Bobby's atypical case at 3 months old

Personal stories of individuals and families affected by Kawasaki disease
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Al-n-Charl
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Bobby's atypical case at 3 months old

Post by Al-n-Charl » Sat Mar 03, 2007 6:53 pm

Bobby started with a fever on Thanksgiving day. The ER doctor said it was an ear infection and sent us home with antibiotics. The next day he had a small amount of blood in his diaper, the doctor said it was probably just a urinary tract infection and that the antibiotics would take care of it. The 3rd day he started with the rash. Our family physician thought it was a reaction to the antibiotic and changed him to a different one. The next day his abdomen started to become enlarged and the doctor said it was reflux or a continued reaction to his formula and prescribed zantac. (he had a sensitivity to his formula at 2 months old) My wife and I started to think it was unusual for this many different problems to arise at the same time and began to suspect that there was more to it especially when Bobby's abdomen swelled to where his bellybutton popped out. The following day Bobby was seen by a different physician who had him admitted to our local hospital. His fever had been as high as 103.5 for the last 6 days.
The doctor at the hospital thought he had Kawasaki right away, however she performed tests to rule out Menangitis and a urinary tract infection that had turned septic. We were then transferred to Children's Hospital in Boston. Children's sent a transfer team of 3 with the biggest ambulance you have ever seen that even had it's own lab on board. This is when we realized just how sick Bobby was. The first 24 hours a Childrens were a blur. Bobby was seen by teams from cardiology, infectious diseases, rhumatology and oncology. Finally they determined that it was in fact Kawasaki.
Bobby spent 32 days at Children's Hospital. He received 3 treatments of IVIG which didn't bring his fever down, 3 treatments of remicade for his joints and steroid treatments to try to keep his arteries from expanding further than they already had. He received echocardiograms daily. The steroids were particularly hard on Bobbys intestines. Bobby was vomiting blood and had blood in his stool. The bleeding got so bad at one point that he received 3 transfusions within 24 hours and the doctors decided that the bleeding was now a greater threat than the possibility of blood clots in his coronary arteries. They stopped treating Bobby with the anticoagulants to allow his intestines to heal. The bleeding finally stopped, but at the cost of 5 clots forming in his coronary arteries.
Bobby was then given TPA to break up the clots. The TPA finally disolved the clots enough that they were no longer an imminent threat, but also disolved every other clot in his body (but fortunately the GI bleeding didn't come back). Everywhere Bobby had received an injection or had blood drawn became a big angry bruise. Particularly on his left arm which became so swollen and bruised that he had to be seen by a specialist to make sure that the partial loss of circulation in his hand would not cause permanent damage. Bobby's Coronary arteries range from 6.5mm and 8.5 mm. He was released on December 23rd only to be readmitted on December 26 when a followup echocardiogram found an increase in one of the clots. Bobby stayed another 6 days untill the clots were small enough for him to come home. Bobby is now 6 months old and the clots are gone. Bobby now takes 6 prescriptions (down from 7) of anticoagulants, blood thinners, betablockers and stomach medicines. He has to eat special formula to allow additional healing in his intestines.
Bobby looks and acts like a typical 6 month old and he is making up for lost time in the growing department. He is already over 20 lbs and is 28 inches long. He is wearing 12-18 month old clothing! We don't know the long term prognosis or how long he will require the anticoagulants. We are just taking it as it comes. The biggest problem now is fighting the health insurance company. Bobby's bills are approaching $220,000 and we spend another $1000 a month on co-pays for office visits and prescriptions and compounding of prescriptions that the insurance company doesn't want to pay for. We will beat them in the long run, but it is another aggrivation that we just don't need right now. But it would be worth ten times the price to have Bobby healthy.

Al-n-Charl
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Carpet Cleaning

Post by Al-n-Charl » Sat Mar 03, 2007 7:00 pm

For those of you who are wondering, Bobby was NOT exposed to carpet cleaning.

Al

jamiesmom
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Post by jamiesmom » Sat Mar 03, 2007 7:27 pm

hi my 22 month old son jamie had all the classic signs of kd
intially we thought it was chicken pox , it was going around,
on day 3 after watching him get worse we called a doctor to the house,one look at jamie and the first thing he said was get him straight down to er its kawasaki,in hospital for four days gave jamie fluids and antibiotics,sent him home saying it was viral,its now 4 weeks on and jamies hands and feet are peeling badly,i feel like we were just pushed aside,im worried for my son and after finding this site with all the information i am convinced he has kd,also red eyes sensitive to light,i live in dublin ireland where this disease is not v common,what should i do next ?

Al-n-Charl
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jamiesmom

Post by Al-n-Charl » Sat Mar 03, 2007 8:13 pm

jamiesmom......I'm not sure if you received the "U2U" message we sent. You need to get your son to the doctor and get an echogardiogram to determine if his coronary arteries are involved! Do not take no for an answer! You are right to be concerned. Act quickly to avoid potential complications! If you are wrong and it isn't Kawasaki you have lost nothing, but if it is Kawasaki your son needs immediate care! I tried to e-mail you, but there is a problem with your e-mail address. E-mail me with a good e-mail address and I will send you the e-mail address for Jane Newburger at Children's Hospital in Boston, She is one of the leading experts in Kawasaki Disease you can have your doctor contact her.

Let us know what happens!

Allan and Charlene

Momcat
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Post by Momcat » Sat Mar 03, 2007 10:51 pm

Thanks so much for posting about Bobby. Our daughter was 6 years old when she got KD and aneurysms. I've often wondered how these little ones can tolerate so much when so many of them are just babies when they get KD. You will be dealing with those bruises for a long, long time most likely and once he starts running around you will have more and more! Believe me, we know about bruises. Keep up the fight with the insurance-ours paid, including an airflight bill of $17,000.00. I can't imagine how people deal with these bills without insurance, especially with kids like ours that end up in the hospital for so long. There are a few kids that are resistant to the IVIG and that is when the steroids work it seems. The Remicade is kind of experimental and they used that on our daughter as well--they thought it would stop the KD (not for the joints-they did trials with it in San Diego a few years ago with KD-maybe they stil are). I think steroids should be used immediately if the child is IVIG resistant. Please let us know what the followup echoes show. I am hoping Bobby gets regression of the aneurysms in time. I am wondering why he is on beta-blockers, does he have a narrowed area that they are worried about? You were blessed that the clots did no damage. Hang in there you have been through a lot and you have one tough little guy there!

Raven
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Post by Raven » Sat Mar 03, 2007 11:12 pm

I hope Bobby continues to do well, and I hope he continues to get better and better. It must be so hard when you have a little baby with KD. I mean, it's hard at any age but my son was 4 and at least he could understand a little bit of how we were there to help him get well.

I don't believe the carpet cleaning theory, and I believe for the most part it's pretty much not even disproved. The only link I think it might have is that when you clean your carpet you release some virus or bacteria, or mold into the air that triggers the KD. We had cleaned our carpets ourselvesa few weeks before Samuel got sick but also around that time his brother had strep throat, he had his 4 year old MMR shot, and he'd had his teeth cleaned. So I think it was immune system overdrive. It is so frustrating not to know what caused it.

JAMIESMOM: I agree, you need to have an echo done. When he was in the hospital did they do bloodwork? If so, you should request a copy of it from your doctor. My friend is in the same predicament. Her daughter was sick and had all the symptoms of KD. (blood shot red eyes, fever of 105, rash, strawberry tongue, dry cracked mouth, and even peeling) They dianosed her with Herpes Simplex virus and sent her home. But since then she has developed a heart murmur and severe asthma. She is trying to get the dr to consider that she could have had KD and do an echo.
Let us know what you find out!!

Al-n-Charl
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beta blockers

Post by Al-n-Charl » Sun Mar 04, 2007 8:59 am

Momcat.....The doctors said that the beta blockers would reduce the workload on Bobby's heart. I don't know how or why. They say that they will probably take him off of them this week. As far as the carpet thing goes, my father cleaned carpets for a lving when I was young, and I worked with him for years. I'm sure that I was exposed at least 20 times as much growing up than anyone else, but I never had any problems. Just to be sure, I tore up all the carpets in the house while Bobby was in the hospital. I found decent hardwood floors under 2 of them!

jamiesmom
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Post by jamiesmom » Mon Mar 05, 2007 7:43 am

[quote][i]Originally posted by Al-n-Charl[/i]
Momcat.....The doctors said that the beta blockers would reduce the workload on Bobby's heart. I don't know how or why. They say that they will probably take him off of them this week. As far as the carpet thing goes, my father cleaned carpets for a lving when I was young, and I worked with him for years. I'm sure that I was exposed at least 20 times as much growing up than anyone else, but I never had any problems. Just to be sure, I tore up all the carpets in the house while Bobby was in the hospital. I found decent hardwood floors under 2 of them! [/quote]

jamiesmom
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Post by jamiesmom » Mon Mar 05, 2007 8:44 am

thankyou for all your advise on jamie,after ringing around i have aranged for jamie to have an echo done tomorrow tues 6/3/07,if the echo is ok does that mean he didnt have kd?will i never know?The doctors in hosp said his bloodworks were ok,im confused how do i get a firm diagnoses?this disease is so worrying.THANK YOU again for your advice i will let u know how i get on with the echo,hope your little one is getting better.

crossroads-chantal
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Post by crossroads-chantal » Sun Mar 18, 2007 10:30 pm

jamiesmom: If your child is still sick you can try bringing you child to an "eye specialist". This is important to help diagnose KD if the ECG (echo) comes back negative. My 4 month old had it done and this was how we found out 100% for sure. Blood vessels behind the eye (in the back viewed through the pupil or iris or something to this fact) the arteries will be swollen ( they call it something else). They just won't look right. I also found out that My son will need to see an Eye specialist before he turns 3 to make sure there wasn't permanent damage done to his vision. Hope this help you out a little.

miami
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Post by miami » Wed Mar 21, 2007 12:42 pm

Al-n-Charl-
Bobby seems like such a tough little boy!! I am curious, did you have to give him the Lovenox shots since he was so little? What anti-coagulants are you on now?
My little boy was diagnosed at 7 weeks and is on the Lovenox now, but we are being told that he will get off the Lovenox onto Coumadin or Plavix when he is 5 months old. From what I understand, there isn't a lot of research on giving Coumadin or Plavix to an infant, so I'm curious as to what you are using.
Thanks and I'm very happy to hear the Bobby is on the up and up!

Al-n-Charl
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Lovenox

Post by Al-n-Charl » Wed Mar 21, 2007 5:50 pm

Miami
Bobby gets Lovenox twice a day. It is injected through a subcutaneous port. He also takes Plavix once a day. They tell us that he may eventually end up on Coumadin. He also takes asprin, Protonix and Propranolol. He is now 7 months old and our next appointment isn't untill April and they have no immediate plans to change his medication because he is doing so well with it.

Al-N-Charl

miami
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Post by miami » Mon Mar 26, 2007 2:57 pm

Al-N-Charl-
Thanks for the info. So your doctor has not told you that Lovenox is "temporary"? From what I understand, it is temporary. But I don't know if it's because they just don't prefer to give it long term, since it is unpleasant to give the injections OR if there is a real medical reason to give it temporarily. We inject our son b/c the subcutaneous port just didn't work out for us.
I guess when May rolls around, if he still has the anuerysms, we are going to move to different medication. Please keep me posted on how your son is doing.
Thanks.

mumof2
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Post by mumof2 » Tue Mar 27, 2007 5:33 am

[quote][i]Originally posted by Momcat[/i]
Thanks so much for posting about Bobby. Our daughter was 6 years old when she got KD and aneurysms. I've often wondered how these little ones can tolerate so much when so many of them are just babies when they get KD. You will be dealing with those bruises for a long, long time most likely and once he starts running around you will have more and more! Believe me, we know about bruises. Keep up the fight with the insurance-ours paid, including an airflight bill of $17,000.00. I can't imagine how people deal with these bills without insurance, especially with kids like ours that end up in the hospital for so long. There are a few kids that are resistant to the IVIG and that is when the steroids work it seems. The Remicade is kind of experimental and they used that on our daughter as well--they thought it would stop the KD (not for the joints-they did trials with it in San Diego a few years ago with KD-maybe they stil are). I think steroids should be used immediately if the child is IVIG resistant. Please let us know what the followup echoes show. I am hoping Bobby gets regression of the aneurysms in time. I am wondering why he is on beta-blockers, does he have a narrowed area that they are worried about? You were blessed that the clots did no damage. Hang in there you have been through a lot and you have one tough little guy there! [/quote]
i don't know how you guys do it, not many people in australia have private health cover, we dont need it. all our hospital stays and tests and stuff are free. we only need private health cover if we want to stay in private hospitals. but who want 24 room service and silk sheets when you sick, i really dont think anyone cares as long as they get better.
and the waiting lists for private patients are as long as public patients anyway. lol

miami
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Post by miami » Sun Apr 22, 2007 10:53 pm

Al-n-Charl-
How is Bobby doing? Did you take him in during the month of April? Any regression on the size of the anuerysms?
Please keep us posted.
Thanks,
Miami

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