Tell me your lasting affects from KD

General discussion regarding Kawasaki disease
ablasik
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Joined: Sat Aug 16, 2014 2:36 pm

Re: Tell me your lasting affects from KD

Post by ablasik » Sat Aug 16, 2014 2:57 pm

My son was diagnosed in early 2004. He was treated with IVIG and released from the hospital a few days later only to be readmitted the next day for a second round of IVIG. He contracted Strep while in the hospital and then thrush as a result of the antibiotics to treat the Strep. All his echo-cardiograms show no evidence of aneurysms, but he has occasional pain in his hands, feet, and legs. Sometimes to the point of not being able to hold things. His doctor said this could be a result of narrowing of his blood vessels in his extremities as they shrunk down following aspirin therapy causing a lack of circulation. Our bigger concern at the moment is intestinal issues. He has frequent problems with abdominal pain and difficulty with bowel movements. He has had blood work and x-rays to rule out many issues. His last doc basically prescribed liquid laxatives and doesn't seem all that concerned or interested in finding a cause. Can someone be on laxatives indefinitely? We have altered his diet and constantly push drinking more water and exercising but it doesn't seem to help. He still has difficulty going to the bathroom, experiences a lot of pain, and regularly spends 1/2 an hour or more trying to go. He has also had a few incidences of chest pain--the last being a year ago--9 years after his initial diagnoses. He is very low energy since his diagnosis and sleeps a lot, although I am not sure part of his need for more sleep isn't just because he is 14 years old and teens usually need more sleep any way.

abc123
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Re: Tell me your lasting affects from KD

Post by abc123 » Tue Sep 02, 2014 10:35 pm

Hi, I am reading all of these posts with great interest because my 5 year old daughter had almost all of the symptoms of Kawasaki disease, (rash,prolonged fever,red eyes, joint pain, peeling skin on hands and feet), but her pediatrician, in consultation with an infectious diseases doctor determined that she did NOT have KD. They said it must be some unknown virus. Since she had so many of the symptoms, and as advised by a pediatric opthamologist (who we saw because her eyes remained red for over a month, and who said this looks exactly like KD) we took her for a sonogram of her heart and an EKG which showed no signs of inflammation. The pediatric cardiologist also determined that she did not have KD based on her blood test results, and sonogram of her heart. HOWEVER, she has now come down with a terrible case of eczema. She has never had any skin issues before, and now, just when all of the symptoms that led us to believe that she may have KD disappeared, she has come down with eczema! Is there any benefit to us investigating this further to determine whether or not she really did have KD or not? If there was no apparent effect on her heart, is there any other reason to know for sure if she had KD or not?

lihuff6
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Re: Tell me your lasting affects from KD

Post by lihuff6 » Thu Sep 04, 2014 2:30 pm

My daughter is 16 she got KD when she was 7 so she was considered a A typical KD child. Although her echo has come back with minimal damage we still see a cardiologist on a regular basis. Till this day she complains of joint pain and swellings ac in the joints. Her cardiologist believes she has arthritis now. So we are no heading to another specialist. She had severe migraines they are not quit as bad but still has medication for those. Stomach got so bad they checked her gull bladder and it was only working at 6 percent so they had to take it out. She has just recently been diagnosed with insulin resistant her insulin level is 3x what it is suppose to be and this causes her glucose to crash so we have now started a diabetic medication. I have a hard time believing this entirely leaves there body after treated with the IVIG medication. Been a long hard battle but we take it one day at a time and try to make like as normal as we can for her. She stay active in sports and school so that helps but people do not understand when she just doesn't feel right. Most people have not heard of KD. We tend to educate people.

tootie823
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Re: Tell me your lasting affects from KD

Post by tootie823 » Fri Sep 05, 2014 9:04 pm

My son had KD in March of 2011 since then he complains that his feet itch wakes up numerous time each night wanting creme on his feet and they are dry and peeling. He has also complained of joint pain in his legs. He has been recently diagnosed with adhd and didn't have any issues before the KD He continues seeing his cardiologist, along with a liver dr because he ended up with an enlarged liver and he sees a lipid dr because his cholesterol was extremely high and both problems were linked to his KD. I am curious to see what comes of this.

kalan
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Joined: Sat Sep 27, 2014 1:21 am

Re: Tell me your lasting affects from KD

Post by kalan » Sat Sep 27, 2014 1:33 am

Hi all. I just join this forum. My daughter had kd 15 months and she has being complaining about stomach pains and headaches since age 4. Doctor said she has migraine, but I think it is more than that. Her headaches often gets worse during school time. Any advice

GaylaM
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Joined: Fri Feb 06, 2015 10:46 pm

Re: Tell me your lasting affects from KD

Post by GaylaM » Fri Feb 06, 2015 10:53 pm

I don't know about laying effects. My 9 year old son was just diagnosed two weeks ago with KD. He had one round of ivig and improved temporarily. She crashed again right afterwards. After several hours of iv fluids and tylenol/more in he began improving again. However after 6 days out from the hospital he still needs anti nausea medicine to eat the first thing in the morning without puking. In addition, he has been having severe joint pain in his hip. I honestly thought he might have a blood clot since he is unable to take the asprin therapy. Along with the KD he had influenza A. So no aspirin therapy for at least another week. He is becoming hateful and mean to his whole family. Will it ever get better?

marajade
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Re: Tell me your lasting affects from KD

Post by marajade » Sat Mar 21, 2015 5:22 pm

I had KD at 3 yrs old. I am now 26. Here are things I've noticed in my own life:

-at 4 yrs old I had chronic headaches for about a year, especially triggered by light and sound
-also around 4 yrs, I developed severe seasonal allergies including oral allergy syndrome (I seem to have an over-reactive immune system in general)
-I played sports all throughout my childhood and into college. Every endurance sport I did (running, swimming, crew, etc), I always reached an endurance threshold where my progress would all of a sudden slow compared to my peers. I was told (and used to believe) that I probably had a lower pain threshold and just wasn't pushing myself hard enough. However, after giving birth naturally without medication, I don't think it's a pain tolerance thing. ;)
-as an adult, I still seem to need more sleep and have lower energy than my peers
-I have irritable bowel syndrome, and I believe I am particularly sensitive to high levels of phytic acid in my diet (used to think it might be gluten, but discovered issue was more general than that for me. Phytic acid seems to make more sense to me).

Hope this helps.

rachl122366
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Re: Tell me your lasting affects from KD

Post by rachl122366 » Wed Mar 25, 2015 8:57 pm

My son had KD when he was 1, he is now 24. He continues to experience his hands and feet peeling about once a month, has a lot of joint pain, massive blood clot in his left leg at 23 and excema/hives breakout every couple of months. His highest temperature when hospitalized was 114°. He experienced severe asthma for approximately a year after diagnosis and he seems to be very susceptible to viruses. He had extreme irritability for approximately 6 months after overcoming the disease. He continues to be very moody, over and above "the norm." I always wonder if some of his strange health issues as well as behavioral issues are in any way associated with the KD. His temperature at that young of age I would imagine had some type of lasting affect. I am concerned about him and any other child who survived because there just doesn't seem to be many answers. Very frustrating because a lot of people think I'm crazy. And I wonder will he have to worry about his children having the disease.

AlwaysResearching
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Re: Tell me your lasting affects from KD

Post by AlwaysResearching » Sat Jul 13, 2019 2:36 pm

Hi!

My son is 25 now. He had KD at 15 months. He was very ill for 5 months, in to the doctor sometimes twice per day. They couldn't cure him and he kept getting sicker and sicker and they kept doing worse and worse things to him (HUGE antibiotic shots in both legs - he stopped breathing; spinal tap - he stopped breathing; etc.).

He was hospitalized many times over that time period for dehydration. Finally in May, after the pediatrician consulted with another couple doctors about all the symptoms he began showing they diagnosed KD. He was immediately hospitalized and received Immuno-Globulin.

The next day the side of his face/neck was swollen but he was happy (he'd been miserably ill for 5 months) and up and playing in the backyard. Prior to the hospital he'd lost the ability to walk (arthritis sets in to the weight-bearing joints, stopping them from walking).

Five months after that he was given his MMR. Within a month of that he wasn't himself again, and has never made it back to being the happy little guy that he was.

He was diagnosed with Asperger's Syndrome when he was 12 even though life was horrendous for him from shortly after KD/MMR. I'm not saying the MMR definitively caused his Autism, just putting it there for the timeline because of all the lingering questions about mercury, including my own questions.

Anyhow, after reading what I have here I believe that he's dealing with a combination of Autism and all the effects from KD that I didn't realize were from KD.

Although life was a massive, major challenge for him It wasn't until he was 12 that it was chalked up to Autism. Never a thought that KD had anything to do with it.

He's still living with me, probably always will (or always with someone that can "run life" for him). He works a job that is satisfying to him. He's on SSI.

His immune system is very weak. He catches everything that goes around, and then some.
He has constant allergies.
He has the joint and muscle pain that is mentioned throughout here.
I just yesterday found out that his feet are still peeling to this day.
He has terrible warts. I haven't seen that mentioned much but I wonder if it's related.
Migraines.
Eczema.
Occasional chest pain.
Bouts of fatigue.
Lymph nodes usually swollen.
Was on an IEP in school.
Social problems.
Anxiety.
Depression.
Frustration.
IBS.
Still needs lots of sleep.
Tics.
Dandruff.

I took him to the doctor today because it's time for a cardiologist follow-up. They found a bruit in his right carotid artery in 2016 and they were supposed to do an external angiogram but somewhere things fell apart.

So this new PC refuses to believe that young adults that survived KD should be followed up with. She pulls up the first return in her search in the office and says "I'm not finding anything to justify sending him to the cardiologist".

She couldn't find anything in his medical records about the bruit having been found and was basically calling me a liar.

She said that she's listened to his heart and everything is fine. She then listened again while we were sitting there and said everything is fine.

We went round and round and I was getting angrier. She said that the insurance company wouldn't approve the referral because she couldn't justify it. I told her I would appeal the insurance company.

It was then that she decided to bring in their internal medicine doctor. She thought she was going to shut me up.

The internist listened and within seconds told the PC that my son has a heart murmur as well as 'a sound' in his artery.

Flurry of activity, now we have a referral to a cardiologist and are scheduling for an echocardiogram for his heart and an ultrasound of his artery, along with another test that I can't remember what it is.

I've been watching him seem to falter a bit lately and I'm concerned that it has something to do with this, his heart issues. I'll post more here when we know.
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As an aside, no apology from the doc for dismissing me like she did.

Is it really too much to ask that my son's doctor, who has known him for less than a year, put stock into what I have to say about his health? It's been like that for him since he was a baby, I've had to fight non-stop to get him all the different types of help he's needed over the years. I'm willing to bet other parents here have dealt with those same issues...

At any rate, I'm sorry for the rant, I'm still really irked about that whole experience with her yesterday. If I hadn't have been with my son he would have accepted what she said about everything being fine and he wouldn't be getting help for what's happening now. That just boils my blood.

I hope that my list of lingering effects helps. I hope that you were able to pull this off but if not, still thank you so much for the thread as it opened my eyes to the fact that he has probably all along being dealing with aftereffects of KD.
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Oh, as another aside, it's believed that my son contracted KD due to untreated strep throat. As mentioned, he was so very ill for so long but they never treated him for strep over that time frame.

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