DC/Shenandoah Valley area

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busymom01
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DC/Shenandoah Valley area

Post by busymom01 » Sat Jun 21, 2008 9:34 pm

I would like to find a group in this area to hold fundraisers/raise awareness with. Is anyone around here interested?

sydneli
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Re: DC/Shenandoah Valley area

Post by sydneli » Sat Jun 28, 2008 10:00 pm

Hi!

I'm very interested! I live in Loudoun County-my 7 year old son was diagnosed with KD last August and was at DC Children's for a week, and then another 5 days. He ended up with giant CADs. I'd love to help spread the word about KD. PM me!

Sydne

brookemom
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Re: DC/Shenandoah Valley area

Post by brookemom » Fri Dec 05, 2008 6:16 pm

Hi - I'm in Great Falls, VA (Fairfax County). I'm interested. e-mail: pjdawn@verizon.net or home 703-757-6144. Our 4 year old daughter was diagnosed in November and spent 2 weeks at Inova Firfax hospital for children. Best, Patty

sunnyp754
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Re: DC/Shenandoah Valley area

Post by sunnyp754 » Mon Feb 09, 2009 8:40 pm

I am very interseted in helping with a fundraiser. My son Luke who is 5yrs. old had KD last March 2008. he now has 4 anyuresms in his coronary arteries. WE live in the annapolis area in Maryland but are often in DC.

Sunny Caton
410-956-2782
sunnyp754@yahoo.com

new mom of KD boy
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Re: DC/Shenandoah Valley area

Post by new mom of KD boy » Wed Jan 06, 2010 10:52 pm

I live in Leesburg, Va and we are currently in Lansdowne hospital Peds ward with my 17 month old son, Tyler who was diagnosed with KD. I would love get the word of this disease out to other parents and what can be done. For us it started out on December 28th with high fever. Took him to Dr and was diagnosed as a viral infection after a neg. strep and neg ear infection. Then things got worse not sleeping at night with higher fevers even on Tylenol and Motrin, till New Years Day with the rash, blood shot eyes. Finally on the. 7th day, Sunday, back to the Dr. calling a few thing Fifths disease for rash and pink eye fr eyes. Then Monday, Jan 4th, back to the Dr's and sent to ER after more reviews. Now we are in the hospital and the IVIG was done last night taing about 12-14 hrs. Tyler had no reaction, but after the aspirin, he seams very jumpy. Sleeping better than last night and hoping we can go home tomm. The dr's till want more blood wrok and his fever has dropped, rash in disappearing, and eyes no more glossy and blood shot. My concern is the aspirin?? I feel like a whirlwind has come into our room and I can't stop it. I need sleep, but wonder if this could recur with Tyler?

marinamom
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Re: DC/Shenandoah Valley area

Post by marinamom » Thu Jan 07, 2010 1:58 am

To the new mom, seems like you are getting a response to the IVIG. Yes I was concerned about Reyes syndrome and aspirin but it is very rare and the good aspirin is necessary (before IVIG it was the only treatment). Watch for a return for fever. Make sure they keep you in the hospital until fever is gone for 24 hours -- some like to discharge early. Have that first echocardiogram done -- it might not show damage until 2 weeks later. Make sure they spend time at least 1/2 hour on the echo -- not just checking coronaries but rest of heart including aorta as well. Find the AHA Guidelines from 2004 on the web that give guidance on follow up in the acute period.

sydneli
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Re: DC/Shenandoah Valley area

Post by sydneli » Sat Jan 09, 2010 7:55 pm

Hi newmom,

I live in Hamilton, west of Leesburg. You're lucky you got to get IVIG at Lansdowne! We had to go to Children's in DC.

I agree with Kariego, please get the echo done and make sure his fever is gone for 24 hours before discharge. My son was discharged too early and had to go back a day later for more IVIG and Remicade, and he ended up with giant coronary artery aneurysms. Also, like Kariego said, make sure they do a thorough echo. (Children's has a great pediatric cardiology group-and they have a site in Fairfax, so you don't have to go all the way to DC.) Jordan only has to go once a year now. Good luck, and let me know if you'd like more info about Children's!

new mom of KD boy
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Re: DC/Shenandoah Valley area

Post by new mom of KD boy » Fri Jan 15, 2010 12:27 am

Thank you Ladies.
We were discharged from Lansdowne after Ty' was fever free for 24 hours. The night we were home he spiked a fever and I called my pediatrician on call. I was told to go back to the ER. Well I did not instead I gave my son Tylenol, since we were all exhausted, and went back to bed. An hour later Ty's fever went away. he has not had a fever since. We did have an echo on Mon and it showed the ESR and CRP had dropped since he was in the hospital. but his coronary arteries are dilated. Ok the cardiologist explained, but I am confused. Could the high dosage of Aspirin cause this to occur. I noticed my son seems to be more irritable lately and having a great deal of constipation. Could this be caused by the meds. He has chaffing and peeling on the diaper area also. We go in for another echo this morning and more blood work. Now the Cardiologist suggests to get a more accurate echo to sedate my son. Has anyone ever had there child sedated while having an echo. Is this dangerous??
I am also a member of the JWCL Junior Women's Club of Loudoun, a non profit organization in Loudoun County. I want to see if any of you ladies would be willing to come to one of our meetings and share your story with other Mom's and Woman so they know more about KD. I figure we could start somewhere and This might be a good place. We meet at 7:30PM on the third Tues on each month in the Area Agency by Tuscarora Mill off of Depot Court. I will mention this at our next meeting and see what we can do. If you are interested just email me at afeipel@verizon.net. I am still finding more out about KD and all of you might have more insight to. We would tell our stories or share info with the other ladies in the first half and then you can stay for the other part of the meeting or leave. I really love this club because we are just several ladies getting together to help our community whether it be March for Babies, MADD, Meal on Wheels, Relay for Life, etc. You can even be part of the club via email, since a lot of people can't get there at night. Anyways I am not trying to convince anyone, just wanna see if we want to talk about KD mother to mother, woman to woman. I'll let you know how Ty is once the blood results come back. Thanks Ladies.

emblair
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Re: DC/Shenandoah Valley area

Post by emblair » Fri Jan 22, 2010 2:43 pm

I'm on the MD side of DC, but would love to help out in a fundraiser or promoting awareness of KD. My 2-year old was diagnosed with a-typical KD. She started a fever 2 days after her 2nd birthday...we want more people to know about this disease.

FredaC
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Re: DC/Shenandoah Valley area

Post by FredaC » Thu Feb 11, 2010 7:50 pm

I live on the MD side of DC and would love to be apart of your fundraiser or awareness campagin to promote KD. My 2-year old son was diagnosed with a text book version of KD two days ago. He started to have a high fever 6 days ago that was followed by severe redness of the eyes, severe chapped lips that pilled as well as swollen hands and feet. I took him to Children's Hospital of DC and was released two days later. Knowing all that KD can do to a child, I would like to let new parents know about this disease and how it could damage a child's life if not diagnosed early. Please contact me at 202-352-4538 when the event has been arranged or if you need help putting the event together.

Elcabc
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Re: DC/Shenandoah Valley area

Post by Elcabc » Sun Jul 27, 2014 10:02 pm

Our daughter was finally diagnosed with KD and we're looking for a pediatrician in the area who has experience with KD. Does anyone have any recommendations? We live is loudoun county but are willing to travel for a good doctor. Plus, we'd love to help fundraise and raise awareness. It's been difficult with our daughter, it's been 2 months since diagnosis and she is still not herself and still gets some KD symptoms.
Thank you I'm advance for your help.
Alison

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