Joan Pandas Mom

Hi Debbie, Sorry to hear your d has suffered so long with this too. I am contemplating moving to the next step of IVIG too. It scares me though. My S is 15 and has suffered for 6 years with this. Why does Dr. K think the IVIG should be ASAP?

Those are great!

I didn't know Mass Gen. was affiliated with the PANDAS Foundation. I took my S to one of the Dr.'s affiliated with Mass Gen for his last exacerbation in October. I took him to that Dr. back in 2005, before I knew for sure it was PANDAS. Back in 2005 he did recommend that we check his titers again in times of exacerbation. Which we did, they were elevated twice, but I was told not high enough to warrant an antibiotic. I know it is PANDAS now. Anyway, knowing it was PANDAS this October, he suggest stayin gon the abx for 6 weeks and prescribed Prozac and Risperdol. We have not been back. It was very expensive and the Dr. didn't seem interested in treating PANDAS.

When my son was taking Zithromax 3-4 times a week I appealed Anthem's denial. He now is on Clindomycin for mycoplasma. Anthem got back to me today, (2 weeks later) with their denial. Their Rationale from their 2 review doctors was: "PANDAS is a disorder that has been hypothesized on the basis of what is known about the relation of rheumatic fever to streptococcus. It is controversial whether it actually exists. The evidence can be interpreted differently. Those who believe it exists do not agree on its treatment. Consequently, whether the disease exists is controversial as is whether a prolonged course of Azithromycin should be used if it does. Per the current literature, routine administration of prophylactic antibiotics and/or IVIG is not indicated for children who meet PANDAS criteria" WHEN ARE THESE PEOPLE GOING TO WAKE UP? Please send "Got Strep" cards to:Dr. Gary Myers and Dr. Richard Lafleur, Anthem UM Services, Inc., 3000 Goffs Falls Road, Manchester, NH 03111. I'm really going to have fun if I try to do an IVIG later on.

Thanks for this. I thought about the Wellbutrin too. I started reading about PANDAS/OCD and Dopamine vs. Seratonin. I know Wellbutrin affects the Dopamine. I need to find some time (ha, ha) and read more about it. That might be an option. Well, here's my two cents. We did Zoloft for a little over a year for DS, starting when he had just turned 9. We started at 25 mg, bumped to 50 within a few months, 100 a few months later and up to 150 mg by 9 months. At 150 mg there was zero doubt in my mind that it was making everything worse. He was manic, couldn't sit still like he had ants in his pants, talked a mile a minute non-stop, and couldn't sleep. Within 2 days of the 150 mg dose I asked my husband if he thought the Zoloft had changed anything except causing him to gain 15 lbs in under a year, most of it within a 4 months period. We realized that the improvements we had attributed to the zoloft were the improvements we had seen in previous years as we came out of winter and headed into Spring and Summer. Things always get worse when school starts and they did again even on the Zoloft. So we dropped him back down to 100 for a month, then slowly have weaned him down to 25 mg. We tried to get him off completely over the holidays, but the withdrawals were pretty severe (flu like symptoms that abated within a few hours of us giving him the drug again) and we decided to wait until we were back to a normal schedule.. We tried again just before we started abx, but withdrawal again was a factor and I wanted to be able to know if the abx were helping without interference so he's still on the 25mg. He has stopped gaining weight thankfully. After seeing how hard it is to get off an SSRI, I would use caution. That said, my son was never depressed. I have taken Wellbutrin in the past and felt it did help me. It's not an SSRI though, so I don't know how it affects OCD or PANDAS, but it does help depression. It also doesn't cause weight gain or have sexual side effects (which may not be an issue at 15, but if he stays on it for any length of time, it could be in the future). It isn't FDA approved for anxiety but I felt like it did make me feel a lot less anxious. Getting off wasn't too hard, I just felt really tired for about a week. You do have to wean off as well because there is an increased risk of seizures. When my sister came of Zoloft she said she has never felt more depressed and overwhelmed with sadness. She had to will herself through each day because she kept thinking she couldn't go on like that. It lasted about two weeks, but it was a brutal two weeks. If it were my son I would try giving him tryptophan or 5-HTP first. They actually create more seratonin in the brain. Getting enough sleep, sunshine and exercise make a huge difference, but they seem to be the hardest to get when you are depressed. St. John's Wort also seems to work like an SSRI, but with fewer side effects for most people, though if and SSRI were going to make the PANDAS worse I imagine St. John's Wort would too. If none of those worked, I would consider Wellbutrin first. But if the choice is between a teeneage boy with PANDAS and depression vs. mild side effects of an anti-depressant that worked, I'd probably go with the SSRI.

Thanks for this information. Two family members are on Lexapro (for depression) and it is working well for them. I might try it. He was on 200 mg of Zoloft for 2 years before Oct. with this last exacerbation. The Zoloft didn't help with the OCD but probably did with depression.

Airial that is such a tough one. Is there any way Abuelo could bring your s in after his AM nap?

Is anyone taking antidepressants? I know in Saving Sammy, Dr. Nicoladies took Sammy off Zoloft because in some cases the SSRI's can make PANDAS worse. Has anyone found anything that will work for depression without increasing OCD symptoms? My son is 15 1/2. I see depression setting in.

Worried Dad, my son's story is very similar to your son's. We are not back to baseline yet, actually symptoms have dialed up a little. I have been thinking about Staterra too. Do you know when Sammy started it? Were his OCD symptoms pretty much under control first?

Hi Kcdc3. I had and still have this with my 15 yr old son, When all of this started when he was 9, he would literally shove food in his mouth. This was all sudden onset too. I remember looking at him thinking what is going on here? Why is he eating like this? Why is he shoving food in his mouth? This is OCD/PANDAS stuff. It is the same with my son now still. Everyday I have to remind him the same you described with your daughter, "Did you brush your teeth, put deodorant on?" I leave deodorant in the car so on the way to school I have him put it on. I think maybe that their minds/brains are so preoccupied with OCD that they could care a less about things like deodorant, brushing, etc. I bet many of the things your d is doing, like leaving the pull up in the laundry is in deed a compulsion. She just can't or doesn't know how to express it. My guess and my 6 years experience with this is that it is a compulsion, there are so many coming at these kids, they don't remember or care to talk about it. Remember too that many times if they feel if they voice it, it will come true. We are all going to get better. Please hold on to that.

Hi Ellie, What were the doses of your s and d? My 15 yr old 6'1" 160 lb son just finished 40 mg of prednisone for 5 days. Should I expect to see results now? It seems to have increased symptoms?

I agree with Vickie. Take him in have a 24 - 48 hour culture, NOT a rapid, they are useless. I posted the same ? recently and most replied that yes, you can get reinfected while on an abx.

I'm changing my name from Joanpandasmom to PANDASSUCKS!

Dr. T., that is such a great point. I am a former Bus. Teacher then RE Agent. I am now self-employed working very part time out of an office in my home. There is no way I could manage a full time job with a PANDAS child. The care and costs are huge.

My S had strep and mycoplasma and his story is almost exact to Angela's daughter's. This fall he became incapacitated too. He would not shower, sleep in his room, brush his teeth, flush the toilet, etc. It got so he could just sit and watch TV too. He would have to do too many rituals to complete any small task. He is on Clindomycin for 10 days (about 6 days left) and he is on a 5 day 40 mg a day Prednisone blast, today was the last dose. He is doing a ton of rituals. I dropped him off at school at 8:00, he called me to pick him up at 10:00.

I don't know if this is relevant or not. My son had braces put on in early Sept. His symptoms exploded in mid October. I know Beth Maloney stated in her book that she had Sammy's braces taken off because he wasn't brushing. I have wondered if my son is reacting to a material in the bands, bacteria in the mouth from not brushing well, etc. I have a periodonal autoimmune disorder called Lichenplanus (not sure of spelling).

Hi Kay, I don't fully understand the test results either. I have been told that Augmentin doesn't work for mycoplasma though. There are a few others listed here that people have tried for the mycoplasma. My S is on Clindomycin for it, but it can be rough on the stomach. It might not be a good one for your d if she is having stomach problems.

Yes, bloodwork, I forget the name of the test though, sorry.

Hi Angela, he may have had a little sore throat about 3 - 4 weeks ago, but no other symptoms. He didn't have any strep symptoms other than sudden onset of incapacitating OCD/Tics when he was first tested 6 years ago but had + culture with aso of 471. He didn't have any strep symptoms back in October, other than incapacitating OCD/Tics but had a ASO of 1014. It was difficult trying to get the Dr. up here to test for strep without any symptoms. I had to tell her twice, that he doesn't get symptoms.

My S was on Azith, but a prophylatic dose 500 mg 3-4 times a week. He is 6'1" and 158 lbs. He now is on Clyndomicin 4 times a day.

My S had strep as well. ASO was 1014 back in October. It was 776 2 weeks ago when checked again. I didn't know to check the mycoplasma until Dr. T. He was asymptomatic with both strep and mycoplasma (except for the extreme, incapacitating, OCD/Tic/Anxiety). I hope this helps

Walking to the car to take my son to school this morning I noticed his sweat pants were on backwards. The pockets and Nike symbol were in the back. I said, "Your pants are on backwards." He said, "So." I said, "Don't you want to turn them around, they look a little weird?" He said, "I do rituals mom, I already look weird." Out of the mouth's of babes, it is what it is.

Thanks to Dr. T., my son was tested for Mycoplasma and it is elevated 3 x the norm. Thanks again Dr. T. and thanks for all your hard work. I can't wait to see my son well again some day.

I agree with Airial, that makes you an Angel and I am including brilliant, but not a nerd!