My daughter who is now 17 is having major issues with school. She is in her senior year in High school and has such a hard time with fatigue from ITP. And was diagnosed with depression just a couple of months ago. She is enrolled in Cosmetology through high school and a local community college. I find it so hard to know when to push her and when not to push her as far as the fatigue and depression. When to fight and when not to fight with her. Not that I want to fight her but she says cosmetology is her future.
She has missed so many hours that there is no way she will complete her hours by the time she graduates from high school. This means she will have to go back as an adult. That means thousands of dollars. That we don't have. That was kind of the point of her doing it while she was in high school. It's much more affordable that way. She has a 504 plan at school that keeps her absences from counting against her due to the illness. Unfortunately that just doesn't help much in the cosmetology part of it. She has to get her hours in to be able to take state test and get licensed.
I just hate to think that on top of everything else due to this illness now her future dream is at stake. I just contacted the state health and rehab to see if there is some kind of financial aid available that will help her pay for those hours. I just don't know what else to do........
Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006.
Last Count - 344k - 6-9-18
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I don't have the perfect solution to this and I hope that my response doesn't seem too harsh. The fact is that life has to go on with or without ITP. I know it's hard and you don't want to see your child struggle, but for her own sake, she has to take the bull by the horns and keep going.
I am on the PDSA Scholarship Committee and I have read many essays over the years written by teens with ITP. Most of them spoke of the struggles with fatigue and how it took them down for a while. But all of those teens decided that their futures were worth fighting for and they worked harder than ever to prove to themselves and others that they could do it. They pushed themselves through it and made many achievements. None of it was easy.
I understand how depression can grip someone with a diagnosis. Been there. There is help available. Sometimes giving in and not allowing yourself to live can add to the depression and feelings of failure, which is why it's even more important to keep trying.
She is almost an adult which makes it even more important. When adults are diagnosed with ITP, many have children and full time jobs. Due to financial obligations, they have to keep working because there is no choice. They also have no choice but to keep doing whatever it takes for their children, regardless of fatigue. Granted, it is a very real struggle (been there myself), but that is just the harsh reality of it.
I understand that you cannot physically force your daughter out of bed. But there are ways to convince her that her life has purpose and she needs to fulfill that for herself. Maybe counseling would help.
What are her counts? Has she had any treatments lately? Most find that once counts are at an acceptable level (over 50k), the fatigue is not as debilitating.
I understand what you are experiencing. My daughter was diagnosed with ITP the beginning of her junior year in HS. At that time I would say she was dragging. During her senior year her counts tanked and the fatigue was overwhelming, and she also always seemed to have headaches, stomach aches or colds. She never missed school before and I was a wreck about how much school she was missing. I was also projecting the fact that she would need to adapt to college and ultimately a job possibly under the same situations and how would she cope?
How low are her counts? Is some form of treatment an option? My daughter went with Promacta and has done such a turnaround, I rarely ever hear "I am tired" anymore unless she has reason to be tired. Depression is so very frustrating also - does she have an effective treatment or will counseling help? If you have a 504 plan is there any way you can negotiate a "do over" for the cosmetology portion due to her health issues, especially if you are making changes in her health care plan?
Good luck but I would also urge you to try to implement some changes so that she can complete her education. I understand some of what you were feeling, I was frustrated with my daughter at because she wasn't pushing it to the degree I felt she should. And she felt bad because she thought I was "mad" at her when she didn't feel well.
I totally agree with you. It's trying to decide when and how hard to push I have problems with. We have started the new semester off well, I believe. I spoke to her instructor yesterday and we have a game plan to keep her motivated to get there. We will look at options for making up lost hours as the semester progresses.
Her last count was 73 in early December. That is very good for her. She also had a Upper Respiratory Infection and normally her count is higher when she is sick. As far as treatment, she is not much of a bleeder, thank God, so we do no treatment unless needed. Also with the new depression diagnosis we are currently trying to find the right medication dosage for her. I am always reading and googling and researching what I can about the ITP and depression and from what I have seen her case is mild compared to a lot of others. I try to let her know how lucky she is that it's not any worse without downplaying the seriousness of it.
I think yesterday we both got a slap of reality where her Cosmetology is concerned and I needed to vent and this seemed like the right place. Also, to get some good feedback. So I thank you so much for not only the feedback but taking time to really read and respond.
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