Hopeny

I think its a good idea. You may be dealing with issues outside of PANS. Good luck.

I wish I could attend. If anyone can post any key takeaways that wd be much appreciated. I agree that bartonella is way more prevelant than we think and exceedingly difficult to treat and test for.

My 3 year old was on Prevacid from age 1 to almost age 2 for reflux. I sure she has a magnesium deficiency, I had heard about the magnesium but need to read these articles. I am taking her to Dr o to test all of her levels. I will post after we do testing.

Amy someone commented on my red gums post that zith does not get at mouth bacteria, only something penicillin based

I'm so sorry my previously well adjusted happy daughter had suicidal thoughts/ideations at age 8 from lyme/strep. its very worrisome. We had a fairly quick response with doxyciycline in abating the thoughts. Amoxicillin actually seemed to accelerate them. Could you share where you are located? Its important to say that your daughter needs to be watched 24/7, do you have support at home to help?

I agree it's an excellent book, I gave it to my mother and it finally got her to understand. thanks for the news.

That's a very interesting thought. She is pretty loaded up on abx/supps and almost all better (hope I am not jinxing anything) and I don't see much herx anymore but that is entirely plausible. it has been lyme like. i think i will email our lyme doc to ask, i believe he has spent time with klinghardt who i think uses bee venom. Wow maybe this will help!

I live in Westchester county too. I would highly recommend dr nancy O'Hara in Wilton, ct. She works closely with dr b, and is not too far away about 30 minutes for me. She covers pans and immune illnesses. If your friend would like to speak by phone she can pm me. My pediatric group is open to pans/pandas and is in white plains.

Thank you, I'm pretty sure the dentist stirred up something at the cleaning as her gums were fine before. I have another call into the dentist, and I will ask her for the penicillin. Pediatrician wants me to live with it unless she develops other symptoms.

Based on the complexity of your daughters symptoms it seems like a conventional medical workup and sleep study would be worthwhile. Since you have the other treatment avenues covered you can see if it is beneficial. Good luck

Norcalmom would amoxicillin work or does it need penicillin? I am making an appt with older dd's integrative and will bring up. Dd3 does have a D deficiency from Lyme I guess and I have just started 1000 IU daily. I'm annoyed with the dentist who knows she has an immune issue, insists its a systemic problem even though It started right after the cleaning , and thinks 24 hours of amoxicillin is enough. The one I used was past due expired but I really didn't anticipate the problem. Pediatrician doesn't want to treat it. It's upsetting seeing it and I know those types of infections can spread.

Yes thank you I will try tonight. I've found Maalox to work on sores (she has from coxsackie before) but nothing has helped this time

Pardon my dumbness but are canker sores red gums or would there actually be a sore? I'm headed off to the ped again because I'm so freaked out

I haven't seen much change from the zith/cefdinir, she has been on it for a week. I expected it to clear up overnight but it did not sigh. I will look into MMS, thank you, its hard because she is so little I am afraid to use anything.

my 3 YO who has an immune problem (mannose binding lectin deficiency, related to the complement immune system), and Lyme (normal ASO, Myco etc) went to the dentist about 5 weeks ago and ever since has had red swollen gums all over. It is not sores. The dentist said it is something systemic and not related to the cleaning. She had cleaning before and this did not happen. However the timing is suspicious to me. I put her back on her cefdinir/zith Lyme cocktail. Her CBC was normal, RBC and Hematocrit a bit low. I am using some biotene mouthwash rubbing it on her gums at night and also got some cankersore gum stuff I started yesterday. Any ideas? It's so upsetting to see her mouth looking like that.

DD9 PANS/Lyme (crossing fingers and toes otherwise doing great) was bitten by a bee in her neck at our community pool. Lifeguard removed the stinger and she continued to swim at pool. Came home and complained of severe exhaustion, went to bed at 7 p.m. Called ped who said it was probably adjustment to camp (she is going to art camp so not very active) and swimming. Since then she has been tired/lethargic. Had a mild sniffle. She has not had any real pain but has a small bump at the sting site, it's been about 10 days. I did some googling and found something on a bee venom reaction, its not an allergy per say but an immune reaction to the bee venom. I think the ped will think I am off the deep end if I bring this up. From what I read this seems to go away on its own but wondered if anyone has experienced this. I am thinking this happened because of her still somewhat out of whack immune system. Interested in hearing if anyone else has experienced this.

Your subject said blisters. Blisters can be Steven Johnson syndrome an emergency allergic reaction please see your pediatrician today.

I have to second what everyone else has said. My niece has been treated for years (dr S in Brooklyn, numerous paychiatrists) with ticcing, rages, severe OCD etc. I have been suspicious of Lyme, the great instigator, because she can't get well. We finally had her tested through dr b at stonybrook lab and she showed reactivity to a Lyme specific band. When I discussed some other symptoms of bartonella with my sil, foot pain, eye problems, she confirmed them. Bartonella is very hard to detect in the blood and in conjunction with other markers should be considered in regards to clusters of symptoms. It's upsetting to hear doctors who are not experienced with Lyme/co infections to declare that a child does not have Lyme despite not getting well. It has taken my daughter 15 months of treatment for Lyme and we are still not there. The major what I consider strep symptoms, resolved much more rapidly and her aso is now normal. I am not suggesting that every unresolved case is lyme/bartonella, but other causes are worth evaluating if symptoms are unrelenting, by someone who is experienced and trained. Rifampin has worked well for my dd but not overnight. While we have cut down our team at this stage, I found that working with a team of varying specialties was critical in getting to the last mile. They all complemented each other and were able to bring different things to the table, each was mission critical. It may be an approach to consider. I really hope things improve speedily!

Nancy Ohara may be an alternate to consider, and less expensive for chronic illness

I knew someone ago had the entire slew of igenex tests that were covered by Medicare, it's the only thing igenex accepts

As far as I know ast is typically used to assess liver. 59 on a top range of 50 is not considered very elevated. Best to retest, my experience has been that test fluctuates. Also recheck neutrophils. Numbers close to the range can be rechecked

She is well known, as far as I know she only uses zith. That may be why not as many people go to her. Dr S sort of discovered pandas because she tracked strep in generations of her patients and found patterns of pandas. My niece went to her and the zith wasn't enough after being on it a year she changed doctors. I think because we find out she has Lyme too and probably co infections that zith was not effective. It's always good IMO to work with a pediatrician, I hope she can get you to the next level.

that's a good point, it depends on the age.

Also just a thought that even if you have Lyme there can also be other things at work. Maybe she has another type of sleep disorder. Have you ever done a sleep study?