Confused

My mom has suddenly steered away from me having ITP (although that is what the doctor diagnosed) and is now saying that I have Celiac Disease (which has not been diagnosed). I still don't have a hematologist and my last draw was a little over two weeks ago. I've been having nose bleeds, feeling weak and tired, and scatter brained. Since my mom came to the conclusion I have a gluten intolerance, she put me on a diet and I haven't been getting full and I've been feeling nauseous. I've tried talking to her about it but like everything else I try to talk to her about, they end in fights. Does anyone have any advice? :dry:

Brenna:

I've suggested this before, but I'll say it again. Do you have a grandparent or aunt that you could talk to? Maybe you could call your Hemo and speak to him on the phone? I think your Mom is intent on fixing you herself and ignoring the doctor, so you'll have to take matters into your own hands if you are worried.

A gluten free diet can be very tasty if prepared right. Some of the store bought foods, especially bread, can taste bad and made me feel the same way. It's possible to eat Gluten free once you find the foods that taste good. Fruits and vegetables are always good fillers in between meals. If your Mom insists on making you eat that way, try to find some recipes online that you both could try.

Sandi's idea, to talk with a relative, is a good one. If you don't have that option, there's probably a school nurse available if you're in a public high school. She old assist with contacting the hematologist.
Norma

Any relative I talk to tells me to listen to my mom because moms know best. and as for the hematologist, I don't have one anymore. they dropped me as a patient. she said unless I start spontaneously bleeding that she isn't my doctor. I have started having nose bleeds, one wasn't too bad but it lasted for about an hour. i haven't been able to get a cbc lately so i don't know my counts. the only doctor that I am seeing is a homeopath in Nac. if it gives my mom peace at mind ill try things her way, but I really feel like they aren't working and would trust a doctor in a hospital more than a doctor in their home. but she won't listen to that.

I'm sorry that you are going through this, Brenna. It's difficult when a parent has a different idea about what should be done medically. Some people are like that; they don't believe in doctors and traditional treatments.

Norma's idea about talking to the school nurse is about the only option you have left. Either that, or go to the ER and ask to get a platelet count done. If your counts are low, they might keep you and give you treatment.

Are you old enough to drive?

I was thinking the same thing as Sandi. If you go to the ER while having a nosebleed they will likely keep and treat you.
Norma

Brenna - here is a post from a Mom who has a 16 year old with ITP:

My 18 yo daughters platelets are less than 5 (not sure of the exact number). She is currently on watchful waiting. The pediatric hematology group who treats her feels you should treat the child and their symptoms verses treating a number. We consider it very fortunate that with how low her platelet count is her symptoms are more annoying than serious. She did have one course of IVIG when her count dropped under 10, her count went up to 45 but rapidly dropped below 10 again. She had bad headaches for 2 days afterward. They gave her the IVIG basically to treat her heavy periods until BCP could kick in and to make sure they would have a way to treat her in an emergency. The doctors feel that since her ITP is chronic (although her counts have only been this low for about 6 months) she could be facing a long haul and all the treatments have side effects, so only start treatment if the symptoms require it. And they always ask how her symptoms impact her lifestyle. The low numbers were a little frightening to me at first, but I am really glad that this is the approach they advocate.

Last month Sandi posted an article on Treating ITP in Children, this is the approach that Childrens Hospital of Philadelphia also seems to use.

That should help to give you peace of mind. The difference though is that this girl is still under the care of a doctor.

I am. I just got my license about a month ago. That same day i was admitted to the emergency room with critically low blood counts. I was completely asymptomatic. My symptoms are resurfacing though, but they're different. I have an appointment with my new hematologist on thursday so we're waiting until then.

Sounds good, Brenna! Looks like you're finally getting some help.