Guest guest Posted June 24, 1999 Report Share Posted June 24, 1999 Toni, One of my best friends in high school had ITP as a child (would have been around 1985 when she was sick). She was older than Jarrett, but she also had severe bruising, critically low platelets and petechiae (the little dots). They used steroids at first but it relapsed and they took her spleen out. Other than taking penicillin every day for the rest of her life, she has been perfectly normal. If Jarrett's condition cannot be brought into remission, you're right, he will have a limited range of activities he can perform, but the odds are good that with one of the therapies, they will be able to bring him up to the normal range and in essence " cure " the disease, I believe (I can double check that with my friend, because curing is a touchy word, not to be used lightly, I know). Anyway, I know three people who've had ITP and all live perfectly normal lives, with lots of activities, jobs, school, etc. Don't despair... there is hope! Good luck to you all! > > > Toni, I am forwarding your email to the whole group. All mail should be > sent to PedPIDonelist. > > Which IVIG brand are they using? Several people here have children > receiving IVIG treatment and there are several IVIG sites on the PedPID > page. http://www.netpage.org/PedPID/pedpid_intravenous_immune_globul.htm > > How long will the treat with IVIG before considering the BMT? > > > > Greetings > > > Hello all. I am new on board. As I mentioned, my nephew was diagnosed > this past Sunday with ITP or Idiopathic Thrombocytopenia Purpura. It is an > autoimmune disease. His platelets were at 2,000 yesterday, and they are up > to 8,000 today. The normal is between 150,000-400,000. He is not even > close to the safe zone. They are very concerned at this count with brain > hemmorhaging. They are treating it with IVIg. If this doesn't do the > trick, they will have to do a bone marrow. Normally, they treat this > illness with steroids, but they don't give the steroids to children under > 5. Jarrett is 4 years of age. He is bruised from head to toe, and he has > purple dots all over his body. He probably will never be able to do the > " normal " kid things again. If he gets a cut, it is possible that he will > bleed to death. It is very difficult to stop his bleeding. Although he is > not classified as a Hemopheliac, it is similar in many ways. It also looks > a lot like Lukemia, but they say that this is no form of cancer what so > ever. If there is anyone else out there that has went through ITP or knows > of someone who has been diagnosed with it, I would love to hear from you. > > My heart and prayers go out to each and every one of you. I may not be > familiar with all of your cases, but hopefully I will get to that point > eventually. > > I'm greatful to be part of such a wonderful group, and I look forward to > learning more about it. > > Sincerely, > Toni J > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 1999 Report Share Posted June 24, 1999 Toni, One of my best friends in high school had ITP as a child (would have been around 1985 when she was sick). She was older than Jarrett, but she also had severe bruising, critically low platelets and petechiae (the little dots). They used steroids at first but it relapsed and they took her spleen out. Other than taking penicillin every day for the rest of her life, she has been perfectly normal. If Jarrett's condition cannot be brought into remission, you're right, he will have a limited range of activities he can perform, but the odds are good that with one of the therapies, they will be able to bring him up to the normal range and in essence " cure " the disease, I believe (I can double check that with my friend, because curing is a touchy word, not to be used lightly, I know). Anyway, I know three people who've had ITP and all live perfectly normal lives, with lots of activities, jobs, school, etc. Don't despair... there is hope! Good luck to you all! > > > Toni, I am forwarding your email to the whole group. All mail should be > sent to PedPIDonelist. > > Which IVIG brand are they using? Several people here have children > receiving IVIG treatment and there are several IVIG sites on the PedPID > page. http://www.netpage.org/PedPID/pedpid_intravenous_immune_globul.htm > > How long will the treat with IVIG before considering the BMT? > > > > Greetings > > > Hello all. I am new on board. As I mentioned, my nephew was diagnosed > this past Sunday with ITP or Idiopathic Thrombocytopenia Purpura. It is an > autoimmune disease. His platelets were at 2,000 yesterday, and they are up > to 8,000 today. The normal is between 150,000-400,000. He is not even > close to the safe zone. They are very concerned at this count with brain > hemmorhaging. They are treating it with IVIg. If this doesn't do the > trick, they will have to do a bone marrow. Normally, they treat this > illness with steroids, but they don't give the steroids to children under > 5. Jarrett is 4 years of age. He is bruised from head to toe, and he has > purple dots all over his body. He probably will never be able to do the > " normal " kid things again. If he gets a cut, it is possible that he will > bleed to death. It is very difficult to stop his bleeding. Although he is > not classified as a Hemopheliac, it is similar in many ways. It also looks > a lot like Lukemia, but they say that this is no form of cancer what so > ever. If there is anyone else out there that has went through ITP or knows > of someone who has been diagnosed with it, I would love to hear from you. > > My heart and prayers go out to each and every one of you. I may not be > familiar with all of your cases, but hopefully I will get to that point > eventually. > > I'm greatful to be part of such a wonderful group, and I look forward to > learning more about it. > > Sincerely, > Toni J > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 1999 Report Share Posted June 24, 1999 , thanks for the good news. Each day, I seem to hear more and more success stories. This gives me and my family a lot of hope. I just hate seeing any child sick. He is such an active little tyke, it will be hard to keep him calm until the bruises go away, and he reaches remission. I'm going to visit him tonight at home. I can't wait! It seems he's doing pretty well, but I will keep you all posted on his condition. Thanks again to each and every one of you. Take care, and you will all be in my prayers! Toni, Aunt of Jarrett (4), ITP ---------- > > To: PedPID - onelist <PedPIDonelist> > Subject: Re: FW: Greetings > Date: Thursday, June 24, 1999 12:08 PM > > > > Toni, > > One of my best friends in high school had ITP as a child (would have been > around 1985 when she was sick). She was older than Jarrett, but she also > had severe bruising, critically low platelets and petechiae (the little > dots). They used steroids at first but it relapsed and they took her > spleen out. Other than taking penicillin every day for the rest of her > life, she has been perfectly normal. If Jarrett's condition cannot be > brought into remission, you're right, he will have a limited range of > activities he can perform, but the odds are good that with one of the > therapies, they will be able to bring him up to the normal range and in > essence " cure " the disease, I believe (I can double check that with my > friend, because curing is a touchy word, not to be used lightly, I know). > Anyway, I know three people who've had ITP and all live perfectly normal > lives, with lots of activities, jobs, school, etc. Don't despair... there > is hope! > Good luck to you all! > > > > > > > > > > Toni, I am forwarding your email to the whole group. All mail should be > > sent to PedPIDonelist. > > > > Which IVIG brand are they using? Several people here have children > > receiving IVIG treatment and there are several IVIG sites on the PedPID > > page. http://www.netpage.org/PedPID/pedpid_intravenous_immune_globul.htm > > > > How long will the treat with IVIG before considering the BMT? > > > > > > > > Greetings > > > > > > Hello all. I am new on board. As I mentioned, my nephew was diagnosed > > this past Sunday with ITP or Idiopathic Thrombocytopenia Purpura. It is an > > autoimmune disease. His platelets were at 2,000 yesterday, and they are up > > to 8,000 today. The normal is between 150,000-400,000. He is not even > > close to the safe zone. They are very concerned at this count with brain > > hemmorhaging. They are treating it with IVIg. If this doesn't do the > > trick, they will have to do a bone marrow. Normally, they treat this > > illness with steroids, but they don't give the steroids to children under > > 5. Jarrett is 4 years of age. He is bruised from head to toe, and he has > > purple dots all over his body. He probably will never be able to do the > > " normal " kid things again. If he gets a cut, it is possible that he will > > bleed to death. It is very difficult to stop his bleeding. Although he is > > not classified as a Hemopheliac, it is similar in many ways. It also looks > > a lot like Lukemia, but they say that this is no form of cancer what so > > ever. If there is anyone else out there that has went through ITP or knows > > of someone who has been diagnosed with it, I would love to hear from you. > > > > My heart and prayers go out to each and every one of you. I may not be > > familiar with all of your cases, but hopefully I will get to that point > > eventually. > > > > I'm greatful to be part of such a wonderful group, and I look forward to > > learning more about it. > > > > Sincerely, > > Toni J > > > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 1999 Report Share Posted June 24, 1999 , thanks for the good news. Each day, I seem to hear more and more success stories. This gives me and my family a lot of hope. I just hate seeing any child sick. He is such an active little tyke, it will be hard to keep him calm until the bruises go away, and he reaches remission. I'm going to visit him tonight at home. I can't wait! It seems he's doing pretty well, but I will keep you all posted on his condition. Thanks again to each and every one of you. Take care, and you will all be in my prayers! Toni, Aunt of Jarrett (4), ITP ---------- > > To: PedPID - onelist <PedPIDonelist> > Subject: Re: FW: Greetings > Date: Thursday, June 24, 1999 12:08 PM > > > > Toni, > > One of my best friends in high school had ITP as a child (would have been > around 1985 when she was sick). She was older than Jarrett, but she also > had severe bruising, critically low platelets and petechiae (the little > dots). They used steroids at first but it relapsed and they took her > spleen out. Other than taking penicillin every day for the rest of her > life, she has been perfectly normal. If Jarrett's condition cannot be > brought into remission, you're right, he will have a limited range of > activities he can perform, but the odds are good that with one of the > therapies, they will be able to bring him up to the normal range and in > essence " cure " the disease, I believe (I can double check that with my > friend, because curing is a touchy word, not to be used lightly, I know). > Anyway, I know three people who've had ITP and all live perfectly normal > lives, with lots of activities, jobs, school, etc. Don't despair... there > is hope! > Good luck to you all! > > > > > > > > > > Toni, I am forwarding your email to the whole group. All mail should be > > sent to PedPIDonelist. > > > > Which IVIG brand are they using? Several people here have children > > receiving IVIG treatment and there are several IVIG sites on the PedPID > > page. http://www.netpage.org/PedPID/pedpid_intravenous_immune_globul.htm > > > > How long will the treat with IVIG before considering the BMT? > > > > > > > > Greetings > > > > > > Hello all. I am new on board. As I mentioned, my nephew was diagnosed > > this past Sunday with ITP or Idiopathic Thrombocytopenia Purpura. It is an > > autoimmune disease. His platelets were at 2,000 yesterday, and they are up > > to 8,000 today. The normal is between 150,000-400,000. He is not even > > close to the safe zone. They are very concerned at this count with brain > > hemmorhaging. They are treating it with IVIg. If this doesn't do the > > trick, they will have to do a bone marrow. Normally, they treat this > > illness with steroids, but they don't give the steroids to children under > > 5. Jarrett is 4 years of age. He is bruised from head to toe, and he has > > purple dots all over his body. He probably will never be able to do the > > " normal " kid things again. If he gets a cut, it is possible that he will > > bleed to death. It is very difficult to stop his bleeding. Although he is > > not classified as a Hemopheliac, it is similar in many ways. It also looks > > a lot like Lukemia, but they say that this is no form of cancer what so > > ever. If there is anyone else out there that has went through ITP or knows > > of someone who has been diagnosed with it, I would love to hear from you. > > > > My heart and prayers go out to each and every one of you. I may not be > > familiar with all of your cases, but hopefully I will get to that point > > eventually. > > > > I'm greatful to be part of such a wonderful group, and I look forward to > > learning more about it. > > > > Sincerely, > > Toni J > > > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2003 Report Share Posted July 15, 2003 Hi and welcome. I'm so happy you have joined. Take care and we'll be talking. Later, Liz and Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2003 Report Share Posted July 15, 2003 Welcome to the group, ....I am on the CanHepC members list and have met you there. My name is Ann and I am the red-headed step-child to these two women here. I am pleased to have met you and regret that I don't speak more often . Any other time I am a talker but I enjoy listening too. I think that will change though as soon as I find more information on my HCV. The dr. wilI be talking to me about my labs tomorrow. It has been a real testy time for me. I have been outta work since January 2002 with another systemic problem and the adjustment has been difficult for me. All in all, the hcv is the culprit that kept my immune system lowered for me to have the other problem with Valley Fever. I am just now connecting the dots to understanding of what is going on with me. I have known about the hcv for some time now, (1981) yet, the Doc's I have seen for my medical problems throughout the years have never identified any of the problems to the hcv. Whenever asked about, my questions were passed over lightly probably due to lack of knowledge and too prideful to refer me out to a colleague. Who knows? Anyway, I am in good hands now with an Infectious Medicine Internist who treats HCV and Valley Fever which is the secondary issue that has been the irritant toward getting me to the appointment tomorrow. See ya online and talk to ya later, . Ann Greetings Hi Deb & Liz,What a great & cheery site you have here.Way to go-:)The more support & places to connect we have the more empowered we all become to overcome this illness.Take care,British ColumbiaCanadawww.island.net/~wmmHepatitis C Support Group For Dummies Motto:"Remember The Past, Live The Present, Look To The Future." Take Care and God Bless.Liz and Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2003 Report Share Posted July 16, 2003 Andy is great isn’t he.Very giving of his time in spite of going through tx himself.Just a thought about replies:if you post on any list & do not receive replies try-try again.Most everyone caring for a list & the members are ill to some degree.Combine that with the emotional changes while on TX and brain fog etc. & messages get missed.Don’t take it personallyJ Sharing with others is so important.Many feel as you did –that they are imagining these symptoms then when someone else shares the same reality –we know we are not alone. Take care, Re: Greetings Thanks for your reply, . I am not shy nor bashful. I had made some attempts in the CanHepC group and never had any replies so I became a lurker. I met Andy through another group and have had conversations with him. I become hypnotized with the manner in which he presents his thoughts and ideas. I am a fan of his. Sometimes the message I receive is for me to remain quiet, after all, I am still learning alot about my life and trying to process it as well as I can. I have been really busy since March just learning what I now know about what is happening to me. Before, it was merely accepted that I was and am a hypochondriac with a real mean disposition. Hmmm, not so anymore. I know better and it was through studying other's life's notes on these groups. Thanks again, Quote Link to comment Share on other sites More sharing options...
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