Steroids may Hamper Aneurysm Regression
Re: Steroids may Hamper Aneurysm Regression
Interesting Sandy, thanks for posting this one!
Michael is more than likely in this study group, he received steroids prior to IVIG due the problems with his dx at our local hospital. He was finally transferred to SickKids, after the findings of the CAA's on day 9 or 10 at finding they where already 4mm and because they where growing so so fast by two days later 6mm, antoher 2 days 8mm. Once at sickKids for a few days (steriods where stopped on finding of CAA's) symptons all came back including fever approx day 14 or 15 they had to finally start IVIG but at that point CAA where already over 8mm so we knew the IVIG would not help them but the hope was to slow them from growing so quickly finally stopped at 11mm as he was release from hospital after 2 weeks. Back in 1996 I learnt the the steriods was the worse thing for him to have received first as it was know them to speed up the damage, but when I would try to question that (as I had a quote from one of the ped. books of medicine) no would even touch that or even try to answer that question. I always was cut right off when ever I would bring that up! Very intersting especially seeing as this has come out of sickKids.........................hmmmmmmmmmmmmmm
Michael is more than likely in this study group, he received steroids prior to IVIG due the problems with his dx at our local hospital. He was finally transferred to SickKids, after the findings of the CAA's on day 9 or 10 at finding they where already 4mm and because they where growing so so fast by two days later 6mm, antoher 2 days 8mm. Once at sickKids for a few days (steriods where stopped on finding of CAA's) symptons all came back including fever approx day 14 or 15 they had to finally start IVIG but at that point CAA where already over 8mm so we knew the IVIG would not help them but the hope was to slow them from growing so quickly finally stopped at 11mm as he was release from hospital after 2 weeks. Back in 1996 I learnt the the steriods was the worse thing for him to have received first as it was know them to speed up the damage, but when I would try to question that (as I had a quote from one of the ped. books of medicine) no would even touch that or even try to answer that question. I always was cut right off when ever I would bring that up! Very intersting especially seeing as this has come out of sickKids.........................hmmmmmmmmmmmmmm
"Creating Awareness One Beat At A Time"
http://www.kdcanada.ca
http://www.kdcanada.ca
Re: Steroids may Hamper Aneurysm Regression
Pauline,
I had heard and read that steroids made aneurysms worse also, but the specialists were not having any part of that by the time Paige had two giant aneurysms and continued fever after the IVIGs and Remicade. Then when her fever continued AFTER the pulse steroids she was put on oral steroids for a few months. We always wondered why her aneurysms continued to grow---now it makes me wonder about all the steroids she got. However, what else are they going to do to get the darned KD stopped in some of these weird cases? I guess I didn't realize that Michael had steroids BEFORE IVIGs......I haven't ever heard of that. How come?
The reports I have previously read regarding the steroids being bad were discounted because they said by the time a kid is on steroids for KD, they probably have aneurysms and they are already in the upper % of bad outcomes, so the reporting was skewed. Now this report says that given the same circumstances, the aneurysms with steroids and are less likely to regress. Seems like something they will study to find out WHY----another puzzle piece. If they can find out why steroids stop inflammation, but hinder with the aneurysms we might get some needed answers ...... so you guys may have ended up in a study that could help someone later.....if there is any positive side to it! I have a feeling you will be asking your cardiologist about it. I might be doing the same thing.
I had heard and read that steroids made aneurysms worse also, but the specialists were not having any part of that by the time Paige had two giant aneurysms and continued fever after the IVIGs and Remicade. Then when her fever continued AFTER the pulse steroids she was put on oral steroids for a few months. We always wondered why her aneurysms continued to grow---now it makes me wonder about all the steroids she got. However, what else are they going to do to get the darned KD stopped in some of these weird cases? I guess I didn't realize that Michael had steroids BEFORE IVIGs......I haven't ever heard of that. How come?
The reports I have previously read regarding the steroids being bad were discounted because they said by the time a kid is on steroids for KD, they probably have aneurysms and they are already in the upper % of bad outcomes, so the reporting was skewed. Now this report says that given the same circumstances, the aneurysms with steroids and are less likely to regress. Seems like something they will study to find out WHY----another puzzle piece. If they can find out why steroids stop inflammation, but hinder with the aneurysms we might get some needed answers ...... so you guys may have ended up in a study that could help someone later.....if there is any positive side to it! I have a feeling you will be asking your cardiologist about it. I might be doing the same thing.
Re: Steroids may Hamper Aneurysm Regression
I will throw my 2 cents in here as it relates to my sons case. I think the statement about the fever lasting longer is kind of moot since you wouldn't normally be giving steroids if the IVIG hadn't brought down the fever. My son had 4 rounds of IVIG and 2 of steroids and his fever lasted 23 days. His aneurysms weren't as large as Michaels or Paiges but they did regress. It took quite a number of years, 6 I think, before they regressed to within "normal range". I think in the case of kids who are IVIG resistant the doctors are willing to try steroids and other treatments just to bring the fever/inflammation down. I am not sure how fast aneurysms in children who don't get steroids resolve but it seems like if you aren't getting steroids then you probably have a better prognosis than someone who is IVIG resistant anyway.
Alan
Alan
Re: Steroids may Hamper Aneurysm Regression
I definetely agree that when they are IVIG resistant they have no choice but to give the steriods to bring the fever down and stop the immflamation, and yes by that point they are probably going to be the ones that will end up with the aneurysms.
Michael was initially diagnosed with an allergic reaction and started on oral steriods by ped in office, then two days later and getting worse admitted to local hospital with Steven Johnson's syndrome with KD as the deferiential dx, that is when they immediately started the high dose IV steriods. This also immediately started masking the fever and causing the rash to fade, as they completed the IV steriods and started weening him with oral steriods again the fever, rash and red eyes started to reappear. This was about day 9 or 10 he was full blown arthritis and all the KD signs back, ped insisted it was not KD as he was a white non asian but I kept questioning the KD as one of the nurses encouraged me to do so, I asked at that point for them to transfer him to SickKids but he was so aragrant that he threatened that he would discharge Michael and we could go to sickKids ourselves but they will not admit him. Being that trusting back then, he told me he would do one more test to prove it was not KD once and for all, that is when he did an echo and found 2 aneurysm, he sure came back with his tail between his knees. He eventually discharged Michael a few days later with a follow up echo at SickKids for the next day, after that echo and because the 2 aneurysms had grown so fast, SickKids admitted him on the spot to start the coumadin and monitor the spedd in which they where growning.
As Michael was on the high dose steriods he did not have a high prolonged fever, with the steriods and tynelol his fever was controlable but we would know when the four hours where up the fever would rise but never into 100's all symptons where being completely masked by the steriods. Michael can not be compared to IVIG resistant kids because the steroids appeared to be making him better with receiving that first.
Back in the 1960's Japan used to treat kids with steriods proir to the use of IVIG and they confirmed that the use of steriods increased the risk of aneurysms or may possibly be the reason for the speed up, that is when they started using IVIG and results go better as far as the aneurysms.
Michael was one of SickKids first cases of really bad aneurysms, he had 5 in total. 4 in the left ranging from 11mm to 4mm, first being the biggest down to the smallest all in a row and 1 in the right being over 8mm. We only knew about the 1 in left 11mm and 1 in the rightover 8mm until his first cath, that is when they found the three more that the echo could not see!
Just makes me think, there could be nothing to the steriods but sure seems strange that he is one the worst cases now followed by sickkids and he just so happened to be treated the other way round from normal recomended way...........just saying intersting!
Michael was initially diagnosed with an allergic reaction and started on oral steriods by ped in office, then two days later and getting worse admitted to local hospital with Steven Johnson's syndrome with KD as the deferiential dx, that is when they immediately started the high dose IV steriods. This also immediately started masking the fever and causing the rash to fade, as they completed the IV steriods and started weening him with oral steriods again the fever, rash and red eyes started to reappear. This was about day 9 or 10 he was full blown arthritis and all the KD signs back, ped insisted it was not KD as he was a white non asian but I kept questioning the KD as one of the nurses encouraged me to do so, I asked at that point for them to transfer him to SickKids but he was so aragrant that he threatened that he would discharge Michael and we could go to sickKids ourselves but they will not admit him. Being that trusting back then, he told me he would do one more test to prove it was not KD once and for all, that is when he did an echo and found 2 aneurysm, he sure came back with his tail between his knees. He eventually discharged Michael a few days later with a follow up echo at SickKids for the next day, after that echo and because the 2 aneurysms had grown so fast, SickKids admitted him on the spot to start the coumadin and monitor the spedd in which they where growning.
As Michael was on the high dose steriods he did not have a high prolonged fever, with the steriods and tynelol his fever was controlable but we would know when the four hours where up the fever would rise but never into 100's all symptons where being completely masked by the steriods. Michael can not be compared to IVIG resistant kids because the steroids appeared to be making him better with receiving that first.
Back in the 1960's Japan used to treat kids with steriods proir to the use of IVIG and they confirmed that the use of steriods increased the risk of aneurysms or may possibly be the reason for the speed up, that is when they started using IVIG and results go better as far as the aneurysms.
Michael was one of SickKids first cases of really bad aneurysms, he had 5 in total. 4 in the left ranging from 11mm to 4mm, first being the biggest down to the smallest all in a row and 1 in the right being over 8mm. We only knew about the 1 in left 11mm and 1 in the rightover 8mm until his first cath, that is when they found the three more that the echo could not see!
Just makes me think, there could be nothing to the steriods but sure seems strange that he is one the worst cases now followed by sickkids and he just so happened to be treated the other way round from normal recomended way...........just saying intersting!
"Creating Awareness One Beat At A Time"
http://www.kdcanada.ca
http://www.kdcanada.ca
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brendyn'smom
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Re: Steroids may Hamper Aneurysm Regression
My son had Kawasaki disease when he was 16 months old, he received 2 rounds of IVIG, he had a brief response and was discharged from the hospital only to return the next day (which was Christmas) at that time his coronary arteries had dilated to 3mm and he then received 2 doses of high dose steroids that put him into steroid rage. Now I am wondering if those medications, especially the steroids could've had some effect on him. He has a very very poor memory and no attention span what so ever. My husband and I are starting to get very concerned about it. He has excellent speech but I think he is behind in everything else for his age, he doesn't know his colors, even though we practice with him almost everyday, he can't count and he can't even sit still while having a book read to him. Does anyone have any information if there are long term effects from these medications?
Thank you!
Thank you!