KD: Our second time and now third time

Personal stories of individuals and families affected by Kawasaki disease

KD: Our second time and now third time

Postby valrowe » Mon Jul 10, 2006 8:38 am

Our daughter Emma had kd when she was 7 months and again at 3. We just came home this past Saturday. The first time around she was treated on day 6 with ivig and came home 2 days later with no heart involvement. This time we have had a much harder time. She was diagnosed early on day 3 and was treated with ivig but she had a reaction to it and we had to stop the treatment. the docs tried the ivig again the next day with steroids and benadryl to avoid another reaction but again we had to stop the treatment. We finally were able to get the entire ivig done a few days later after locating another donor. The doctors are still unsure why she reacted to the ivig exspecially since she had had it before with no problems. We spent 10 days in the hospital this time. We have our echo on wednesday to see where we stand heart wise. Wish us luck. Please feel free to email me if you want to talk.
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Postby Joe » Mon Jul 10, 2006 1:07 pm

Our thoughts and prayers go out to you. Please let us know how the echo goes.

Do you have any theories or have you noticed any common circumstances between the two cases?
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Postby valrowe » Mon Jul 10, 2006 5:41 pm

The first time at 7 months we had shampooed our carpets about a month prior to her getting sick and this time we had just moved into a new house about a month ago and Im trying to find out from the old owners if they had the carpets done when they moved out. I really think there is some connection to the carpet thing. I know I will never have them done again! Thnaks for the thoughts and good wishes. I will keep posting as we know more.
Valerie L Rowe
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Postby Joe » Mon Jul 10, 2006 7:40 pm

I hear you. Not sure if it's stirring up dust (vacuum does this and we still vacuum), combining dust with moisture and aerosolizing it, or if it's the shampoo/cleaner itself, but we will definitely not be cleaning our carpets any time in the near future.
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Postby valrowe » Wed Jul 19, 2006 1:16 pm

Hi all
Just an update, we just had our first appointment with the cadiologist since getting out of the hospital and all went well everything looks normal! Yeah!!! we have another appointment in 3 weeks and we are still on the asprin at least until then. We are having continuing problems with severe joint pain in her hips that is keeping her from walking very much. we are seeing the reumotologist on friday. Will keep you posted, thanks for the thoughts and prayers and we are keeping healthy thoughts for everyone out there!
Valerie
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shampooed carpet

Postby tim622teresa » Wed Jul 26, 2006 2:34 pm

They think my daughter may have kawasaki disease and my couch was also just shampooed. Is that weird or what?
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Postby Danielle » Thu Aug 03, 2006 10:46 pm

Valerie just read your post and my so like you little one was diagnosed after cleaning carpets. I can't tell you how much I feel for you and little Emma to have to go through that ordeal. Please keep us updated.
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Update... KD for the THIRD time

Postby valrowe » Tue May 08, 2007 9:28 pm

Hi all
We are at it again, we were just released from the hospital yesterday after my daughter emma was dx with KD for the third time. this time was 10 months from the last time. she spent her 4th birthday in the hospital. this time started exactly the same as last time. we are fortunate to have amazing doctors here and to be so informed from you all that we were admitted to the hospital on day 1. we still had to wait the 5 days before she got the IVIG, but we were better able to manage the systoms and keep her more comfortable. She has much more liver involement this time, her LFT's were 1,224 when she was tested on day 1, they have since come down to 234 but are still grossly high as they should be between 30-50, so we are seeing a GI doctor on top of the cardiologist and the reumatologist and having blood drawn every day.
Has anyone else had this 3 times? our doctors say its unheard of but she definately has full blown KD.
she's calling me..
thanks for listening.
Valerie:(
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Postby Joe » Wed May 09, 2007 9:44 am

Wow that is just unbelievable! Have you identified anything in common between the 3 cases? You mentioned a possible carpet cleaning in your new house -- was that what happened?

How about this last time, anything in particular that stands out that could be similar to the first 2 cases?

That is incredible. It's good to know that they are taking such good care of you and that you have an experienced eye for the symptoms.
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Postby valrowe » Wed May 09, 2007 4:41 pm

We have not been able to link the 3 cases by any common thing. the first 2 we thought it was the carpet cleaning, but this time there was no carpets at all. this time was close to the same time of year as last time but the first time was in December. We are all baffled. will keep you posted.

Valerie
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Postby ETParents » Wed May 09, 2007 8:10 pm

Valerie

great news that everything is OK.

how was Emma's general health prior to each case?
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Postby Al-n-Charl » Thu May 10, 2007 9:42 am

I'm so sorry to hear that poor Emma, and you poor parents!, have had to deal with KD 3 times!!! You are all in our thoughts and prayers!

I'm glad the doctors were able to recognize it so quickly this time and be able to alleviate some of the discomfort for Emma. Did she tolerate the IVIG better this time? Any reactions?

It's scary when the liver is involved, especially when one side of the abdomen is significantly larger than the other. That was definitely one of the symptoms that concerned us the most when Bobby got sick. He was so swollen that his "inny" belly button popped out! It may take a while for the swelling to go down. Even now, Bobby's liver is still slightly enlarged and it has been 6 months since the onset of KD.

Hang in there and keep us posted!
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Postby Al-n-Charl » Tue May 15, 2007 10:50 am

Hi:

Just wondering how Emma is doing? Hope all is well!:)

Charlene
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Re: KD: Our second time and now third time

Postby superstargonnabe » Fri Nov 30, 2007 11:16 pm

hey im maxie im 16 im a kd surivivor and i no wat u wnet through i got kd when i was 4 and mine got to the point where i needed a transplant of the heart i got from my cousin cause she was in an accadent (she was 7 ) and was left brain dead.im still on meds cause of the risk of a heart attack cause i had one like when i was 10 and its not cause of the kd it self but cause of the fact that mine got so bad i needed a transplant and the reason it got bad was cause i had namonia and it had to be cured 1st so the kd meds would work right but it took long to cure.


i hope emma is ok if u have any qusetions bout wat elce to expect u can just ask me
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Re: KD: Our second time and now third time

Postby Maloro » Wed Aug 12, 2009 1:28 pm

Hi Val.
I'm glad to hear that Emma is going excellent... may God bless her always because she is VERY SPECIAL.....
I'm sorry to disturb you but i was wondering if you could help me. My daughter is now 2.5, at 10 months she had KD and needed a complete month in hospital to exit... she has vasculitis that has been controlled for the past 2 years....
She is back in hospital now with some symptoms for a recurrent KD.. the ECHO did not saw good so doctors started IGV.... after this she looks animated and eating normally but cracked lips, lightly strawbery tonge and peeling remains... tomorrow an ECHO is going to be performed monitoring her vasculitis... I really hope that the IGV has done his work... Since you have experienced this not once but ¡¡¡¡¡3 TIMES!!!... ¿¿what can you tell me about it???..... ¿¿should i expect a third time???... ¿¿¿is this second time nearly beginning or is it ending???...
I recognize your faith and courage for facing this disease so many times.... Your family will be in my prayers....
God bless you Val .... and Thanks.
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