14 year daughter was just diagnosed with ITP

My daughter was just diagnosed on 8-27-2010. On that day we noticed several busing and since she was trying out for field hockey, we think it was normal. But since she was getting more and more bruising daily, we decided to have her checked out. On 8-27-2010 her platelets was 2. She was admitted immediately and was given IVIG but that took it up to 11 and the next week it dropped to 7 and the next 3. We go every week to get her blood work. Then at 3 they decided the give her the prednisone treatment. This took it up to 23 and then 46. She was taken off last Thursday and it is dropping rapidly. It was 23 last week. We are scheduled for the WinRho treatment tomorrow 10-5-2010.

Looking for some support and some knowledge from parents who have this problem. My daughter is also looking for a teen that she can talk to that is experiencing this ITP...any suggestions????

Thanking all for your anticipated response.

Seeta

There is a teen thread which she can register and post stuff on the teen section, not sure how many teens actually post in there at the moment though. I am not a teen anymore, i am 25, nor am i a parent. I have low platelets myself. I don't have ITP, but i have a syndrome which part of that is low platelets, so i have been dealing with low counts all my life, so even though i'm not a teen, if she wants to talk to me, she is more then welcome to. She can go my profile and send me an email if she wishes too.

Seeta,

I am a parent of a 9-1/2 year old who was diagnosed 6 years ago. First thing to keep in mind is that the do not consider this chronic for 6-12 months. That means that for now, your good thoughts and hopes is that her body takes care of things pretty soon and it no longer becomes an issue. While ITP can be frustrating, it is nice that you already seem to have some good medical care helping you through it. Reaching out to this forum is another great step so you get that all important peer support. I promise you that everything you are feeling (anxiety, fear, confusion, etc) are all things most of us have and continue to go through. As you maneuver around this site you will get a lot of people sharing their opinions and stories with you. That is very important, but it is just as important to remember that most people on this site are not doctors and they are only sharing their child's experience. All kids are different and if you gave 10 different kids, at the same platelet level, the same treatment, you could get 10 different results. What I am saying as you move forward is to take what you read with a grain of salt. One of the most important decisions to make with your doctor is if he is going to treat the numbers or the symptoms. Treating the numbers means that whenever she is low, a treatment will follow. Some people choose to treat the symptoms (heavy bruising, bleeding, etc). Neither is right or wrong, it is just a personal preference (some people are not comfortable letting their kids walk around with low platelets even if there is no bleeding). Just something to think about. As questions come up, be sure to reach out and we will be here for that support.

On another note, I would have your daughter reach out to the teen site to hook up with other teens going through this. It is will critical in helping her to work through this new condition.

My suggestion for teens (since this site doesn't seem to get alot of hits from teens) would be for the parents to find out if their child is interested in getting in touch with another ITP child through Facebook. It seems like everything they do nowadays is through that site or Twitter, if the child is old enough. Both of my girls have an account, but I monitor it very closely and I have the password to get on any time I want.

For parents who want their child to communicate with another ITP child, I would suggest emailing through this site (there is a way, but I am not sure how at the moment). I work at a middle school and two high schools and one of the things we discuss alot is how to reach teens who are struggling in private and how we can try to get other teens (peer watchdog group) to reach out to these kids and tell them they are not alone. Do NOT post your information on here because this is a public site and anyone can read anything you post here.

Caitlin was talking to one other girl her age who was also involved in competitive cheerleading, but that girl ended up having an acute case and they don't talk anymore. The mom somehow got a hold of me through email and then we got out girls connected. It made Caitlin feel good to be able to share her experiences and help the other girl at the same time.

Seeta-

Do get your daughter tested for tick diseases such as anaplasmosis (erhlichiosis) which can lower platelet counts. If she's active with field hockey, she could have easily picked up a tick and not known it.

My daughter's ITP began with such a tick bite. Her first round of ITP did not stabilize until she was treated with antibiotics for the anaplasmosis. She later had Lyme disease and that did not depress her platelets but did make her pretty miserable. The anaplasmosis was the trigger for ITP, which is an autoimmune response.

Unfortunately, her ITP recurs when she has a viral cold, flu shot, etc. but she usually bounces back quickly with no treatments. (Has needed IViG once with anaplasmosis and once later with what we now think was mono).

She's off to college now leading a pretty normal life. We are just paranoid about viral colds, etc that could trigger a new round of ITP.