colleendonny

I came across a site of a mom with 2 PANDAS boys. They had a sudden onset not too long ago and just had IVIG. She was saying that treating PANDAS is harder to treat when there is immunodeficiency. Is this true? The answer is probably a simple answer but not something that I have looked into. My DD5, according to her blood work, doesn't have any immunodeficiencies.

PS, I contacted Dr. R and we see him next week. Thanks for the recommendation.

Hi Melissa, Hang in there! Right now my DD has been doing well, but I still have times where I want to run away. I definitely know how you feel. I thought DS was doing well? I can relate with the baby too. Currently DD 8 months has taken residency on my nipple . I feel like a human binky! And then I have DS2, who also may be mild PANDAS, according to Dr. B. It is a rough road! I hope you enjoyed getting out tonight at the meeting. I just started to work again, and I look forward to my 2 nights out per week working. It's like my break! Hope to see you at the next meeting.

Hi tiffani, Yes, talking about Dr. Wolff. While I think he is a great neurologist, he is just not the best for PANDAS. I would take my DD 8 months for a seizure episode that happened, but not for PANDAS like things for DD5. We still will see him in case we ever decide to try an SSRI, but right now, we are trying to avoid that.

Did you give him the new guidelines that state very clearly that it's now PANS? Yee, I did show him my sheets at our last appointment. He also wrote on his report that her abx that she had been on for 2 months is significant enough for her suspicious Lyme and her ehrlichiosis. He was talking about IVIG at out first visit for possible treatments for PANDAS, not us specifically, but as soon as her blood tests and spinal fluid came back unremarkable, he decided it wasn't PANS. Her spinal fluid is now in a Children's study.

I have talked to Dr. Jenike and Dr. Gellar both through email. They seem great and caring. If you don't mind me asking,.are they helping with the medical aspect or the psychological aspect? PM if you like. And if you don't want to share, then that's ok too

Wow, my phone is crazy Anyway, sounds like IVIG went pretty well. I'm hoping for continuing improvement for your DD. Is Dr. K your PANDAS doc, or do you see somebody nearby?

Repeat

Double post...sorry

Tiffani, How did your appointmnet go? I was talking to my Sister in law today and she has a friend who has a sister here in MA. They see Dr. T and get IVIG from Dr. Walters. I know you have been advocating for services here in the Boston area, and we did discuss this at the SShore meeting last night. The woman I mentioned above has 2 PANDAS boys and they are also immunodeficient.

Tiffani, How did your appointmnet go? I was talking to my Sister in law today and she has a friend who has a sister here in MA. They see Dr. T and get IVIG from Dr. Walters. I know you have been advocating for services here in the Boston area, and we did discuss this at the SShore meeting last night. The woman I mentioned above has 2 PANDAS boys and they are also immunodeficient.

Tiffani, How did your appointmnet go? I was talking to my Sister in law today and she has a friend who has a sister here in MA. They see Dr. T and get IVIG from Dr. Walters. I know you have been advocating for services here in the Boston area, and we did discuss this at the SShore meeting last night. The woman I mentioned above has 2 PANDAS boys and they are also immunodeficient.

I checked on my tv. We have Fios and it is not in out package. We were supposed to watch it at our PANDAS parents meeting yesterday but had some difficulties. It does look very interesting and I hope to watch it soon.

We got fully reimbursed. I was pretty surprised

My 2 1/2 year old son has dilated pupils frequently and is pretty sensitive to light. Mostly when we are in the car, and sometimes when we change his diaper and he is under a light. We are not sure if he has PANDAS/ PANS as he has not been tested yet. We did explain these symptoms to Dr.B who says it may be a mild case of it and started him on Augmentin. I can't say the light sensitivity has gotten any better, but I have noticed his pupils less dilated. Although his poor belly bugs him When his pupils are dilated, I ask him to look at the light, and then they go down. Is this typical for PANS? I know when some kids are in exacerbation, they have dilated pupils.... but if they look at the sun or bright lights, do they normally go down in a PANDAS kid?

Hi, Good to see you yesterday. I looked up homeopathy a while back, and someone local came up in Hingham. Her name is Megan Stewart. I don't know much about her but maybe you could give her a call?

Okay, may have went a bit overboard, lol, but here is what I got! 3 bottles of Skin so Soft Bug Guard Plus IR3535 SPF 30 lotions 3 bottles of Skin so Soft Bug Guard Plus IR535 SPF sprays and 2 packages of the toweletts And I ordered from Amazon and spent $68 and free shipping. Thanks again for the reccomendations!

PS, just found some of these products on Amazon for 1/2 the price

Thanks so much for your replies. It definitely helps! I know that I cannot keep my kids in a bubble this summer (although I wouldn't mind!!). I guess we will try to get lots of beach days in as well! I will check out the Avon site today and order and stock up! Laura, could you share the name/ brand of the bug repellant that you use? Thanks again everyone!

Megan, I will do a longer reply when I am on my PC , but just wanted to say that I really enjoyed the meeting last night. I learned a lot! Having Peggy there was wonderful. She was very well informed on PANS and overall health. Good to see you! I'll be looking out for your email.

Spring is coming. Today was seventy degrees! Anyway, we live on South shore MA, where ticks are plentiful. We are new to this and don't see our LLMD until next month . I was wondering the best products that ticks don't like, for the yard and skin and clothing. Any certain bugsprays and sunscreens that we should be getting? Thanks, Colleen

I watched. It's seems as if they could. A lot had OCD, complusions and rituals. And lots of tics. They attended a camp. I forget the name. Something with the word tic in it.

There should be. I will e-mail Lisa.

Fighting mom, I sent you a PM

Hi all. I had a post a few weeks back on DD5 starting a throat clearing tic. I got some great advice and I even asked Dr. B about atarax. He didn't agree with it and didn't want to try it because it could make her very drowsy. But we did restart her on a 20 day steroid taper at 15 mg of Prednisolone. On the day it started to become more of a throat clearing, rather than a throat hacking which it turned into, she starting getting sick. I thought it might have been from the perdnisolone, but I now think it was a virus, because my 8 month old got the same thing. Anyway, we had to stop all meds until she was symptom free for 24 hours hours then re introduce the meds (Prednisolone, Augmentin and azithromycin) back one at a time. Just when her throat clearing, I believe, was getting better we had to stop. I think it has gotten worse. We restarted the Prednisolone and it hasn't seemed to have gotten much better yet. But we still have some time... So maybe it will kick in soon. I always thought tics were worst when they are bored? It seems opposite with my DD. She can sit here and play a computer game and hardly clear her throat. But we went to the park the other day and she was running around, literally hacking her throat every 30 seconds. Her 5 year old playmate commented to her her how "gross" her cough was And I don't think it it post nasal drip because she is not sick... I ask her id she can stop doing it and she says she can't. And she can't explain why she cannot stop. Don't tics usually occur more often when bored and not excited? Maybe I am wrong... Also, the throat clearing seemed to start in Mid Feb, right after a teeth cleaning. And she also started on flouride pills. And she also has a few wiggly teeth... Could the cleaning, flouride rx or wiggly teeth be causing the tic? Thanks for any thoughts.