Beta Blockers

General discussion regarding Kawasaki disease

Beta Blockers

Postby Momcat » Thu Jun 18, 2009 8:05 pm

Do you any of you have kids on Beta Blockers or are you an adult that had KD and now take them? We had a pediatric cardiologist (in Seattle at the KD event) suggest that we should have Paige on them because her aneurysms have expanded. I haven't discussed it with our ped. cardiologist. He thought when her heart is under stress that the blood flow has too much pressure in the aneurysms and then they expand. Beta Blockers apparently lower the heart rate at times (??) and I guess that would mean less stress on the coronaries. I'm wondering if there are side effects?? Anyone have any thoughts on this?
Thanks,
Sandy
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Re: Beta Blockers

Postby award » Thu Jun 18, 2009 8:46 pm

Sandy,

I discussed this today in my email after discussing the Seattle event but if anyone else would like to hear my thoughts & experience with beta blockers, please let me know and I will copy & paste the portion that is specific to BB's, otherwise I won't bother to reinvent the wheel.

April
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Re: Beta Blockers

Postby Momcat » Fri Jun 19, 2009 1:20 am

Thanks April, I got your email. It was VERY informative and I will email you again soon. I am fishing for parents who might have the same thing going on with their KD kids....although I might have a better response at a pediatric cardiology forum than here.
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Re: Beta Blockers

Postby PollyS » Fri Jun 19, 2009 3:22 pm

Sandy,

My son Jack (age 10) has been on the beta blocker atenolol (as well as the ace inhibitor lisinopril, and aspirin) for several years. He was diagnosed with KD when he was 2 yrs 10 mos old. Although his aneurysms have regressed, he had 2 heart attacks within 2 months of diagnosis and his cardiologists in both Denver and Boston have recommended the beta blocker. The drugs seem to slow him down (e.g., he can't run as fast) and he tires more easily than other kids his age, but we haven't really observed any mood swings or depression.

Polly

P.S. April, I'd really appreciate your posting or sending me your information on beta blockers.
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Re: Beta Blockers

Postby Momcat » Sat Jun 20, 2009 2:42 am

Polly,
Thanks for that information, this is what I wondered about, the tiredness issue. I can't stand it that there is another medication indicated, but I also want to be a good parent and to do the right thing.
Can you tell me how your sons heart is now after having 2 heart attacks when he was so little?? Was there muscle damage? I am interested to know what size aneurysms he had before they regressed and how long did it take them to regress? I'm curious as to why they wanted the Beta Blockers now.....I am assuming that he is also on anticoags also.
OK that's a lot of questions. Perhaps you could post his story on here somewhere, or have you before?? Ooops, that is another question.....
Sandy
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Re: Beta Blockers

Postby PollyS » Sat Jun 20, 2009 10:04 pm

Sandy,

Jack had moderate-sized aneurysms in his left anterior descending and right coronary arteries, and a couple giant aneurysms in his circumflex coronary artery. (I no longer recall the maximum size of his aneurysms and don't have his medical reports at hand). Although he was on Coumadin and had just started heparin injections, his circumflex coronary artery became occluded, which led to his heart attack. His aneurysms regressed, and his angiogram 2 years post-KD (in 2004) showed only mild dilation of his coronary arteries and no aneurysms or signs of stenosis. He was originally on more meds, including Plavix and Coumadin, but was taken off these drugs after his aneurysms regressed. His cardiologist in Boston recommended putting Jack on the beta blocker in 2004 and he’s been on it since. Although he seems to tire more easily during sports and PE than his more athletic friends, it’s generally something that most of his teachers and coaches don’t readily notice or comment on.

It’s my understanding that about 1/3 of Jack’s left ventricle was damaged from the heart attack; his left ventricular ejection fraction when last measured was around 48%. We’ve been very fortunate in that he’s had no further episodes in the last 7 years. We live in Denver and Jack sees a local cardiologist for his semi-annual check-up in the winter and then usually has a cardio work-up (including a stress test) at Boston Children’s in the summer. His cardiologist in Denver tends to be less conservative (in terms of meds, exercise restrictions) than his cardiologist in Boston, but generally they agree on the same course of treatments. At Jack’s semi-annual check up this year, they were concerned that his heart has grown more than appropriate for his age, so he’ll be having a stress MRI in Boston this summer (and I’m keeping my fingers crossed that it will turn out well).

Polly
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Re: Beta Blockers

Postby Momcat » Sun Jun 21, 2009 1:55 am

Polly,
Wow, you have really been through a battle with the devastation of KD. You must have been going crazy when he was only 2 to 3 years old. You are one special mom and Jack must really be quite a trooper. That is major heart damage....left ventricle no less....that is the part of the heart they always tell us to watch out for if something goes wrong. We've been told that because of the size of our daughters aneurysms, that she could end up with left ventricle problems in the future. So far so good, she is due for another angiogram or MRI again though. Her doctor wants to do another stress echo this year, but I don't think they show as much as the other tests.

Having a child with major heart issues is like walking around with a time bomb it seems.... How does Jack handle all of this? If he is like my 12 year old daughter she just tolerates the doctors now. She doesn't like everyone to know about her heart condition, her friends are very supportive. Thanks so much for filling us in on some details. PLEASE stay in touch here, you could give valuable information to those of us who struggle to understand so many aspects of JD. I want to hear about the MRI too. Does Jack have restrictions with sports?
Thanks!
Sandy
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Re: Beta Blockers

Postby sydneli » Sun Jun 21, 2009 8:12 pm

My son, Jordan, had KD almost 2 years ago at age 7 and was started on beta blockers right after he was diagnosed with the giant aneurysms. He started on atenolol first, but developed terrible hives after a couple weeks. He was changed to carvedilol, and has been on it ever since. It might slow him down a little in PE, but the cardiologist never gave Jordan any restrictions on sports, except for contact sports because of his coumadin. At his last checkup, his aneurysms had regressed some, and they extended his checkups to yearly instead of every 6 months.
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Re: Beta Blockers

Postby Momcat » Mon Jun 22, 2009 1:01 am

Thanks, that is good to know that the effect Beta Blockers only seem to be evident during PE....
I am wondering what shape the aneurysms are in the kids that have these giant aneurysms (or even moderate sized).....Paige has one that is sort of sausage shaped and the other that is a bell shaped (or used to be--it was 2 aneurysms that became one). One of the cardiologists at the Seattle meeting mentioned something about the shape of the aneurysms and how they indicate ones that would stenose or not. I know the "string of pearls" is the one that is the worst case scenario. Someone once told us that these aneurysms can change shape....do any of you know about this? I know that small and sometimes moderate ones can regress, but can a big fat aneurysm turn into a "string of pearls"??
Sydnell, thanks for that information......interesting that with giant aneurysm and regression (which means active change) that the cardiologist changed him to once a year checks. However, it is like they tell us......just WHAT are they going to do anyway unless there is an evident blockage?? We can do all the tests we want, but unless the blockage is there, then how many tests do we need?
I am thinking more and more now that Paige should be on a beta blocker......
Sandy
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Re: Beta Blockers

Postby PollyS » Mon Jun 22, 2009 11:24 pm

Sandy,

Jack was unlucky in that his KD was atypical and, despite being hospitalized on day 2 and diagnosed on day 3, he didn’t respond to treatment, including 3 rounds of IVIG. However, post KD and his heart attacks, he has done very well and, to look at him and watch him, you’d never know he’d been critically ill and has a heart condition. The first year after his illness, we walked on eggshells and checked on him several times a night. Now, life is relatively ‘normal,’ though I get anxious every time he runs a fever, has stomach pains, or goes for his cardio check up. His MRI and stress test are scheduled for the first week of August, and I’ll let you know how things go.

Jack enjoys sports. He hasn’t been on Coumadin since his aneurysms regressed, and has played on a recreational soccer team for the last few years. With the playing field getting bigger and the game more athletic and competitive for older age groups, we recently decided, upon his cardiologist’s advice, that he should hang up his cleats. His cardiologist has recommended against competitive sports or rough/contact sports, so Jack is now trying baseball and a little recreational tennis. He skis a couple times each winter, but nothing too challenging.

How large are your daughter’s aneurysms now? Is there a chance they may regress in the future?

Polly
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Re: Beta Blockers

Postby Momcat » Tue Jun 23, 2009 7:41 am

Polly,
In some ways I think it might be easier to have a girl than a boy with these huge aneurysms, at least during the teen years/early adulthood. Paige hasn't complained too much about missing sports, we've veered her more into animals and she raises a 4H pig every year (last year had a sow with a litter)--thankfully we are on 8 acres and they are WAY down on the property. They are fun, but they stink! She has horses also and even though the cardiologists aren't thrilled that she rides, we let her. She wears a helmet. She's been bucked off a couple of times, but that just meant a major bloody nose and she saw that she was fine--hopefully nothing worse would happen.
I read an article mentioning a change on a big aneurysm on an echo might indicate a type of regression---apparently they can read the outside or inside measurement of the lumen and regression can "fool" the echo. Her aneurysms haven't ever gotten smaller-they keep getting bigger. Last year the largest went from 14 to 18 mm in the last year and both aneurysms are centimeters long. The other has ranged from 9 to 11 mm depending on how they read it. One in the LCDA and the other in the RCA. Personally, I don't like change either way in an aneurysm because it means something is happening in there and I know that aneurysms can regress, but then they can continue to change and might stenose. If I think about it too much I just want to crawl in bed and pull the covers over my head!!
Jack sounds a lot like Paige-it is hard to know there is damage in there by the way she acts, although Paige's heart hasn't been effected yet ( and I hope isn't, but the future looks kind of scary ) . I found the same thing true with heart patient kids we were with in California that were all together for a week. Many had major heart damage and major heart surgeries. Most of the parents were saying the same thing--it is hard to tell by looking at them. However, at the end of some VERY long days, these kids were totally wiped out. Anyway, since Paige's aneurysms are so huge, her reserve flow is about 1/4 that of normal, so I think it does slow her down when she pushes too hard and especially too long. Now with the aneurysms growing and the considerations of beta blockers I wonder if that will make her even more prone to tiredness. Does Jack take fish oil? Paige does but I don't know what the cardiologists really think about it. I think it is great that you let Jack do so many activities. That encourages me. Paige's fevers always seem to run high and long. I found it strange that she had these enlargements in her aneurysms after a long course of the flu last year....made me wonder if the fever had something to do with it.
You guys help me feel more "normal" as a KD mom of a kid with big CAs, thanks for your posts! This board helps me to stay grounded.....even though I still want it all to go away!
Sandy
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Re: Beta Blockers

Postby Al-n-Charl » Wed Jun 24, 2009 2:48 pm

Sandy:

Bobby was on propranolol (beta blocker) while still hospitalized for KD and was finally discontinued January 2007 when the cadio catherization showed smooth interior arterial walls with a tappered shape. While he was on the beta blocker his hands and feet were always cold and clammy. Because he was so young I don't know if it affected his activity level in any way.

Poly:

Is it the beta blocker or the heart damage that is causing your son to tire easily?

It sounds like our son's have had a similar KD experience. Bobby didn't suffer any heart attacks but was resistant to the IVIG treatments and had secondary complications. If you need moral support when you visit Children's Hospital, Boston this summer....call me. I live in Western Mass, about 2 hours away from Boston. Sometimes just having someone with you, that knows what your family has already been though, helps.

Charlene
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Re: Beta Blockers

Postby Gemmasmom » Sun Jun 28, 2009 10:25 pm

Sandy,
My daughter Gemma (21 months) has been on propranolol (Beta blocker) since December 2008 when they did her CT Scan and couldn't see any flow in her right coronary artery. She has since been on them 3 times a day and will probably continue to be for years. Both her Houston cardiologist and Dr. Newburger thought it would be best to continue her on the beta-blocker for an indefinite time period. I find the biggest side effect to be the syrup on her teeth. She is battling a lot of tooth decay from the constant sticky meds I force in her mouth three times a day and that propranolol is the worst. I will be so happy when she is able to swallow pills.

I just recently asked her cardiologist about long term use of beta blockers and their use in her age group. She didn't seem to think they would harm her in anyway and the most common side effects she hears of are depression and dreaming..unfortunately my 21 month old isn't quite able to express if she experiences these side effects.

I hope this is helpful!

Leslie
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Re: Beta Blockers

Postby award » Wed Jul 08, 2009 8:50 pm

Sandy,
I asked that question about aneurysms changing and apparently they do not change to string of pearls later--they either have that initially or don't develop that distribution at all. I saw a 4 year old boy with string of pearls CAA in both the LAD AND RCA so it was a bummer for him but his mother really didn't understand the severity of that and often missed his Plavix--YIKES!! The CAA's can regress and then re-enlarge later, like a teenage boy I saw there, but fortunately that isn't common and the general shape doesn't change that drastically, just the tapering or narrowing seems to occur.

April
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Re: Beta Blockers

Postby Momcat » Fri Jul 10, 2009 11:08 pm

Hi April,
Interesting that you were told that about the string of pearls. I will have to do some more investigating. One of Paige's cardiologists told us that indeed her aneurysms could become that way ..... Her biggest aneurysm started out as 2 aneurysms and over time became this colossal thing. The cardiologist said that where the separation used to separate the two could be a source of problems later. He said that is an area that could definitely narrow first if stenosis started. That is when he told us about the string of pearls.....and that these aneurysms could become that way if they start to have endothelial encroachment. Now I am wondering if it is true or not. Who did you ask? We've always known that the shape of the aneurysms have different prognosis and that that the ones that look like a pearl necklace are the worst because generally clots can form in there more easily and stenosis could be deadlier. The worst part of any aneurysm is the distal portion. The part where it narrows..heading toward the heart..the "sheer factor" plays a role in those areas and that is where stenosis can occur most frequently. I can see that a string of pearls would be a lot more hazardous than large tapering aneurysms, but a clot is a clot....hopefully we won't have to deal with that... EVER. Paige has a bell shaped aneurysm (because of two giant ones that became one over time) and one that is long and saccular.....
As far as them not changing I will never believe anyone that says they don't. If one of Paige's went from 9mm initially and then to 14mm in a couple of years and in the last year alone from 14 to 18mm ....I know they can expand. I've been told that never happens in KD by pediatric cardiologists. Well, guess what, now they know they can and do, plus there are reports of other KD patients who have had expanding aneurysms--it is rare, but getting KD is rare also.... so who knows? If it weren't so rare, maybe we would see a lot more of this. We've been told more than once that she must have something else too.... Well, she doesn't. It would be interesting to hear what kind of shapes some of the parents have seen in the aneurysms of kids that have regression. They probably taper and modify to fit the blood flow. I've also read reports of kids that had regression and later had blockages within the areas that regress.....so if there can be a pinched area with those, then I would think that nothing is predicatable with KD aneurysms..... Stenosis seems random at times.
Sometimes I feel like the more I know about KD and the long term issues, the less I really do know. I wish I knew more about what is going on inside those arteries.
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