JenniferG

Yes. Shortly after we stopped abx they had sore throats (the boys). I brought them and it was hand foot and mouth. Neg culture

Spoke with Dr. T a few weeks ago and we are doing a trial off Abx with new labs. WHOA. My dd 9 had age regression, nausea, bellyaches, diarrhea, mood swings, complaining of just not feeling herself. Ds 5 started wetting the bed again and had severe rage and mood swings. Other ds5 had sudden sadness tears etc. I couldn't take it. Consult tomorrow, I started them back on ABX and BOOM..... 2 days happy house! No wetting the bed, a lot less anger, daughter back to playing with her friends, bellyaches slowly going away. Here is the kicker, I only put Meg and Joe back.....Kyle didn't seem severe enough and has lots of belly issues with Abx......so why is he better too? Any thoughts? Anti DNASE 95, qoq and pending....slight 5 pt elevation ASO neg Bartonella neg Babesia neg Lyme neg Erlichia neg ANA neg EBV neg Normal Thyroid ASO neg Strptozyme neg Both boys Glucose 59 14 Serotypes almost all <0.3 Kyle's Basophils CRITICALLY high at 2.5 !?!?!? Both boys HSV 1 high at 9.07 and 12.6. Normal <0.90 Coxsackie and igg subclasses pending ANY input would be greatly appreciated.

Had our first set of labs for Dr. T. Anyone know why he runs this test?

Thank you. The GI had talked about downgrading as a possibility. You seem so knowledgable..mind if I shoot another question? . Dr. T has taken all 3 off of abx. He thinks they might have virals issues. I am awaiting a labslip from him. In the meantime, my dd 9, who has been on abx for a few years is now off. She is VERY happy. Most of her symptoms have disappeared except her anxiety. It hasn't gotten worse, but, is just still there. When I say she is happy, it's almost like she is giddy. I'm not sure if this is a normal happy little girl and just haven't seen it in years or it's a strange reaction. Any thoughts?

My boys are on Prevacid daily for GERD. Reading the benefits of an H2 Blocker. Thought I should consider switching. Has it helped tremendously? And what symptoms does it help?

Any suggestions for natural anti virals for children? Ages 4 and 9. Thanks!

Have those been "prescribed"? Olive Leaf particularly. How is it dosed?

Dr. Joseph Brown Connecticut/Mass www.drjosephbrown.com Clinical psychologist

Thank you so much! This really helps. My dd is 9. She just turned nine in June. All the girls in her clas will be 10 this fall. And she is really petite 4'1" and 56lbs. She is very tiny when she is with her friends. And this does bother her. We had a tour Monday and brought Meg in today for a tour and a placement screening. They said she would "ok" in 4th (where she is supposed to go) but socially is not ready. They think she would fit in well in their 3rd grade class. She could be more of a leader and build her confidence. That's exactly why we went searching for private schools. She absolutely loved it and asked to go there. Here is my fear......she is age regressing a little right now.....I wonder if/when she "returns" she will be upset and not like it.

We are seriously considering enrolling our dd9 in private school this fall. Very small class size and contemplating keeping her in 3rd grade instead going to 4th. She has a "placement" screening today. Has anyone considered this? Spoke to Dr. T. And he thought it would benefit her because of anxiety and the fact that she does very well in the fall and then ends up getting sick at Christmas and doing poorly in Spring. I worry that moving her AND holding her might affect her confidence. As most private schools, the academics are more rigorous, but , she will be in 3rd again. I'm so confused.

Had a 1.5 hour phone consult with Dr. T today.....found out SO much. He is ordering more labs but it seems one of the reasons why abx aren't working is because part of the issue is viral not bacterial. My 3 have all had hand, foot and mouth 4-5 times and live with herpetic lesions on their mouths. He said this is all viral and that it's the same in respect as their bodies not recognizing the fact and making antibodies to the virus.....like chicken pox. Talked about a bunch of other things, got A LOT of questions answered. Not just a refill of abx. Thank you! Thank you! Thank you!

Thank you! We have a phone consult on Thursday.

I would like some input on PANDAS docs. I have seen one here in CT for a few years with little progress. Any suggestions? Have tried a few times to reach Dr. T, with no response. I really would like an MD whom I can count on to call when questions arise. Thanks.

Just read that iron and certain antibiotics should be spaced 2 hours apart. Along with reflux meds. Just wanted to send out an FYI. Bacteria thrive on iron also. Extra iron intake could increase bacteria growth and/or inhibit antibiotic strength.

When I email the nurse they tell me to call. They would not give me a consult with the PA. The PA is the one who told me to wait until Tues. I don't find this acceptable. Am I over reacting?

I am in dire straights. My kids have been cycling since Jan. starting with a sore throat, fever...get a neg culture, leads to croup and an increase in symptoms.....OCD anxiety anger rage ....etc. This is the 5th time since Jan. we have changed abx several times......the problem I am having is when I call Dr. B office the push me off. I called Wed. Left message. Thurs. left message. Friday they are closed. Called again today and they told me to wait until my appt on the 31st Suggestions?

y All 3 of my kiddos had SEVERE reflux...milk/soy intolerance, failure to thrive. The 20 min nap thing is from the reflux. Something the GI said about the acid "cycling" ....sorry it's been awhile. But, sleep deprivation is not fun. Have you tried elevation?......blankets or wedge under the mattress. It really helps. Formula changes help. VERY frequents burping..every ounce or so. Best Wishes. Hope this helps.....

I am looking for a Pediatric ENT in CT. WE have one now, but I would like a second opinion from a PANDAS friendly MD. Thank you.

ALWAYS ask for the ordering MD to "copy patient". You get a copy mailed directly to your home from the lab. And, because the patients are minors, we as the parents can call the lab to get verbal results. Because my kids have so many MDs. I explain that it's easier for me wo bring the labs to the other MDs apps. It really is more convenient.

It does. Thank you. Just another piece to the puzzle.......

I get confused with the histamine. Do most PANDAS kids have high histamine? If so, what does that mean? Also, how would you know if it wasn't appetite and was slow motility?

Really? Thanks? What's a ton? How much did he gain? My boys are stuck at 33lbs.

My 2 ds 4.5 have a difficult time with weight gain. Until about 5 seconds ago (after reading another post) it dawned on me, " could their refusal to eat be considered anorexia?". It's definitely not an image problem, their 4 years old. The GI and I have always thought it was from food sensitivities, reflux, being on antibiotics etc. but I just realized each time they are sick and get an antibiotic change, their appetite goes back to "normal" for them. The GI gave me a script for PeriactinMy to use. It an antihistamine with a side effect of increased appetite. I used it for my daughter, we actually had to stop, her appetite was TOO big. The GI also said for some reason, kids who get their tonsils out tend to have an increased appetite after. Which actuall happened to my daughter. She gained more weight since June than she has in almost 2 years! We have been considering taking their tonsils out, that would be a welcomed side effect!

We recently had a follow up with Dr. B. he suggested some food sensitivity testing. We already new they can't tolerate milk, soy and now wheat. Just got a copy of the IgG panel....15 out of 19 are over 2.0 (<2.0 is normal). Any experience with this? Our GI has said that their belly's are so sensitive from daily antibiotic use, she doesn't think they are genuinely sensitive to wheat and that when we stop abx, it will go away. Any thoughts? Thank you.