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Jett Travolta KD

Posted: Sat Jan 03, 2009 12:45 am
by mama sheez
Hi! I am new to the site and I am so blessed to have found this. I was watching the news today and learned that John Travolta and Kelly Preston's son passed away. When they mentioned he had KD, all of the feelings of January 2002 came flooding back. Our son, Zack was diagnosed at the age of 3 on day 10. He had all of the symptoms - red strawberry like tongue, high fever (105), rash all over and swollen lymph nodes. I thank God everyday for my pediatrician and his knowledge about the disease. He was admitted into the hospital and was given gamma gobulin. There was swelling on the left side of his heart and he was watched for a few years. He is now 9 and is a healthy active young boy. I am now concerned that he should be checked every year, we have not seen his cardiologist for quiet some time. There is so much we do not know about the long term effects and I am really worried now. Does anyone have any words of wisdom for us? Thank you. Mama Sheez

Re: Jett Travolta KD

Posted: Sat Jan 03, 2009 2:38 am
by Momcat
Dr. Burns, a researcher at UCSD is recalling her KD patients to do studies on their hearts. Myocardial fibrosis is an concern in the long term with KD. These are findings they've found in Japan and it is now getting more attention. I think all KD kids should be continuing to have followup care over the years.

Re: Jett Travolta KD

Posted: Sat Jan 03, 2009 9:05 pm
by shopgirl1989
Mama Sheez,

I can only tell you our experience with the disease. My son had KD in November 2004 at the age of 4. His case was a text book case complete with the Red Conjunctiva, strawberry tongue, high fever (106 with Tylenol), red palms and the irritability. We took him to the E.R three out of four days each with a different diagnosis. First it was Pink eye, then it was strep throat and finally a Rheumatologist at the University of Michigan diagnosed him with KD. I had never even heard of the disease. He was treated immediately with Immunoglobulin and responded very quickly. He took baby asprin for about 4 years along with a flu-shot every year to help protect him. He went about every year for an echogram and was cleared when he was 12 from any further echos....there was absolutely no coronary artery damage. He is now 18 and very active. I do still worry sometimes about the heart issues but so far so good.

I do have some concerns with all of the blame seeming to be put on KD. Up until now I have never heard or read anything regarding the connection between KD & Autism or seizures. But whatever the connection the Travolta family is in my prayers. I DO agree that it is an autoimmune response and I often wonder if my family history of autoimmune disease somehow played a role in my son's KD. And I do believe there is a link to carpet cleaners...I only say that because my son was exposed to a carpet cleaning business through his grandparents business at the time he came down with KD.

I hope this has helped a bit. The bottom line is to stay on top of it and be PERSISTANT...if we had not been persistant things could have been very different.

Re: Jett Travolta KD

Posted: Mon Jan 05, 2009 8:33 am
by CJS mom
I believe Jett had seizure before he got KD. I remeber along time about when he was little Kelly Preston being on TV saying they blamed vaccines for his seizures. I dont think his seizures had anything to do with KD But I could be wrong. I think it is a horrible situation and my heart breaks for them.

Blessings
amy

Re: Jett Travolta KD

Posted: Sun Aug 09, 2009 2:02 pm
by liquidambar
It was also stated by many people who knew the Travolat's that Jett had autism too.

CSJ mom - I did not know that Jett's mother thought it was vaccines. It said on the news that she thought it was carpet cleanrer.

I have my entire family all three of them with a disease that is related to Kawasak's and it is all caused by vaccines.

My daughter had kawasakis in 1983 she was a little under 2 years old. After her 4th DPT shot she ran rhuemotoid like fever all the time and then six weeks later came down with Kawasakis. Nothing comes up with Kawaskais, not measles, not even scarlett fever! Growing up she was always running a fever, stiff, nausaous. She has some obsessive compulisve behaviors, (washes her hands so much they are always chapped or bleeding, and she always use to check and recheck her backpack going to school, even though she knew for a fact that what she was checking for was in there! This still gives her trouble even today - so she has to leave early every place she goes, and she still runs late! She has two degrees, one in biology and the other in nursing. She had to get her Hib B recently and on the third booster the old stiffness has come back. Two months ago I went with her to a rhuematologist appointment. Her Sed rates and CPK are back up. He said she had inflammatory unspecified disease (return of KD in a different form, would be my guess, the Hib B shot caused it to come back?).

My son at nine months old reacted to his DPT shot six hours after taking his third shot by having a stroke. He was walking, but it took him three months to relearn to walk again. Six weeks after this stroke he ran a high fever and had a grandmal seizure. The fever lasted for about a 10 days. Another six weeks went by and the same exact thing happened. He had a seizure even though he was on phenolbarbitol (an anti-seizrue drug) by that time (doctors said it was febrile seizures, and by four he was off of it). My son had fevers for years that made him light sensitve and put him in bed for days at a time. The schools said he had autism. Today he is epileptic and high functioning autistic called aspergers. When they finally dignosed him with epilepsy at age 17, even though he had many seizures both partial and grand mal for years _ I refused Depokote. Why, because my son had low L-CARNITINE levels and Depokote will cause low L-carnitine. Jett was on Depokote!

My husband had a reaction to a tetanus shot within thirty minutes after getting this vaccine at work. He passed out on the floor of our home, he was alone at the time, he crawled to the bed and his jaw and hand clenched uncontrollably all night long! (sounds like a seizure to me). Six years later he had another tetanus shot after stepping on a nail and three weeks later he suffered horrible muscle aches all over his body, esp back of his legs. He also started experiencing panic attacks. This was a man that was a polymer Research Chemist for Dow chemical and had traveled all over the world, he even stayed two summers in Venezuela (work related). Finally, four years later, Emory Clinic dignosed him with a mitochondria disorder not inherited but ENVIRONMENTALLY acquired! His L-Carinitine levels are low and CPK levels are high too! This year he finally had to take disability because he cannot keep his oxygen up. Oxygen levels running 88 to 90, some times dipping down to 60 - IT is suppose to be 100 all the time. It is all related, mitochondria, autism, OCD, and autism. DId I mentiion tics or tourettes? Yeah, we had some trouble with that too.

What cures seizures? What did they do before they came up with things like Depokote, phenoylbarbitol , DIlantin -- They starved the patients. Then John Hopskins University while working on diabetis found a diet of fats that they call Ketogenic Diet would cures 39% of the epileptic patients. Now John Hopkins came out with a new study this year that said that a modified Atkins Diet of only 15 carbs or a modified glycemic diet would help or cure epilepsy, and they were looking at how it would work on autism and other inflammatory diseases. The mitochondria disorder, is thought to be caused by the body no longer being able to break up long chain triglyerides, that is what is usually found in a high carbohydrate diet.

But the doctors are all saying low fat diet, and a low fat diet is usually a high carbohydrate diet. There are only two pathways the body can get energy, and that is either through carbohydrates that are made into glucose, or fats that are made into ketones by the liver.

Two years ago a little girl called Hannah Poling was injured by a vaccine. She has autism and uncontrollable epilepsy. I hope by now you are understanding that the inflammatory disease is systemic, harming different parts of the body, and yet it is the same disease. Hannah Poling won in the federal vaccine compensation court (no one wins in this court, it is designed that way) Her father is a very talented neurologist. He use to even work for the FDA. Now he is in private practice. He said that something happened in the immune system and now her very long chain triglycerides were not being broken up and thus could not get pass the membrane of the mitochondria that is the power house of the cell. He has his daughter on a modified Atkins Diet. If it is good enough for his daughter then it is good enough for my entire family, because for once when you hear a doctor say," If it were my child I would do this ----" This time I know for a fact that it is HIS CHILD AND HE DID DO THIS TREATMENT!

God bless the Travolta's and as time goes on and heals not their hearts but at least brings some comfort, they might come out and help our community. For it is not just Kawaskais--- but this rabbit hole runs much deeper!

Re: Jett Travolta KD

Posted: Fri Feb 07, 2014 12:56 pm
by mama
i have read so much and think not enough has been done or the lagging interest with pharma companies is perplexing. My father was a scientist. I still believe his theory is more promising than carpet shampoo..... when he saw my son... peeling skin, red tounge, feavers of 105-106 for two weeks thatn could not be reduced by anything that pharma had available.... his explanation was "something like mercury poisoning! He never changed his mind. He worked in a chemical plant for the war effort during WW2 and did testing for the government He was aware of many reactions to numerous chemicals.... The most recent theory has been soy - thanks, to a doctor in Seattle Childrens Hospital allergy research facility. i am very attuned to anaphylaxis and to food-related substance and have seen extreme and unusual reactions.

The Seattle Times recently ran 2 front page artilces.... related to orphan drugs and the recent interest in pharma companies to find "cures" to the financial benefit. Why not KD?

For us to be sidelined in this kind of research is questionable at minimum and I would like to see just one pharma company report to the public in some kind of fashion that KD is of interest to them and why it has been skirted. There is a place called "medical city" and it doesnt seem to interface with U.S. much. In the case of food.... anaphylaxis is not a result of food from "naked" seed.... it is a reslut of the aftermarket uses of chemicals and cross-pollination of same -in which there is NO LABELING......

There needs to be a lot more public interest..... KD is not going away.


MAMA

Re: Jett Travolta KD

Posted: Tue Jul 24, 2018 12:18 am
by KDMama
My son was diagnosed and treated for KD last year. He has recurring symptoms as we speak, but I felt the need to add that he has had zero vaccines (none of my kids are vaccinated), nor was he exposed to carpet cleaners. I believe Big Pharma and the harsh chemicals we use in EVERYTHING nowadays are a HUGE cause of myriads of illnesses, but my son got it without being vaccinated. Maybe he was affected by a sloughing vaccine.... that happens, and that’s how he and his two siblings contracted pertussis when they were babies....