Probitic confusion,post lVlG confusion

[minimaxwell]

I have been searching this forum and now I am even more confused. Would love some help on what to use. I know every child reacts in a different way.

 

My 17 yr old DD was recently dx PANDAS. Dr. T told her no yogurt or cold cheese. Also no probiotic w/strep. Dr. K totally disagrees with all of this. After reading some posts and other research we have decided to stay clear of these -- just to err on the side of caution.

 

About 6 months ago Dr. Dan Geller put her on Azith. This was at my suggestion- we did not have a dx yet from Dr. T. She lasted 3 weeks, terrible stomach distress everyday. She started the probiotic (50 billion,no strep the same day). After 3 weeks she discontinued, at that time she was not convinced she had PANDAS.

 

A few months later we got into Dr. T who convinced us it was PANS (mycoplasma triggers). We started Augmentin and Biaxin. First day a little diarrhea again. Second day excruciating pain,ended up in ER. Was admitted for Acute Pancreatitis. Will never know what caused this, ..virus..infection or rare reaction to Biaxin. Then me met with Dr. K who suggested lVlG. Dr. T agreed. So off to Chicago we went. Just completed lVlG yesterday.

 

So here is my dilemma.. Dr. K believes it all stems from Strep and gives only Augmentin. Dr. T says you need another abx to cover for Myco. Dr. K says to give Florastor for 14 days and then she will be fine. I would rather give her more support just don't know what to do. I was thinking about doing the Florastor and Pearls as well as adding in some Cultrelle and other Probiotics. thinking if I rotate in some others I can cover more ground.

 

Also want to add in Doxy,thinking of waiting a few days to make sure she doesn't get sick from the Augmentin first.

 

This forum has been a life saver for us. I will be eternally grateful for all the knowledge I have acquired here. Currently working with Dr. Jenike and Dr. Geller to make lVlG available for PANDAS kids in the Boston area. Crazy to me that families have to travel for this! That can be a whole topic itself

Thanks,

Tiffani

[bulldog24]

well for me personally- Probitoics make me sooo much worse. I tend to leave well enough alone for myself. If I take them I get horrible stomach pains, diarrhea

 

I take tons of abx 5 years and no major issue with my belly or cdiff (knocking on wood)

 

I rarely take probiotics,

 

My son handles culturelle fine. But I would ask the docs if the probiotics are too much for your child.

[socalmom]

Dr. T says to steer clear of these as well. I trust his judgement, the man knows his stuff. Better safe than sorry I say.

 

 

Our Dr. who did IVIG did not know this and I brought it to his attention, due to the fact his nurse was handing out a paper after IVIG with foods high in Vit C and Tryptophan and raw cheese and yoghurt was on this list.

[patric]

We use Sachs B. and kefir Lifeway post ivig. Without probiotics my son will have tummy trouble. I was under the impression from the forum that the kefir lifeway brand is a good choice as it doesn't have the strep. Is this correct? I would love some info. too. He seems to do very well with it.

Thanks !

Mini maxwell, I hope you like the Chicago weather we are having! It is never this warm in march!

[patric]

I also believe there is no set protocol yet on treatments and follow up as we are all pioneers Learning by trial and error and learning from each other and the doctors. Perhaps the kids who come after ours will benefit from our wisdom and the doctors wisdom. Hopefully , in the future when a child is diagnosed he/she will be givens standard protocol to follow. Until then, it is wonderful to have the doctors and this forum to rely on but can make it confusing as well. Wish I had a crystal ball!

[nicklemama]

Dr T initially diagnosed our DS. He had IVIG in Chicago last May w/ Dr K. We have been giving DS Florastor (Saccromyces boulliardi) since Dr T started him on biaxin in Oct 2010. He takes one capsule, twice a day. We've had no stomach issues. DS is currently still on the augmentin that Dr K prescribed post IVIG. Prior, he was on azith prescribed by Dr T after a couple of months on biaxin. He's done really well. Each dr has his/her own protocol. Sometimes you have to take the best of several to make it work for your child.

[minimaxwell]

We use Sachs B. and kefir Lifeway post ivig. Without probiotics my son will have tummy trouble. I was under the impression from the forum that the kefir lifeway brand is a good choice as it doesn't have the strep. Is this correct? I would love some info. too. He seems to do very well with it.

Thanks !

Mini maxwell, I hope you like the Chicago weather we are having! It is never this warm in march!

 

Hi patric,

we loved the weather! Will you be at the conference in July? i plan on coming with 2 other MA PANDAS Moms. Would love to meet up with you.

Best,

Tiffani

[socalmom]

I think someone on here said Lifeway Kefir is strep thermophilus free, you could always call Lifeway.