philamom

I so agree!!!!

I'm considering making some changes in my daughter's diet and appreciate the helpful suggestions here. With school approaching (hopefully, i get her back this year), I don't have alot of time for food preparation. Is there any more brand names of GF products that are recommended? Thank you!

Thanks for the info. is it hard to get an appt w/ Dr B? He is only about 1 hour away from me. No, not at all. He will want to see a copy of the recent lab work you had done. I suggest making an appt. now and if needed, you can reschedule or cancel. And he does accept insurance.

I also know of a family off the forum who has had PEX with Dr. E and is currently doing IVIG with Dr. B. My daughter also has an immune deficiency and is receiving treatment with him. He is a wonderful doctor! Let me know how you make out with the lab tests.

How long would you space it apart from the florastor- 2hours? 3hours? Also, I'm too paranoid to give any probiotics with my daughter's abx.

OK--I just read the pamplet that comes with the Florastor and it answered my question. It should not be taken with any antifungal products.

JT's Mom- I'm guessing "Florastor" Saccharomyces boulardii is not a (bacterial) probiotic since it's a good yeast? Do you think I should give it apart from the antifungal?

Kefir does not have the strep bacteria strain in it and it is a super-powerful probiotic. if you have a dairy or casein problem, you can buy coconut milk w/ kefir strain. it is also fairly easy to make yourself. that way you can be sure of the bacteria used and use any type of "milk." My son used to react to yogurts, but they also tend to have lots of sugar, so it is hard to tell what the reaction is to. The brand of Kefir (Lifeway) we drink does have the strain listed. I pulled this off the internet: Today, Yogurt is strictly defined as a milk product produced by the action of two bacteria- Streptoccus thermophilus and Lactobacillus bulgaricus. In addition, yogurt may contain other strains. The first two are NEEDED to covert milk to yogurt and the other strains are added because of their health promoting properties.

I enjoy Stonyfield yogurts...very tasty and nutritious. Also good, is FAGE lowfat greek strained yogurt with fruit. But again, I think Strep thermo is used as part of the process in making yogurt and kefir...am I wrong? If concerned, you could always call the manufacturer and ask them. I give my daughter "Good Belly" strawberry probiotic drink...it's dairy free and comes in a little cup.

I just looked up go gurt at Yoplait's website and it does have the strep strain. Lactobacilus and Streptococcus thermophilus are the two cultures added to milk to create yogurt. So I'm assuming that's all yogurt...but not sure about soy.

I also was wondering if yeast supplements can be given at the same time as probiotics?

He says it might be a factor for some children (not all). My daughter's doctor said there is no correlation, but recently my daughter had an increase in symptoms when we introduced a new probiotic with it--we stopped it and the symptoms decreased. I have to say, we do avoid yogurt/kefir because of it. I think soy yogurt is ok.

Hi Philamom, Yes, she's om azith and flagyl and this is the 2nd time around on flagyl. I have been meaning to update but I'm so scared to jinx myself I keep putting it off. Her DAN upped her Flagyl dosage from 6.25cc 2x/day to 10cc 2x/day. He said she wasn't responding to the flagyl the 2nd time around because her body had adjusted to the previous (6.25) dose. He upped her to 10 cc for 1 month. We are 8 days into the upped dosage and things are amazing again. Her vocals are down to 5-10 a day (today I heard 3). Her motor tics have changed a bit (she has a nose scrunching tic now) but it is not really noticeable to anyone. She just ended a 2 month stint on Diflucan so her DAN now has her on Enhansa for yeast. Today is day 2. He said to expect some die-off so maybe that's where the increase in motor tics is coming from. Her tics seemed to change though when we upped the flagyl to 10cc. I was thinking it could be die-off from the flagyl. Too many things going on at once right now to tell. I am really happy overall with where we are so I hope things will stabilize for a while and maybe get even better. Thanks for asking !! Caring Mom My dd9 was taking 250mg/ml three times a day...is that comparable to 10cc 2x/day? I'm so glad to hear her vocals are down!! Can you give me more info on the Enhansa?

I wonder if it is more a question of whether an antibiotic is good for a particular infection / inflammatory process. What I mean is that my son has had tics with sinusitis and he has done well with augmentin. However, at one point he needed flagyl - becuase the sinusitis was caused by different bacteria. At times he has needed diflucan because the sinusitis was caused by fungus. Sometimes he needs allergy medication because the inflammation is allergy-related. Most recently, he had neck tics after a round of biaxin for sinusitis ended (could it be herxing?) this resolved with a round of omnicef with a 5 day steroid burst. 2 months later, while on omnicef, he was exposed to mycoplasma and had a high fever, so we switched him over to azith as it was better for mycoplasma. He did well on a 10 day course, but when he returned to omnicef his symptoms started increasing - we put him back on Azith with an assumption that mycoplasma was still the culprit - and he did very well. I am wondering if others have had similar experiences with different types of infections. How did they know which type of bacteria was in the sinusus? What type of bacteria was the flagyl used for? It sounds like you have a great doctor willing to prescribe different abx--is it a DAN?

Worried Dad- Good article. Thanks for posting it.

Caring Mom- Is she on both abx? This is your second round of Flagyl, correct? How is she doing?

I'm not so sure it has more to do with "something happened with strep this year" but because FINALLY pandas is getting more recognized, thus people seeking out treatment. I found Dr. E extremely nice when we saw her 15 months ago and she agreed my daughter had PANDAS (was already diagnosed)...but she was against proph. abx and recommended waiting until my daughter was completely non-functional, and then consider PEX. I'm glad to see changes are being made!!! Yes, I agree with Dr. chansky being a guardian angel.

Thank you...that would be great. You are no longer seeing Dr. B, correct?

Is this a blood test? Can any Immuniologist run this? Thanks!

We haven't received coverage for my daughter's first IVIG 14 months ago...we're still appealing Aetna. We are now getting infusions covered by them under an immune deficiency diagnosis.

My heart really goes out to you! The psychiatrist sounds like a real *@^#!! I would think there's an easier way to work around a fear of a blood pressure cuff. I hope it goes a LOT smoother next time!

I think I'll make a pot for the both of us I'm looking for something to help wind my daughter down before bedtime. I used the melatonin but I think it increases her nightime awakenings and gives her nightmares... even at a small dose. Thank you!

Does the Lemon Balm tea taste lemony or minty? Is it caffeine free? Do you think it's ok for a 9yr old? Thanks!

Good luck with your appointment! I sent you a pm with the labs.

You are Amazing! Strong & Smart!!!