JAG10

I wish there was an emoticon that was red with steam coming out its ears cause that's how frustrating it is to have our babies beat up by a microbe!!! We will pray it, Peg. Community prayer is so powerful and we are a community. We will all pray it tonight and our children will pray too. Hang in there, Mom.

What a pure joy this must be to witness!!!! Thank you for being so generous and sharing your story. You have given us hope...and chills!

We adopted two kittens last August and that was my rule; they must remain "indoor only" cats. Even with that, I got them de-clawed. Now we promised the agency we adopted them from that we wouldn't do that, to some it is considered mutilation. We love our kitties, we are so happy they are part of our family, they are well taken care of and treasured.....but I'm not risking my girls' already compromised health to keep their front claws. My dd was backsliding for two weeks after her last upper canine came out 2 weeks ago. Even the restricted eating we hadn't seen since before IVIG #1 was making an appearance. I started the prednisone a few days early and it stopped the backslide in its tracks. Thank goodness!

Melinda- Do you know if the Igenex test differentiates different types of Bartonella? Or do they only test for TBD Bartonella? Do you know if there is any speculation of cross-reactivity? How's your dd, btw? Mine leaves for CT tonight. DH is taking her this time. This is me letting go....some

Whenever I see positive Bartonella by itself, I always wonder if it came from cats since half of cats will test positive at some point during their lives. Is it the same Bartonella? Is the treatment the same for TBD Bartonella vs Bartonella from a feline?

My dd had staring spells during the EEGs and they still said they were normal. I don't know about the slowing though, I'd have to investigate. In kindergarten, my dd would get "hyperfocused" on her work choices (it was montesorri) and would not hear the stop signal. The teacher would ring a little bell and they were all supposed tol stop, but she wouldn't until the teacher physically put her hand on her shoulder as a prompt, auditory prompts rarely worked. They could say her name over and over and she would not break concentration on what she was doing. So much so, I was frequently questioned about her hearing. OCD is so much broader than washing hands and checking. They continuoisly get stuck, stuck in feelings, in interests, in worries, ect.

Hi Anne, Last May, I took my then dd10 on a flight from Phila to Chicago, managed the airport, rental car, navigation, and infusion on my own. My hubby stayed home with our 7 y.o. We were fine and my dd, like your son, was not hard to handle. On the way back, our flight was a little delayed and she got the "big headache" in the air. That was a little challenging. It was a crowded flight and she thrashed around until the prednisone kicked it, then we hit turbulence. It wasn't easy, but another adult wouldn't have made that big a difference. When we landed, I told the flight attendant, my dd had medical treatment and needed a wheelchair. This was so she didn't have to walk the length of the airport and I could carry our bags while a stuart pushed her. I also told the crew checking us on the plane she had had medical treatment and they let us board first; just do it. It was a lot, but one parent/one child...I think you will be fine. Hope this helps Best wishes and health! Jill

Amen, sista!!! I want it all I want my baby back, baby back, baby back.......

You need to call and ask for the "we care" rate at Double Tree. Yes on the indoor pool, but if you/your child chooses to cap the IV instead of being poked twice, it takes the pool out as an option.

I, too, found this out by accident. If you pull down the bar for the emoticons on the right, you will see capital B then ) is code for the cool shades smiley. Hey...could be worse......I'm sure he would rather be Dr. Cool Shades than "huh", "wacko" or "blink" right???

Miss you, Alex! My girl prematurely pulled out her upper canine 10 days ago. Ugh!!!!!!!! Since that event, we've seen memory/math issues and the past 4-5 days the meat/texture avoidance has emerged (which has been gone since last May.) Oh yeah, and an uptick in creativity (no longer a good thing through my momma pandas eyes.) Feel your pain. Going to CT next Wed-Thurs for another infusion. Jill

That's a great point! They are looking for seizures, right? I wonder if I can go back and get that information...

I took Philly PA up on her offer to look up Joseph Dalmau. I must admit sifting through medical research is not my forte, I tend to get impatient and skip around too much, my bad. This is recent, 2011. Something that jumped out as interesting to me was the claim that EEGs were typically abnormal. My dd11 has had the staring spells described that have prompted numerous normal EEGs. Even Dr. T wanted to order another EEG on her as recently as a year ago because of the staring spells and I talked him out of it because they are always normal. Anyone else with this staring spells? Anyone with EEGs normal or abnormal...what do you think? https://www.cme.ucsf.edu/2011/slides/MNR11004/06%20Dalmau.pdf Thanks Philly PA! This guy is very interesting.

Isn't it ironic..... every time you try to put Dr. B in parenthesis it comes out cool shades smiley??? B)B)B)B)B)

Kel, My dd11 tried Abilify when she was 7. She started at 1mg then stopped at 2mg. It calmed an off the charts hyper kid down and she slept better at night. But we soon realized it calmed down the entire brain. Even at such a low dose, cognitive blunting was apparent. Is her thought that Abilify will relieve the crisis until the steady ivig can get the auto-immune under control? The only other caution I can provide is hydration. In the warm weather, my girl had 2 episodes of syncopy. The doc thought the Abilify may have lowered her blood pressure in combo with low hydration. I hope her son gets some relief soon. Warm and healthy wishes, Jill

That's so awesome, Tammy!!!!!! I would agree you might see some fluctuation over the next two months, but your son is so young, that might not be the case with him. The key will be to keeping him healthy, limit exposure when possible, you know. I think those benchmarks mentioned by TexasDad in post #4 assume there has been no further expose....which a whole year, for a 5 y.o.....is a tall order! Great news! You made my day!! Prayers and warm wishes Jill

triple...sorry; too much coffee!

double post

Hey Amy! I met your friend in Dr. B's center. DD11 goes back 3/30-31 for next treatment. She is doing okay, some recent math fluctuations with the loss of a babytooth. While these significant changes in processing and performance are so frustrating as a family, it really is facinating as a clinician. I feel like this whole experience has made me grow as a therapist. You are so fortunate to obtains treatment for your daughters upon onset! Kudos to you! Jill

:lol: Love that analogy of watching grass grow and then someone mows the lawn!!! Very clever! Hang tough, Kim!

Way to go Trudy!!!! Is Janice on the board too?

Thanks, Karen! This article is from 2002 and the studies were prior to that. I pulled out this quote: "But erythromycin-resistant strep has been seen at very high rates in several European countries and in Japan. ''We've talked about this for years,'' Dr. Martin said, ''and now it's here. We can't sit back and say, 'Not us.' It's clearly here.'' I just can't see why "here" would only apply to the East Coast? If it can get from Finland and Japan to the East Coast surely in the past decade it's made its way to the Golden Coast, no? I mean, just on this thread of 8 families Kari took zith-resistant strep back to CA, right? The article also said the less macrolides are prescribed in a community, the incidence of macrolide resistant strep drops significantly. Do most East Coast docs have a habit of over-prescribing macrolides more than their mid-west and west coast counterparts?

Hey Kel-If it ain't broke, don't fix it!!!! Can anyone who has recently (past year) had strep break through on prophylactic Zithro please post here? And also please post where you're located? We got it on Augmentin, but the dose was too low. Thanks!

Kelly (or anyone) Can you elaborate on the East coast strep strain thing? I mean, I understand how it can start out that way at a specific point in time, but why would a certain strain of strep stay in one area in such a fluid society for bacteria passed human to human? I wonder if this is still true? It seems many of the docs, east coast included, are favoring zith lately. Does anybody else think this may no longer be the case or no longer specific to the East Coast? Thanks! Jill

Melinda, So we're sold out of apples here in MontCo, huh???? I LMAO!!!!! Your secret is safe with me My girl does the same thing...the slightest wiggle, then it's out. It is traumatic to the gum. Do you think wanting the slightly loose tooth out could be related to the whole fear of choking thing? I mean, who wants to swallow their baby tooth, right? IDK Vickie, hope you're right about getting healed up quicker!