philamom

My daughter recently started taking Glutagenics (L-glutanine) for gastro support. Was wondering if anyone taking this type of supplement had any negative side effects. Melinda

I THINK she does it a different way than Dr. L, does the procedure in one day. She's also very conservative on the abx afterwards. She may have changed her protocol though. I'm in contact with someone off the forum, who's daughter had pex with Dr. E but is now doing Ivig with Dr. B. I went for a consultation. It takes 2 hours. they put an IV in each arm [but it is metal "tubing"] the blood goes through a machine and back [sorry for my lack of proper terminology]. the child watches movies is fed ice cream so on..... Yes, I'm sure that is different than how Dr. L does PEX. I don't have experience with the procedure but hopefully someone else will chime in.

I THINK she does it a different way than Dr. L, does the procedure in one day. She's also very conservative on the abx afterwards. She may have changed her protocol though. I'm in contact with someone off the forum, who's daughter had pex with Dr. E but is now doing Ivig with Dr. B.

I'm interested in the support group! Will you be the posting the details?

Thank you!

Sounds Wonderful...where can I buy it? Thanks!

Silly question Chemar...but does he use the oil in a diffuser? I think i'll try some for myself!

I'm so glad it was a beneficial appointment! Yay!! Did you still move forward with Dr. L?

I'm assuming it's Dr Elia.

Same here,just one spot shaped like a skinny worm. Not itchy, red...just hypopigmented.

He does IVIG at his Darien office, which now includes an infusion center. My daughter's had two IVIG's and they are very compassionate.

Kari- did he have a positive Mycoplasma IgM & IgG? Glad to hear both kids are doing well!! Melinda

Has anyone's doctor ordered lyme tests from this lab? I'm especially interested in their PCR test. Thanks--Melinda

Kari- Relieved to hear your son's appt went well!!! Did it take two months on the zith before you saw improvement or did he gradually improve over the three months?

Thanks Kim! My daughter just started taking Kolorex Practitioner Candida Care (active horopito extract) to maintain normal candida levels. Does this sound like an antifungal? First time ever taking something prescribed for yeast. But we do give her Florastor (good yeast) everyday to keep away c-diff.

Kim- Very Intersesting! How do you know when it's a fungal sinus infection? My daughter had monthly sinus infections since age two, which we always treated with abx's and no doctor ever mentioned this. I always complained of the extreme behaviors (before i knew of Pandas) during her infections, but mostly heard "she's young, she's sick". I was always told it was due to allergies but in between infections she was symptomless and of course, her panda-ish behavior went away with the abx. Ironically, since her major onset of Pandas (3 1/2 years ago), she has less sinus infections but instead more typical Pandas episodes. And now chronic... Melinda

I love the netipot but my daughter will have no parts of it. We do use a saline spray and especially like "Xlear" Nasal Spray with Xylitol.

I missed the opportunity to hear Madeleine Cunningham speak at the Chicago & DC conferences, so I hope to attend the LDA one. Plus, it's a lot closer to home

Gatito- Sending you a pm!

Thanks. Did you give these before the IVIG started or after it was removed? We had the same routine with Dr B (my daughter's younger, so lower dosage): Lots of fluids days before. Day 1&2: motrin/benadryl at 10:00, 4:00, 10:00; 2 prednisone tablets at lunch; drink fluids all day; administer a bag of fluid with gammagaurd ivig. Her ivig was scheduled at 10:00 am. Lots of fluids days after.

My dd9 had chronic sinus infections since age two. At age seven, a cat scan showed PAN sinusitis (all cavity's blocked). She was placed on Augmentin and Prednisolone for it. When we saw Dr. B in April, he said it most likey turned into chronic sinusitis because it wasn't treated aggresive enough when she was younger. Due to her failing pnneumo titers, H. influenzae and having chronic sinusitis, we were able to get ivig covered. After the second treatment, we did another cat scan and the sinusitis cleared up (She had 3 scans before that diagnosed chronic sinusitis).

My daughter has a white spot on her leg. I'm not sure when it happened but it never went back to her skin color. I just thought she scratched a cut into a scar. ??? My daughter also has a broken capillary on her nose that definetely happened during her first major onset 3 years ago. You can see it in her before/after photos. During episodes it becomes bright red and when she is doing better, it subsides.

I ran the Basic Lyme Panel on my daughter ($260). Was fortunate to get 70% back from Insurance. I dont have any info. on the urinaylsis. You can also just run the Igenex Western Blot IgG & IgM. My daughter never experienced herxing from Augmentin, only from Zith & Flagyl. I think the Complete Lyme Panel is a great test for your mother. Good Luck- Melinda My daughter was also negative thru Quest.

My daughter is currently on Azithromycin 250mg (white tablets) manufactured by SANDOZ. A bottle of 30...from Rite Aid.

One day a while back, my daughter came home from school and removed all toys, knick-knacks, and artwork from her bedroom. I think it was an ocd (orderly) thing. She didn't mind if it was placed somewhere else, just not where she spent her time. Now she is a HUGE HOARDER! She can't part with anything!!!