colleendonny

Now I sometimes notice a mouth grimace. Sort of like an exaggerated smile. And the past few days she will not nap in her bed. She just cried for an hour and a half in her bed. Exhausted. She is just 11 months old. I'm bringing her along to see Dr. B in June. I'll see if he can give her any blood tests. Thanks for all your responses.

Kara, definitely! I'm sure I will have my 3 little ones. Will you have your kids, or will they be in school?

I'll try to make it!

I love hearing everyone's stories and roads to recovery!

Thanks for the responses. I will have a chat with Dr. B when we see him next month to see what he recommends. I have no idea what to make of the above numbers! I have looked up s. Pneumoniae and can't tell if my sons numbers are good/ bad. Protected or not?

Bumping I guess for better wording: Has anyone who has a child with PITAND, no signs of a strep infection or raised titers, ever done a tonsillectomy because of PANDAS? And if so, how did the tonsils look after removal?

The dentist says they use sevoflurane. I looked it up and on Wiki, it says it is typically used with nitrous oxide. When I asked her, they said they do not use it. I will call back again tomorrow. I'm really nervous for Tuesday. I just can't imagine this dental work getting done any other way. PhillyPA, he will be in a hospital. I believe it is an anesthesiologist that administers the medicine.

Is this typically common with PANDAS children? I remember it was one of DD's most significant symptoms. The reason I ask is when I was just looking on PRN, it doesn't mention sensory issues. My DD always thought she was doing and touching things too hard. And she had the desire to scratch. My husbands neice has been having some issues lately which really aren't clear cut PANDAS, but I'm wondering if I should mention to get her tested. She mentioned before that she started having issues at age 4. She does occupational therapy. She always has to touch things and people and always picks up kids younger than her. She has an oral fixation, where she always wants things in her mouth. The past week or so in school, she has been crying frequently and says she doesn't know why. ( She just turned 7). And they put on on a GF diet and they say her behavior was better for a while. And her handwriting got better. They are calling it PTSD from a heart surgery she had when she was almost 3.... I don't know what to think of it. I feel like I relate everything to PANDAS now Does this sound like it could be pandas?

What is the reason for the no nitrous oxide? I'm not sure what they are using. I will have to call them. It is not the silver mercury fillings.

I just went to a PANDAS parents meeting and there was some discussion on tonsillectomies. So, my question is, have you ever done them without any signs of strep, rapid or culutre? Or with no elevations in ASO or DnaseB? I just realized in My kids lab work, that Dr. B tested my son for the 14 serotypes for streptococcus pneumonaie, but my DD, who was the original PANDAS was never tested. I'm guessing he meant to but never did. How do I read my sons results? Here are his: Serotype S1. 0.4 S3. 0.3 S4. 0.7 S4. 0.5 S8. <0.3 S9 (9N). 0.6 S12 (12F). <0.3 S14. 1.4 S19 (19F). 0.4 S23 (23F). 0.6 S26 (6B). 2.1 S51 (7F). 1.5 S56 (18C). <0.3 S68 (9V). 9.3

My son, who will be three late July, has many cavities! It's crazy, so unexpected. So, he is actually scheduled for anesthesia for next Tuesday for the fillings. Well, we just got back lab work for suspected PANDAS for him, and while I haven't discussed them with Dr. B, the two things that he looks for with PANDAS kids, my son shows them. So, I guess I am self diagnosing him until we go and see Dr. B again in June. I have Augmentin for him (600 mg 2x per day), he is 33 pounds, that I just filled and will start tomorrow AM. I can also add in azithromycin for him as well. Is there anything else I should be doing? Should not be doing? Dr. B said anesthesia was fine for PANDAS kids. My DD did it and she was fine. Should I be asking for IV abx? I'm wondering how much that would cost. We are already paying cash out of pocket for most of the dental plus all of the hospital past, as our insurance won't cover dental work in a hospital setting. I'm guessing I'll just tell her to be extra gentle. I'd love any tips! Thanks

I ditto calling the study. Where do you live? There are only 4-5 specialists in the country. One in CT, NY, Chicago, MD, and FLA. Many many people travel from all over the country, even different countries, to see them. Best of luck.

It was for my almost 3 year old son. Labs are pointing towards PANDAS as well.

I faxed a request and got them. Not good news on the labs though.

I have heard the same too. I'm going to have Dr. B explain it to me better at out next visit.

We got our labs faxed from Dr. B's office. I think the results point to my son having PANDAS. I had a suspicion, but it still hurts just the same. The following are the abnormals in his labwork. High hemoglobin, low neutrophils, high glucose, low bilirubin, high BUN/ creatinine ratio, his TSH was highly sensitive at 4.46, C3D immune complex was high, IgG3 subclass was high, Asialo-GM was high ( which is what I think is the biggest indicator in his labs that points to PANDAS), and also IgG Lyme band 41 was present. I'm off to research tonight. And to top it off my 11 month old was having quite a bit of the seizure like activity tonight. On the other hand, Happy Mother's Day to all of you. This is such an amazing group of moms (and dads!) here. You are all so proactive. All the help you all have given me is very much appreciated!

I will definitely do this from now on. I wonder if I will have better luck contacting the lab?

Where do you live? There is another member here who has a support group in Salem...

Thanks all. You have been such a great help I just passed all of this info onto my sister. They are tough on money right now, so I'm hoping somebody will be able to help them. Her son is on Medicaid, so I think they will be limited, but I also sent her a list of nearby providers. Surprise, the doctors at the psychiatric hospital has never heard of PANDAS. Can you imagine?! Right now he is on Depakote and Abilify, plus another that I cannot remember. I hate to rant, but why is it so hard for a PANDAS diagnosis?! I too believe that many, many kids get misdiagnosed with having some sort of psychiatric illness. This is something that should be accepted, and psychiatrists and teachers plus many more should be aware of this and educated.

My sister has a son who will be 12 this month. Years ago he was diagnosed with bipolar. His main symptoms are rages, ADHD, aggression and OCD ( he gets stuck on ideas). When he first presented he said he was hearing voices telling him to kill people. I think he was about 7 at the time. Now that I know about PANDAS, maybe this was intrusive thoughts, and not voices telling him to do so. He is being admitted to a psychiatric hospital tonight for about a week. They live in Nortonville, KS, if anyone knows of any resources her way. I told her fask for the following tests: rapid and culture test, ASO, DnaseB, Lyme, Bartonella, Ehrlichiosis, and Mycoplasma. I'm not even sure of they will entertain her idea. Is there any other tests I should have her ask for?

Hi all. My husband is in the union and they have their own health and welfare office, although we do have BCBS PPO, and we do not need referrals. We are trying to get some reimbursement for our LLMD appointment. They want a reason why we are seeing a doc who doesn't take insurance out of state. (I don't know why it matters). I think the LLMD used codes like anxiety.... Was wondering if anyone had tips on what we could say that doesn't include PANDAS, (incase we ever need IVIg), and that doesn't necessarily say Lyme as it can be controversial? The letter can be written from me. I am planning on calling the LLMD's office on Monday to see if they can also give some tips. Our LLMD also wants a panel of tests done from.Great Plains. Our insurance says the doctor has to call and tell them the codes, we can't. What a pain!

Really?! I will fax a request for them tomorrow. Hopefully, I can get them back. I'm anxious!

I was wondering, we were supposed to have a meeting in south shore MA next week, but I have not heard of anything from the leader. Has anyone else? My e-mail has not yet been answered. If I do not hear back, would anyone be interested in myself looking for a new location? I would be happy to. Just let me know

Thanks, I suppose I will try one more e-mail, and if I don't hear back, looks like we will have to pay for a phone consult.

Do you have a PANDAS specialist? I wil also chime in and say that my daughter had the greatest improvement when we added azithromycin to Augmenti too.