Search found 15 matches

by youngwk2000
Sun Aug 16, 2015 7:15 pm
Forum: KD Stories
Topic: 32 month old diagnosed with refractory KD in Atlanta
Replies: 13
Views: 8712

Re: 32 month old diagnosed with refractory KD in Atlanta

Things have been quiet on the kd front. My daughter just started kinder but every little fever, runny nose, bruise, and anything to worry about we do, just in case. She still has routine monthly bloodwork with a hematologist and yearly echos for her shrinking aneurysm. Learned something our pediatri...
by youngwk2000
Mon Jan 26, 2015 8:00 pm
Forum: KD Stories
Topic: 32 month old diagnosed with refractory KD in Atlanta
Replies: 13
Views: 8712

Re: 32 month old diagnosed with refractory KD in Atlanta

Thank you. My daughter is still doing fine now and still on one baby aspirin and coumadin because of her giant aneurysm. She is doing fine now and we are due for another echo.. My daughter and I have grown so close she is stuck to me like bubble gum and I'm fine with that. I keep a hepa/uv filter in...
by youngwk2000
Mon Jan 26, 2015 7:47 pm
Forum: KD Stories
Topic: Loren's Story, so far
Replies: 4
Views: 6103

Re: Loren's Story, so far

My daughter is still doing fine now and still on one baby aspirin and coumadin because of her giant aneurysm. Yes, I was concerned with all the medications she was receiving but she had refractory kd and nothing was working. I started researching treatment and nothing was out of the norm. We had spe...
by youngwk2000
Sun Mar 09, 2014 10:58 pm
Forum: KD Stories
Topic: 32 month old diagnosed with refractory KD in Atlanta
Replies: 13
Views: 8712

Re: 32 month old diagnosed with refractory KD in Atlanta

Little Emily is still doing fine. Her aneurysm has shrunk a 1mm and will be checked again in 8-9 months from her last one in September. I am hoping more shrinkage or a miracle it is almost completely gone. in reality giant aneuryms usually needs long term trips to the cardiologist. She is still on b...
by youngwk2000
Sun Oct 20, 2013 8:55 pm
Forum: KD Stories
Topic: 32 month old diagnosed with refractory KD in Atlanta
Replies: 13
Views: 8712

Re: 32 month old diagnosed with refractory KD in Atlanta

My little Emily is still doing fine and recovering great. She gave us a scare when she got a cold and had a fever for 4 days but it broke on the 5th day and she got better. I got pretty worried. Her blood work still looks normal. She only takes 1 baby apirin and two shots of lovenox a day. We only s...
by youngwk2000
Sun Oct 20, 2013 8:37 pm
Forum: General Discussion
Topic: question on cardiology follow up post diagnosis
Replies: 6
Views: 2743

Re: question on cardiology follow up post diagnosis

Sounds like kd to me and my daughter's one giant aneurysm didn't show up immediately at the hospital. I believe it was days later. I have read aneurysms can grow even after treatment but you won't know unless their hearts are monitored. My child has one 8mm that stabilized but our cardiologist is wa...
by youngwk2000
Sun Oct 20, 2013 8:26 pm
Forum: General Discussion
Topic: Flu Vaccine (mist - live virus) for siblings
Replies: 2
Views: 2470

Re: Flu Vaccine (mist - live virus) for siblings

At ten months post ivig treatment it should be fine to get. We were told about 11 months but I read somewhere 6 months post ivig treatment should be fine. I just gave my kd daughter a live flu mist at 6 months. She is fine but whether it will work is a ? The ivig in her system will destroy the live ...
by youngwk2000
Sun Oct 20, 2013 8:11 pm
Forum: KD Stories
Topic: Facial hair
Replies: 1
Views: 1161

Re: Facial hair

It's normal. The steroids and cyclosporine both will give her hair growth. Keep her out of the sun if she is on cyclosporine. Once she is off the steroids and cyclosporine the hair growth should stop. We used a pen shaver you can buy at a drugstore, walmart, target after she stopped steroids and tri...
by youngwk2000
Thu Aug 22, 2013 10:18 pm
Forum: KD Stories
Topic: 32 month old diagnosed with refractory KD in Atlanta
Replies: 13
Views: 8712

Re: 32 month old diagnosed with refractory KD in Atlanta

Little Emily is doing so much better now. Still no fever and is very active today. We had a rheumatology appointment today and it went very well. I stopped her cyclosporine treatment a month ago on my own. The last time we met the Dr. we discussed stopping but decided to lower the dose. I felt confi...
by youngwk2000
Tue Jul 23, 2013 9:16 pm
Forum: KD Stories
Topic: 32 month old diagnosed with refractory KD in Atlanta
Replies: 13
Views: 8712

Re: 32 month old diagnosed with refractory KD in Atlanta

I really did appreciate Dr. Balcarek recognizing what my pediatrician sent us to Scottish Rite for, she was friendly and assuring. I didn't get the run around at Scottish Rite and denials that it wasn't Kawasaki like some people have been writing about at their hospitals. Initially a female Indian E...
by youngwk2000
Sat Jul 13, 2013 11:11 pm
Forum: KD Stories
Topic: 32 month old diagnosed with refractory KD in Atlanta
Replies: 13
Views: 8712

Re: 32 month old diagnosed with refractory KD in Atlanta

My 2 year old daughter is still doing well as can be hoped for, her energy is back and she can't sit still anymore. You would never think she was ever sick with KD. No fevers, aches, or swelling so we put her back in school slowly 2x a week only. She was so excited to go back to school. She has not ...
by youngwk2000
Sat Jul 13, 2013 11:09 pm
Forum: KD Stories
Topic: Loren's Story, so far
Replies: 4
Views: 6103

Re: Loren's Story, so far

My daughter was in the hospital almost a month with refractory KD, three rounds of IVIG high dose aspirin, steroids, tylenol, remicade, abxcimab, cyclosporine, lovenox etc. Just be there for your child (tell her things will get better, hug her and don't breakdown) and hopefully she will respond well...
by youngwk2000
Sun May 19, 2013 11:39 pm
Forum: KD Stories
Topic: 32 month old diagnosed with refractory KD in Atlanta
Replies: 13
Views: 8712

Re: 32 month old diagnosed with refractory KD in Atlanta

We have been home for almost a month. My daughter is on baby aspirin, lovenox, and cyclosporine. She was also on oral steroids that were tapered down and ended a week after we were discharged. The steroids give her mood swings, hair growth, and a voracious appetite. We were glad the symptoms related...
by youngwk2000
Fri Apr 19, 2013 8:01 am
Forum: Medical Articles
Topic: CRPs values and Retreatment with IVIG
Replies: 4
Views: 4608

Re: CRPs values and Retreatment with IVIG

My two year old daughter is going through this now. I just posted our experience. She had sweats and wet cough right after 3 ivig treatments but it gradually went away. She has 8mm left artery. Initially did one oral plavix and one shot lovenox. Then stopped it and got a iv dose of Abxicimab. Dr's d...
by youngwk2000
Thu Apr 18, 2013 1:41 pm
Forum: KD Stories
Topic: 32 month old diagnosed with refractory KD in Atlanta
Replies: 13
Views: 8712

32 month old diagnosed with refractory KD in Atlanta

First let me tell you that in my opinion Egleston would had been better to go first than Scottish Rite. My daughter had a fever on Sunday and complained about an earache. Few days prior she would wake up crying but thought it was just a bad dream. Sunday ran a fever and complained of left ear hurtin...