10 years post KD-low immune system

Personal stories of individuals and families affected by Kawasaki disease
DianaMG
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10 years post KD-low immune system

Post by DianaMG » Mon Apr 26, 2010 11:30 pm

My daughter Cassie, now 13, had Kawasaki Disease at the age of 3. She was diagnosed at the earliest possible time and treated with IV/IG and 6 months of aspirin therapy. Thank God, all her cardiac tests since then have been normal, however, she seems to catch everything going around. Among other things she was hospitalized 3 years ago with abnormal blood work and a diagnosis of a mono-type virus, followup showed an enlarged liver and spleen and it took her about 8 months to recover her former energy. This year she had swine flu in the fall and seems to have caught a cold or flu every 3-6 weeks since then. She has been extremely fatigued and we went for blood work which shows now that she has mono! We also have had several episodes over the years of hives and once a completely pink rash from head to toe. Poor kiddo also has had some counseling to deal with Post Traumatic Stress related to the two hospitalizations (as well as increased anxiety). I'm wondering if anyone out there has had a similar experience this long after diagnosis with KD.? FYI: she was diagnosed 2 weeks after getting into some shower cleaner.

liquidambar
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Re: 10 years post KD-low immune system

Post by liquidambar » Tue Apr 27, 2010 7:24 am

Yes,
Daughter after Kawasaki's was sick a lot.
In her Senior year - sick all year, enlarged lymph nodes, could not hold anything down. It passed finally after 100's of visit to the peds (Why I kept going back to them again and again) they finally gave her an antibiotic because they were feeling guiltiy of all the times I went there - said her white blood count was up. She was at least well at the very end of her highschool senior year and had a good time.

In her first semester of her Sophomore year of college she dropped out of college before she failed out - from missing class so much. The second semester was somewhat better, although she was still tired. BUT During the second semester we had to go to the emergency room because she had a temp of 105 - and they said she had strep. If you have strep looks like you would at least have a real bad sore throat with blisters ? A new doctor by then - said that the sickness of the sophomore year could have been possibly mono and she was lucky to get over it as well as she did in one semester.

Dior'smom
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Re: 10 years post KD-low immune system

Post by Dior'smom » Tue Apr 27, 2010 5:10 pm

@ DianaMG, yes! Just about the exact same symptoms as you mention & experiencing them as we speak! (see, recent postings under Elevated CRPs & WBCs). There has to be some connection to these children having a history of KD.

Romaine(Dior'smom)

DianaMG
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Re: 10 years post KD-low immune system

Post by DianaMG » Tue Apr 27, 2010 11:09 pm

It's nice to know that we're not the only ones dealing with this!

alazuka
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Re: 10 years post KD-low immune system

Post by alazuka » Thu Apr 29, 2010 12:56 am

My daughter is 8 years post KD and has been sick most her life. She has only had one major illness-pneumonia, but she has been sick with some virus monthly and sometimes twice monthly.

Nancy
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Re: 10 years post KD-low immune system

Post by Nancy » Thu Apr 29, 2010 1:10 pm

hi

on the other side of the coin...just for perspective..

my son had KD in 2002..at age 7.5 yrs....had only one "sick" visit to pediatrician BEFORE having KD

and in the 7+ years since KD....he has had only ONE "sick" visit !

He gets a mild case of the sniffles maybe once per winter and has never missed a day of school since KD.

Yet, my daughter who did not have KD catches everything and takes an extra week to recover from anything..

So, not sure differences in illness patterns has much to do with having had KD....

best
nancy

winter
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Re: 10 years post KD-low immune system

Post by winter » Tue Aug 03, 2010 10:58 am

My daughter is almost three years past KD, no heart involvement at this time but has been ill catching everything so severely even her ped recommended we do an online public school. I would send her to school she would catch something, (even though she has all her own supplies, and hand santitizer everywhere) we would be six weeks before she would get better and then she would have caught another illness.

It was to the point it was not fair to her anymore, she went back to school ahead of her class after the year she was below because of missing so much for being ill. She was diagnosed with chronic sinusitis so a cold is a six week battle or longer.

If she gets sick she gets an immediate headache and her fevers are never normal they go immediately up to 103-104 for every illness that she gets a fever with. My other two daughters with no KD history will get 99-100 they might go up to 101 at the highest.

It very strange. She has been to two different immunologists who cannot find out why she seems to do this. So we wait......she has been so much better doing school at home. So much healthier! We are dealing with illness so much less getting her out of the germ environment.

immakdkid
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Re: 10 years post KD-low immune system

Post by immakdkid » Mon Dec 27, 2010 11:10 pm

I am also 13 and i get sick more than i did before my KD...i was wondering if i could talk to your daughter because sometimes i feel alone about the whole KD thing and i live in a place tht people dont know what it is and let alone anybody have it. well plz let me know if i can talk to her thx

lovemynoah
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Re: 10 years post KD-low immune system

Post by lovemynoah » Fri Jan 07, 2011 9:52 pm

My 2 1/2 year old son is 6 weeks post KD now. He received IVIG on the early morning of the 6th day of fever and responded well. Our 6 week echo is next week. I am curious about this possibility of a futher weakened immune syustem. I have IgA deficiency and had "mono" when I was 17 and Epstein Barr when I was 24. After repeated upper resp. infections over the next year, I was finally diagnosed with IgA def. It is somewhat well controlled, but I do get sick quite often. I immediately asked all the docs if My son could have inherited a poor immune system or autoimmune condition due to mine, but they all did not believe that was the case. I am worried that my son will have immune problems in the future.
Anyway, I am wondering if any of you have had your children tested for IgA deficiency. Althougth there is no cure for IgA def, it could explain recurrent infections that persisit even after the usual recover time of mono. My son has been tested and does not have it, but I hope he remains well - and I hope all of your children will improve in health. It is certainly challenging and heartbreaking.

KCLP
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Re: 10 years post KD-low immune system

Post by KCLP » Sat Jan 08, 2011 5:09 pm

I have often wondered if IgA deficiency could trigger KD or perhaps, KD causing IgAD to flair? IgAD is usually genetic but, temporary IgAD illness can be the result of severe illness or trauma.

IgAD is more common than most realize. It is disguised by it's levels of severity so, many go undiagnosed.

Some kids do have frequent illness; ear infections, pneumonias, eye infections, throat infections, gastronintestional illness, hard to treat allergies, asthma, or other autoimmune diseases post KD. All the hallmarks of IgAD.

Have you had your son tested for the deficiency? Most kids with IgAD can't make antibodies against immunizations - that could be another clue for you.

I do not know of any children being DX with IgAd post KD. Also, I have lightly looked for an association between the two but, have found no evidence linking them.

Interesting subject. We still have so much to learn.

KCLP

http://www.unepsa.org/china/ab/0218.HTM

bmcgill
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Re: 10 years post KD-low immune system

Post by bmcgill » Thu Jan 13, 2011 8:16 am

You might be on to something. When my daugher (3 1/2 months) was admitted, they found traces of mononucluosis in her blood stream but they chalked it up to her having received the traces from me invitro. I didn't realize I had mono myself, but can believe it thinking back at some "flus" that probably were actually mono instead. Point is that the mono strand stuck to her. Maybe mono is the weakness that these kids have that makes them more susceptible to contracting KD or perhaps mono is a permanent symptom from the actual disease?? Anyone else checked for mono at the time of hospitalization?

ersmom
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Re: 10 years post KD-low immune system

Post by ersmom » Thu Feb 03, 2011 3:27 pm

My son is 4years post KD, I believe that his immune system has been compromised. 4mths post he had a stomach virus that lasted 1 1/2 mths, I was told not related to KD, he catches everything that comes around, he had Swine flu last year, strep throat twice, and then in June 2010 he was diagnosed with mono, he has been out of school for several days already this year with stomach viruses, and head colds, he is home sick today with a stomach issue. I just believe that this is post KD symptoms, he was always a healthy baby with no issues hardly even a cold before KD. I am so glad I found this website.

BEN'SMOMMY
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Re: 10 years post KD-low immune system

Post by BEN'SMOMMY » Fri Feb 11, 2011 5:58 pm

Ben was diagnosed in Oct 2009, but we as a family rarely get sick, but when we do, he gets the sickest. It is always one step further for him, we all got a chest cold, and it started to go away, but his developed into bronchitis, when we get stomache bugs we get over it in 24 hours or so, but his lasts a day or two longer. I had never really thought about it, but before he was diagnosed with kd, he was sick more often than he is now. Since the kd we have been blessed with less illness, even if it is a bit more serious when it does happen.

mlcwikla
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Re: 10 years post KD-low immune system

Post by mlcwikla » Sun Mar 06, 2011 12:30 am

My daughter is always sick too. I never even thought of a connection to the KD. My daughter also has a lot of anxiety and PTSD as well, in addition to alot of anger she never had before KD. It seems there are many more long term issues we have to look at than just the heart issues.

lcaldwell
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Re: 10 years post KD-low immune system

Post by lcaldwell » Tue Mar 29, 2011 7:47 pm

My son had KD when he was 16 month old, and he is now 21 and he is still having problems. Mono is at the top of the list, he is a college student and I don't know how he is making it because he gets it about 3 to 4 times a year.
My son also have problems with his thyroids and I was told by one doctor that the KD cause the problem with his thyroids.
My son became ill after his father returned home for the Gulf War in 1991, his father was in a Chemical unit and I hoping the father didn't bring some type of chemical back on his belonging for The Gulf War.

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