Steroid Use in KD---Beneficial
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toffeegirl
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Re: Steroid Use in KD---Beneficial
Crossing my fingers that it proves to be beneficial.
We are heading for our 4th week in hospital tomorrow. My 3 yr old daughter was admitted to our local hospital and has had 2 rounds of IVIG, one on the 5th day and one on the 11th. She partially responded to the first dose and the 2nd made not a jot of difference. Her first heart ultrasound on the 8th day showed no coronary abnormalities.
We were sent home on weekend leave and her temp stayed at a pretty constant 37-38. She was unable to walk or sit up and was in huge pain and discomfort. Her joints swelled, her eyes were puffy, her left eyelid was drooping badly and her lips were still continually cracking and peeling. I'm pretty certain she was suffering from Aseptic Meningitis also.
On the 15th day we went back for bloods...they showed that her CRP and ESR were creeping back up slowly and her platelets were elevated. As we were in the 3rd week the platelets were following the KD expectation but they were not happy with the CRP. The 17th day had us back for another ultrasound which was also clear. Bloods on this day showed no change...CRP and ESR still on a slow creep up, platelets slightly reduced, temp still spiking on occasion.
We were then referred to the local children's hospital as they felt she had not responded appropriately to the IVIG. On the 18th day she was started on IV steroids....methylprednisolone....initially for 3 days then changed to 5 with an oral dose to follow. Tomorrow will be the 21st day since she started with KD symptoms! The change in her since the IV steroids has been immense. No pain, temp back to normal, most of the swelling has gone down, her lips are visibly healing, her eyes back to normal and she is back to being my little cheeky monkey again. They have done so many tests, ultrasounds, x-rays since we came here that my head is reeling. There seems to be no heart complications as yet though. Fingers toes and everything else crossed.
I have read that steroid therapy can cause increased problems with aneurysms so I am hoping that I am interpreting it right in that it is when they are given to kids who ALREADY have the damage it worsens it, not that it can cause them of its own accord in a child who was not displaying any abnormalities.
We are due more bloods tomorrow and another ultrasound in 3 weeks. I am hoping that all being well we will finally be able to go home this week when the IV is done...really don't want to complete week 4 still in hospital
We are heading for our 4th week in hospital tomorrow. My 3 yr old daughter was admitted to our local hospital and has had 2 rounds of IVIG, one on the 5th day and one on the 11th. She partially responded to the first dose and the 2nd made not a jot of difference. Her first heart ultrasound on the 8th day showed no coronary abnormalities.
We were sent home on weekend leave and her temp stayed at a pretty constant 37-38. She was unable to walk or sit up and was in huge pain and discomfort. Her joints swelled, her eyes were puffy, her left eyelid was drooping badly and her lips were still continually cracking and peeling. I'm pretty certain she was suffering from Aseptic Meningitis also.
On the 15th day we went back for bloods...they showed that her CRP and ESR were creeping back up slowly and her platelets were elevated. As we were in the 3rd week the platelets were following the KD expectation but they were not happy with the CRP. The 17th day had us back for another ultrasound which was also clear. Bloods on this day showed no change...CRP and ESR still on a slow creep up, platelets slightly reduced, temp still spiking on occasion.
We were then referred to the local children's hospital as they felt she had not responded appropriately to the IVIG. On the 18th day she was started on IV steroids....methylprednisolone....initially for 3 days then changed to 5 with an oral dose to follow. Tomorrow will be the 21st day since she started with KD symptoms! The change in her since the IV steroids has been immense. No pain, temp back to normal, most of the swelling has gone down, her lips are visibly healing, her eyes back to normal and she is back to being my little cheeky monkey again. They have done so many tests, ultrasounds, x-rays since we came here that my head is reeling. There seems to be no heart complications as yet though. Fingers toes and everything else crossed.
I have read that steroid therapy can cause increased problems with aneurysms so I am hoping that I am interpreting it right in that it is when they are given to kids who ALREADY have the damage it worsens it, not that it can cause them of its own accord in a child who was not displaying any abnormalities.
We are due more bloods tomorrow and another ultrasound in 3 weeks. I am hoping that all being well we will finally be able to go home this week when the IV is done...really don't want to complete week 4 still in hospital
Re: Steroid Use in KD---Beneficial
Hang in there mom. We've been there done that, but WITH aneurysms......please keep us updated!
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toffeegirl
- 10+ Posts
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- Joined: Sun Jul 17, 2011 6:04 pm
Re: Steroid Use in KD---Beneficial
Well, totally unexpectedly we've been discharged today! She has to take oral steroids for the next week and then back into a day ward next Mon for more IV...they have not decided yet whether it will be a 1 or 3 day course. Her aspirin has been reduced from 600mg a day to 37.5mg and they are happy to wait 4 weeks for her next ultrasound.
I really hope that they have got this right. You'd think I'd be happy that she's finally getting better but am still terrified that she will develop heart complications in the next few weeks Guess that's a fear I'm going to have to learn to live with. It just seems to be incredibly unusual that she has not responded to the IVIG, been hospitalised for 3 weeks, required steroid pulse therapy and is not suffering any complications. I cannot help but worry they are missing something
I really hope that they have got this right. You'd think I'd be happy that she's finally getting better but am still terrified that she will develop heart complications in the next few weeks
Guess that's a fear I'm going to have to learn to live with. It just seems to be incredibly unusual that she has not responded to the IVIG, been hospitalised for 3 weeks, required steroid pulse therapy and is not suffering any complications. I cannot help but worry they are missing something -
Kristopher
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Re: Steroid Use in KD---Beneficial
Hi and thanks for the article. I read the concluding statement of the study and it stated that steroid pulse therapy was effective in reducing the duration of fevers. Right now, my son is 3.5 years old and the fevers have been some of his worst. Any type of treatment that could help manage that is a good thing. The specialists I have consulted on this have not yet mentioned this form of treatment so it was nice to discover. It does sound as though it is in the early stages of research and use though.
Last edited by Kristopher on Mon Oct 03, 2011 2:25 pm, edited 1 time in total.
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toffeegirl
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Re: Steroid Use in KD---Beneficial
Kristopher
My daughter had 2 doses of IVIG in July and they told me every time, "give it 24 hours and she'll be a different kid" We did and she wasn't! It was scary watching her not respond and scarier still watching the Dr's scratch their heads and debate the next course of action.
Cue a change of hospital and a Rheumatology team with a lot more KD experience. They immediately gave her a huge dose of IV Methylprednisolone and in 24 hours she WAS a different kid
By that point I was getting quite cynical and more than a little frightened so to see the steroid treatment do what they kept telling me the IVIG would was an absolute relief. I don't know how effective it has been for others but for us it was almost instantaneous and I am so grateful that they treated her with it.
She finally finished her taper dose last week and whilst there have been some side effects they seem to be temporary and much less of a concern to me than the refractory KD was.
My daughter had 2 doses of IVIG in July and they told me every time, "give it 24 hours and she'll be a different kid" We did and she wasn't! It was scary watching her not respond and scarier still watching the Dr's scratch their heads and debate the next course of action.
Cue a change of hospital and a Rheumatology team with a lot more KD experience. They immediately gave her a huge dose of IV Methylprednisolone and in 24 hours she WAS a different kid
By that point I was getting quite cynical and more than a little frightened so to see the steroid treatment do what they kept telling me the IVIG would was an absolute relief. I don't know how effective it has been for others but for us it was almost instantaneous and I am so grateful that they treated her with it.
She finally finished her taper dose last week and whilst there have been some side effects they seem to be temporary and much less of a concern to me than the refractory KD was.