Erin3

Hi Vickie - we haven't tested everyone yet. Dr. B asked about this last appointment but didn't recommend testing everyone. DS has had chronic sinus infections up until we started the abx, but tested negative for the allergy panel Dr. B ran. I'm thinking of doing more allergy testing with him.

Just wanted to say thanks for all of the support!

Nancy - thanks so much for your reply. It makes me feel like a sane person when I hear other moms (and dads!) going through the same thing. We did test for mycoplasma and both times he was negative. He does not show any titers for S. Pneumoniae either. We also did the Lyme WB through Quest and the only thing that was reactive IGG was band 41, which I know half the population will test positive for that band. I did find a DAN! that accepts my insurance through their allergy part of their practice. I may just go and get his opinion. I find myself hesitant to even say the word PANDAS to some doctors after seeing a really nasty neurologist (whom I paid out of pocket) for earlier in the year!

Dr. B felt that DS was a mild case of PANDAS and that since the abx had been working, he didn't feel that IVIG was warranted. We started with Augmentin, which helped a little bit, then he had a big excacerbation in December and we switched to Zithromax and a steroid burst which got him to 90-95%. In April is when things went downhill again and we tried Augmentin again with no change and now we are on Omnicef, again not seeing a change. I am going to try additional supplements after reading about glutamate. I'm just so confused!

I'm on Long Island but we travel to Dr. B in CT. It's only a 30 minute drive after you cross the Throgs Neck. I've heard of Dr. Boris, they treat PANDAS along with Autism. I called their office and they do take some insurance through the allergy side of their practice. We haven't made an appointment with them yet. We may as I've heard he does a lot of work with diet.

Hi everyone, I do not post very often but I read most posts and want to thank everyone for sharing their ups and downs. Has definitely given me direction since October when my son was diagnosed PANDAS. Long story short, (don't we all say that? ) my son was diagnosed by Dr. B last October. Responded well to ABX and Steroid burst in December. Was at 90% or so until April. Something happened in April, we don't know what, that triggered most symptoms to return. We switched abx twice since then with no change. AT our last appointment Dr. B suggested we test with Igenix for Lyme. Haven't gone for the test yet as right now funds are tight. I believe in Lyme and really think it's quite possible for ds to have it. I was bitten numerous times as a child, my kids are exposed to ticks quite a lot as my parents live on Eastern Long Island and we are in Western Long Island. I honestly don't remember him ever being bit by a tick, but you never know. I know how controversial Lyme is but to me, it's a real thing. My younger brother was diagnosed in the mid-80's before it was widely known. My dilemma is this. In speaking with my pediatrician, whom I really trust and respect and originally suggested PANDAS, suggested that maybe ds has a chemical imbalance. That I should take ds to a neuropsych. I gave her the argument that OCD/Rages/Anxiety wouldn't magically dissapear with abx if it wasn't caused by an infection. She agreed but mentioned that it could just be coincidental. Should I continue to go down the Lyme path? Should I take him off the abx he is currently on since there has been zero change since switching mid-June? Would a DAN! doctor help? I would love to hear other opinions from moms (and dads) who have been there. Thanks!

Thanks everyone!

My son will be 6 the end of the month but symptoms have been for at least year and a half. Only officially diagnosed in October.

Can anyone recommend where to buy instant strep tests? I would love to be able to keep them in the house. Especially since there are now 15 cases of strep between both ds's classes. Thanks!

Both of my boys have it. The DS with PANDAS had it first and has many more than my other son. He has them on his legs, groin, trunk, neck and a few on his chin. Part of the issue is that he does more "picking" which makes them spread. Our dermatologist will only treat them if they are causing any issues. So he will put the medicine on the largest ones as that seems to be the choice ones to pick. The others he says will go away on their own and could take up to a year. It's spreads quickly so we have to make sure that towels aren't shared, washcloths, etc.

This was one of my son's issues before we even suspected PANDAS. Our urologist did a flow test and his internal sphincter muscle would not relax enough to empty the bladder. They ended up putting him on believe it or not, prostate medicine, which helped a lot. His was truly a physical symptom, not an OCD symptom. I don't know if there are natural ways to help relax the muscle. Maybe take her to a urologist to rule out any physical symptoms first?

Hi everyone - my DS6 is seeing Dr. B for PANDAS. Even though it took a year to figure his issues out we are starting to make progress with Augmentin and have recently started chiropractic. Now, my problem. My DD2 had the flu shot on 11/13. We also started her on Singulair as she has had chronic sinus/ear infections and had tubes put in last year. A day or two later she started stuttering. We took her off the singulair but she is still stuttering. My immediate thoughts jump to PANDAS. Has anyone had this as a symptom? As far as I know she hasn't had strep, though sons have been exposed. I want to start her on Augmentin to see if it helps. I've left a message for my pediatrician but she is out until Tuesday. I don't know if I'm being paranoid or not, but I just don't want to go on the medical mystery tour again. Up until now she her speech has been crystal clear and really advanced for a 2 yr old. Thanks for any input, reading everyone's posts has really helped over the last few months!

Hi everyone - my son started Augmentin on October 19th after seeing Dr. B. He had a stomach virus a few days later so went without the abx for 2 days. We started him right back on the 24th. He has been completely "off" for the past two weeks. Rage, crying about anything and everything, tantrums, anxiety and fear of everything, plus new ticks such as biting his lips and then doing this crazy exhale thing. I couldn't figure out why things were getting worse instead of better. Well, at the bus stop this morning I found out that 3 other kids have had strep over the last few days. Could this affect him even though he is on antibiotics? Should I bring him in for a strep test at the doctor? He also has a bad cough and cold, could that also trigger the behavior? Thanks for any insight, I'm feeling pretty lost! Erin

Hi everyone - I'm so glad I found this website. I've been reading a lot and learning so much that my head is spinning. I'll try to keep our story brief! (I know that's hard!) My ds5 started with "growing pains" in the Spring of 2009. We thought it was behavioral since we had a new baby in the house. During that summer he became more clingy and cried every day that he had to go to camp/daycare. That fall I mentioned it to my pediatrician who told me to just keep an eye on it. Fast forward to his yearly checkup in January of this year. She noticed other neuro signs, tremors and uneven muscle tone. Went to the neuro and had an MRI done. The MRI was normal (or so we were told) and the neurologist diagnosed him with increased reflexes on his left side along with a left pronator drift. I found that to be interesting since the pains were mostly on his left side. My pediatrician then suggested we bring him to a rheum. We had to wait 5 months to get an appointment. During the winter months other, what we thought random, things began to appear. He was going to the bathroom more frequently and we ended up having to take him to the urologist. They did a flow test and told us that his internal sphincter muscles weren't relaxing enough to empty his bladder. They put him on Flomax, a prostate med. Which they told me they use frequently. The Flomax did help along with Miralax and Benefiber once a day. We finally end up seeing the rheumatologist and she runs some tests but doesn't think it's arthritis or lyme. Everything comes back normal. The next month we start to see more OCD behaviors. My ds has always had some tendencies that we just attributed to his personality. Obsessing over toys, especially legos, lining things up, etc. Very orderly. We joked when he was a baby about it since at 1 year old he would have to line crayons up in color order with the points all the same way, lining up his thomas the trains over and over again, etc. These activities now are interfering with normal day-to-day life. July we hit the breaking point as he was starting to bite his fingers til he bled and was eating inappropriate things. We went back to our ped and discussed it with her. The next week we went on vacation and he was a mess the entire time. When we returned our ped suggested that we look into PANDAS. She came across it and sounds like my son. She ran the titers but they came back normal so she said that it can't be it. Now, after doing my research on it I had to tell her that it was still a possibility. We finally saw Dr. B last week. I finally felt like I wasn't a crazy mother. He said that all of his symptoms point to PANDAS. He even thinks that he may have had this for years since he had chronic ear and sinus infections and had tubes at age 1. His MRI from earlier in the year also showed inflammation in the sinus and mastoid cavities. Something that my ped and the neuro did not mention. He put him on Augmentin 600ES and we go back to him on the 22nd of November. Now here is where my questions come in! DS started the abx last Tuesday night. Friday night the stomach virus hit and he was sick all day Saturday into Sunday. I couldn't give him the augmentin. We started up again on Sunday but he has had diarhea all week. Could the antibiotics be doing that? What can I give him, a probiotic? If so, which one? His behaviors have also been deteriorating this week. More obsession with food, what he can't and can eat. He just started Kindergarten and wants to buy lunch like the other kids but is "afraid". He likes the pizza and gets sad when he sees the other kids eating it but he can't eat it because it is messy. He wanted the mozzarella sticks they had this week but went on and on for 2 hours trying to convince himself to buy them. HE won't eat his favorite foods anymore because they make him "wiggle". He has also started scrubbing the bathtub when he is in the shower to make it "sparkle". These are new behaviors. Could the stomach virus have caused this? Shouldn't his behaviors be getting better with the antibiotics or do they get worse before better? Well, if you made it this far, thank you! I'm sorry to go on and on but I have no one to talk to that understands this and I'm trying not to read into every little thing he does. Thanks for any input and help! Erin