3 month old IVIG resistant

Personal stories of individuals and families affected by Kawasaki disease
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shelleyb
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3 month old IVIG resistant

Post by shelleyb » Thu Mar 07, 2013 10:14 am

Here is our story. My daughter is 3 months old, she developed a high fever a couple of weeks ago as well as vomiting. We went to our local ER, they did bloodwork and a chest x-ray and gave her a shot of antibiotics and sent us home. Later that day we were back because she couldn't keep anything in her tummy and her fever was still high. We were there until the middle of the night, when they sent us home again with an appointment for a pediatric clinic at another hospital. By that time she was pretty dehydrated (and I am still shocked and furious that they sent us home in the middle of the night with no treatment, but that's a whole other topic). The other hospital admitted us almost immediately, and she started receiving IV fluids. By this time she had developed an all over rash, and her eyes were red and swollen. Over the next 2 days her fever kept coming back, and she was still unable to eat. In spite of all the IV fluids she was not re hydrating well and producing almost no urine. On our 3rd day in hospital I noticed her tummy was very distended and seemed sore, and she was increasingly lethargic and unresponsive. Another chest x-ray, and abdominal ultrasound was ordered, and we were told she had a lot of fluid in her abdomen and that her kidneys were inflamed. The pediatrician on call transferred us to Sick Kids Hospital that night.
The next day was the first time anyone mentioned Kawasaki as a possibility. By this time not only was her tummy distended, but she had full body edema. She had actually gained over 3 lb in fluid. She received her 1st course of IVIG that night, and her fever broke and stayed down for 24 hours. We were discharged and sent home with follow up instructions. A few hours after going home her fever shot back up again. We went back in to the ER at Sick Kids, and were told that her hemoglobin was very low, which can be a result of IVIG. They tested her several times, and concluded that her low hemoglobin was not a result of the IVIG, so she would receive another dose, but first she needed a blood transfusion. The following night she had her 2nd IVIG. By this time the edema was so bad that she actually felt as heavy as a 5 month old, and her skin was so tight and hard it seemed like it would split open from the pressure.
The day after IVIG a cardiologist came to see her and was quite concerned about her heart, she had a gallop rhythm, and her heart rate had been hovering between 160-200+ for several days. She was given a diuretic to remove the excess fluid, which worked in matter of a couple of hours, and we were told that she would be receiving steroid treatment (her fever had climbed yet again), that she was not eligible for another IVIG because they didn't want a large volume of fluids going in via IV(it was only the following day that anyone actually told us she had been going into heart failure). So over the next 3 nights she received steroids, her fever almost spiked again, but didn't quite reach "fever" status.
Now we are home, and fever free, but I've noticed that she seems still irritable and like some things hurt her, so I am wondering if she is having joint pain.
I would love to hear from anyone else with a similar experience what to expect in the next weeks/months/years

TrinityC
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Re: 3 month old IVIG resistant

Post by TrinityC » Thu Mar 07, 2013 11:59 pm

Hey,

I am so sorry you are having to go through this. Do not feel bad about calling your pediatrician, if you have a good one (even if you don't) the pediatrician is your friend right now. Call them, ask them whats normal and whats not, ask them what could be going on, ask them if there is any other scenario that would cause the same symptoms being experienced now, get them thinking and keep them close. Hospitals don't know your baby like your pediatrician does.

That said, my 2 year old had KD recently. It was scary but I couldn't imagine having the complications you did and with a 3 month old. The first symptoms I explained away. Initially he would tell me his arms hurt when I hugged him or his legs hurt when I put his pants on, etc. I thought he was just being two and figuring out the meaning of the word...I was so wrong. Next came the fever, waaaayyyy too high-called the doc they said give it a day or two and whatever virus should run its course since he had no other symptoms. It wouldn't break even with meds. Next came the eyes, the red red eyes and lips and the rash in his diaper area, and peeling fingers...took him to the doc and had to see a different pediatrician. Doc said, no big deal just a virus of some sort and it will pass in the next few days just keep him comfortable. Few days pass and he's just getting worse (maybe 2-3 days??) take him back, get sent immediately to the hospital by the second doc we saw. Diagnosed with KD and IVIG started. He didn't have any lasting issues but we were hospitalized for a week and on high dose meds for 6 weeks and followed up with cardiologist.

You should have followed up with a cardiologist by now. You should follow up again either every few months, 6 months, or year until they say otherwise. I don't know that your baby should still hurt to the touch, by the time we left the hospital, my son didn't.

I know I don't have much to offer-our situations are so very different- but I wanted to let you know, you are very much not alone in this.

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MikesMom
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Re: 3 month old IVIG resistant

Post by MikesMom » Tue Mar 12, 2013 8:45 am

Keep us posted on your follow up echos, and you are not alone! Our thoughts are with you :)
Another Sick Kids mom (your in great hands)
Pauline
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Alan
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Re: 3 month old IVIG resistant

Post by Alan » Tue Mar 12, 2013 10:26 am

Shelley,

Your story sounds very similiar to my sons. He was 6 weeks old when he had back in 2001. He was IVIG resistant and received 4 rounds IVIG and 2 of steriods before his fever came down to an acceptable level. He also went into heart failure because of fluid build up and had to be given a dieuretic. It certainly a very different case when your child cannot talk and tell you if there is something wrong. Nobody knows your child better than you, so use your instincts. Kids will be irritable after KD, it takes a while for them to get back to "normal". You didn't mention anything about having a cardiac echo, is there any abnormalities with her coronary arteries?


Alan

shelleyb
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Re: 3 month old IVIG resistant

Post by shelleyb » Wed Mar 20, 2013 4:06 pm

Alan, I would love to know how your child is now, and what issues you may have had in the last several years.
We did have 2 echos done in hospital before being discharged, and have another in the next couple of weeks.

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Re: 3 month old IVIG resistant

Post by Alan » Mon Mar 25, 2013 9:27 am

Shelley,

My son is 11 years post KD now. He had aneurysms on 3 of his coronary arteries after having KD. It took about 9 years for them to come back to what is considered "normal' size. He was on aspirin until he was 7. He still sees the cardiologist every year for an EKG and cardiac echo and he has had 2 stress tests to make sure everything is still looking good. I wouldn't say he has any other lasting effects from KD, although there are plenty of parents on this forum that can speak to other issues their children have had. Every child is different and has different experiences with KD. We try to make sure he eats right and although his cardioligist doesn't recommend contact sports, we make sure he stays active playing soccer, basketball, swimming and other activites so he keeps fit. He lives a pretty normal life, although we do always keep his bout with KD in mind. My wife and I are very active with the KD Foundation and have made KD awareness and fund raising a priority.

I would be happy to answer any other questions as best as I can.

Alan

noestian
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Re: 3 month old IVIG resistant

Post by noestian » Fri Mar 29, 2013 12:23 am

Hi Shelley,

A little more than a year ago, my daughter who was 2 was diagnosed with KD. With had a similar story she was given 3 rounds of IVIG over the course of a month and half and her fever went down for a few days and then back up, her inflammation levels were always elevated. Three months after been diagnosed she got hospitalized for the fourth time and got new treatment of steroids and she started improving 24 hours after that. She's been good ever since. Her first echo detected a bigger than normal coronary but no aneurysms. After the last treatment her heart took a few more months to go back to normal, and she stay with aspirin for a year.

shelleyb
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Re: 3 month old IVIG resistant

Post by shelleyb » Tue Apr 16, 2013 8:56 am

We had our 6 week follow up echo last week and the results were great, we are off daily aspirin and our next echo is in a year. We also had follow up checks on her kidneys, which had been involved, and protein in her urine. Her kidneys are good as well and we have to re check in three months, but so far so good. As well she has in the last two weeks really come around, she is less irritable and has put on weight and seems much more like how I would expect an almost five month baby to be.

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MikesMom
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Re: 3 month old IVIG resistant

Post by MikesMom » Tue Apr 16, 2013 9:10 pm

Wonderful news :D
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shelleyb
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Re: 3 month old IVIG resistant

Post by shelleyb » Wed Mar 04, 2015 9:32 pm

I am late in updating, but it's been 2 years since she was sick, and she is now (as far as I know) perfectly healthy. Her 1 year post echo was clear, and we were cleared by nephrology so her kidneys are fine too. Feel blessed to be one of the lucky ones.
Hopefully one day we will find out what causes this disease.
The only thing I wonder about is why some kids are cleared after a good 1 year post echo and some are recommended to have yearly echos done for longer.

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