JenniferG

What do you mean by "compound" hetero. My daughter is hetero for MTFHR. We tried really low dose awhile ago...but she didn't do well... I think. It was in the middle of a mess of other things. And now we are stuck. She has yeast issues and I worry she has trouble detoxing. Our integrative wants to address the issue but she wants to start off high. And isn't concerned about other mutations. What is the problem with fish oils and COMT and CBS mutations? We have been on Vit D 2000 IU. It brought up the level from 30's to 50's. But it took 6-8 months. Copper...if she put them on Zinc would it bring it down....even if it wasn't high?

We have been recommended to maybe start Amphotercin B. From what I read it sounds like big guns. Am I misled? The MD made it sound like it wasn't systemic.

So regular antibiotics won't touch this? Does it have to be Peridex? Can you get a xylitol rinse at your local store??

Just swabbed boys mouth, cheek, gums, teeth......instantly positive!!!!! Wish I would have seen you post about teeth only first, mayzoo. So they were just put on Rifampin and one son has gotten sever belly pain and diarrhea. Does he need to even be on it? Is this a topical thing that systemic antibiotics won't cover? Now what??

Is it good for PANDAS/PANS or not? All 3 of my kiddos have yeast and gut issues. Daily abx, antivirals. Have trouble tolerating probiotics. Food sensitivities change each time we test because of leaky gut. Would Glutamine help or trigger the immune system?

Looking into IGG 2000. Has anyone been on it long term? What are the results? Decreased infections? I shouldn't stimulate the immune system, right?

We have had a hard time getting strep cultures to be positive. I purchased that at home kit for rapid strep. Still negatives left and right. And then this year I am watching the Pedi do a r/s and she says as she is doing to that she needs to touch my sons cheek first to wet it. So I started doing that at home...cheek and tongue. Now I have been getting positive cultures left and right. We having been battling recurrent strep since Jan. And they just got their tonsils out 3 weeks ago. So tomorrow I am culturing the tongue and cheek only!!

Anything new???

I am researching other avenues....as everyone does when one avenue ends.. I am interested in any experience with OLE How old is your child? What is the dose? Do you use it as a prophylaxis or as needed? As an antibacterial, antiviral or anti fungal? How long have you been on it? Do you take any meds that do that same thing? i.e. pharmaceutical abx, antiviral, anti fungal.....or does it work well alone Thank you so much!!

Was suggested to us to add Rifampin to our Duricef. Positvie strep on several different antibiotics and post T&A 4 weeks. What are some experiences with it? Side Effects? Is it an old druG? Thanks

Dd10 has been on Nystatin for awhile. Slowly increasing. I didn't see too much of an improvement so I stopped and started GSE. Her tics really ramped up. I stopped GSE and restarted Nystatin ...more and faster. Tics almost gone but she can't deal with the side effects. What else are you using?? And her OCD has increased which was gone for a long time. She is also in Valtrex. Which I heard can stir up yeast. Do you stop viral treatment to treat yeast?

I have 3 children. DD10 and DS6 (twins). The boys just got their tonsils out on April 15 AND HAVE A + HOME R/S! I am floored. They were on Augmentin and dd10 had a + r/s on it. Changed to Azith. (Or maybe vice versa). Sorry. It's been a long month. Anyway. She tested positive on both. So she was changed to Duricef. They seemed to be doing well for a few weeks. Then one son started complaining of headaches, bellyaches and kicked up anxiety. The other son's OCD kicked up. I just did a r/s and one is very + and the other is very faint. Dd10 is negative. When my daughter tested + last time and was put on Duricef, they switched the boys to Duricef. Here is my question: can siblings that all have PANDAS do better on different abx? If it's group A...than why doesnt the same abx work? Am I asking that right??? *Brought them to Pedi today both R/S Pos. And send out cultures done. Alternative MD suggests adding Rifampin to Duricef. Pedi suggests changing to Augmentin. Any experience good?bad with Rifampin?

A LOT. I started a week before (recommended by other parents here and RN at MD office). My dd was 8 at the time and around 50lbs. We always had a bottle of water with us where ever we went. I counted. I made sure she drank at LEAST 8-8oz cups a day of water. Anything else was a bonus. And during too. She had no post IVIG symptoms. None.

We had severe eating issues with all 3 of mine. When my dd10 was 4-6 years old she was a small eater. She was always very petite. Never realized, thought anything of it. She had a T&A in 1st grade and gained 11lbs in 1 year. All eating issues were resolved. My ds6 (twin boys) are way smaller. And have severe eating issues. We saw Dietician/Nutritionist, used weight gainers etc. they just had NO appetite. Got their T&A 2 weeks ago.....didn't lose an ounce.....had an appetite from the minute they could eat Popsicles! I kid you not. They are back to school this week and one of them said to me...mommy, you need to pack me more food. I was starving today. Our lunch boxes used to come home daily still plump full. It really is amazing. An increased appetite is actually a side effect of a T&A. Our ENT said that obesity is a problem with kids that have it, they aren't sure of the connection.

I posted a week ago questioning if the Streptomyces in Nystatin could be causing tics. I stopped it and everyday since she has been getting more, new, different tics. She had a slight arm tic. Then it went to a chest tic and since yesterday she has a sniffing tic and a leg tic. I started her on GSE a few days ago. My question is... Is the GSE causing the tic? Or Are the tics a die off of the GSE? Or Are the tics from not being on Nystatin and having yeast under control?

Frequent wiping and feeling still wet is one if the only signs of my dd10 having strep throat. She was diagnosed with PANDAS 5 years ago.

Is she now on daily Azith? Do you do the home r/s? When I try to work up the Enhansa she gets emotional etc. she is also homo for a1298c mthfr. So I think she may have a methyl issue. Sounds like I know what I am talking about, but, honestly, that MTHFR confuses me.

LLM- what dosage did you use of Nystatin? Did you slowly work up? Did it cause nausea?

I did not give her last night or thi AM dose. She was very snappy and cranky today. Emotional. I can't figure out what is going on. This flare has lasted forever. She had a positive r/s while on Augmentin. Changes to Azith behavior got a little better but she got a fever and her r/s was still positive. They also did a send out culture which was negative. Changed her to Duricef to be safe. She is also on Valtrex, Nystatin, Vit C, Vit D, Fish Oil. She was on Enhansa 150mg a day but I stopped it to see if she was reacting to it. She did well for 2 days. She had 2+ Clostridia on her Dec stool test. Wasn't C Diff tho. 4+ B Fragilis 4+ Bifido 3+ E Coli, 2+ Lactobac,3+ Enteroc,1+ Candida Parapsilosis. High Lysozyme. High Secretory IGA. I am clueless. Feel like tried everything. She had C Diff last year and that is where she took a nose dive. Hasn't been right since then Aug 2012. She was thriving on daily Aug for years before that. I don't understand. I am desperate.

Could my child possibly reacting from Nystatin?? It is made from Streptomyces Noursei. Stopped Nystatin. Today is day 4 since she has had it. I slowly stopped it. She has been getting more emotional each day. And last night and today she is very congested. 1. Is the congestion a coincidence? Or could yeast cause it? 2. How often/quickly do you bump up Nystatin when you use it? Could I be taking too long to increase the dose? She was on 2 tabs AM and 1PM. I don't increase it without a few months in between. Is that waiting too long and that is why she is not showing improvement? 3. Anyone use GSE and Nystatin? 125mg tabs GSE tabs 4. She has had C Diff. The Nystatin is killing Sach B, so I should be supplementing with that also?

Is there Bakers Yeast in Probiotics?

When you use Laricidn and/or L Lysine....does it work for behaviors also? My twin ds6 are on Acyclovir 400mg 2xd and when they aren't they have ADHD, anxiety and OCD. Do the naturals work for symptoms also or just prevention? Thanks.

My dd10 had a + rapid strep last Friday. She takes Aug 400 2xd. She was switched to Azith. On Sunday she developed a fever. Rapid strep Monday +. They did a throat culture and put her on Duricef. Results on culture are negative. How is that possible? I did a rapid strep at home last night....still positive.

Do natural antibiotics and Antivirals have the same side effects on the gut as prescriptions? Are they commonly used regularly? Do they work? Thank you!

Technically, if Enhansa is an Immunmodulating supplement, can it increase or cause tics?? Or cause a low grade fever?