Question:
Jeannette, No, unfortunately they can’t give him more platelets, as his immune system will just attack them too. Why waste good platelets? Donna
Response:
Donna please keep us posted. I will ask my brothers if they can remember anything that will help. Belinda
Response:
I’ve been missing alot of posts & just got this 1. My 2 younger brothers both had ITP at different times. I was 11 & 13 when they had it. I can remember that they couldn’t eat chips because it would make their mouths bleed. When my brothers had ITP the Dr said it was caused by aspirin & an antibiotic. My RD years later said that it was related to my RA. They don’t take any NSAIDs or even aspirin & or fairly normal(except for being little brothers) adults with no long term side effects. Hang in there it takes time but they made it & I’m sure your son will too. belinda Donna wote> – Hide quoted text — Show quoted text -> P.S. They first diagnosed him with Idiopathic Thrombocytopenia Purpura > (ITP), which he still has, as part of the Evan’s Syndrome.
Response:
Donna F.: I tried to post to you before I went to bed but I got bumped off. I am up again and wanted to tell you again that you and your son are in my prayers. I have heard that the U of Mich. Medical Center is excellent. My uncle goes there for his problems and loves it. I am sure they will be able to help your son. Can they give him more platelets to bring up his count or doesn’t it work that way? Good luck and God’s blessings. Jeannette
Response:
> Anyway, I just wanted to write and get all this off my chest. I’ve been > so worried about him that it’s consumed my thoughts. I thought maybe > writing to you all about it would let my mind be at peace for a while. > On the up side is that I don’t think about my own pain (RA) too much > because I’m either taking him to the lab or doctor, waiting for a call > with his platelet count, etc.
My thoughts are with you and your son. Hope he has a speedy recovery, and I hope you are feeling better soon. — MZ
Response:
some patients with ITP are treated with high dose immune globulin. it calms down the system and allows the autoimmune process to halt. It might be something to ask the hemoc doctor about. — Ursula Katie & Macey’s mom ( 5 yr old with JRA)
Response:
Caroline – Hide quoted text — Show quoted text – > Hi Everyone, > Since Easter week my life has been in a turmoil. My son and I were on a > cruise in the Caribbean when he developed red dots (petechiae) all over > his body. By the third day he started getting bruises from anything > touching his body, including his watch band! A doctor on the cruise > (friend of a friend) checked him out and explained that the petechiae > were his capillaries bleeding under his skin. He said his platelet > count was probably low. He agreed to watch over him the rest of the > week, but felt he could continue the cruise since he was eating well, no > fever, and had no fatigue. But he said to definitely get him to a > doctor as soon as we got home. By the seventh day he had feet that were > almost purple, petechiae in his mouth, bleeding gums and bruises all > over his body. Very scary!! We got home at 10:30 pm on Sunday night > and I got him to the doctor Monday morning first thing. His doctor (a > family practice doc) looked at him and agreed he had petechiae (duh!) > and had his blood drawn for CBC and platelets. About 2 hours later I > got a call from the doctor’s office that Stephen needed to go the the > UofM hospital immediately. They had talked to a pediatric hematologist > and he was waiting for him. His platelet count was at 6 (normal being > 150 to 400). We got him to the ER and his count had already dropped to > 2! They admitted him to the Pediatric Hematology Unit. All this time > no one has told me or my husband anything other than he has a "somewhat" > rare blood condition called Evan’s Syndrome. They said they had to do > more tests to verify things. That night they have him some medication > called Winrow (similar to RhoGam because his Direct Coombs was > positive). Luckily my husband and I slept in his room because around > 2am he had a seizure! I was so scared! The docs ran in and gave him > some Demerol and other meds which calmed him down. Later that morning > they took his blood count and it was now down to 1 (one)! The doctors > said he needed another round of the Winrow…this time they gave him > some anti-seizure medication first. Unfortunately it didn’t work and > his count remained at 1. So they decided he needed a bone marrow test > to make sure it wasn’t Leukemia! Wow! Did I freak out over that! I > was so worried and nervous. Stephen handled it all like a trooper. He > was really nervous, but the docs and nurses were really good about > answering his questions. After two hours of agony, we found out his > bone marrow was fine. Nice good platelets were being manufactured, so > the Evan’s Syndrome remained his diagnosis. > Now Evans Syndrome is an autoimmune disease that is caused by your > body’s antibodies attacking the platelets as if they’re foreign. They > said he must have had a virus sometime in the recent past (month or two > ago) and when the virus was gone, his antibodies recognized a protein on > his platelets that they thought was the virus. Therefore they attacked > his platelets. Now the problem is getting them to STOP doing that. > They started him on 120 mg of Prenidsone (yes the dreaded steroid), > which finally did the trick and took his platelet count up. He was then > discharged from the hospital after a week, but with restrictions to not > ride his bike, roller blade or anything else that he could injure > himself. Since then it’s been a roller coaster ride. When they started > tapering him off the steroids, his platelets started dropping again. > The Saturday of Memorial weekend they were at 20. So they increased the > steroids to 60 mg/day for 7 days. He’s now on 40 mg/day with a platelet > count of 147. > I feel so sorry for him. His face is round and puffy. He’s tired all > the time and now has bronchitis. Tomorrow he drops to 30 mg/day for 7 > days and I’m worried his platelets will start dropping too. He gets his > blood drawn every Monday and Thursday. This is quite a lot for a 15 > year old to handle, but he’s doing it quite well. He’s gotten over the > fear of needles quickly (had no choice!) and takes his meds like it’s > routine. Now that’s scary! His stomach is bothering him a lot, I’m > thinking from the Prenidsone. I take Prenidsone every day too, but only > 4 mg. I can’t imagine taking as much as he is. The prognosis is > questionable. He may have this off and on for the rest of his life. > One of the biggest challenges is that he has to stop playing hockey, > which is the one sport he truly enjoys. The doctors said even if his > platelets were normal, they could start to drop, and until the petechiae > shows up, we wouldn’t know it. Internal bleeding is a big possibility > if hit. > Anyway, I just wanted to write and get all this off my chest. I’ve been > so worried about him that it’s consumed my thoughts. I thought maybe > writing to you all about it would let my mind be at peace for a while. > On the up side is that I don’t think about my own pain (RA) too much > because I’m either taking him to the lab or doctor, waiting for a call > with his platelet count, etc. No time to worry about myself. Blessing > in disguise? > Thanks for *listening*. You all are great. > Donna F. > P.S. They first diagnosed him with Idiopathic Thrombocytopenia Purpura > (ITP), which he still has, as part of the Evan’s Syndrome.
Response:
{{{{{Donna and Son}}}}} Oh Donna, how horrible. I can’t even imagine what you are going through. I don’t have much wisdom to offer other than that you should get him to the largest pediatric teaching hospital you can find, and have him treated by a pediatric immunologist. My only other thought is that tapering prednisone by 10 mg at a time may be too fast. We all know what happens when we do that with arthur. Hang in there kid! Walt – Hide quoted text — Show quoted text – > Hi Everyone, > Since Easter week my life has been in a turmoil. My son and I were on a > cruise in the Caribbean when he developed red dots (petechiae) all over > his body. By the third day he started getting bruises from anything > touching his body, including his watch band!
Response:
Jeannette
Response:
So sorry for your son. This being sick and having to put up with prednisone side effects is the pits for us all, but it just isn’t fair for someone so young to have to do it. They say God has a reason for these things but I am having trouble figuring out what it is. will pray for him. Peggy – Hide quoted text — Show quoted text –
Response:
Dawn0 – Hide quoted text — Show quoted text – > Hi Everyone, > Since Easter week my life has been in a turmoil. My son and I were on a > cruise in the Caribbean when he developed red dots (petechiae) all over > his body. By the third day he started getting bruises from anything > touching his body, including his watch band! A doctor on the cruise > (friend of a friend) checked him out and explained that the petechiae > were his capillaries bleeding under his skin. He said his platelet > count was probably low. He agreed to watch over him the rest of the > week, but felt he could continue the cruise since he was eating well, no > fever, and had no fatigue. But he said to definitely get him to a > doctor as soon as we got home. By the seventh day he had feet that were > almost purple, petechiae in his mouth, bleeding gums and bruises all > over his body. Very scary!! We got home at 10:30 pm on Sunday night > and I got him to the doctor Monday morning first thing. His doctor (a > family practice doc) looked at him and agreed he had petechiae (duh!) > and had his blood drawn for CBC and platelets. About 2 hours later I > got a call from the doctor’s office that Stephen needed to go the the > UofM hospital immediately. They had talked to a pediatric hematologist > and he was waiting for him. His platelet count was at 6 (normal being > 150 to 400). We got him to the ER and his count had already dropped to > 2! They admitted him to the Pediatric Hematology Unit. All this time > no one has told me or my husband anything other than he has a "somewhat" > rare blood condition called Evan’s Syndrome. They said they had to do > more tests to verify things. That night they have him some medication > called Winrow (similar to RhoGam because his Direct Coombs was > positive). Luckily my husband and I slept in his room because around > 2am he had a seizure! I was so scared! The docs ran in and gave him > some Demerol and other meds which calmed him down. Later that morning > they took his blood count and it was now down to 1 (one)! The doctors > said he needed another round of the Winrow…this time they gave him > some anti-seizure medication first. Unfortunately it didn’t work and > his count remained at 1. So they decided he needed a bone marrow test > to make sure it wasn’t Leukemia! Wow! Did I freak out over that! I > was so worried and nervous. Stephen handled it all like a trooper. He > was really nervous, but the docs and nurses were really good about > answering his questions. After two hours of agony, we found out his > bone marrow was fine. Nice good platelets were being manufactured, so > the Evan’s Syndrome remained his diagnosis. > Now Evans Syndrome is an autoimmune disease that is caused by your > body’s antibodies attacking the platelets as if they’re foreign. They > said he must have had a virus sometime in the recent past (month or two > ago) and when the virus was gone, his antibodies recognized a protein on > his platelets that they thought was the virus. Therefore they attacked > his platelets. Now the problem is getting them to STOP doing that. > They started him on 120 mg of Prenidsone (yes the dreaded steroid), > which finally did the trick and took his platelet count up. He was then > discharged from the hospital after a week, but with restrictions to not > ride his bike, roller blade or anything else that he could injure > himself. Since then it’s been a roller coaster ride. When they started > tapering him off the steroids, his platelets started dropping again. > The Saturday of Memorial weekend they were at 20. So they increased the > steroids to 60 mg/day for 7 days. He’s now on 40 mg/day with a platelet > count of 147. > I feel so sorry for him. His face is round and puffy. He’s tired all > the time and now has bronchitis. Tomorrow he drops to 30 mg/day for 7 > days and I’m worried his platelets will start dropping too. He gets his > blood drawn every Monday and Thursday. This is quite a lot for a 15 > year old to handle, but he’s doing it quite well. He’s gotten over the > fear of needles quickly (had no choice!) and takes his meds like it’s > routine. Now that’s scary! His stomach is bothering him a lot, I’m > thinking from the Prenidsone. I take Prenidsone every day too, but only > 4 mg. I can’t imagine taking as much as he is. The prognosis is > questionable. He may have this off and on for the rest of his life. > One of the biggest challenges is that he has to stop playing hockey, > which is the one sport he truly enjoys. The doctors said even if his > platelets were normal, they could start to drop, and until the petechiae > shows up, we wouldn’t know it. Internal bleeding is a big possibility > if hit. > Anyway, I just wanted to write and get all this off my chest. I’ve been > so worried about him that it’s consumed my thoughts. I thought maybe > writing to you all about it would let my mind be at peace for a while. > On the up side is that I don’t think about my own pain (RA) too much > because I’m either taking him to the lab or doctor, waiting for a call > with his platelet count, etc. No time to worry about myself. Blessing > in disguise? > Thanks for *listening*. You all are great. > Donna F. > P.S. They first diagnosed him with Idiopathic Thrombocytopenia Purpura > (ITP), which he still has, as part of the Evan’s Syndrome.
– Live, love and laugh much.
Response:
{{{{{Donna}}}}} {{{{{Donna’s son}}}}} Sarah L "Friends are those people who know the words to the song in your heart and sing them back to you when you have forgotten the words." (unattributed)
Response:
> Hi Everyone, > Since Easter week my life has been in a turmoil. My son and I were on a > cruise in the Caribbean when he developed red dots (petechiae) all over > his body. By the third day he started getting bruises from anything > touching his body, including his watch band!
— "There are some people that if they don’t know, you can’t tell ‘em." — Louis Armstrong http://www.geocities.com/SoHo/Nook/9300
Response:
Oh Donna what a scarey thing for him and you and everyone, for that matter to go through. I am so sorry. Tina has got the right idea, there has got to be alternatives. Ever think of taking him to a special teaching clinic, like Cleveland or Mayo or even St Jude’s this would be my thing to do. Too many times docs over look the obvious. I would write on of those places or even email them and ask what they think. God love you all. Prayers sent your way, big time. — Janers
Response:
>Tina…has your friend’s 4 year old daughter been tested for >Churg-Strauss syndrome or Wegener’s granulomatosis or several similar >autoimmune diseases?
I don’t honestly know. In the beginning they said they would let it go six months before doing any investigation, because they thought it was caused by a virus and would resolve. When she reached the six month mark she did go a whole month without any problems, so everyone thought it was over. But that didn’t last. She’s having problems again. If it was MY child…I would have insisted on finding the cause in the begining. ~Krissy Akron, Ohio http://arthritisinsight.com Knowledge is power…support is essential.
Response:
"""wow""" Donna i am so sorry for your family. as we all know that if one of our own is sick we all suffer. i take my 3-year old with me to my doctor’s appointments and try to "show" her that they are not bad or mean and that there is nothing to be afraid of. it sounds as though you did a wonderful job in parenting to have such a brave soul as you do in your son. i hope everything works out for the best (smiles and hugs) sarbel
– Hide quoted text — Show quoted text -> Hi Everyone, > Since Easter week my life has been in a turmoil. My son and I were on a > cruise in the Caribbean when he developed red dots (petechiae) all over > his body. By the third day he started getting bruises from anything > touching his body, including his watch band! A doctor on the cruise > (friend of a friend) checked him out and explained that the petechiae > were his capillaries bleeding under his skin. He said his platelet > count was probably low. He agreed to watch over him the rest of the > week, but felt he could continue the cruise since he was eating well, no > fever, and had no fatigue. But he said to definitely get him to a > doctor as soon as we got home. By the seventh day he had feet that were > almost purple, petechiae in his mouth, bleeding gums and bruises all > over his body. Very scary!! We got home at 10:30 pm on Sunday night > and I got him to the doctor Monday morning first thing. His doctor (a > family practice doc) looked at him and agreed he had petechiae (duh!) > and had his blood drawn for CBC and platelets. About 2 hours later I > got a call from the doctor’s office that Stephen needed to go the the > UofM hospital immediately. They had talked to a pediatric hematologist > and he was waiting for him. His platelet count was at 6 (normal being > 150 to 400). We got him to the ER and his count had already dropped to > 2! They admitted him to the Pediatric Hematology Unit. All this time > no one has told me or my husband anything other than he has a "somewhat" > rare blood condition called Evan’s Syndrome. They said they had to do > more tests to verify things. That night they have him some medication > called Winrow (similar to RhoGam because his Direct Coombs was > positive). Luckily my husband and I slept in his room because around > 2am he had a seizure! I was so scared! The docs ran in and gave him > some Demerol and other meds which calmed him down. Later that morning > they took his blood count and it was now down to 1 (one)! The doctors > said he needed another round of the Winrow…this time they gave him > some anti-seizure medication first. Unfortunately it didn’t work and > his count remained at 1. So they decided he needed a bone marrow test > to make sure it wasn’t Leukemia! Wow! Did I freak out over that! I > was so worried and nervous. Stephen handled it all like a trooper. He > was really nervous, but the docs and nurses were really good about > answering his questions. After two hours of agony, we found out his > bone marrow was fine. Nice good platelets were being manufactured, so > the Evan’s Syndrome remained his diagnosis. > Now Evans Syndrome is an autoimmune disease that is caused by your > body’s antibodies attacking the platelets as if they’re foreign. They > said he must have had a virus sometime in the recent past (month or two > ago) and when the virus was gone, his antibodies recognized a protein on > his platelets that they thought was the virus. Therefore they attacked > his platelets. Now the problem is getting them to STOP doing that. > They started him on 120 mg of Prenidsone (yes the dreaded steroid), > which finally did the trick and took his platelet count up. He was then > discharged from the hospital after a week, but with restrictions to not > ride his bike, roller blade or anything else that he could injure > himself. Since then it’s been a roller coaster ride. When they started > tapering him off the steroids, his platelets started dropping again. > The Saturday of Memorial weekend they were at 20. So they increased the > steroids to 60 mg/day for 7 days. He’s now on 40 mg/day with a platelet > count of 147. > I feel so sorry for him. His face is round and puffy. He’s tired all > the time and now has bronchitis. Tomorrow he drops to 30 mg/day for 7 > days and I’m worried his platelets will start dropping too. He gets his > blood drawn every Monday and Thursday. This is quite a lot for a 15 > year old to handle, but he’s doing it quite well. He’s gotten over the > fear of needles quickly (had no choice!) and takes his meds like it’s > routine. Now that’s scary! His stomach is bothering him a lot, I’m > thinking from the Prenidsone. I take Prenidsone every day too, but only > 4 mg. I can’t imagine taking as much as he is. The prognosis is > questionable. He may have this off and on for the rest of his life. > One of the biggest challenges is that he has to stop playing hockey, > which is the one sport he truly enjoys. The doctors said even if his > platelets were normal, they could start to drop, and until the petechiae > shows up, we wouldn’t know it. Internal bleeding is a big possibility > if hit. > Anyway, I just wanted to write and get all this off my chest. I’ve been > so worried about him that it’s consumed my thoughts. I thought maybe > writing to you all about it would let my mind be at peace for a while. > On the up side is that I don’t think about my own pain (RA) too much > because I’m either taking him to the lab or doctor, waiting for a call > with his platelet count, etc. No time to worry about myself. Blessing > in disguise? > Thanks for *listening*. You all are great. > Donna F. > P.S. They first diagnosed him with Idiopathic Thrombocytopenia Purpura > (ITP), which he still has, as part of the Evan’s Syndrome.
Response:
((((((Donna & son)))))) I am somewhat at a loss for words. Being a mother I can imagine the heartbreak this diagnosis has brought you. My oh my 
We parents know this is a big fear we carry for our much loved children, often saying if someone has to be ill or suffer, please let it be us and not our "babies", full knowing that much is beyond our human control. I hope and pray some treatment or med will be found to help your son and soon. So sorry. Blondie — Life is a mixture of living and longing, learning and growing, with loving and laughing filling the gaps in between~
Response:
Tina…has your friend’s 4 year old daughter been tested for Churg-Strauss syndrome or Wegener’s granulomatosis or several similar autoimmune diseases?
Response:
>Hi Everyone, >Since Easter week my life has been in a turmoil. My son and I were on a >cruise in the Caribbean when he developed red dots (petechiae) all over >his body. By the third day he started getting bruises from anything
Donna, I wish I had some advice for you, I can’t imagine what you must be going through. I hope he is doing better soon, and you guys hang in there! Steve http://www.zoomnet.net/~steve
Response:
Wow Donna, I am so very sorry to hear of all this. I am never letting my son leave the house again! Gary
– Hide quoted text — Show quoted text -> Hi Everyone, > Since Easter week my life has been in a turmoil. My son and I were on a > cruise in the Caribbean when he developed red dots (petechiae) all over > his body> Thanks for *listening*. You all are great. > Donna F. > P.S. They first diagnosed him with Idiopathic Thrombocytopenia Purpura > (ITP), which he still has, as part of the Evan’s Syndrome.
Response:
Donna, I am printing out your post to share with a friend of mine. Her daughter (4years old) has been dealing with ITP for about 8 months now. Very similar suituation. She’s been getting plasma transfusions about every other week. She gets the petechiae, blood in urine, bruises, bloody noses, etc when it is time for a transfusion. They were told that if it lasted more than six months it would probably be a chronic problem…and it has. While doing some research on the web for her I found an article that stated children with ITP have a much higher chance of deveolping lupus when they get older, so it does seem to be very closely related to autoimmune rheumatic diseases. Also, interesting to note, the Prosorba Column was originally develop to treat ITP. A doctor noted that two of his patients with ITP and RA had a dramatic inprovement in RA symptoms following Prosorba treatments. They are talking about removing Jill’s spleen. They said it would make the ITP much less severe. Anyways, Donna, I might be emailing you to get more information on Evan’s Syndrome. They’ve never given her a diagnosis other than ITP and I strong suspect it is more than that. ~Krissy Akron, Ohio http://arthritisinsight.com Knowledge is power…support is essential.
Response:
Ooooh my Donna, What is a mother to do in the face of all this??? Just what you have done and are continuing to do. I know it was hard for you to enjoy your vacation with all that going on but isnt it always the case with our children. Be strong and do what must be done. Harv – Hide quoted text — Show quoted text – > Hi Everyone, > Since Easter week my life has been in a turmoil. My son and I were on a > cruise in the Caribbean when he developed red dots (petechiae) all over > his body. By the third day he started getting bruises from anything > touching his body, including his watch band! A doctor on the cruise > (friend of a friend) checked him out and explained that the petechiae > were his capillaries bleeding under his skin. He said his platelet > count was probably low. He agreed to watch over him the rest of the > week, but felt he could continue the cruise since he was eating well, no > fever, and had no fatigue. But he said to definitely get him to a > doctor as soon as we got home. By the seventh day he had feet that were > almost purple, petechiae in his mouth, bleeding gums and bruises all > over his body. Very scary!! We got home at 10:30 pm on Sunday night > and I got him to the doctor Monday morning first thing. His doctor (a > family practice doc) looked at him and agreed he had petechiae (duh!) > and had his blood drawn for CBC and platelets. About 2 hours later I > got a call from the doctor’s office that Stephen needed to go the the > UofM hospital immediately. They had talked to a pediatric hematologist > and he was waiting for him. His platelet count was at 6 (normal being > 150 to 400). We got him to the ER and his count had already dropped to > 2! They admitted him to the Pediatric Hematology Unit. All this time > no one has told me or my husband anything other than he has a "somewhat" > rare blood condition called Evan’s Syndrome. They said they had to do > more tests to verify things. That night they have him some medication > called Winrow (similar to RhoGam because his Direct Coombs was > positive). Luckily my husband and I slept in his room because around > 2am he had a seizure! I was so scared! The docs ran in and gave him > some Demerol and other meds which calmed him down. Later that morning > they took his blood count and it was now down to 1 (one)! The doctors > said he needed another round of the Winrow…this time they gave him > some anti-seizure medication first. Unfortunately it didn’t work and > his count remained at 1. So they decided he needed a bone marrow test > to make sure it wasn’t Leukemia! Wow! Did I freak out over that! I > was so worried and nervous. Stephen handled it all like a trooper. He > was really nervous, but the docs and nurses were really good about > answering his questions. After two hours of agony, we found out his > bone marrow was fine. Nice good platelets were being manufactured, so > the Evan’s Syndrome remained his diagnosis. > Now Evans Syndrome is an autoimmune disease that is caused by your > body’s antibodies attacking the platelets as if they’re foreign. They > said he must have had a virus sometime in the recent past (month or two > ago) and when the virus was gone, his antibodies recognized a protein on > his platelets that they thought was the virus. Therefore they attacked > his platelets. Now the problem is getting them to STOP doing that. > They started him on 120 mg of Prenidsone (yes the dreaded steroid), > which finally did the trick and took his platelet count up. He was then > discharged from the hospital after a week, but with restrictions to not > ride his bike, roller blade or anything else that he could injure > himself. Since then it’s been a roller coaster ride. When they started > tapering him off the steroids, his platelets started dropping again. > The Saturday of Memorial weekend they were at 20. So they increased the > steroids to 60 mg/day for 7 days. He’s now on 40 mg/day with a platelet > count of 147. > I feel so sorry for him. His face is round and puffy. He’s tired all > the time and now has bronchitis. Tomorrow he drops to 30 mg/day for 7 > days and I’m worried his platelets will start dropping too. He gets his > blood drawn every Monday and Thursday. This is quite a lot for a 15 > year old to handle, but he’s doing it quite well. He’s gotten over the > fear of needles quickly (had no choice!) and takes his meds like it’s > routine. Now that’s scary! His stomach is bothering him a lot, I’m > thinking from the Prenidsone. I take Prenidsone every day too, but only > 4 mg. I can’t imagine taking as much as he is. The prognosis is > questionable. He may have this off and on for the rest of his life. > One of the biggest challenges is that he has to stop playing hockey, > which is the one sport he truly enjoys. The doctors said even if his > platelets were normal, they could start to drop, and until the petechiae > shows up, we wouldn’t know it. Internal bleeding is a big possibility > if hit. > Anyway, I just wanted to write and get all this off my chest. I’ve been > so worried about him that it’s consumed my thoughts. I thought maybe > writing to you all about it would let my mind be at peace for a while. > On the up side is that I don’t think about my own pain (RA) too much > because I’m either taking him to the lab or doctor, waiting for a call > with his platelet count, etc. No time to worry about myself. Blessing > in disguise? > Thanks for *listening*. You all are great. > Donna F. > P.S. They first diagnosed him with Idiopathic Thrombocytopenia Purpura > (ITP), which he still has, as part of the Evan’s Syndrome.
Response:
Hi Everyone, Since Easter week my life has been in a turmoil. My son and I were on a cruise in the Caribbean when he developed red dots (petechiae) all over his body. By the third day he started getting bruises from anything touching his body, including his watch band! A doctor on the cruise (friend of a friend) checked him out and explained that the petechiae were his capillaries bleeding under his skin. He said his platelet count was probably low. He agreed to watch over him the rest of the week, but felt he could continue the cruise since he was eating well, no fever, and had no fatigue. But he said to definitely get him to a doctor as soon as we got home. By the seventh day he had feet that were almost purple, petechiae in his mouth, bleeding gums and bruises all over his body. Very scary!! We got home at 10:30 pm on Sunday night and I got him to the doctor Monday morning first thing. His doctor (a family practice doc) looked at him and agreed he had petechiae (duh!) and had his blood drawn for CBC and platelets. About 2 hours later I got a call from the doctor’s office that Stephen needed to go the the UofM hospital immediately. They had talked to a pediatric hematologist and he was waiting for him. His platelet count was at 6 (normal being 150 to 400). We got him to the ER and his count had already dropped to 2! They admitted him to the Pediatric Hematology Unit. All this time no one has told me or my husband anything other than he has a "somewhat" rare blood condition called Evan’s Syndrome. They said they had to do more tests to verify things. That night they have him some medication called Winrow (similar to RhoGam because his Direct Coombs was positive). Luckily my husband and I slept in his room because around 2am he had a seizure! I was so scared! The docs ran in and gave him some Demerol and other meds which calmed him down. Later that morning they took his blood count and it was now down to 1 (one)! The doctors said he needed another round of the Winrow…this time they gave him some anti-seizure medication first. Unfortunately it didn’t work and his count remained at 1. So they decided he needed a bone marrow test to make sure it wasn’t Leukemia! Wow! Did I freak out over that! I was so worried and nervous. Stephen handled it all like a trooper. He was really nervous, but the docs and nurses were really good about answering his questions. After two hours of agony, we found out his bone marrow was fine. Nice good platelets were being manufactured, so the Evan’s Syndrome remained his diagnosis. Now Evans Syndrome is an autoimmune disease that is caused by your body’s antibodies attacking the platelets as if they’re foreign. They said he must have had a virus sometime in the recent past (month or two ago) and when the virus was gone, his antibodies recognized a protein on his platelets that they thought was the virus. Therefore they attacked his platelets. Now the problem is getting them to STOP doing that. They started him on 120 mg of Prenidsone (yes the dreaded steroid), which finally did the trick and took his platelet count up. He was then discharged from the hospital after a week, but with restrictions to not ride his bike, roller blade or anything else that he could injure himself. Since then it’s been a roller coaster ride. When they started tapering him off the steroids, his platelets started dropping again. The Saturday of Memorial weekend they were at 20. So they increased the steroids to 60 mg/day for 7 days. He’s now on 40 mg/day with a platelet count of 147. I feel so sorry for him. His face is round and puffy. He’s tired all the time and now has bronchitis. Tomorrow he drops to 30 mg/day for 7 days and I’m worried his platelets will start dropping too. He gets his blood drawn every Monday and Thursday. This is quite a lot for a 15 year old to handle, but he’s doing it quite well. He’s gotten over the fear of needles quickly (had no choice!) and takes his meds like it’s routine. Now that’s scary! His stomach is bothering him a lot, I’m thinking from the Prenidsone. I take Prenidsone every day too, but only 4 mg. I can’t imagine taking as much as he is. The prognosis is questionable. He may have this off and on for the rest of his life. One of the biggest challenges is that he has to stop playing hockey, which is the one sport he truly enjoys. The doctors said even if his platelets were normal, they could start to drop, and until the petechiae shows up, we wouldn’t know it. Internal bleeding is a big possibility if hit. Anyway, I just wanted to write and get all this off my chest. I’ve been so worried about him that it’s consumed my thoughts. I thought maybe writing to you all about it would let my mind be at peace for a while. On the up side is that I don’t think about my own pain (RA) too much because I’m either taking him to the lab or doctor, waiting for a call with his platelet count, etc. No time to worry about myself. Blessing in disguise? Thanks for *listening*. You all are great. Donna F. P.S. They first diagnosed him with Idiopathic Thrombocytopenia Purpura (ITP), which he still has, as part of the Evan’s Syndrome.
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