I need help!

My daughter is a senior in college. She was diagnosed with ITP in March 2010. She has no health insurance as her dad and I are retired teachers. We thought we would be able to pay for the health center visits for the occasional cold or flu. She has always been healthy. The college insurance was expensive and covered very little. Then ITP happened. She was put on prednisone which didn't help. She's been hospitalized and has had five treatments. She has been covered by HCAP for some of this. Her doctor said when her last count was 19 to just give her a call if she had any serious bruising. She has developed bruising. She went to work out at the college rec center and someone asked her if she was being abused. She went to the health center to get blood work done. She told the doctor she had ITP and that her hair was falling out in rather large amounts. She asked if that had anything to do with her platelet count. He told her to Google ITP and look at the symptoms. Her count today was 29. The health center called and said she was to call her hematologist immediately. She did and got the secretary. She told her the numbers and her problems. The secretary said she would talk to the doctor. When the secretary called her back she said the doctor had said that's fine. No concern -no follow up - just that's fine. Is this because she has no health insurance? Why is she being treated this way? What can I do to help her? She is over 21 and I can't intervene anymore because they will only talk to me in the billing department. We are signing her up on our retirement health insurance, but that won't start until January 2011. I have failed my daughter. She is scared and I don't know how to help her.

hello leftychris. First I gotta say that you did not fail your daughter. We all do what we can at the time. Your being to hard on yourself, and that won't help anyone either. I wish I could tell you why the doctors do/say what they do/say! I'd be rich if I knew! I would like to believe it's because they feel there is no real problem. 29 is a low count, but managable. Is the bruising getting worse? Have you checked into getting help from your State for medical costs? Stay Strong!

Chris:

First, take a breath. Having had three kids in college and a policy that kicked them off when they were 19, I understand the situation. It's tricky. You didn't fail any one...they crummy system failed you.

There are ways to manage ITP without a lot of expense if the situation allows. It's a shame that Prednisone didn't work because it's cheap. When you say it didn't work, did it get her counts up and they fell again or it didn't raise her counts at all? There is a difference. Decadron is another cheap way to treat which you might consider (steroid).

Many of us have been very low (under 10) in counts and were not hospitalized. Generally, that depends on symptoms and the doctor. If your daughter has minimal symptoms, she may not have to be in the hospital. That would cut costs considerably. You need to read as much as you can about ITP and try to become informed so you can make decisions with your daughter.

29 is an okay count...not great, but many do not treat at that number. Steroids can cause hair loss, so that might account for that problem. Your daughter should follow up in the next week or two and have another count done, or sooner if she feels they are dropping.

I know the frustration of having a child over 18 and not being able to speak to medical personnel about them. I have a daughter with an autoimmune disorder and it makes me crazy that it's all a big secret. Your daughter can add you to her HIPPA list and you should be able to speak to her doctor then; I've managed a few conversations with doctors and nurses since I'm on the list.

In the meantime, try to stay calm and know that ITP is rarely fatal. It can be scary, but it can be managed. Have her join the Forum - there are many people here with experience and wisdom.

Some doctors allow written consent where your daughter could write up permission for them to speak to you over the phone regarding results of tests. You may have to check with her doctor to see of they allow written consent. I am 25 and I bring my mother with me to all my hematology appointments, partly to have another set of ears in case I don't understand something and so she fully knows what's happening and hearing about different treatment options etc, so if your daughter is happy for u to tag along to visits, then that could be a idea. As long as she is happy to have u there, they can't force u out of that room, it is your daughters decision on who knows and who doesn't know about her condition and it seems she is happy to keep you in the know otherwise you wouldn't have all that information u have given us.

Stay strong and I hope everything works out for you all

First, thank you. When I checked my email this morning and saw I had responses to my post, well, the tears began to flow and the screen became very blurry. Thank you for the suggestions, ideas, and the support. I can't begin to tell you how much this means. To say ITP and have people who even know what it is, let alone to know so much about it. Thank you.

You absolutely are NOT failing your daughter. Your medical decision was based on the info and circumstances in front of you at that time. And you're not failing her now - you've already found this site which is an amazing source of info and support. It's obvious you're involved based on the knowledge you've shared and you can be a tremendous asset as she and you become knowledgeable re ITP. What you are is scared and that's perfectly understandable. Like most of us, we never heard of ITP until we were Diagnosed - I was in the hospital for a week before I even started to realize what ITP was - and my count was 0 and that was 10y ago.

ITP appears scarier than it is. Few die from it but when you first hear about it, it seems that's the only scenario - it is NOT. This site has many, many people who live, using caution, with ITP and low platelets. And many more ITP'ers have moved beyond this site and live a good life - ITP can be managed.

The major task ahead is to become knowledgeable re ITP since it's a rare disorder. The more you and your daughter know/understand the less frightening it'll become. You'll hear a lot of new terminology regarding this disorder, Rx, tests that might scare the devil out of you (been there/done that) and MD protocols that will raise more questions than provide answers. There is currently no answer about why ITP nor how to cure it, but it can be managed.

There are some extremely ITP knowledgeable people here that are an astounding source of ITP info. I often think they have more practical knowledge than some of the MD's - they just don't have the scientific/medical background - but they are committed to sharing a wealth of knowledge and no question is foolish - absolutely none!!

Now, take a slow deep breath, you now have a new family that circles the globe and is reachable around the clock - lesson one: High steroids cause sleeplessness so there's usually someone awake and here posting Lesson two: We all want to make your journey easier and we will!

Most states (maybe all) have laws allowing a document called a Healthcare Power of Attorney. It is signed to appoint one or more persons to have access to health and medical information, and, also, to make decisions for a person if she is unable to express her own desires. Your daughter could do one of these in addition to the info release form at the doctor's office. They are available on the web, but, as an attorney, I've seen many people make a mess of a form when they didn't have good legal advice. (If you do it, make sure you find one authorized in your state.) Most hospitals offer these forms as well. They often refer to them as "advance directives." The hospitals have social workers and other staff who are usually sufficiently knowledgeable to help the patient fill out and sign the form. Also, some colleges have counseling staff that can help direct a student to a free or low cost attorney to do these forms, or can help with them right there. (By the way, I'm a lawyer in SC, and, like the shoemaker with barefoot children, I am sitting here realizing my own college kid - not the one with ITP - is 19 and doesn't have one of these!) Like the other folks have said, take a deep breath, calm down, learn all you can, get good info from the doctors, then come here when you need to know something only a patient or a parent could tell you.
Norma

I can try to reassure you that you are most certainly not failing your daughter at all. Sadly I cannot help give insurance advice etc as am English, and live in England and our health system is sooo different. We don't have to worry about health costs. Am thinking about you all with regards health costs because that doesn't come into our concerns.