Acute Kawasaki disease 4 yr

General discussion regarding Kawasaki disease
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KSlate
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Acute Kawasaki disease 4 yr

Post by KSlate » Fri Apr 01, 2011 12:31 am

My son started low grade temp c/o neck pain on thur night 3/23, fri 3/24 am 102.5 swollen lymph nodes bilateral massive sz of golf balls, dr appt rocephin 1 gm IM given, sat. 3/25 developed rash, red macular blanchable, on trunck, then spead to feet defined boarder like he was wearing socks, palms of hand, very fast spreading intill almost complete coverage, then eyes allergy looking, miserable, admitted pediatric unit, sun 3/26 flight to childrens Dallas, later that day lip/ tongue involvement, dx made IVIG started, spiked high temps again after 12hr post txt, IVIG started again on 3/29 now 24hr post started to spike temp again, lymph still massive after iv clyndimycin since 1 admitted. Pural effusion - rapid breathing - distended abd- swollen generalized - no food since we'd night, + adnoidvirus titer, help he seems to be going down hill fast why is it not helping begging for ideas or advise!!!!

Momcat
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Re: Acute Kawasaki disease 4 yr

Post by Momcat » Fri Apr 01, 2011 2:03 am

Are they going to try pulsed steroids?

KSlate
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Re: Acute Kawasaki disease 4 yr

Post by KSlate » Tue Jul 05, 2011 10:49 pm

He was released april 11th, they did consider that & remicade, but he was becoming so sick they were scared because it would wipeout his immune system & they couldn't r/o viral, then on the 8th after he finally started to show improvement (removal of chest tube, ESR & CPR slightly decreasing, alertness better) they did a follow up echo & found a 2.8mm aneurysm in right coronary artery & dilation in left, so we did end up doing the pulse steriods, which helped alot decreasing temps & ESR & CPR. We continue to have out patient echo's every 2wks, then we finally had normal labs on June 1st, & his echo on June 27th they said the largest measurement was 2.3mm which the consider normal & are saying the aneurysm is gone & his echo is normal, we will cont on the asprin therapy but decreased to 1/2 81mg ASA per day & she doesn't want to repeat echo for 1 yr then says she may release us for her cardio service, which concerns me a little seems like everyone on here goes every yr for ck up? Also does anyone have a take on the waiting 11mo before getting vaccines? he was due for his 4yr ones, our cardio told us to go ahead but everything I've read says 11mo?
kelley

Momcat
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Re: Acute Kawasaki disease 4 yr

Post by Momcat » Wed Jul 06, 2011 12:52 am

For the MMR it is 11 months........any live vaccine. Chicken pox might be a live vaccine also. I think you can read up on all that at the American Heart Assoc, site for KD. Hang in there!

toffeegirl
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Re: Acute Kawasaki disease 4 yr

Post by toffeegirl » Sat Aug 20, 2011 4:21 am

Hi Kelley

My daughter is also 4 and is due her last MMR or Pre-School booster. She was actually booked in for it the week she got sick with KD so obviously it never happened. Our consultant said that it is okay for her to have it after the IVIG and will afford her some protection but it may not "take" and she may need it repeating in 9 months to a year. I have seen this advice online during my quest for KD info too.

I am tempted just to leave it to be honest as I think she has had enough of needles for a while but I haven't made a definite decision yet. We have a heart echo next week and another outpatients appt in Nov so I think I will try and get some more advice then. I am worried about leaving her open to anything when her immune system has already taken such a kicking.

I did speak to them about chicken pox too as she is still on oral steroids plus low dose aspirin and she said that the IVIG may give her some immunity to chicken pox for 3 months or so. I had not heard this before so don't know if I dreamt it :) Think it's a Catch 22 with this one...the KD treatment is what is making me want to vaccinate but it also what can prevent the vaccine from working. In the end I decided that I would keep her off pre school until she has finished her steroids and hopefully, all things being well, her aspirin. Only another month to go! The last consultant I spoke to said that this would be the best course of action if I was able to manage it.

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Re: Acute Kawasaki disease 4 yr

Post by Momcat » Fri Aug 26, 2011 12:44 pm

Any live vaccine is not recommended for about 11 months post KD. Actually the IVIG has a ton of immunities in it and I think that is why. They circulate for a long time and the body carries a more powerful punch towards invaders....maybe that is why it works against KD. Apparently other people HAVE what it takes to knock out KD and KD kids do not have the same genetics. No one knows what triggers the whole thing, but IVIG USUALLY works for most kids and the IVIG immunities really take a swift kick to the KD. (Either killing off the invader or supplying the immune system with the needs to get itself under control) So, their bodies really are not lower on the immunity thing, they are actually in hyper-drive. No one knows what the answers are definitely, but treatments do point to some things. These kids have different genetics AND something has entered their system that they do not handle well--possibly even a chain reaction of several things going wrong. So, giving live vaccines at this time seems pointless to me if the IVIG destroys them. Some of us had some unpleasant side effects from the vaccines........so I'd give it the recommended time and re-eval what you want to do in the long run. I'd say less is best at this time for their little bodies~!

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Re: Acute Kawasaki disease 4 yr

Post by toffeegirl » Sat Aug 27, 2011 4:37 am

Momcat

I really enjoy reading your posts :) You have obviously done a lot of research and I always find them informative and factual.

I figured the same about the IVIG...that it would give her immune system an extra oomph but I'm just not sure if the same is true for the ones that were classed during KD treatment as IVIG resistant. I seem to remember that elsewhere you said that you had travelled the same path with pulsed steroid treatment etc and wondered if you are aware if the general consensus is that even the IVIG resistant kids will get the benefit from the antibodies in it. I can't actually find anything that differentiates between the kids that respond and the kids that don't. Not sure if this is because there is no difference or because I am missing something :?


Read that back twice now and still not sure it makes sense.........

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Re: Acute Kawasaki disease 4 yr

Post by liquidambar » Sat Aug 27, 2011 9:17 am

IVIG is made from 1000 people's blood.
Some patients will have to have three treatments of IVIG (that is what I read)
So if it genetics that is involved that would mean one person out of 1000 was not prone to Kawasakis, or in some cases one person out of 3,000 is not prone to Kawasakis. That would mean there is a lot of people out there that is prone to Kawasakis, or very few people out there that have the genes to fight againest Kawasakis. That would also mean that IVIG is a gene thearpy and it is not.

IVIG from what I have read - they are not sure how it works, ( that is what they say on all the seizure medicines my son has to take, and then after making this statement they go into detail how it works in the little bit print, so do they or don't they?). But back to IVIG in one paper I read said they thought it worked by reteaching an immune system gone wild to calm down, and to stop producing the B cells that is immune cells made in the bone marrow, usually adults immunity comes from the bone marrow. T cells made in the bone marrow too but migrate to the thymus and spleen to mature and are called T cells. Little kids usual make most of their immune cells from the thymus and it shrinks as children gets older and swtiches more to B cells. Children also makes a lot of immune cells from thier spleen too.

B cells secret proteins call immuno globins, IgG, IgM,IgE, IgD, IgA and with thier help they grab on to the pathogen and drags it out of the cell .

T cells pay more attention to pathogens once they are hooked on to an immune complex.

A good IVIG must have all four groups of IgG in it so it only has IgG antibodies. The peripheral tissues like the urinary tract, lungs, eyes, digestive system is defended mainly by IgA antibodies, so the IVIG treatment may not help those parts of the body. And if IVIGs are given and a kid has a lot of IgAs or others, it may cause an allergic reaction to the IVIG

Yet stomach aches, a symtom, before our little ones come down with Kawasakis is very common, and even perhaps part of this disease.
My family has had digestive system problems that have presisted years later.
We did not have the IVIG treatements when my kids were little but I noticed on this web site that many are still having the same problems with the peripheral tissuse that had the IVIG treatments as did mine did without the IVIG treatments.

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Re: Acute Kawasaki disease 4 yr

Post by Momcat » Sat Aug 27, 2011 10:34 pm

LA, your logic in your first few sentences makes absolutely no sense at all. I can't even figure out what you are talking about. Also, I have never heard ANYONE say that IVIG is "gene" therapy".
Toffeegirl-
IVIG usually works the first time given, if it is given a second time it is not that common. Very FEW doctors will give it a third time as they know they need to move on to steroids or Infliximab which are powerful anti-inflammatories - remember the immune system is on hyperdrive and won't shut down--from some sort of "glitch in the system". I think that our kids that are IVIG resistant either have a system that truly over-reacts in such a strong way that even the IVIGs don't touch it, or some say there are lots of kinds of IVIG and even by pooling immunities from 1000's of donors into one bag doesn't mean that it will contain what is necessary to stop the KD. Some have speculated that different manufacturers might even play a role in how it is processed and if certain ones work better than others.
It may have something to do with where the whole reaction is caught during the inflammation also---that is probably why they know that if it isn't administered in the first 10 days of the inflammation the damage is already done from the bodies immune system causing all the damage to the linings of the arteries. I think the other immunities to a ton of other things still do work from the IVIGs, most likely, and that is why the live virus vaccines do not work later. I'm not sure anyone has ever figured out what IVIG resistant means-----but I think it just means that for some KD it isn't working---some have even said there might be different kinds of KD. So, we don't know what triggers it (chemicals, vaccines, virus-etc), we do have research that proves the genetics of KD kids is different so some steps in auto-protection have glitches---perhaps in many areas so it makes the likelyhood of being "KD prone" very very rare, we have no clue how many steps are involved in this whole chain-from invasion of whatever the cause is to how the immune system reacts and all the pathways it could get better with or worse and what affects it during this time--who knows........
It's hard to know exactly what to do, you have to go with your best parental instincts after being informed as much as possible. All I know is that as time goes on your worries will dissipate after the first few fevers, etc post KD. We kept our daughter home far more than we needed to post KD-worried about germ exposure etc, but because she had such huge aneurysms and they take about 6 months or so to stabilize (normally anyway---her kept growing, but then again she had fevers for months--extremely rare)...she was out of playground activities for a while until the cardiologists felt it was OK for her once her bloodwork was back to normal and once she was off the oral steroids and chemo drugs (used to shut down her immune system) and I think they were making sure that the arteries had some healing time. Moms tend to go on hyperdrive also post KD and sometimes I think the kids suffer more by having to stay indoors and some moms tend to blame everything they ever have on KD. We know our daughter has a few weird things she didn't have before KD, but what the correlations are........well, they have yet to prove.
Well, I'm not sure much of that made sense either , hopefully I haven't confused you even more!

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Re: Acute Kawasaki disease 4 yr

Post by liquidambar » Sun Aug 28, 2011 9:25 am

Momcat said:"LA, your logic in your first few sentences makes absolutely no sense at all. I can't even figure out what you are talking about. Also, I have never heard ANYONE say that IVIG is "gene" therapy"

Momcat implied in her earlier post that is was like "gene Therapy; "Apparently other people HAVE what it takes to knock out KD and KD kids do not have the same genetics. "

I assumed that was what Momcat meant.

ARNOB 123 : "There is also evidence that Kawasaki disease produces altered lipid metabolism that persists beyond clinical resolution of the disease".
Yes, metabolism called acquired mitrochondrial cytopathy is what we have found has persisted after Kawasaki's in our family.

Do you have any more information? I would love to hear anything more?

Thankyou.

toffeegirl
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Re: Acute Kawasaki disease 4 yr

Post by toffeegirl » Sun Aug 28, 2011 5:12 pm

Momcat.

Thanks for your response :) It is difficult to know what to do for the best and I think you are right that all I can do is use my Mummy instincts to make the best informed choice that I can. I agree with pretty much all you have said and am already making a conscious effort not to overprotect going forward and also not to be tempted to hang every future ailment or whatever on to KD. I will keep up to date on the research available and worry about the stuff they can show a direct correlation with I think, rather than dream up more complications for myself. It is still early days for us and I know that the first temperature or illness she gets from now is going to be scary for both of us. At coming up for 4 she is aware enough that she is worried about getting poorly again and I know that with the best will in the world I am also going to have the fear in the back of my mind. The key for me I think is not letting the fear take over and making sure that I keep things very positive and stress free for her. I am keeping her off preschool until her oral steroids are finished in October and then we will really have to try and get things back onto an even keel I think. I don't want her (or me) to become fixated on this illness to the point where it takes over and interferes with our everyday lives indefinitely.

I feel that all things considered she has been an extremely lucky little girl. Her first round of IVIG was on the 5th day and she had a partial response. The 2nd round on the 11th day made no difference. In fact if anything, she got worse as she suffered from Aseptic meningitis due to the IVIG and then a few days after that she got really bad arthritis. Her CRP was 300 on the 5th day and only got down to 122 with the IVIG before it crept back up to the 200 mark again. It took 5 consecutive days of IV methylprednisolone and an extra days worth a week later to get her CRP down to 4 and her blood results to come back in the realms of normality. She had 2 echos, an abdominal ultrasound and a chest x-ray during her month stay in hospital and fortunately they found no heart complications or aneurysms at any time. We had another echo last week on the 24th which is just over 6 weeks since her first symptoms and that also came back clear. I still can't quite believe that she seems to have escaped any heart complications when she was so ill for so long...especially as the inflammation and her temperature was off the scale for over 21 days all told.

I am incredibly thankful that we live in the UK and have our National Health Service. The Paediatric Cardiologist has made 2 more appointments for us for Heart Echos over the next 6 months and have asked me to keep her on aspirin for that period of time as they also believe she has been very fortunate and are keeping a very close eye on her and erring on the side of caution. I am just trying to keep a positive mental attitude towards the whole experience and hope that we can put it all behind us in a few months time.

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Re: Acute Kawasaki disease 4 yr

Post by liquidambar » Mon Aug 29, 2011 8:49 am

Toffeegirl: I am glad that the UK medical worked so well for you. Canada seems to be happy with their toos.
I love hearing about your experiences and thankyou for sharing them.

But back to what Arnob 123 said about lipid metabolism. It is mitrochondrial cytopathies - it is the same thing and yes it is stated under Prognosis on Kawasakis disease on wikiepedia. This may be the next big hurtle to face in getting over with this disease.

http://en.wikipedia.org/wiki/Kawasaki_disease

Under prognosis;

"There is also evidence that Kawasaki disease produces altered lipid metabolism that persists beyond clinical resolution of the disease"

which leads us in a round about way back to vaccinations.
Hannah Poling is the daughter of a neurologist, Jon Poling. Not just any neurologist, he also worked for the FDA. She just this year won the largest settlement from the vaccine compensation court, ever! It helps to have friends in high places like Jon Poling to testifiy on your behalf and have solid science that no one can dispute.
It also ended up on the news as one reporte said
" Fishy wording was used by the vaccine compensation court" according to one reporter who reported on the story.
"Hannah had a mitrochondrial disorder that vaccines made worse; Vaccines did not cause Hannah's autism but it made her autism worse"
However her father really believes vaccines caused her mitrochondrial disorder - she was perfectly normal before she had her vaccines.

Also I found this; http://www.ncbi.nlm.nih.gov/pubmed/18166009

But there are tons of sites about mitochonrial cytopathy and myopthies on the internet.
The specific one that affected our children is called oxidation phosphorylation on complexes I and III.
Same as Hannah Poling.

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Re: Acute Kawasaki disease 4 yr

Post by Nancy » Mon Aug 29, 2011 12:55 pm

@Liquidambar...the possibility of "altered lipid metabolism" after KD refers ONLY to the possibility of having a greater risk of *high cholesterol*
after KD and the potential for earlier adult onset coronary artery disease...which is why pedi cardiologists check cholesterol levels after KD..

http://circ.ahajournals.org/content/110/17/2747.full

.it is NOT about mitochondrial issues.

PLEASE stop mixing issues and confusing new parents :)

nancy

liquidambar
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Re: Acute Kawasaki disease 4 yr

Post by liquidambar » Mon Aug 29, 2011 2:04 pm

Why, Thank You, Nancy ; for the straight forward message, that you know it all, and understand everything were as I, dumb Liquidambar just don't get it.

Oh, but I do get it - I have had plenty of time to get it. So, I wonder what has made you so confused? Is it because you have an oppositional disorder or blind or "something that is influenced by other things related to the purse", I can't figure out" ,

I am not the only one that has had my family ending up like this .
Leg aches, no immunity to fightoff strep and yeast, GI troubles and on and on and on.

Nancy were you really, really, really lucky enough to side step this problem? Oh my, what a lucky girl you are.


Your link - I have skimmed it - and will look at it more. It says: Plasma lipids are markedly altered in acute Kawasaki disease, with depressed plasma cholesterol, high-density lipoprotein (HDL), and apolipoprotein AI.75

There is nothing about lipid metabolism in your link.

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Re: Acute Kawasaki disease 4 yr

Post by Joe » Tue Aug 30, 2011 8:03 am

Locking this thread as the discussion appears to be finished.

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