TOPIC:

My child's pedi first tested her platelets by using a finger prick test. It can back low so she tested again using the vein. Kailey has had 3 nosebleeds this week. And one the week before while she slept. She goes to the hemotologist Monday but her blood work was done earlier this month. (We had to postpone the appt a couple weeks. After today's nosebleed, if I wish I could test her to get an idea of what her counts are right now. I have to have her blood work done at an independent place and they send it to a lab due to insurance. Her hemotologist doesn't do blood work in their office but sends everyone to a lab on a lower floor. They get the results fast but my insurance will not pay for it. Ugh!

If there was a way to test at home similar to glucose monitoring, I would not be worried as much. The bleeding is on the side that was not cautherized and had never bleed before.

This question is raised often on here. The platelets have to be differentiated not only from other blood particles, but from microparticles, and their size is relevant, too, so our differential always included the size of the platelets. That's beyond a home test for some time to come. My daughter was almost 13 when her ITP surfaced. If we had a home test, she would have lost some platelets just from her anxious mother always sticking her. It was merciful for her that there was no such thing. How long has your daughter had ITP, and how old is she? Most patients, and, eventually, mothers of pediatric ITP cases, adapt to living not by the numbers but by the symptoms, but that's a really hard thing to do. For over a year, I kept a card in my purse tracking her counts. It wouldn't be of any use, as there is no logical trend in the counts, but I felt compelled to track the number. Eventually, that stopped, and I tossed the card. I hope your kid is one of those who soon bounces out of ITP. Most younger kids do. Mine was deemed chronic, but she eventually started running safer, then, normal, counts, so it can happen. I think the safer counts started at about a year and a half after presentation, and the normal ones soon after. (Back then, I could have given you the count of days until we had a normal platelet count.) I know that ITP can come back, but I hope my daughter is rid of ITP for good. Keep your child as safe as you can, but don't let the ITP issue consume you while she's growing up before your eyes. (I did let it consume me too much, as I was worried sick over my child. I suggest you do as I say, and not as I did.)
Norma

I agree with Norma. A home test is not possible at this time due to the complexity of the process. Also, it is too easy to become obsessed with counts and that would not be good for the parent or the child. Symptoms are more important than the number and if symptoms are bad, the option to go to the ER is always there.

My insurance used to be the same way and I had to go to a lab which did not report results for a few days. Many times the results came back as unreadable due to clumping. That is not very practical with ITP so my Hemo fought for authorization to have labs done in his office with instant results. The request was approved and I was able to switch labs. Maybe you can request that - it would help tremendously.

Thanks for responding. After posting this last night she had another nosebleed and one while she slept. So frustrating. I am trying to be chill about it. We have a busy day today with church and a picnic afterwards. I just hope we can go without another nosebleed. She is my active child loves to play hard. She was diagnosed ITP last year. In February, she was hospitalized for an infection in her intestine and ended up having IVIG and antibiotics.

A little extra vitamin C can sometimes help with vessel integrity and cut down on nosebleeds. (It doesn't help counts, just vessels.) You may also want to get her on some allergy meds at bedtime if her nosebleeds flare up in Spring. Vitamin C helped lessen bleeds and bruises in my ITP kid, who was prone to nosebleeds even before ITP. (Too much vitamin C can cause loose stool, so that's a clue to cut back.) We also used a swab of Vaseline just inside each nostril, to cut down on turbulence, at the recommendation of an ENT, but I'm not sure that tip did much for her.
Norma

Vaseline is SOP (standard operating procedure) here. Sunday the humidity jumped up and she didn't have any nosebleeds. She also takes allergy meds at night and a multi vitamin in the am.

I asked myself the same thing about testing at home mmcnatt. I am a RN and was so much more paranoid with the initial diagnosis but it gets slightly easier as the years go by. I was so in tune in the beginning I could guess her counts by her bruising and behaviour. It is still hard after 4 years but im still very overly cautious when it comes to her. She was 2 years old when she was diagnosed and has a twin brother. They wrestle and the doctors wanted me to keep her in a bike helmet and not let her play with her twin till this went away, needless to say that was not going to happen lol. So im cautious and make sure all the kids and schools are very educated and just have to pray that keeps her safe. We are lucky with our insurance and so far have never been denied. I have a stat standing order from my daghters pediatrician so I can get her a CBC anytime I feel the need. I understand how scary and frustrating it is and I hope your daughter grows out of this. Thoughts and prayers for you and your family.