10 years post KD-low immune system

Personal stories of individuals and families affected by Kawasaki disease
kdmomjot1
New Member
Posts: 1
Joined: Mon Nov 05, 2012 8:54 pm

Re: 10 years post KD-low immune system

Post by kdmomjot1 » Mon Nov 05, 2012 9:38 pm

Our daughter had KD at the age of five. She began with a fever of 102, sensitivity to light, and a sore throat. She was checked into the hospital and treated with a strep infection. On day 2 her fever went up to 105.7 and developed abdominal pain. Her lymph nodes swelled and she became super-sensitive to touch. Day 3 she slept most of the time and developed tarry stools. Early on day 4 she struggled to breathe and her blood pressure was 70/20. She was transferred to intensive care with a collapsed lung with fluid around it and heart failure. A cardiologist was called in and she was taken off the antibiotic for strep ( the tarry stools were from blood coming from a raw gastrointestinal tracked irritated by the antibiotic) He also drained 50cc's of fluid off her lungs. At this point she lost consciousness and remained in this state for another week. She had an IVIG overnight, but did not improve, so her cardiologist recommended another one. That night she turned a corner and began to improve. She spent 11 days in the hospital and was discharged with digoxin and aspirin for heart failure for 4 months to protect her heart and keep her blood from clotting.
She slept for 2 solid weeks, losing 1/2 of her hair and all of the skin on her hands and feet. She slowly improved, but was markedly weak. She began kindergarten in the fall, but seemed to catch each disease that came around. At the end of the year I decided to school her at home because she was so fragile.
She was not the same girl who went into the hospital.Before, she was happy-go-lucky and considerate, and very smart. After, she had difficulty concentrating and became 'contrary' - difficult to handle. She became ill like clockwork, once a month. She went back to the cardiologist at one year and 5 years with no further affects on the heart.
10 years later, she developed mono. It took her a year to recover from that. The next winter, she was diagnosed with a parasite caught supposedly from the dog, though they never found it in her stools. She was exhausted all the time and had vomiting an diarrhea for a week. I became concerned about her sleeping so much, and later she was diagnosed with an immune deficiency. She was treated for 5 years with IVIG and that seemed to help.
Meanwhile, at age 15 she developed risky behavior and temper tantrums.She had times of such deep depression she felt like voices were urging her to kill herself. She became very moody and difficult to live with. This continued unit the age of 22 when her behavior became so erratic she was diagnosed with Bipolar disorder. She was treated for about a year, but they could never find a therapeutic dose that was effective. Finally, she was found not to be Bipolar, but to suffer from a deep, clinical depression. She has been on Effexor now for several years and seems more even keel. She now suffers from joint paint as well, and her rheumatologist thought she had RA. After reading these posts she feels like most of her symptoms are due to KD. It has been a comfort to her to see she's not 'crazy' after all, that there is a basis for her symptoms. I think it would be a good step to have her cholesterol levels checked and her heart as well to be sure she hasn't developed any blockages.
Hope this helps someone.

sarahwm723@aol.com
New Member
Posts: 1
Joined: Thu Nov 08, 2012 10:30 am

Re: 10 years post KD-low immune system

Post by sarahwm723@aol.com » Thu Nov 08, 2012 10:35 am

My grandaughter is almost 11 years post KD. She has a low immune system and catches everything that goes around. Our strange lingering side effect is jont problems. They sent her to a Rhumatoligist thinking she had juvenile arthritis but found nothing. we have had a lot of knee joint painand are prone to injuries of the joints. Has anyone else had this problem? we were not treated for KD. They thought she had Menegitis. Was not diagnosed until two weeks after first syptom. She has had no abnormal echo of her heart.

practicing patience
100+ Posts
Posts: 172
Joined: Sun Mar 21, 2010 11:12 am

Re: 10 years post KD-low immune system

Post by practicing patience » Fri Nov 09, 2012 7:31 pm

Sarah - almost exactly the same here. Missed it, figured it out at 9 days, missed window for treatment, echos great so far, but my oh my the joint pain and illnesses are enough to keep us hopping!

OwensMama
10+ Posts
Posts: 15
Joined: Fri Jul 27, 2012 9:24 pm

Re: 10 years post KD-low immune system

Post by OwensMama » Thu Nov 15, 2012 4:55 pm

This is definitely something to think about. Our doctors told us that Owen could have a hyper immune system, very sensitive and susceptible; yet, I still don't really know what he meant by "hyper". We are 4 months post KD diagnosis; he is now 1 year old.

Owen started getting sick as soon as we put him into daycare at 4 months old. He was sick every other week with one thing or another until he came down with Kawasaki at around 8 months old. We kept Owen home for 10 weeks and then tried to put him back in school. Literally 2 days later he came home with the most horrible stomach virus. SO ... I immediately pulled him out of school again. He is healthy when we have him home ... we are just tired of all of the sickness - its a break for him as much as it is for us.

mikejamesjhm
New Member
Posts: 2
Joined: Tue Jan 15, 2013 2:25 am

Re: 10 years post KD-low immune system

Post by mikejamesjhm » Tue Jan 15, 2013 3:20 am

Well sarah, did your grand daughter had any previous knee injuries. That may be the reason for the pain she is through?

Dianamary
New Member
Posts: 1
Joined: Mon Mar 02, 2015 12:54 pm

Re: 10 years post KD-low immune system

Post by Dianamary » Wed Mar 04, 2015 2:39 am

Update on the original post, Cassie is now 18 and is doing well this year! However last year she was diagnosed with a second acute case of mono (which is not supposed to happen!) We have seen an infectious disease specialist and were basically told that she probably has some kind of immune deficiency, but since they can't really do anything she doesn't neccessarily need further testing. She does continue to have some joint pain/back pain-lots of popping and cracking- but less overall sickness after seeing a naturopath. She has been released from cardiology with absolutely no problems!

Notto17
10+ Posts
Posts: 15
Joined: Tue Jan 13, 2015 2:40 pm

Re: 10 years post KD-low immune system

Post by Notto17 » Fri Apr 10, 2015 10:49 pm

My daughter tested positive for mono proir to her KD diagnosis. Her dr ran extra blood work that showed she was never exposed to the virus that causes mono, so why did it show positive??

Post KD she has chronic stuffiness, large tonsils, snores now and has noisy breathing. We see an ENT this week. She's 3 months post KD diagnosis and IVIG treatment.

Angie
25+ Posts
Posts: 61
Joined: Sat Dec 24, 2005 10:42 am

Re: 10 years post KD-low immune system

Post by Angie » Sat Apr 18, 2015 9:09 pm

My daughter also had KD in 2005 and will be 13 next month. She has complained of headaches often throughout the last couple of years but I just figured it was due to being a preteen and female stuff going on. I will say that vitamins are great to give them! We take Vit D, K, E, B12, iodine, probiotics and colloidal silver in our house. It may just be that your daughter has a weak immune system or something else may be affecting her. I'd have her checked out by a doctor just in case.
~*~Mommy to 3 wonderful children~*~ Member here since 2005
Daughter successfully treated for KD in December of 2005 at the age of 3.
Now a happy, vibrant, active 12 year old~*~

Ds1
New Member
Posts: 2
Joined: Fri Nov 20, 2015 1:32 am

Re: 10 years post KD-low immune system

Post by Ds1 » Fri Nov 20, 2015 1:42 am

Hi there, my little man will be turning 3 in Feb. He was diagnosed with KD at 5mths old, which docs say its a rare case but given we're Chinese (Asian descend), we're apparently of higher risks. After the treatments, meds n all the aftercare, we were finally given the all clear.

However, ever since then, he just hasn't stopped being ill. Although its only the usual sniffles, cold n feverish symptoms but its always one after another. We first put it down to his teething but gradually we're starting to think if it had anything to do with the KD; that his immune system is particularly weak. I feel less frustrated now knowing all u guys went through a similar thing with your kids.

Like all 3yr old boys, he's always so active n has a good appetite but not chubby. In fact, we're wanting to fatten him up because he's so skinny!

Do you guys think as he gets older, his immune system will keep building up n his 'condition' will get better? Would you recommend we give him supplements?

Nancy
KD Forum Leader
Posts: 647
Joined: Mon Apr 25, 2005 6:49 am

Re: 10 years post KD-low immune system

Post by Nancy » Fri Nov 20, 2015 12:37 pm

hi

Does your 3 yr old go to preschool or daycare ? Kids in group settings are often frequently ill at that age :)
My son was older, age 7 yr, when he had KD. He has only a few mild colds in the 13 yrs since then !
My daughter, who did not have KD, catches absolutely everything !
All kids, even in the same family, can be different. Doubtful it has anything to do with his history of KD

best,
Nancy

Ds1
New Member
Posts: 2
Joined: Fri Nov 20, 2015 1:32 am

Re: 10 years post KD-low immune system

Post by Ds1 » Fri Nov 20, 2015 2:26 pm

Hi Nancy,
Yes he does go to day nursery and I guess places like that has germs everywhere hahaa but I just feel he's particularly weak. Hopefully it is just me thinking too much, as we did get the all clear from the docs.

anne
New Member
Posts: 1
Joined: Thu Jan 21, 2016 9:09 am

Re: 10 years post KD-low immune system

Post by anne » Thu Jan 21, 2016 10:06 am

I had KD when I was 3, I am now 30. I am not sure what they did for me (medications..etc..) once they figured out what I had... I grew up taking allergy pills, I was sick often, joint pain, sore muscles, checked for diabetes, anxiety, acid reflux, severe stomach pain (never figured out what that was) I switched up my diet, chronic strep throat (got tonsils removed so the strep wouldn't go to my liver- I was 15) low energy often, respiratory issues. I didn't even know I had KD until I was in my early 20's and my heart was causing me pain and squeaking loudly (my mom told me it may be from the Kawasaki) No MD I went to knew what KD was, so I went to a cardiologist. He diagnosed me with MVP; moderate severe. I've wrote experts on KD...they all replied- my low immune system has nothing to do with KD. I disagree. My siblings/friends were always fine- I would catch every little bug, and still do. I have lived a fairly normal life, but I get sick frequently. Currently, I'm experiencing chronic sinus infections and trouble breathing. My palms still peel when I'm sick, my body feels hot on the inside (if that makes sense.)

Post Reply