any one else have children that have had ITP. My son was just diagnosed with it. We just got released from the hospital. Just needing information from any one who has or is going through it. Thanks. :)

coley91--

Hi...my little niece had ITP when she had just turned 3. She was staying with us (while my brother and wife were in Hawaii), and I noticed she was a little lethargic and pale. Then the next day she had nose blleds off and on...heavy nose bleeds. She also had bleeding in the skin, you know, those little pinhead sized purple spots, all around her body. She didn't have much of an appetite either. So, because her nose bleeds continued through the night, and she threw up blood, we took her to the emergency room, and after taking blood tests, the Dr. told me she has 1 of 2 things, either Luekemia or ITP. Luckily it was the ITP. It was confirmed the next day with a bone marrow test and other blood tests were done. She was put on Prednisone, and stayed on that for a few months. I don't know the dose, but they told me that her appetite was huge! Anyway, she did very well, and started feeling better within a couple of weeks. They kept a close eye on her, (Dr's) for a good 18 months or so. She's 17 now and going to graduate high school in a few months, and she's never had anymore problems, thank God. I do know that it's an auto immune disorder. (and I thought I read it's more common in females). I'm sure with the proper treatment your son will get well. But I remember the Dr. that dx'd it said that it could be very dangerous if not properly treated.

Good luck,
DEDA

coley91--

Hi...my little niece had ITP when she had just turned 3. She was staying with us (while my brother and wife were in Hawaii), and I noticed she was a little lethargic and pale. Then the next day she had nose blleds off and on...heavy nose bleeds. She also had bleeding in the skin, you know, those little pinhead sized purple spots, all around her body. She didn't have much of an appetite either. So, because her nose bleeds continued through the night, and she threw up blood, we took her to the emergency room, and after taking blood tests, the Dr. told me she has 1 of 2 things, either Luekemia or ITP. Luckily it was the ITP. It was confirmed the next day with a bone marrow test and other blood tests were done. She was put on Prednisone, and stayed on that for a few months. I don't know the dose, but they told me that her appetite was huge! Anyway, she did very well, and started feeling better within a couple of weeks. They kept a close eye on her, (Dr's) for a good 18 months or so. She's 17 now and going to graduate high school in a few months, and she's never had anymore problems, thank God. I do know that it's an auto immune disorder. (and I thought I read it's more common in females). I'm sure with the proper treatment your son will get well. But I remember the Dr. that dx'd it said that it could be very dangerous if not properly treated.

Good luck,
DEDA



Yes! It sure can be dangerous. They can bleed internally, and if they bump there heads ect, with low levels it can cause brain bleeds. My son is on bed rest, we go get his levels checked tomorrow. All the signs of it are gone. So... hopefully the levels are up up up. We are praying hard for that. I was reading in a couple articles on the internet, that they are linking ITP to the MMR shot, which he did just get. Scary huh. Thanks for the information on your neice. Its nice to talk to people who have been through it also.

Nicole

Nicole, I didn't want to scare you in my first post, but now that I see how informed you are about this I will say that her Dr. here in Sacramento told me of a 10 year old boy in L. Tahoe that died of it. He said that he bled to death. I was so frightened!

How old is your son?
Good luck Nicole, and I'll pray for your little guy. Hope those levels are way up!!! (It's platelets, right?) Here's an angel for him, (and you too!) :angel: :angel:

DEDA

Nicole, I didn't want to scare you in my first post, but now that I see how informed you are about this I will say that her Dr. here in Sacramento told me of a 10 year old boy in L. Tahoe that died of it. He said that he bled to death. I was so frightened!

How old is your son?
Good luck Nicole, and I'll pray for your little guy. Hope those levels are way up!!! (It's platelets, right?) Here's an angel for him, (and you too!) :angel: :angel:

DEDA

My son is 5. Went to the doctor today, and she said he looked good... no signs of having platelets down. Thanks for the Angel!!! I know there is one beside both of us. God is good!!! Thanks for your prayers!! His name is Caleb. :)

Hi Nicole-

I'm glad Caleb's platelets looked good. I've said prayers for him, and I'm sure he's going to be okay, God is watching over him too! :)

Hi Nicole-

I'm glad Caleb's platelets looked good. I've said prayers for him, and I'm sure he's going to be okay, God is watching over him too! :)

Thank you!!! I believe that God is watching over him for sure. Im trying to put all my trust in him. Your a very sweet person for caring so much. :)

Deda,

Just wanted to let you know, my sons platelets went from being very low last week at 28000 and today we got his blood work done and they are 128000!! The doctors were so excited and shocked at how fast they rose. I know its because of prayer, and wanted to thank you for praying for my son. We are very excited, and my son is so happy!!! Take care.

Nicole

Nicole--I know it's prayer as well, and I'm SO happy to hear this news. Yes, I did pray for him, and knew that he was going to get well. :angel: I'm going through my own trial and have been sick with auto immune thyroid disease, (Hashimoto's) for 2 years, the last 6 months of which I've been very ill. But due to prayers and my strong faith, I'm recovering and the past few weeks I'm finally feeling healthy and well again. We have a strong pattern of auto immune diseases in our family, that's why I read at this board.
Even though I don't know you I felt compelled to say a prayer for your little guy. :) I'm sure he has healthy days ahead of him now. Thank you for letting me know this.
God bless you and Caleb.
Love, DEDA

Nicole--I know it's prayer as well, and I'm SO happy to hear this news. Yes, I did pray for him, and knew that he was going to get well. :angel: I'm going through my own trial and have been sick with auto immune thyroid disease, (Hashimoto's) for 2 years, the last 6 months of which I've been very ill. But due to prayers and my strong faith, I'm recovering and the past few weeks I'm finally feeling healthy and well again. We have a strong pattern of auto immune diseases in our family, that's why I read at this board.
Even though I don't know you I felt compelled to say a prayer for your little guy. :) I'm sure he has healthy days ahead of him now. Thank you for letting me know this.
God bless you and Caleb.
Love, DEDA
AWWWWWWWWW THANK YOU SO MUCH!!! YOU ARE PRECIOUS. I WILL ALSO PRAY FOR YOU, THAT YOU RECOVER QUICKLY. YOUR AN ABSOLUTE DOLL. xo

oh Nicole...I just remembered how sick my little niece was with her bout of ITP so many years ago, and I could see how worried you were too. With all the auto immune diseases my own family has been through, it makes me grateful that my son and daughter, (they're 25 & 30) have always been so healthy, and so far have avoided getting any of these AI diseases, thankfully. My mother and brother have both passed away at 56 and 46 due to AI disease. (Idiopathic pulmonary fibrosis). My brother had at least 4 AI diseases. This after being such a healthy persaon all his life. We have to be grateful for the good health God gives us and it's also taught me that not much else in life is all that important. Faith, family and good health have become my top 3 priorities now.
Keep me posted on how Caaleb does these next few weeks, please. Sounds like he's going to be a healthy little boy again. PTL! And bless you too Nicole, you're such a good mom! :)
DEDA

Hi! I had ITP when I was in 7th and 8th grade. I am 26 now but I'm still not supposed to take anything that will thin my blood for risk of me getting it agaiin. Anyway, I noticed when I scratched my leg or arm that I would have the purple scratch marks, my ear lobes turned purple, and I had spots on my neck. My mom thought I had hickies or something and I told her I didn't. ONe week-end we went on a camping trip and something bit me and I scatched it. My mom looked at my leg and said what is wrong with your leg? I went to the dr the next day and they took blood. We went back home and within a couple of hours my doctor called my mom and told her to get me to the children's hospital asap. Platelet count is supposed to be over 100,000 and mine was 6,000. I had to be careful not to bump my head because that could cause internal bleeding. I had to be extra careful not to cut myself because I didn't have enough platelets to clot and I would bleed to death. It is a very serious disease but can be treated. At first they tested to see if I had leukemia because sometimes people with low platelet count can have that but it just turned out that I had low platelets. Of course platelets help clot the blood so anything that would cause bleeding be extra careful of. I also had extreme nose bleeds everyday. Anyway they put me on predisone (very stong dose but cant remember how much) for about 4 months and my platelet count went back up so they took me off of the medicine slowly. 1 week after I had been off of the predisone I had a relapse and had to be put back on it for another 5 months. After that and still to this day (fingers crossed) my platelet count has been normal. They were very worried when I was pregnant (7 years agao) and kept a close eye on my bloodwork but everything turned out fine. The good news is it can be taken care of. If predisone doesn't work there is a strong I.V. medicine that they can use. The predisone will cause unusual food cravings, gain weight, fluid( I didn't really gain weight I just looked puffy due to the fluid), weakens the immune system, hair growth (once you go off of it you will lose the extra hair that you gained or at least I did), and more. The problem I have to this day (and I believe it was from the predisone and possible the disease) is a very bad immune system. I've been sick with just about everything ever since I had the ITP. If I get a cold or the flu I'll have it for 3 times longer than everyone else, I catch everything that comes around, I had to have a hyst. 2 years ago, and right now I have an autoimmune disorder but they don't know which one I have yet. (the docs. or looking at lupus, ra, sjorens, and connective tissue bone disease or something like that) I have been diagnosed with APS. (which that is opposite of ITP. It is known as the sticky blood disease in which my blood clots too much) Anyway, sorry to keep blabbing but I am trying not to forget anything but I know that I have. When I had ITP I was the 5th person in the United States who had been diagnosed and the 2nd person that my doctor had ever had with it. It is still a pretty rare disease. But like I said before, it can be treated. The treatment may be short term or it may take a little longer, just according to how the body reacts to the meds. If you have any questions please feel free to ask me. I went through this whole ITP thing for 9 months. I know I have left out quite a bit but like I said please ask all the questions you have and I will be glad to answer them. :wave:

Thanks football mom. We are doing better. His counts went up to 228000 as of Friday. The docs were very happy about that!!! As were we. He was able to play outside all weekend. It was great. We are just praying they continue to remain high. Ive learned so much about ITP over the last while. I think I know everything now. Its amazing how much information is out there. Thanks for telling me your story, I am so happy you are over it, and living a life with normal platelets. Take care. :)

I am so glad his platelet count is that high and back to normal. I hope and pray that they will remain high and you all can go back to living a normal life again without any worries. Best of luck!! :cool:

Thanks football mom. We are doing better. His counts went up to 228000 as of Friday. The docs were very happy about that!!! As were we. He was able to play outside all weekend. It was great. We are just praying they continue to remain high. Ive learned so much about ITP over the last while. I think I know everything now. Its amazing how much information is out there. Thanks for telling me your story, I am so happy you are over it, and living a life with normal platelets. Take care. :)

What wonderful news Nicole...that is awesome that he is responding to his treatment so fast! Glad to hear such good news! :)
Take care and God bless...
DEDA

What wonderful news Nicole...that is awesome that he is responding to his treatment so fast! Glad to hear such good news! :)
Take care and God bless...
DEDA
Thanks Deda... It is great! He has a nasty cough right now. I feel bad for him. I dont think he will be able to go to school tomorrow... which I am sure will upset him. But... I want him to just get healthy. Hope your doing good as well Deda... are you feeling ok? I pray you are. Take care.

Nicole

Thank you for that Nicole, you are so kind, and I appreciate prayers for me so much! Yes, thankfully I'm feeling SO much better. Still not 100%, but at least I'm not having horrible pains in my body like before, and my hair is no longer falling out in huge clumps, also I'm sleeping 8 hours a night again after 6 months of insomnia so severe that I only slept 2-3 hours a night. Every day I feel a bit better, and I even have enough energy to clean my house again, although I'm starting out slowly. (Never thought I'd be grateful to clean house LOL!) My husband and I just got home from a 3 day weekend to L Tahoe as sort of a celebration that our lives are getting back to normal. I took along my laptop to check on these healthboards which I'm getting a bit addicted to!! LOL! I follow a lot of peoples stories here, and it's wonderful to see someone making good progress, such as your Caleb has. Having problems with ones health, or one of our loved ones health, sure gives us a greater appreciation of life!!

Take care Nicole, and I'll continue to pray for him. Give him a little hug for me!! :)
DEDA

Awww Im so glad your life is getting back to normal Deda!!! How exciting to go on vacation! You deserved it Im sure. I will pray that you continue to get stronger and stronger. Caleb is doing well today. His cough is almost gone. I keep checking for signs of the ITP... and continueing to pray that the signs stay away. My daughter has bronchitis... and an ear infection, she is two. Poor thing, I was up with her all night last night. Im on my way to bed now. I thank you for your friendship. I can tell your a very kind person. Where abouts do you live? I live in Alberta Canada. Take care Deda. Sweet dreams! :)

I had ITP when I was 19,was on steroids for nearly 2 years,though every time I was off them the bleeding would start again,so I had my spleen taken out.I've had no trouble since.I'm 64 now,but my platelets are checked often............

I had ITP when I was 19,was on steroids for nearly 2 years,though every time I was off them the bleeding would start again,so I had my spleen taken out.I've had no trouble since.I'm 64 now,but my platelets are checked often............


Yes... I guess you had the chronic form of ITP... usually in children 90% of the time it is acute... and will eventually go back to normal. Thats what we are praying for. I know a girl who got her spleen removed as well. She was older too. Shes doing really well also.

Nicole

Awww Im so glad your life is getting back to normal Deda!!! How exciting to go on vacation! You deserved it Im sure. I will pray that you continue to get stronger and stronger. Caleb is doing well today. His cough is almost gone. I keep checking for signs of the ITP... and continueing to pray that the signs stay away. My daughter has bronchitis... and an ear infection, she is two. Poor thing, I was up with her all night last night. Im on my way to bed now. I thank you for your friendship. I can tell your a very kind person. Where abouts do you live? I live in Alberta Canada. Take care Deda. Sweet dreams! :)

Hi Nicole--Wow, I bet it's cold up there?! My paternal grandfather hailed from Quebec! I'm here in a (kinda) small town, (16,000) near our capital, Sacramento, about 18 miles west of Sacramento. Grew up in S. CA tho, and hubby retired from the Air Force, and we made this our new home. :)

You are so sweet! I'm feeling great, yes, thank you. I'm also happy about this as I will be traveling in a couple of months to N. Carolina to visit my daughter. (she's my baby at 25) She teaches high school over there, after getting married here last May, moved there for a teaching program. I miss her so much. (Still have our son here tho, 8 miles away!) So now that I'm feeling so good, I can actually get excited about this. :)

You have had your hands full lately with your little ones being ill. I hope you are also taking good care of yourself Nicole. :nono: It takes a lot of energy being a Mom, and yours are still little. I hope your little girl is feeling better today too. I went through the ear infections with my son when he was little. One after another, until they finally took out his tonsils, adnoids, and put in ear tubes. After that he gained weight and never had another ear infection or sore throats. Too bad they waited until he was 9 though.

How is Caleb doing today? How often will they test his platelets? Seems that I remember with my niece, they kept an eye on her platelets for a long time. Boy, when I see her today I can't believe she ever went through that! She's 17 now, about to graduate from high school, she's going around visiting colleges, and is a star golfer on her school team. I'm grateful that she never had another problem with the ITP. :angel: Prayers were answered, for sure!

Have a great night Nic...
Love, DEDA :p