JenniferG

We do Epsom salt baths. Out ND said 1.5-2 cups for a tub. My dd is 9 and weighs 60lbs.

My dd has been battling C Diff for months. If you suspect it, get a culture. It isn't something to mess with. We did see fast improvement in symptoms with Florastor...but you need to continue it.

Meg had IVIG last Tues/Wed. thurs she was GREAT...playing alone upstairs....this is HUGE. Had hardly any side effects...a slight headache one day. All of a sudden her anxiety has sky rocketed. Today she said she felt weird zaps in her chest and head. She is freaking out. Dr. B gave me low dose Amoxicillin to try (because of C Diff history). Then she a 3 min bout of a quarter sized read itchy spot in the center of her chest. And she she's spots. We have tried Olive Leaf Extract, Enhansa, A Bio, homeopathy, naturals..... list goes on. I feel like nothing is helping..or for that matter making her worse. Can someone chime in on some doses and regimens and spacing? Maybe I am overloading her and she is herxing? Not sure, but she is getting really depressed also Thank you

Is anyone using OLE as a prophylactic? For coverage? Does it help with OCD?anxiety? Whats the dose? Thanks.

I was just wondering if anyone has tried using Camel Milk. If is supposed to be very beneficial. I am taking the plunge and will keep you posted! http://www.camelmilkassociation.com

My daughter is schedule for her first IVIG tomorrow with Dr. B. I was just wondering if someone could give me the general course of events after arriving. Do they get you started right away? Our appt is at 2:30 and they said it would take 5-6 hours. Are they there late? Do they insert a new IV both days, or do you go home with it and the same one is used the next day. Meg is PETRIFIED. How long we're you there, realistically. I have a 1h and 15min drive home. How is the staff? Child friendly? Any helpful hints? Thank you so much.

Dr B tested our whole house, on several occasions. Everyone has always tested negative. Just this year my mother moved in with us (coincidently this is when my 3 kids started exacerbating). Meg has been out of school since September and we start IVIG in 2 weeks. Dr. B retested everyone and my mother and myself are positive for Mycoplasma!! Her number is higher than mine. I am assuming she gave it to me?? How is this treated? Long term or short term antibiotics? Thanks!! I have hopes that this is our ticket!!

Thanks!

Meg tested positive for the MTHFR Gene Mutation. I haven't spoke to the MD yet, but, I want to be educated before I do. This has to do with Methylation correct? And vitamins B? I have reac a couple of different websites, but, do not understand them completely. Can someone give me the "dummy" version? . Thanks!!!

We had labs drawn. HSV was high. Tried acyclovir in Aug for 1 son....breakouts completely gone. He would break out all the time. As soon as 1 healed, another would be up. AND that has greatly help exacerbations for him.

Meg was diagnosed with a new heart murmur at 6. I am convinced is was because of the years of u diagnosed strep. Now she is off antibiotics since Aug and is having "chest pain" (upper L near armpit) some "air hunger" or and just today a little shortness of breath. She does have C Diff. She is SO pale and exhausted. She had a normal EKG 2 weeks ago and her lungss are clear. Am I over reacting, or could she have Rheumatic Fever.. Oh and a low grade fever...

Meg started her steroid taper today. WOW! What a rage! Spoke to MD, he said it was because of the taper and said it wasn't enough ( he originally only gave her 1/2 dose). So he bumped her up. We saw LLMD today. No Lyme concerns. Was very pleased that the natural antibiotic showed the side effects.....that means its working. When I said the Immunologist thought IVIG, he said do it. So my questions now are, what next? The office said to just call tomorrow and schedule? Do they have a protocol? Any tips out there for a "low side effect"? I did my research on risks.....but didn't understand dosing? I would guess there is a standard mg/kg dose. Does anyone have IVIG experience with Dr. B? Thank you!!

We live in CT. Darien and Stamford were hit hard. We saw Dr B on Wed 10/31.......in Stamford. Their Darien office has no power or computers. I spoke with Stella yesterday and they are still without power/computers in Darien. I was able to leave a message after hours and that's how I was in touch.

Meg started A Bio a few weeks ago. I didn't put 2 and 2 together until today. Her anxiety has been getting worse. But we started steroids on Halloween, with great results. Except for today. Coincidently, I called Dr. Moorcroft to ask him if I can change the A Bio (it has to be taken 1 hour away from everything). It is twice a day and with everything else it is difficult to fit in. He said yes, go to one a day but increase it one drop. Her air hunger symptom GREATLY increased. I thought maybe an allergy to it. But the website says to go really slow because of die effects. Is air hunger a die off? Of course, then I ran into something about Babesia. That pos p41 keeps haunting us!

Today is day 3 and it stopped working!! What's up with that!?!? He does have her on half the dose for her weight. Could the be it?

I also am starting natural antibiotics....olive leaf extract and oregano oil. How do you dose it? Capsule? Drops?

I also am starting natural antibiotics....olive leaf extract and oregano oil. How do you dose it? Capsule? Drops?

What did Dr. T say? Good idea? I have been contemplating using it.

Saw Dr. B yesterday. Meg has C Diff back. So she can't start abx. We are natural abx. But he wants to try steroids. She hasn't been to school since mid Sept. severe anxiety. Have 1 dose last night and 1 this AM and she is back!!! How long will this last? With the taper will she fall back "into" it?

I spent the day in the ER today with Meg. Chest pain, hard to breathe, panic. EKG completely normal, lungs perfectly clear. Clearly anxiety. Even the APRN and MD suggested IVIG because of the C Diff and lack of ability to handle abx anymore. Spoke to Dr. T last night and he suggested Motrin and IVIG. I contacted Dr. B again today and expressed my immediate concerns and she said she would get back to me by days end. 7:45...no phone call. I know we aren't the only patients in this severity, but no return call???? Any suggestions? She is taking: Enhansa Rescue Remedy Aconite (homeopathy) Motrin Vit C Thera Lac Culturelle Florostor We were given for an as needed She is pale, tired, lethargic, not eating and I think becoming depressed.

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!!

Meg is still out of school and having serious anxiety. She is complaining of a hard time breathing and complaining of intermittent chest pain. Saw Pedi today. Gave 2mg Valium. Heart and lungs clear. Has anyone used this on their child?

TBI?

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?

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