VSL3 Packets and PANDAS

[FallingApart]

Is it safe to assume that most if not all on this board are also dealing with PANDAS?

 

I got our ped to write an RX for the VSL packets and I picked them up yesterday. I was so excited and thankful to have this portion of the treatment under insurance. THen I see that the first ingredient listed is S. THermopolis. I belive that some of you are using this or have considered it. Can you tell me your thoughts on using such a potent probiotic with strep in it if you have a PNADAS child? We are currently using HLC Child which is miniscule in comparison to the potency of the VSL but it doesn't have any strep in it. I did not give the VSL packet to my PANDAS DD because I am too scared. I gave a small amount of it to my strep carrier DD but even then I'm concerned. I think scientifically I have no reason to be scared, but I still am.

[pixiesmommy]

It really seems like everyone has their own experience with it. I avoid it because any form of strep really freaks me out, and some parents say it causes an exacerbation, while others say they see no change.

[philamom]

y

Edited April 29, 2012 by philamom

[Guest TwinCitiesMom]

We have been using 2 packets per day since December 2010. We have not noticed it to cause a worsening of pandas symptoms. Our biomedical practitioner did not consider the strep thermophilus to be a problem for our pandas son. There are some papers out there that discuss the safety of supplementing with strep thermophilus probiotics. For us, the packets have been an easy way to get a large amount of probiotics in his diet.

[Suzan]

I used to stay away from probiotics with S. THermopolis in it due to pandas but since the lyme treatment, we have been using VSL#3 pills. I assume it has the same stuff in it as the powder but I actually don't know. It has worked very well for us with no issues.

 

Susan

[GraceUnderPressure]

We tried the packets, but as I mentioned on another thread, had a difficult time masking the smell/flavor without overdoing the juice (which we're supposed to be limiting because of candida issues). We switched to the capsules - same probiotics just lesser amount - and had no problem with them. But then we think our ds's problem is probably PITANDS as we don't have a track record with strep (at least that we detected anyway) and his exacerbations seem more generalized than specific. I would guess it would be more of an issue for those who have become hyper-sensitized to strep in particular?

 

Would those of you using the packets mind sharing how your kids are taking it?

[Guest TwinCitiesMom]

We tried the packets, but as I mentioned on another thread, had a difficult time masking the smell/flavor without overdoing the juice (which we're supposed to be limiting because of candida issues). We switched to the capsules - same probiotics just lesser amount - and had no problem with them. But then we think our ds's problem is probably PITANDS as we don't have a track record with strep (at least that we detected anyway) and his exacerbations seem more generalized than specific. I would guess it would be more of an issue for those who have become hyper-sensitized to strep in particular?

 

Would those of you using the packets mind sharing how your kids are taking it?

 

We are using 2 packets a day in a shake. We are avoiding dairy and soy, but we are trying to add calories and good fats. We use Coconut Bliss ice cream in dark chocolate and/or vanilla, a dash of coconut milk, 1/4 cup of either organic light olive oil, canola oil, or macadamia nut oil, 2 raw organic eggs, and 2 packets of VSL DS #3. Our son is VERY rigid about his diet so we do what we can. He has no idea what is in the shake. There is still a lot of sugar, so we treat for yeast. It makes a big shake, but he is 14yo. He drinks it in the middle of the day between antibiotics. There is still a coconut taste to the shake, but it has a creamy, rich consistency very much like real ice cream. It does not taste synthetic or strange. The packets change the flavor a little, but blend in well with a blender.