Recurrence of the disease - how frequent is this?

General discussion regarding Kawasaki disease
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johnandnykki
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Recurrence of the disease - how frequent is this?

Post by johnandnykki » Wed Dec 02, 2009 11:03 am

My daughter had Kawasakis at age 5. She had all the symptoms and was give the IV very promptly with no detected heart issues. We had regular heart scans until she was 8. However, since she had the disease whenever she gets any kind of flu infection/cough/cold the skin peels from her feet. This summer (she is now 10) she had a strep throat infection causing ankle pain, peeling feet etc. but as the weeks went on she acquired ecah of the symptoms of Kawaskis but at differnt periods, not all at the same time. The GP told me it was strep throat. Her eye remained injected as she still has very little sight in it 9 months on. The said the eye would fix itself after a week and have no explanation. Her joint pain in the ankle has remained and does not response to medication, rest etc. They told me it was a hypersentive reaction and would fix itself. Yesterday they called me and said they had actualy found some soft tissue swelling of the medial malleolus in the ankle and could not explain why. The skin peels from her feet on a daily basis and they have no explanation. As things have been spread over months they did not mention Kawasakis but yesterday mentioned it may have been a reacurrence of the disease - but we've missed the heart scan period.

Has anyone else experienced a recurrence of the disease? were the symptoms all at the same time? have other children had this ongoing skin peeling? and the joint pain?

I know that the doctors are clueless about this disease and I thought that once she had had the disease she couldn't get it again.

Any advice, knowledge or guidance would be gratefully recieved.

liquidambar
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Re: Recurrence of the disease - how frequent is this?

Post by liquidambar » Wed Dec 02, 2009 1:08 pm

Here are some homopathic things that I did for my family that seems to have worked

First; something has happened to the energy cycles of the body. The carbs/glucose pathway is not working correctly. From what I can find out and believe is that the carbs are no longer being transported effciently across the membrane of the mitochondria. However the fat pathway is doing okay. So I changed their diet to the Atkin's diet of low carbs. And it is working. I mean it is working!!!! It really is!!! We went off of it this Saturday (had a big Thanksgiving) and the muscle aches, low on oxygen, all past symptoms returned on Monday.

The vasculities foundation said you should avoid sugar, white flour, white potatoes and any high glycemic food. That is a food rich in carbs.

Get the Atkins book and do a week of his recipes, South Beach diet too is a low glycemic/low carb diet book.

Also I give supplements. This past month I tried a new one cucumin a compounded substance derived from turmeric an anti-inflammatory herb. I believe it is making a difference, I am very excited.

I also give vitamin B complex and extra folic acid and vitamin B12 - some gets the vitamin B 12 shots, you may want to go the extra mile and get her shots for right now if you can find a doctor that will do it. This helps in the transport of carbs over the mitochondrial membrane. All these are vitamin Bs and very important in the energy cycle chain.

I also give fish oil along with vitamin E. Vitamin E has something to do with making the fish oil/ omega 3 more stable and work better. And as far as omega 3 for the immune system to work properly there has to be a proper ratio between Omega 3, 6, and 9. American diets is full of 6 and 9 but not so much 3. I am not sure if I believe that or not, but olive oil and fish oil are good oils that may help on anti-inflammator diseases, so I figure might help and no harm.

I give vitamin D3 - 2000 a day ( made a real difference) I give vitamin C twice a day since it goes through the body so fast. Both help and support the immune system.

I also give them 500mg of L-carnitine a day. All of my family is low on L-carnitine according to their blood test. L-carnitine is important in helping the peroxisomes (an organelle with in the cell) break down long chain carbs and get them ready for transport across the mitochondrial membrane. L-carnitine is important in heart/muscle function. Being low on it can cause seizures too. Which is strange because there are some seizure medicines that depletes L-carnitine, like depokote (valporic acid). I am sure that is what killed John Travolta's son who was taking it.

Good luck, hope she starts feeling better soon.

Momcat
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Re: Recurrence of the disease - how frequent is this?

Post by Momcat » Thu Dec 03, 2009 3:03 am

If they suspect your child may have had KD again then they should do another echo no matter what and if I were you I would do it just for peace of mind.
The peeling of palms or feet is not an unusual characteristic of post KD. Many of our kids have the same problem.....some of the kids have peeling all the time-like Beth's son Gregory. Our daughter has had a lot of skin issues over the years since KD.
Some of our kids also have unexplainable joint pain. Our daughter has pain that comes out of the blue and leaves just as quickly. If she has any type of fever she has joint pain. She also had a hip that had a lot of fluid on it and she couldn't walk well for a couple of weeks-was on crutches for about a week (unexplained)--the MRI showed a definite problem at that time. Now that hip "pops" and when it does it hurts.
Something seems to brew in a few of these kids post KD and you probably won't find a pediatric cardiologist. rheumatologist or infectious disease doctor that will support any of your findings, but you will hear these stories from older KD victims or parents of KD kids.
Was there a positive test for the strep?

bethroth
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Re: Recurrence of the disease - how frequent is this?

Post by bethroth » Thu Dec 03, 2009 10:50 am

My son was 5 also when he had KD he is now 12. He has peeling of his hands and feet bimonthly. He has joint pain mainly in his ankles that has never completely resolved since the KD. He had x-rays taken of his ankles about 4 years ago and they also saw swelling of the soft tissue. He has been to many different Ped. Rhuematologist and they can not figure out why. No matter what I would contact your daughters cardiologist and ask for a echo. My son gets them every year and will for the rest of this life. He had not notable heart damage at the time of diagnosis but his Ped. feels that there is to much unknown with KD and having any echo every year just helps keep up with his overall health history. Good luck and feel free to contact me if you have any questions as my son has been going through this for a long time.
Beth

Wskinner
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Re: Recurrence of the disease - how frequent is this?

Post by Wskinner » Fri Mar 25, 2011 8:23 pm

This is my first time on this site or any to do with Kawasaki and I am praying for some answers. My daughter was diagnosed last march, had the treatment, 6months of follow-up (card and rhum) and everything came back normal other than a heart murmur which the docs said could have been a result of kd but may have been pre-existing. Since this diagnosis my daughter has been sick a lot -the last two months alone she has had an ear infection, throat infection
Uti and now a rash that I can't explain. I continue to tell the health care professionals about her kd diagnosis aaa I can't help but thi k that it is all related yet no one will listen. The most recent rash looks very much like what she had with kd but no fever. Also I think thar she is more irritable and much different behaviorally since kd. Can this recur? Any thoughts on the rash? Anything people are doing to keep their kids healthy? Thank you

liquidambar
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Re: Recurrence of the disease - how frequent is this?

Post by liquidambar » Sat Mar 26, 2011 12:27 pm

Wskinner:
Heart mumur.
After my son was checked out thouroughly at the hospital after his birth - the birth records says: no indication of heart murmur.
After my son's first check up at the peds off and after several other check up too - the ped records says no indication of heart murmur.

A couple of weeks after his first DPT shot the ped heard a heart murmur. An X ray was given and the ped records says the heart was boot shaped. The left venticular was swollen.

The heart specialist at the University of Kentucky listened to it a few weeks later, and said he thought that my son would always have it but it will never give him any trouble.

Of course this was in 1986 . Some one must have changed the DPT shot because apparently the DPT shot was not the same as when I was a child. Injuries went up from 1 out of 11,000 to 1 out of 300 from this DPT shot- at that time. This was about the time that Barbara Lou Fischer started her National Vaccine Information Center after her son was injured,parents took the problem to Congress, and the vaccine companys became worried that they were going to be sued to oblivian, so Congress said that parents could not sue but had to bring vaccine injuries to a special court that had lawyers who would decide if there was an injury or not - they were called special masters. The money when rarely awarded comes from the tax payer - all of us that get a vaccine pays a tax that goes into this compensation plan. However, this special court is a mean, lean fighting machine of red tape, that is meant to discourage, and deny justice to the victims.

Back to heart murmurs:

Five years later the heart murmur could not be heard, and it still is not present. So there is some very good news for you.

Of course I kept up the shots and later on that year my son did not have the heart problem but he had a stroke - like episode so that caused a lot of problems, with behavior and learning.

Once again I feel like I came out smelling like a rose though, because after epilepsy and PDD-NOS, aspergers, tourettes, attention deficit disorder (all dignosis that leave us all scared to death)- my son is now 24 and is doing great. He has a degree in electronics, he drives, he does a lot of the farm work - cutting hay, raking hay, feeding the cattle, taking care of the horse and geese and on and on. He is funny, lovable, wonderful human being.
I am pretty sure that that heart murmur was an inflammed heart valve. I think others here on this web site have mentioned such and yes even thier doctors think it is Kawasaki related.

cotton81
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Re: Recurrence of the disease - how frequent is this?

Post by cotton81 » Tue Apr 01, 2014 9:59 am

My daughter was 4 in Feb 2013 when she was diagnosed. First they tried to say strep then staff then both together. Then on the fourth day I said im leaving here if you dont tell me what you think it is and treat her. Thats when they said could be KD and I said treat her now or we leave today. They said it normally has to be 5 days of her symptoms but they would go ahead and treat her. 30 mins after treatment she was up and feeling better.

They told me her antibodies were fighting them selves and so she needed to receive someone elses antibodies to over power her own and shut them down. Well it worked. Once we left hospital the rest of her body finished peeling. She lost patches of hair and her whole body lost a layer or two of skin and I do mean whole body.

Since then she has been monitored by her cardio Dr. and they say shes ok. She already had a heart murmur and tachycardia so they monitor that closely.

However, in the last month she has been having random ankle pains which comes and goes so i just dismissed but 2 week ago she broke out in rash all over her face and ears and it looks just like kawaskies disease did. I didnt panic bc she didnt have a fever but took her to er anyways just incase. They said no it was a viral rash or allergies and gave her nasal spray.
Its started peeling now and no benadryl or excema medicine or nasal spray is helping. I know its the KD side affect what I dont know is if it is back or just a symptom. So today she goes to the Dr. and tomorrow she sees the Cardiologist.

Doctors arent listening to the parents when we tell them it is related to KD because the disease is so new they dont understand it.

We have to find the right doctors and make them see its related and that they may need another antibody treatment.

Thanks for sharing your stories. Hope mine helps as well.

Apollo530
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Re: Recurrence of the disease - how frequent is this?

Post by Apollo530 » Sun Jun 24, 2018 9:08 am

My son was diagnosed and treated for KD at 13 months and just had a reoccurrence at 29 months. The second time was more difficult to treat and required two rounds on IVIG and steroids to treat. He did test positive for strep and doctors were originally treating that, which delayed his treatment, but he was able to receive his first IVIG treatment during the ten day window. It’s very important to push for KD reoccurrence if a parent suspects it because many doctors will dismiss that diagnosis because it is rare. Our son had every symptom of KD in addition to strep. Fortunately, we had one doctor at the children’s hospital who refused to take KD off the table and he was finally able to start the treatments he needed on day 9.

Cici
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Re: Recurrence of the disease - how frequent is this?

Post by Cici » Wed Jun 27, 2018 3:26 pm

Thanks so much for sharing, Apollo.
I’m so glad that your son got his treatment during the ten day window. That doctor who refused to take KD off the table is just amazing and priceless.
Raising KD awareness is so crucial and I’m committed to do so.

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