typical for the "good" doctors to order one? Do you think I would have any success if I ask the doctor (B. - Ct.) to order one?

Thank you for the article-I'll check it out. His prescription was for 10 days. Yes, he's worked hard to lose a lot of weight, so that's a problem for him.

Yes, you and I know short-term shouldn't affect his weight, but it's a huge issue for him. Around 2 1/2 years ago, he lost about 75 lbs by working out, and compusively watching every crumb he put in his mouth. He's now 6'3", and his hard work has paid off. He won't touch a medication if there's even a chance of gaining weight back. Being overweight was also a huge source of pain for him-besides dealing with the panda. I wonder what dosage of ibuprofen you would have to take. Perhaps I will ask the doctor tomorrow. Thanks for the reply!

I gpt the same error message (?)

The older they are the harder it is!! My son is pretty cynical as far as accepting all these problems as a way of life. Poor kid, has been to SO many (ineffective and disbelieving ) doctors-he can't possibly grasp the tremendous hopefullness I now have. (Too young, and tired of talking about it.-17yrs. old) I am amazed that I even got him to our first promising appt. in 10 years. Dr. B. is as nice as everyone said..and told me my son's antibodies are probably the highest he's ever seen. Now for my new problem. my son has been faithfully taking the antibiotics-thank God! He took the prednisone for 2 days, and then must have read on the internet that it has a side-effect of weight gain, and refused to take it without talking to Dr.(he likes him-another thank God!). Now he wants to wait till our next appointment-tomorrow. I did leave a message to tell Dr. about it. My son is very into working out (hours a day-OCD) and natural foods. Come to find out he is taking caffeine tablets to get more energy for workout-which we told him really sets off symptoms. So...........1 step forward, 1 step back. What exactly does the prednisone do for the healing preocess? I know it's used a lot, and wish there was something he could take in place of it!!

Hi, we see Dr. Bouboulis. His number is 203-655-9904 Darien, 203-323-7744 Stamford (he has two offices.) How far do you travel? We live in Stamford..I can't believe I stumbled across this name-I was ready to go to Manhattan or even Maryland!! I will definitely contact him tomorrow-I pray that he accepts Anthem BCBS as payment (once it's approved). How long have you been seeing him? We have been seeing him since July 09, consulted with him prior to doing ivig with Dr. K, and have seen him for susequent treatments. We were referred to him after seeing Dr. Leckman at Yale and were one of his early Pandas cases. You will really like him, I'm sure. PM me if you'd like add'l info! Best of luck! Thanks so much!! I'm not sure what PM means Also, my son's DNase is 1360 (?)

Hi, we see Dr. Bouboulis. His number is 203-655-9904 Darien, 203-323-7744 Stamford (he has two offices.) How far do you travel? We live in Stamford..I can't believe I stumbled across this name-I was ready to go to Manhattan or even Maryland!! I will definitely contact him tomorrow-I pray that he accepts Anthem BCBS as payment (once it's approved). How long have you been seeing him?

I am looking for a doctor that is willing to treat my son with antibiotics and/or IV exchange. He was first diagnosed with PANDA 10 years ago. There was never any medical followup bloodwork, antibiotics, etc. Now, after reading Saving Sammy by Beth Maloney, and more current research, I am realizing there may be a way to help him! The origianl pedi-neurologist says "it is not their protocol to treat with antibiotics, etc., and peraps I want to go to someone ho specializes in this"! OMG!!! scary stuff! I noticed the name in your post, and Darien, Ct. is the next town over to us!! I was ready to go to either NYC to a Dr. Hollander (suggested by Beth Maloney)