Pandasphilly

Oivay Did you mean to say "some overlap"?

Mati's mom, Whatevere happened? We're you able to receive pex with an active mycoplasma infection? Was pex helpful? My son had negative mycoplasma UNTIL we did ivig at which point his Titers came up positive. We are receiving pex shortly

I'm just starting these myself so bear with me. I may need to defer to my doctors notes. Barleans olive leaf just as it says by teaspoonful. Let me check I oregano. May already be in a thread but they are truly necessary to help our kids

Pull the info that shows the direct correlation with sydenhams chorea. Schools take this diagnosis seriously. I talk more "autoimmune of the brain" in general and mention pandas less. Sydenhams is a know autoimmune brain disease and in the same family as pandas Sorry I just read you don't need onset info.... I just make a list of the craziness we live during flare and tell them to expect the worst all the time I can tell its coming within hours by pupils and handwriting degradation.

Said he heard it has great benefits ... Maybe he heard it from one of us endlessly researching moms:) Are you out there for comment dr t???? . Olive leaf extract & oregano also amazing. I may try camel milk. Supposedly delicious

I'm confused. It seems to me pandas is relatively the same as sydenhams chorea (SC) but with slightly different movements (jerky vs. slow/twisted). Sydenhams choreas has been around since 1600s. So why is pandas so disputed? Dr T, dr L and I were watching my son and videos and decided whats left of his movements are more choreiform in nature since the jerk like tics reduced with antibiotics. Therefor he is diagnosed with both pandas & SC. This is helpful because the school takes SC very seriously. No push back. Also treatment protocol is exactly the same. Any thoughts ???

Did you have a tonsillectomy if you are a carrier? Treatment is extreme because this disease is extreme. We did T&A on all kids, which I believe has helped reduce tics & lower exposure risk for my son. Also my husband and I may also do a tonsillectomy as long term it will better protect my son. Thankfully our ENT understands our situation. Now if we could just find the time when we're always in crisis mode..... Also my son age 10 started augmentin xr1000 2x day when he was 65 lbs. now 85 lbs (pretty big weight gain from ivig and antibiotics) and he's still on the same dose. Really reduced his symptoms but still severe

My son received high dose ivig with pandas doctor and we experienced little to no side effects due to 2 day pre and post steroids along with lots of IV hydration, Benedryl, zofran. I can pm you the protocol. I feel the steroids were key here for us.

Hmmm.I just wonder if they're carriers of things that can be passed through milk.. I carried Lyme most of my life and never knew it. Discovered it after I breast fed and panicked because I heard you can pass it through breastmilk. Also I recall dr. T mentioning camels milk.

We've only tried steroids for 5 days. They took about 2 days to kick in, then our child returned to us, but after stopping them pandas set back in. So we had about 5 amazing days. Wish we could stay on them.

MomwithOcdsons What is ACT and how does it further benefit CBT /erp? We currently do the latter & I haven't heard of it

Hi Melinda We have a new generator and lots of gas. Can you use it? We can deliver if you have someone to help unload. It's heavy. We have power if I can be of any help to you. We are in blue bell pa just past plymouth meeting. Even if you all just need hot showers and hot food please call me. We are a strep free environment C 610-348-4058 Michelle

For both my kids The only thing that stopped the urinary leakage, bed wetting, constant peeing etc was antibiotics. It returns when I remove them. Is your child currently on them?

Thx Kerry, Ive heard great things of them & dr greyson.

Pex with Dr. L & iIvig with Dr. T.

My son also complains of eye pain. Feels like they are bulging out of his head. Also says they keep re-focusing on him. This is quite often. The ophthalmologist found nothing. I realize he also has heightened sensations.

Thanks for responding Kathy. We had a similar experience at Rogers memorial and another pandas mom there clued me in that it's hard for the kids to receive therapy without pex or ivig to address the pandas first. A year later we're at square one with aversion to exposures. Exhausting. but USF takes Aetna so I'll be going sometime post pex & ivig. Here's hoping

We went to All Childrens Rothman Center in St, Petersburg Florida in 2010. We did 4 wks of therapy, 3 hrs a day but sadly it did not help at all. I think this is because we are dealing with Pandas/PANS not plain OCD. But Eric Storch and staff are very kind. And they took our insurance which helped. We stayed at the Hampton Inn downtown about 5 minutes from all childrens.

Sorry to flood everyone with questions on my first day on this forum... We will be receiving PEX next week but have heard nothing from the doctor or hospital on how it works or what to do post pex. Questions post pex... 1. Dr. L says no need for IVIG post pex, we will see slow steady improvements over 1 year 2. Dr. T says yes and within 14-28 days. Anyone know Why? I obviously would need to plan for this. Anyone have experience with this? Regrets in not adding IVIG post pex? Clearly my son has a hyper active immune system with no deficiencies. Even on Augmentin XR1000 2x/day his symptoms only decline a bit. If he goes off I'm reminded how bad it really is (hospitalization). We are paying out of pocket (ouch but I'm desperate) so I want to make this attempt as much of a success as possible. I do not plan on returning my son to school this year since he picks up everything and it would undo PEX. 3. I'm hoping to use this year to attend USF. Does anyone know if the child can be exposed to a clinic setting right after PEX? Should he wait a few months? to rebuild antibodies. I always fear strep and other illness is residing in the offices we visit. Any advice is appreciated!!!

Philamom, We are in the same boat. Took ds10 out of 5th grade this year. Is your 5 hours per week homebound limited to 3 months? I thought ours was. I then learned you can receive "In Home" education from the school (from an education lawyer in Berwyn PA) which does not put a limit on how many hours per week you can receive. Can you share your school district? You can PM me if you would like to. I'm new to the forum

Thanks so much. Do you know if she be offering PEX again? IVIG? She was one of our three diagnosing Pandas specialists but she disappeared from CHOP a few weeks later. We got word after she was gone. I never knew what happened there.