Our experience

[ptcgirl]

I haven't posted in a while, but I feel compelled to let everyone know about this and ask some questions. For the last few months my 13dd had been in a flare. Not a terrible horrible crisis mode one but significant since she was doing IVIGs and staying on abx. We thought Lyme had resurfaced: it hadn't. Coinfections: nope. No mycoplasma. No strep. I started to think this was her new baseline which really wasn't good enough. Completely confused me. Making a long story short, Dr had ordered candida blood test back in November but Dr never received them from LabCorp. I didn't even know it was ordered or I would have followed up on it. After much praying and frustration, we finally got the results in early January and dd was extremely high on Candida. Started her on Diflucan and nystatin. Within a couple of days she was well again. Flare gone. No symptoms. Happy. Healthy. Better than I think I've ever seen her. My parents made a statement that she was better than normal 13 year old girls. So I'm just thanking God that she is well and letting you guys know what happened to us. Now, how do we keep the Candida in check? I've read about Grapefruit seed, but she can't take it with Benadryl or her low dose of Zoloft (tapering off). Any ideas? I'm open to supplements. I know about the diet aspect but she is a vegetarian and taking carbs and fruit out of her diet won't happen here. Already giving one florastor a day. Not sure if it is enough or if we should switch. What do you guys do or think?

Thanks!!!

[Missmom]

I think florestor is good, but just curious why you are only giving one a day. The adult dosage is two a day.

[ptcgirl]

I think it is a mistake giving just the one. I read something about giving too much and decided to just do the one. How many do you give a day? She is 13 and about 130 lbs, so she is fine on adult dosages. How much should I give her? I've asked our drs and they really don't give a lot of credit to or info about probiotics. They just say to have her take one.

[LNN]

Sacc B (Florostar) makes my son angry, impulsive, hyper. Before increasing her florostar, you might try stopping it altogether and switching to a different probiotic for a few weeks. We rotate between Truflora (2x/week to fight yeast), Theralac and Ultimate Flora.

 

As for natural anti-yeast options, we use odorless garlic pills, 1/day at dinner. Haven't had a yeast issue since starting it 11 months ago (did have a 1 week herx when we started). We used to have big yeast issues.

[philamom]

Make sure you separate the Florastor from the Nystatin & Diflucan. Curious- are you giving benadryl daily?

[Dedee]

We use probiotics, nystatin, and garlic.

[ZaxMom]

Thanks for the Candida info. As for Florastor: my ds who is 8 has been taking two adult Florastors daily for almost three years. It was the best thing we ever did for his stomach issues. Just make sure that you don't give it to your daughter within two hours (before or after) of her abx.

[Missmom]

I think it is a mistake giving just the one. I read something about giving too much and decided to just do the one. How many do you give a day? She is 13 and about 130 lbs, so she is fine on adult dosages. How much should I give her? I've asked our drs and they really don't give a lot of credit to or info about probiotics. They just say to have her take one.

 

I take florestor myself because I had an issue with c diff and that is really good at helping keep c diff under control. I am about 5'2". and 115 lbs. I take one in morning and one at night. My son takes culturelle, and I would like to add florestor but don't want to make multiple changes at once so I will wait till his pandas symptoms are under control before adding it to him.

[mama2alex]

My ds12, 80lbs takes 2 Florastor before bed. We've been doing this for at least 2 years. I used to give him Caprylic Acid to fight yeast, but have switched to Yeast-Cleanse by Solaray. It contains Grapefruit Seed Extract, so it wouldn't be an option for you right now, but I like it because it contains a variety -caprylic acid, Pau D'Arco, Grapefruit Seed, Garlic, Licorice and Tea tree Oil. There might be a product like that without the GFS extract, not sure. I think its a good idea to switch it up periodically - I know I don't do this enough.

 

Thanks for sharing your story. I'm glad she's doing so well!

[ptcgirl]

Oh crap! I forgot about giving florastor at the same time as nystatin and diflucan. It will negate the probiotic, right? Pooh! I've totally been doing that. Benadryl is only as needed -- probably every few days for help with sleep or allergies. DD and I both are insomniacs (which when she is in a flare becomes terrible!). I think we will start the odorless garlic and switch the probiotic to Truflora, Theralac or Ultimate Flora (anything I need to know about these?). Apparently, I've wasted a whole month of probiotics.... Nothing like flushing $$ down the drain.

 

I really appreciate all your insights, everyone. My DD is having another fantastic day. It is nothing short of a miracle seeing how well she is. My dad was in tears last night when he came to visit. He is an atheist and said to me (I am a Christian), "Keep going to church. Looks like you got your miracle." Not trying to throw religion in this -- just how completely amazing this experience is for all of us. So thankful. I will to continue to pray for all of the children with PANDAS and also that mine will stay well.