Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 Petechiae can be caused by a low platelet count the techincal term is idiopathic thrombocytopenia or ITP.? I think the platelet counts would show up in his normal blood counts and if that was normal then that would not support ITP.??? I just thought I would mention it. Pam petechiae??? For years my oldest son, Phoenix, has gotten petechiae on his body for no apparent reason. When he was younger the pediatricians scared us to death and thought he had Leukemia and we were sent to a Hematologist and everything, but that turned out negative. I have recently acquired all of my children's medical records as we are changing offices and I always asked about his labs, etc when they were drawn and they never said anything was wrong with them or abnormal. I guess my real question is this, since I know I'm rambling. Do any of you know what might be causing his recurring petechiae??? He just had an " episode " of it that lasted almost 7 weeks and the entire time he was more fatigued and had a lot of headaches but nothing else. The only new complaints are his recent sinus and URI but I think that is linked to the pneumovax vaccine...but I could be wrong. Any suggestions?? I know he has hypogam and has low IGA and IGG levels but we are still in the diagnosis phase. They also think he has asthma and he has major allergies and chronic recurrent sinus problems. You know, the norm for our guys. Anyone else with the recurrent petechiae??? Deska Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 Usually with ITP the counts are low b/c an antibody in the blood destroys them. Peace be with you, Pattie Understanding is the reward of faith. Therefore, don't seek to understand so that you may believe, but believe so that you may understand. -- St Augustine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 How are his platelets? Have they checked his platelet function, levels and other things like bleed time, etc? There is a disease called Von Willebrands that is the most common bleeding disorder (inherited) - they check to VWB factors for that. Low platelets can be caused by viruses, etc.. Wish I had more info. You can find info on platelets here: www.shwachman.blogspot.com <http://www.shwachman.blogspot.com/> Peace be with you, Pattie Understanding is the reward of faith. Therefore, don't seek to understand so that you may believe, but believe so that you may understand. -- St Augustine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 Deska, I am assuming that if he is still in diagnosis, he is not on immunoglobin? One of the side effects of immunoglobin therapy can be petechiae. A friend and I recently discovered that when reading through the package insert that comes with it when there was no other reasonable explanation for it. My 5 year old gets it intermittently on her upper body for no other reason. I would never assume this is the problem without consulting with a physician. But in the absense of any other possibility, and on immunoglobin, it could cause it. Terri petechiae??? For years my oldest son, Phoenix, has gotten petechiae on his body for no apparent reason. When he was younger the pediatricians scared us to death and thought he had Leukemia and we were sent to a Hematologist and everything, but that turned out negative. I have recently acquired all of my children's medical records as we are changing offices and I always asked about his labs, etc when they were drawn and they never said anything was wrong with them or abnormal. I guess my real question is this, since I know I'm rambling. Do any of you know what might be causing his recurring petechiae??? He just had an " episode " of it that lasted almost 7 weeks and the entire time he was more fatigued and had a lot of headaches but nothing else. The only new complaints are his recent sinus and URI but I think that is linked to the pneumovax vaccine...but I could be wrong. Any suggestions?? I know he has hypogam and has low IGA and IGG levels but we are still in the diagnosis phase. They also think he has asthma and he has major allergies and chronic recurrent sinus problems. You know, the norm for our guys. Anyone else with the recurrent petechiae??? Deska Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 Terri, What package insert were you reading? Charlie gets this too and I'm wondering if its the same brand? Dayna Sent via BlackBerry from T-Mobile Re: petechiae??? Deska, I am assuming that if he is still in diagnosis, he is not on immunoglobin? One of the side effects of immunoglobin therapy can be petechiae. A friend and I recently discovered that when reading through the package insert that comes with it when there was no other reasonable explanation for it. My 5 year old gets it intermittently on her upper body for no other reason. I would never assume this is the problem without consulting with a physician. But in the absense of any other possibility, and on immunoglobin, it could cause it. Terri petechiae??? For years my oldest son, Phoenix, has gotten petechiae on his body for no apparent reason. When he was younger the pediatricians scared us to death and thought he had Leukemia and we were sent to a Hematologist and everything, but that turned out negative. I have recently acquired all of my children's medical records as we are changing offices and I always asked about his labs, etc when they were drawn and they never said anything was wrong with them or abnormal. I guess my real question is this, since I know I'm rambling. Do any of you know what might be causing his recurring petechiae??? He just had an " episode " of it that lasted almost 7 weeks and the entire time he was more fatigued and had a lot of headaches but nothing else. The only new complaints are his recent sinus and URI but I think that is linked to the pneumovax vaccine...but I could be wrong. Any suggestions?? I know he has hypogam and has low IGA and IGG levels but we are still in the diagnosis phase. They also think he has asthma and he has major allergies and chronic recurrent sinus problems. You know, the norm for our guys. Anyone else with the recurrent petechiae??? Deska Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 No he is not on ivig yet and the peds used to always give him rocephin when he got it (so I assume something showed up in his labs that they didn't tell me) On Jun 20, 2008, at 2:49 PM, dfladhammer@... wrote: Terri, What package insert were you reading? Charlie gets this too and I'm wondering if its the same brand? Dayna Sent via BlackBerry from T-Mobile Re: petechiae??? Deska, I am assuming that if he is still in diagnosis, he is not on immunoglobin? One of the side effects of immunoglobin therapy can be petechiae. A friend and I recently discovered that when reading through the package insert that comes with it when there was no other reasonable explanation for it. My 5 year old gets it intermittently on her upper body for no other reason. I would never assume this is the problem without consulting with a physician. But in the absense of any other possibility, and on immunoglobin, it could cause it. Terri petechiae??? For years my oldest son, Phoenix, has gotten petechiae on his body for no apparent reason. When he was younger the pediatricians scared us to death and thought he had Leukemia and we were sent to a Hematologist and everything, but that turned out negative. I have recently acquired all of my children's medical records as we are changing offices and I always asked about his labs, etc when they were drawn and they never said anything was wrong with them or abnormal. I guess my real question is this, since I know I'm rambling. Do any of you know what might be causing his recurring petechiae??? He just had an " episode " of it that lasted almost 7 weeks and the entire time he was more fatigued and had a lot of headaches but nothing else. The only new complaints are his recent sinus and URI but I think that is linked to the pneumovax vaccine...but I could be wrong. Any suggestions?? I know he has hypogam and has low IGA and IGG levels but we are still in the diagnosis phase. They also think he has asthma and he has major allergies and chronic recurrent sinus problems. You know, the norm for our guys. Anyone else with the recurrent petechiae??? Deska Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 It was in the gammunex package....but when I did some looking, it was in the fine print in many of them. In the fine print on the gammunex, it says that 20% of patients using gammunex reported an adverse event of petechiae. HOWEVER, now reading it, this was in a study on patients with ITP that developed petechiae interestingly. But two of us have noticed our kiddos having petechiae with no good reason....there is just so much that they still don't know. I am going to do a little more reading and see what I can dig up....I will let you know I find anything more. How is everything? Terri petechiae??? > > For years my oldest son, Phoenix, has gotten petechiae on his body for no > apparent > reason. When he was younger the pediatricians scared us to death and > thought he had > Leukemia and we were sent to a Hematologist and everything, but that > turned out > negative. I have recently acquired all of my children's medical records as > we are changing > offices and I always asked about his labs, etc when they were drawn and > they never said > anything was wrong with them or abnormal. I guess my real question is > this, since I know > I'm rambling. Do any of you know what might be causing his recurring > petechiae??? He > just had an " episode " of it that lasted almost 7 weeks and the entire time > he was more > fatigued and had a lot of headaches but nothing else. > The only new complaints are his recent sinus and URI but I think that is > linked to the > pneumovax vaccine...but I could be wrong. > Any suggestions?? I know he has hypogam and has low IGA and IGG levels but > we are > still in the diagnosis phase. They also think he has asthma and he has > major allergies > and chronic recurrent sinus problems. You know, the norm for our guys. > Anyone else with > the recurrent petechiae??? > > Deska > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 Phoenix's is ALL over his chest/back arms and can be on his thighs. He is NOT on IVIG of any kind yet. Does anyone have any suggestions for me since we are NOT on IVIG? His will last for long periods of times. I will have to go back and look at old labs to see if anything was ever noted, but nothing was ever mentioned to me. Deska On Jun 20, 2008, at 6:52 PM, " rfrench496 " <bluemtnfarm@...> wrote: Just to throw my 2 cents in: Mark gets petechiae also. He breaks out in it on his face when he cries (hard) and on his arms when they using the tubing for the stick. Typically, after every IVIG he has a rash. His platelets are normal, the nurses get concerned but it's " just one of those things " . Interesting that it's on the gammunex insert. I missed that, but I usually have a monster headache from reading one of them! , mom to Mark, 7, CVID -- In , " Terri Cerda " <tcerda@...> wrote: > > It was in the gammunex package....but when I did some looking, it was in the > fine print in many of them. In the fine print on the gammunex, it says that > 20% of patients using gammunex reported an adverse event of petechiae. > HOWEVER, now reading it, this was in a study on patients with ITP that > developed petechiae interestingly. But two of us have noticed our kiddos > having petechiae with no good reason....there is just so much that they > still don't know. I am going to do a little more reading and see what I can > dig up....I will let you know I find anything more. > > How is everything? > > Terri > > petechiae??? > > > > For years my oldest son, Phoenix, has gotten petechiae on his body for no > > apparent > > reason. When he was younger the pediatricians scared us to death and > > thought he had > > Leukemia and we were sent to a Hematologist and everything, but that > > turned out > > negative. I have recently acquired all of my children's medical records as > > we are changing > > offices and I always asked about his labs, etc when they were drawn and > > they never said > > anything was wrong with them or abnormal. I guess my real question is > > this, since I know > > I'm rambling. Do any of you know what might be causing his recurring > > petechiae??? He > > just had an " episode " of it that lasted almost 7 weeks and the entire time > > he was more > > fatigued and had a lot of headaches but nothing else. > > The only new complaints are his recent sinus and URI but I think that is > > linked to the > > pneumovax vaccine...but I could be wrong. > > Any suggestions?? I know he has hypogam and has low IGA and IGG levels but > > we are > > still in the diagnosis phase. They also think he has asthma and he has > > major allergies > > and chronic recurrent sinus problems. You know, the norm for our guys. > > Anyone else with > > the recurrent petechiae??? > > > > Deska > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 " He is NOT on IVIG of any kind yet. Does anyone have any suggestions for me... " Deska, My daughter's petechiae started prior to IVIg. (It was all over her back.) In her case, it was due to a severe infection + cytopenia (possibly an autoimmune process). There are many reasons for petechaie and I'm sorry that I can't explain you're kiddo. We ended up seeing a hematologist (as she continued to get the spots post IVIg but it was not as bad as prior to IVIg) and he blamed the CVID. I know others attribute petechiae to product...and that might be part of the case for my daughter...but it's not entirely clear... It can occur for so many reasons. Wikipedia gives > 20 reasons... http://en.wikipedia.org/wiki/Petechia mom to Dani, CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 Deska, if his rash is that severe and you're that concerned, you really should contact your pediatrician. There are a lot of causes, some of them serious. If it was a small rash that came and went, that's one thing. If he has a rash over his body, he should be seen. Good luck, , mom to Mark, 7, CVID > > > > It was in the gammunex package....but when I did some looking, it > was in the > > fine print in many of them. In the fine print on the gammunex, it > says that > > 20% of patients using gammunex reported an adverse event of > petechiae. > > HOWEVER, now reading it, this was in a study on patients with ITP > that > > developed petechiae interestingly. But two of us have noticed our > kiddos > > having petechiae with no good reason....there is just so much that > they > > still don't know. I am going to do a little more reading and see > what I can > > dig up....I will let you know I find anything more. > > > > How is everything? > > > > Terri > > > > petechiae??? > > > > > > For years my oldest son, Phoenix, has gotten petechiae on his > body for no > > > apparent > > > reason. When he was younger the pediatricians scared us to death > and > > > thought he had > > > Leukemia and we were sent to a Hematologist and everything, but > that > > > turned out > > > negative. I have recently acquired all of my children's medical > records as > > > we are changing > > > offices and I always asked about his labs, etc when they were > drawn and > > > they never said > > > anything was wrong with them or abnormal. I guess my real > question is > > > this, since I know > > > I'm rambling. Do any of you know what might be causing his > recurring > > > petechiae??? He > > > just had an " episode " of it that lasted almost 7 weeks and the > entire time > > > he was more > > > fatigued and had a lot of headaches but nothing else. > > > The only new complaints are his recent sinus and URI but I think > that is > > > linked to the > > > pneumovax vaccine...but I could be wrong. > > > Any suggestions?? I know he has hypogam and has low IGA and IGG > levels but > > > we are > > > still in the diagnosis phase. They also think he has asthma and > he has > > > major allergies > > > and chronic recurrent sinus problems. You know, the norm for our > guys. > > > Anyone else with > > > the recurrent petechiae??? > > > > > > Deska > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2008 Report Share Posted June 21, 2008 Thanks Pattie! My last response told about all the labs and stuff. I haven't even heard of VWB, I will look at it and see if anything sounds familiar. RE: petechiae??? How are his platelets? Have they checked his platelet function, levels and other things like bleed time, etc? There is a disease called Von Willebrands that is the most common bleeding disorder (inherited) - they check to VWB factors for that. Low platelets can be caused by viruses, etc.. Wish I had more info. You can find info on platelets here: www.shwachman. blogspot. com <http://www.shwachma n.blogspot. com/> Peace be with you, Pattie Understanding is the reward of faith. Therefore, don't seek to understand so that you may believe, but believe so that you may understand. -- St Augustine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2008 Report Share Posted June 21, 2008 Hi Deska, I wanted to just add that we don't know if it is from IVIG....it is just one possibility of many. Many of our children have the petecheia......in our case it is transient.....some had it even before IVIG. Like Barbie mentioned, there is still so little they know about PIDD in the " grand scheme " of things. Many (if not most) of us know that we may never know the answer to much of what we deal with and we understand your frustration. We learned, early on, how important it is to get copies of everything....blood work especially. It is easy to become alarmed about things on the test results that appear out of range to us....but are insignificant. Always ask questions....don't be afraid of your child's physician....even if they are not great communicators. Put them on the spot. I think about a physician as a sales person. They are being paid to take care of us and should adhere to " customer care " the way a person trying to sell you something does. They are working for you! More than 3 years since diagnosis, I have learned to ask for copies of everything each and every time anything is done (it took me two years to learn that lesson! LOL). I wish we had a magic ball and could help......but if you are concerned and do not think your concern is being addressed, don't be afraid to just come right out and say " I don't think my concern over petecheia is being addressed " . If you still have problems, then find someone who will take an interest. But, also know that, should they not find an answer that is obvious, you might never find the answer....it may just be what it is, as hard as that is to swallow ( we swallow alot around here). Please know that we are all here to support eachother, but sometimes our hands are just flat out tied. Terri Mom, Molly (8 ) and Maggie (6) CID. petechiae??? > > > > > > For years my oldest son, Phoenix, has gotten petechiae on his > body for no > > > apparent > > > reason. When he was younger the pediatricians scared us to death > and > > > thought he had > > > Leukemia and we were sent to a Hematologist and everything, but > that > > > turned out > > > negative. I have recently acquired all of my children's medical > records as > > > we are changing > > > offices and I always asked about his labs, etc when they were > drawn and > > > they never said > > > anything was wrong with them or abnormal. I guess my real > question is > > > this, since I know > > > I'm rambling. Do any of you know what might be causing his > recurring > > > petechiae??? He > > > just had an " episode " of it that lasted almost 7 weeks and the > entire time > > > he was more > > > fatigued and had a lot of headaches but nothing else. > > > The only new complaints are his recent sinus and URI but I think > that is > > > linked to the > > > pneumovax vaccine...but I could be wrong. > > > Any suggestions? ? I know he has hypogam and has low IGA and IGG > levels but > > > we are > > > still in the diagnosis phase. They also think he has asthma and > he has > > > major allergies > > > and chronic recurrent sinus problems. You know, the norm for our > guys. > > > Anyone else with > > > the recurrent petechiae??? > > > > > > Deska > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2008 Report Share Posted June 21, 2008 Oh I definitely understand that. There have been a lot of things that I have just not had answers to in the past. There was a time they thought he had Kawasaki's and they never did figure out what he actually had, his joints were swelling, his feet and hands were swelling, his tongue looked like a strawberry, he had a 105 fever for 15 days, no answer... they did test after test after test .... no answer. So, I know that we just don't get answers sometimes. Even though he is 11 and we are just now starting to get a dx for him, I have always known he had something more going on, and tried to get them to test him for a PIDD long time ago, and they wouldn't, insisted my kids didn't have one, even though I thought they did, I think Dr's in the south are more reluctant to test and just don't seem to know as much about it. It seems like they are in the dark ages sometimes. My little guy Jayden, 6, would always get Arthritic Myalga (sp?) and still will if he gets strep, so I'm very aware of the odd things that no one else gets and the things that they have no answers for. He also gets petechiae, just not as often as Phoenix. After looking at the VWD, I don't know that he has many of those symptoms. They both bruise very easily, and have both had bouts of anemia, but Phoenix has only ever had mild nose bleeds, and I'm sure when they checked his clot times, that they were normal. I think it would've flagged something if he had that. ?? Maybe it's just one of the odd things, like you said, that goes along with them having a PIDD and maybe it's just a flag when he has a viral or bacterial thing going on, b/c every time, he is sick. Whether or not the Dr's say he is or not. You know the whole, " sick, but not " . Thanks for all of the input. I do appreciate it. It is good to know that we are all here and have all either been where the others are, are going through it together, or will be there at some point! Deska petechiae??? > > > > > > For years my oldest son, Phoenix, has gotten petechiae on his > body for no > > > apparent > > > reason. When he was younger the pediatricians scared us to death > and > > > thought he had > > > Leukemia and we were sent to a Hematologist and everything, but > that > > > turned out > > > negative. I have recently acquired all of my children's medical > records as > > > we are changing > > > offices and I always asked about his labs, etc when they were > drawn and > > > they never said > > > anything was wrong with them or abnormal. I guess my real > question is > > > this, since I know > > > I'm rambling. Do any of you know what might be causing his > recurring > > > petechiae??? He > > > just had an " episode " of it that lasted almost 7 weeks and the > entire time > > > he was more > > > fatigued and had a lot of headaches but nothing else. > > > The only new complaints are his recent sinus and URI but I think > that is > > > linked to the > > > pneumovax vaccine...but I could be wrong. > > > Any suggestions? ? I know he has hypogam and has low IGA and IGG > levels but > > > we are > > > still in the diagnosis phase. They also think he has asthma and > he has > > > major allergies > > > and chronic recurrent sinus problems. You know, the norm for our > guys. > > > Anyone else with > > > the recurrent petechiae??? > > > > > > Deska > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2008 Report Share Posted June 21, 2008 -- Just another idea.......a few weeks ago, I had a rash, all over, that looked exactly like petechiae, but wasnt. I mean....if you looked at a picture of petechiae, and a pic of what I had, it looked exactly the same. The only difference my dr said, was what i had blanched under glass pressed against it(true petechiae doesnt blanch). Still and all, she had no idea what caused it. Several days of prednisone helped clear it. So its possible to have a rash resembling petechaie, and its not. valarie mom to 3 w/cvid - In , " Deska " <deska66@...> wrote: > > For years my oldest son, Phoenix, has gotten petechiae on his body for no apparent > reason. When he was younger the pediatricians scared us to death and thought he had > Leukemia and we were sent to a Hematologist and everything, but that turned out > negative. I have recently acquired all of my children's medical records as we are changing > offices and I always asked about his labs, etc when they were drawn and they never said > anything was wrong with them or abnormal. I guess my real question is this, since I know > I'm rambling. Do any of you know what might be causing his recurring petechiae??? He > just had an " episode " of it that lasted almost 7 weeks and the entire time he was more > fatigued and had a lot of headaches but nothing else. > The only new complaints are his recent sinus and URI but I think that is linked to the > pneumovax vaccine...but I could be wrong. > Any suggestions?? I know he has hypogam and has low IGA and IGG levels but we are > still in the diagnosis phase. They also think he has asthma and he has major allergies > and chronic recurrent sinus problems. You know, the norm for our guys. Anyone else with > the recurrent petechiae??? > > Deska > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2008 Report Share Posted June 21, 2008 -- Your poor kids have been thru so much. I feel sorry for them.......I wish your dr would try IVIG for them. valarie mom to 3 w/cvid - In , " deska66@... " <deska66@...> wrote: > > No he is not on ivig yet and the peds used to always give him rocephin when he got it (so I assume something showed up in his labs that they didn't tell me) > > > On Jun 20, 2008, at 2:49 PM, dfladhammer@... wrote: > > Terri, > > What package insert were you reading? Charlie gets this too and I'm wondering if its the same brand? > > Dayna > Sent via BlackBerry from T-Mobile > > Re: petechiae??? > > > Deska, > > I am assuming that if he is still in diagnosis, he is not on immunoglobin? One of the side effects of immunoglobin therapy can be petechiae. A friend and I recently discovered that when reading through the package insert that comes with it when there was no other reasonable explanation for it. My 5 year old gets it intermittently on her upper body for no other reason. I would never assume this is the problem without consulting with a physician. But in the absense of any other possibility, and on immunoglobin, it could cause it. > > Terri > > petechiae??? > > For years my oldest son, Phoenix, has gotten petechiae on his body for no apparent > reason. When he was younger the pediatricians scared us to death and thought he had > Leukemia and we were sent to a Hematologist and everything, but that turned out > negative. I have recently acquired all of my children's medical records as we are changing > offices and I always asked about his labs, etc when they were drawn and they never said > anything was wrong with them or abnormal. I guess my real question is this, since I know > I'm rambling. Do any of you know what might be causing his recurring petechiae??? He > just had an " episode " of it that lasted almost 7 weeks and the entire time he was more > fatigued and had a lot of headaches but nothing else. > The only new complaints are his recent sinus and URI but I think that is linked to the > pneumovax vaccine...but I could be wrong. > Any suggestions?? I know he has hypogam and has low IGA and IGG levels but we are > still in the diagnosis phase. They also think he has asthma and he has major allergies > and chronic recurrent sinus problems. You know, the norm for our guys. Anyone else with > the recurrent petechiae??? > > Deska > > Quote Link to comment Share on other sites More sharing options...
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