Post C Diif, sore throat, panic attacks,

[JenniferG]

I don't know what to do. Natural isn't working. Homeopathy is making her worse. She is having a panic attack. Has a sore throat. Has been to school 7 days this year. When we start antibiotics her C Diff returns. She literally needs to be touching me to not hyperventilate. Now she is complaining of chest pain and hard time breathing. After BCH, hospitals scare me.

 

I feel like we have tried everything. Except IVIG

[MomWithOCDSon]

I would run, not walk, to your nearest PANDAS/PANS specialist for IVIG or PEX, though most of the IVIG protocols I've read about involve a period of abx following IVIG to help protect the child while the immune system rebuilds. Not sure about PEX, though.

 

I think one of those is your best option at this point. I know that Swedo prefers PEX but understands that it is both more costly and perhaps harder to persuade less PANDAS-savvy practitioners to utilize. Dr. L. is well known for utilizing that protocol, however, so perhaps you should reach out and see if you could schedule an appointment with her.

 

So sorry you're going through this.

[philamom]

Is she still testing positive for c-diff? The doctor should continue with flagyl or prescribe Vancomycin. I found the probiotic "Klaire Ther-biotic Detox Support" to be very helpful. We also use Florastor, Culturelle, Integrative probiotic pearls. Florastor alone did not prevent my daughter from a relapse of c-diff (after having it when she was younger). Btw- my daughter was never placed back on Augmentin after she got c-diff from it, but was able to take other antibiotics - we strengthened her gut with high dose cfu's first.

Edited October 22, 2012 by philamom

[JenniferG]

Is she still testing positive for c-diff? The doctor should continue with flagyl or prescribe Vancomycin. I found the probiotic "Klaire Ther-biotic Detox Support" to be very helpful. We also use Florastor, Culturelle, Integrative probiotic pearls. Florastor alone did not prevent my daughter from a relapse of c-diff (after having it when she was younger). Btw- my daughter was never placed back on Augmentin after she got c-diff from it, but was able to take other antibiotics - we strengthened her gut with high dose cfu's first.

Thank you. I have her on 6 Florastor a day, 25 Billion Culturelle and started Thera lac. What antibiotic was she able to take? How else are you treating PANDAS?

[sf_mom]

I have had C-Dif on two occasions and both times were shortly after starting Tindamax which is a cyst buster and will treat biofilms. Anyway, I was kept on antibiotics while treating for C-Dif. Vancomycin was just an antibiotic that was added to protocol.

 

More importantly have you seen a Dr. who specializes in TBI yet? The chest pain and difficultly breathing 'air hunger' are both obvious signs of Babesia and I am wondering if she has been tested.

 

-Wendy

[JenniferG]

I have had C-Dif on two occasions and both times were shortly after starting Tindamax which is a cyst buster and will treat biofilms. Anyway, I was kept on antibiotics while treating for C-Dif. Vancomycin was just an antibiotic that was added to protocol.

 

More importantly have you seen a Dr. who specializes in TBI yet? The chest pain and difficultly breathing 'air hunger' are both obvious signs of Babesia and I am wondering if she has been tested.

 

-Wendy

TBI?

[Mayzoo]

I have had C-Dif on two occasions and both times were shortly after starting Tindamax which is a cyst buster and will treat biofilms. Anyway, I was kept on antibiotics while treating for C-Dif. Vancomycin was just an antibiotic that was added to protocol.

 

More importantly have you seen a Dr. who specializes in TBI yet? The chest pain and difficultly breathing 'air hunger' are both obvious signs of Babesia and I am wondering if she has been tested.

 

-Wendy

TBI?

 

Tick Borne Illness

[JenniferG]

I don't know what to do. Natural isn't working. Homeopathy is making her worse. She is having a panic attack. Has a sore throat. Has been to school 7 days this year. When we start antibiotics her C Diff returns. She literally needs to be touching me to not hyperventilate. Now she is complaining of chest pain and hard time breathing. After BCH, hospitals scare me.

 

I feel like we have tried everything. Except IVIG

The c-dif takes 3-4 weeks to clear well. we get the compounded syrup vanco which does a good job coating the intestines. if you don't remove the dead toxins you will still hve symptoms. We use Cholesstyramine powder but charcoal or bentinite clay work well too. Youy need to keep detoxing for awhile after to get all the dead stuff out. Continue with probiotics at least 4 hours after each detox and I usually give a ton at bed so they can stay there all night. Sacromyces (sp?) bouillardi is not killed by antibiotics and can be given any time to help kill c-dif. I would treat this completely before going on tons of antibiotics again. You may not need them once the c-dif is all gone.

 

Nancy

She is non functioning. I had to give in and fill the script from the Pedi for Valium tonight. I am SO tempted to start her on the Azithromycin the Osteopath gave me. I called Dr. B to consult about IVIG.....next available appt is Dec 17!!

[hugs2day]

Clostridia can look like PANDAS I found out with my youngest. Treating the CDif with Flagyl and covering any possible yeast overgrowth with Diflucan at the same time was all he needed. Treatment was 30 days. Also gave Custom probiotic and sach b.

 

Clostridia is a trigger.

[philamom]

I suggest adding a probiotic that contains Lactobacillus rhamnosus and Bifidobacterium bifidum, along with the Florastor. All three are known to combat c-diff.

 

IVIG has been used in severe cases of c-diff.