Got our antibiotics today - First Timers

[Suzan]

Hi everyone and thank you for all your support over the past 2 or so months since we learned about PANDAS. Our Ped. gave us a prescription for zith today. He agreed to treat my girls but is having a hard time with the yeast issue with the antibiotics. He wants us to start on 125mg daily for 1 week and see how it goes. Then if we need to we can up it to 250 mg for the next 5 weeks. After that, we are to go to 125mg (250mg if necessary) 1x a week.

 

Any advice, things to look for, etc. when starting this protocol? Should I be worried about cutting back in 6 weeks? We take Caprylic Acid and probiotics for yeast issues. My kids won't drink Kefir. DD7 is allergic to dairy but I'm thinking of bringing in yogurt. Just worried about all the yeast and gut issues.

 

Anyway, I am happy we have a diagnosis and some direction although still worried about the future, future strep exposure or infection, future damage to their brain, etc.

 

PS... Is there a genetic factor? Is it unusual to have both girls with it? My 6 yr old is on the lower range of CamKinase at 118% and dd7 is mid range at 143%.

 

Susan

[colleenrn]

Susan,

In my opinion, it is definitely genetic. 3 of my 4 children definitely have PANDAS and signs have pointed towards the 4th also. In addition, we have a family history of rheumatic fever.

 

My 3 children have been on Zithromax 250mg per day since October. When I try to reduce it to 125mg/day I see symptoms increasing. I think it is great you are getting Zith for your children, but I would start with 250mg per day and then try to decrease it to 125 per day.

 

Did you get a positive culture recently? If there is any possibility that your children have strep somewhere in their bodies right now, I would think about doing 250/day, b/c 125 is not enough to treat an active infecton. In six weeks when you go to a lower dose, I would recommend not going to only once per week to begin. You may want to do every other day at first, then see if you can get it to 2x/week. That is just my two cents.

Good luck!

Colleen

[michele]

How did you convince your ped to get on board with Azith? Did you have a recommended course of action from a specialist? Are there specific articles you brought her? Our Cunningham testing was also positive for PANDAS but without a Dr. who knows how to treat it in our area I feel we have no choice but to go to a out of state specialist that has treated PANDAS successfully.

 

You can use culturelle for the yeast and probiotics. I also gave my son the Kefir strawberry. He still is having stomach issues though after being on antibiotics for two years. I am beginning to see why they don't recommend longterm antibiotics at NIMH. It is really wrecking havic on his bowels. He now has chronic diareah several times a day that he gets with no warning. I feel so bad for him because he messes himself several times a day. By the way he still got episodes while on the antibiotics so I don't know how well it helped. He was on Omnicef.

 

Hi everyone and thank you for all your support over the past 2 or so months since we learned about PANDAS. Our Ped. gave us a prescription for zith today. He agreed to treat my girls but is having a hard time with the yeast issue with the antibiotics. He wants us to start on 125mg daily for 1 week and see how it goes. Then if we need to we can up it to 250 mg for the next 5 weeks. After that, we are to go to 125mg (250mg if necessary) 1x a week.

 

Any advice, things to look for, etc. when starting this protocol? Should I be worried about cutting back in 6 weeks? We take Caprylic Acid and probiotics for yeast issues. My kids won't drink Kefir. DD7 is allergic to dairy but I'm thinking of bringing in yogurt. Just worried about all the yeast and gut issues.

 

Anyway, I am happy we have a diagnosis and some direction although still worried about the future, future strep exposure or infection, future damage to their brain, etc.

 

PS... Is there a genetic factor? Is it unusual to have both girls with it? My 6 yr old is on the lower range of CamKinase at 118% and dd7 is mid range at 143%.

 

Susan

[ShaesMom]

[Any advice, things to look for, etc. when starting this protocol? Should I be worried about cutting back in 6 weeks? We take Caprylic Acid and probiotics for yeast issues. My kids won't drink Kefir. DD7 is allergic to dairy but I'm thinking of bringing in yogurt. Just worried about all the yeast and gut issues.

Susan

 

 

Susan,

 

As the parent of a dd6 who is also allergic to dairy--don't add it to her diet. My dd gets tummy issues and mood issues when dairy is ingested. If this happens to your dd how will you be able to tell if it is the PANDAS or a reaction to dairy. Also, dairy makes her feel crummy. I'm guessing your dd already feels crummy most of the time and you don't want to make her feel worse.

 

I have found organic Soyogurt with Probiotics by a company called Wildwood. They carry it at my local grocery store but you can probably find it a health food store. I make a shake with it for her with strawberries and soy milk.

 

Sam

[Suzan]

Susan,

In my opinion, it is definitely genetic. 3 of my 4 children definitely have PANDAS and signs have pointed towards the 4th also. In addition, we have a family history of rheumatic fever.

 

My 3 children have been on Zithromax 250mg per day since October. When I try to reduce it to 125mg/day I see symptoms increasing. I think it is great you are getting Zith for your children, but I would start with 250mg per day and then try to decrease it to 125 per day.

 

Did you get a positive culture recently? If there is any possibility that your children have strep somewhere in their bodies right now, I would think about doing 250/day, b/c 125 is not enough to treat an active infecton. In six weeks when you go to a lower dose, I would recommend not going to only once per week to begin. You may want to do every other day at first, then see if you can get it to 2x/week. That is just my two cents.

Good luck!

Colleen

 

Thanks Colleen, I think this is good advice. I do think they have strep somewhere in their bodies... They continue to get signs of Vag. Strep and they continue to have rheumatic type symptoms and PANDAS symptoms. Their last positive strep culture was about a month ago. Our doc treated with 5 days of zith at that time. I think I can go ahead and make this change since he gave us enough to do this and talk to him about what I see in a month or two.

 

susan

[Suzan]

How did you convince your ped to get on board with Azith? Did you have a recommended course of action from a specialist? Are there specific articles you brought her? Our Cunningham testing was also positive for PANDAS but without a Dr. who knows how to treat it in our area I feel we have no choice but to go to a out of state specialist that has treated PANDAS successfully.

 

You can use culturelle for the yeast and probiotics. I also gave my son the Kefir strawberry. He still is having stomach issues though after being on antibiotics for two years. I am beginning to see why they don't recommend longterm antibiotics at NIMH. It is really wrecking havic on his bowels. He now has chronic diareah several times a day that he gets with no warning. I feel so bad for him because he messes himself several times a day. By the way he still got episodes while on the antibiotics so I don't know how well it helped. He was on Omnicef.

 

Thanks for the suggestions! Our doctor is a Dan! doctor and he knew of PANDAS and thought it could be possible that the girls had it. I told him about Dr. Cunningham's new test and he agreed to treat however was recommended based on a positive test result. I think we basically got pretty lucky there. You can see he's still having some issues with the concept so I just hope he'll continue with the zith if it works for us!!

 

susan

[Suzan]

As the parent of a dd6 who is also allergic to dairy--don't add it to her diet. My dd gets tummy issues and mood issues when dairy is ingested. If this happens to your dd how will you be able to tell if it is the PANDAS or a reaction to dairy. Also, dairy makes her feel crummy. I'm guessing your dd already feels crummy most of the time and you don't want to make her feel worse.

 

I have found organic Soyogurt with Probiotics by a company called Wildwood. They carry it at my local grocery store but you can probably find it a health food store. I make a shake with it for her with strawberries and soy milk.

 

Sam

 

Yeah, Sam, you are probably right about the dairy and I do want to be sure I can determine the cause of any symptoms she's having. Unfortunately she's also sensitive to soy. It seems to give her a huge belly and some mood changes too. Thanks!

 

Susan

[dut]

hello.. I'd also add in saccharomyces boulardii, it's a good yeast that competes for space etc with the bad yeast. We use a brand called Florastor. It's expensive at $50 per bottle for 50 capsules. They say 2 per day but we find that 1 per day plus a good quality probiotic seems to work for us, our dd is on 250mg zith once per week for prophylaxis.

[T_Mom]

Susan,

We have used the "Good Belly" probiotic drinks (Whole Foods carries these) both in a large container and in daily "shots". It is non-dairy and fruit based (watermelon/cranberry/mango types) probiotic, (strong.) I try to have my d drink it at two meals at least during the day, each time at least one serving or one "shot", worked well for us thus far.

[EAMom]

I completely agree with Colleen on the Azith. dosing.

 

Dut...250mg/week sounds low for prophylaxis. In the Swedo Azith/pen study they used 500mg/week. I wouldn't go much lower than that even if your child is very small.

[Suzan]

Susan,

We have used the "Good Belly" probiotic drinks (Whole Foods carries these) both in a large container and in daily "shots". It is non-dairy and fruit based (watermelon/cranberry/mango types) probiotic, (strong.) I try to have my d drink it at two meals at least during the day, each time at least one serving or one "shot", worked well for us thus far.

 

Ooooooh, this looks super great! I hope my kids like it. I found a buy one get one free coupon on the internet.

 

 

http://www.goodbelly.com/coupons

[ShaesMom]

T. Mom--Thanks for info. We'll definitely have to try these as well.

[dut]

sorry - my bad - it is 500mg we're on... sorry hadn't woken up properly when I posted that one :-)

[colleenrn]

Hi. I also wanted to add this piece of info and I have posted about it once before. My sister's pediatrician, who is conservative and does not give out antibiotics lightly, insists that as a TREATMENT dose for strep, Zithromax 500mg/day is required, even in the case of my 8 year old niece who weighs 60 lb. My sister is supposed to ask her if there is any literature or studies regarding this dose, but this physician stays very current on literature and I trust what she says. IF this is the case, we may be undermedicationg in cases of active strep. I just wanted to put this out there.

Colleen