Search found 508 matches

by Al-n-Charl
Mon Jan 27, 2014 5:51 pm
Forum: KD Stories
Topic: Bobby's atypical case at 3 months old
Replies: 105
Views: 37354

Re: Bobby's atypical case at 3 months old

Hi All: It was been quite a while since I last posted. Bobby is now in 2nd grade and I can't believe how such a little man he is! :) We followed up with all the doctors regarding his walking on tip toe. After the neurological assessment (normal), MRI to check if he has a tethered spinal cord (negati...
by Al-n-Charl
Wed Feb 23, 2011 4:58 pm
Forum: General Discussion
Topic: ANA and Paige update
Replies: 3
Views: 1171

Re: ANA and Paige update

YOU ARE ONE BRAVE WOMAN!!!! How many bottles of hair color does it take to cover all the gray ones she gives you?!? LOL! ;)
by Al-n-Charl
Wed Feb 23, 2011 4:48 pm
Forum: KD Stories
Topic: Bobby's atypical case at 3 months old
Replies: 105
Views: 37354

Re: Bobby's atypical case at 3 months old

Hi! I know it has been a while since I've posted, but another KD family has found us and re-telling Bobby's story brought me back to the KD forum to check on all of you and update everyone on what's been going on. Where to begin! We saw Dr. Newburger, August 2010, for Bobby's annual echo and everyth...
by Al-n-Charl
Tue Mar 30, 2010 4:51 pm
Forum: Medical Articles
Topic: Rare Long Term KD Problem
Replies: 3
Views: 1711

Re: Rare Long Term KD Problem

good luck getting your insurance to agree to checking into that..Especially where the incidence of this complication is so low! :(
by Al-n-Charl
Tue Mar 02, 2010 1:39 pm
Forum: General Discussion
Topic: Teen with heart block
Replies: 16
Views: 4778

Re: Teen with heart block

Hi:

Just read you post...wondering how the appointment with the Cardiologist went?

Charl
by Al-n-Charl
Tue Mar 02, 2010 1:29 pm
Forum: General Discussion
Topic: PFAPA Syndrome
Replies: 27
Views: 12485

Re: PFAPA Syndrome

Just my 2 cents...Bobby's spleen and liver were significantly enlarged during the acute phase of KD. It got so bad that his "inney" belly button popped to an "outey"...that's when I demanded that his illness (which had been poo pooed as a virus, by his Doctors) be taken seriously and an appointment ...
by Al-n-Charl
Fri Nov 06, 2009 10:42 am
Forum: KD Stories
Topic: Francesco's Update - 3 yrs Post KD
Replies: 5
Views: 2056

Re: Francesco's Update - 3 yrs Post KD

Lily!

Just read your post!!! Wonderful news! I'm so glad to hear that francisco is doing well and all aneurysms within normal limits!! YEAH! It's been such a long road for you, so glad things are looking up!

Charlene
by Al-n-Charl
Fri Nov 06, 2009 10:22 am
Forum: General Discussion
Topic: Ok, my final thoughts about the H1N1 Vaccine
Replies: 3
Views: 1137

Re: Ok, my final thoughts about the H1N1 Vaccine

Bobby and Julia received the H1N1 shot a few weeks ago. We've been lucky no illness or fevers from the injection. Julia is in Kindergarden this year and the school just had 2 confirmed cases of H1N1. Within 1 week all but 4 kids in the 4th grade class were out with the flu and we just found out that...
by Al-n-Charl
Fri Nov 06, 2009 9:25 am
Forum: KD Stories
Topic: Bobby's atypical case at 3 months old
Replies: 105
Views: 37354

Re: Bobby's atypical case at 3 months old

Hi: Sorry it's been a while. The blood work came back normal (cholesterol and lead..sorry didn't get numbers because I was running errands when the Dr's office called me with results.) All the allergy testing came back negative..they did warn me that there is a possibility of a false negative. Bobby...
by Al-n-Charl
Mon Sep 28, 2009 12:19 pm
Forum: KD Stories
Topic: Up date on Addyson
Replies: 7
Views: 2263

Re: Up date on Addyson

Hi Michele: Glad to hear that Addyson has been healthy through the summer! Hope the vaccination helps her out, especially since there are more than average potent kiddie germs to catch this year!! Julia didn't even finish her 1st full week at school, when she brought home the 1st plague..she was dow...
by Al-n-Charl
Mon Sep 28, 2009 12:06 pm
Forum: KD Stories
Topic: Bobby's atypical case at 3 months old
Replies: 105
Views: 37354

Re: Bobby's atypical case at 3 months old

Hi: Thanks for thinking of us! Bobby had his 3 yr physical on Friday. I mentioned the tip-toe walking and the fact that Bobby complains that his toes hurt (probably because he is hyperextending them) as well as falling alot (because he only has the tips to balance himself). Our pediatrician checked ...
by Al-n-Charl
Wed Aug 26, 2009 1:33 pm
Forum: General Discussion
Topic: Length of Lovenox treatment - Long??
Replies: 5
Views: 2044

Re: Length of Lovenox treatment - Long??

I asked Dr. Newburger if Bobby would have any bone density issues since he was on Lovenox for 12 months at such a young age....she said that since he is so young he probably already has compensated for any bone density lost during that time. Since he is no longer on an anticoagulant, no followup wil...
by Al-n-Charl
Sat Aug 22, 2009 10:52 am
Forum: General Discussion
Topic: Looking for Giant Aneurysm Treatment and Long-term Prospect
Replies: 4
Views: 1605

Re: Looking for Giant Aneurysm Treatment and Long-term Prospect

Our son was 3 months old when he had KD. He did develope giant aneurysms (6.5 - 8.5 mm). He has been lucky, within 1 year they regressed to normal - 4mm diameters. We have Dr. Newburger (Children's Hospital Boston) as our cardiologist and she told us that infants have the greater possibility of regr...
by Al-n-Charl
Sun Aug 09, 2009 10:31 am
Forum: KD Stories
Topic: questions for cardiologist?
Replies: 2
Views: 1102

Re: questions for cardiologist?

We were told by our cardiologist, Dr. Newburger, that the greatest chance for regression occurs within the first 2 years post KD. Infants and very young children often have the greater risk of arterial changes, but also have the greater chance of regression.

Hope this helps!
Charlene
by Al-n-Charl
Sun Aug 09, 2009 10:26 am
Forum: General Discussion
Topic: New to KD!!
Replies: 14
Views: 3248

Re: New to KD!!

Cathy: Has her SED rate come down at all? You said it was still off the charts...that concerns me. There are a lot of doctors out there that think only one dose of IVIG is needed to treat KD, and then that is all that needs to be done. Unfortunately, KD is not a one size fits all disease! If your do...