I don't think my doctors know what they're doing..

Okay-my daughter was diagnosed 6 weeks ago with a platelet count of 2. Blood draw is tomorrow-but her platelet level is only at 26. She is on 30mg of prednisilone. She has awful side effects-aside from her face and belly being huge-it's caused blurry vision. I feel like my Peds office isn't very knowledgeable and the specialists will only see her once we get her levels to 70 and then if they drop. I'm very frustrated! I guess I don't want her on steroids if it's not helping. I just don't know what to do? Can anyone help?

Prednisone is usually a first line treatment, so I can understand why they are trying it. The side effects are awful, I agree.

Usually, children are seen by Pediatric Hematologists and they usually step in when counts are down, not when they go up. That isn't making sense to me.

When was her last count and has she had any other treatments?

Her last count was last Wednesday. We've gone every week-here is what the numbers did: 2, 21, 19, 29, 26. We go again tomorrow morning. I can't even make an appt with a pediatric hematologist unless he speaks directly with my doctor. My docs tried to send me to them. How long are they normally on steroids? I just don't know if this increase in counts is good, bad, normal? Also, they just diagnosed her with ITP because she had low platelets. No other tests were done.

I second Sandi - the hematologists manage ITP when the counts are down, not up. My daughter was diagnosed after bloodwork with a count of 50,000 almost 2 years age. The pediatrician talked to the pediatric hematologist at the time who advised a repeat count in two months. That count was 40,000 and the hematologists advised that they should see her at that time to establish a relationship and follow her. It was a good decision because after holding in that range for about 11 months her counts started to really drop.

I think you should INSIST on being seen by a pediatric hematologist. Try to find one who is up to date because the treatment protocols for ITP, especially in children has changed significantly in the last 7-10 years and it will be in your daughters best interest to have the most up to date protocols being implemented.

I'm thinking the hematologist thinks this will just get better on its own. I feel really strongly this is chronic. Is there an official ITP Test? I think if he thinks if we can get it up to 70 and then it goes down-that's when there's a real problem.

Are you within an hour's drive of a teaching hospital? You may find a pediatric hematology group there. Our pediatrician was taking what I thought was a much too casual approach to a newly diagnosed condition, and was planning to simply consult the hematologists by telephone as needed. We, on the other hand, needed someone who regularly dealt with ITP, could decide whether this actually was ITP, and the best plan for treatment. We also wanted someone who could really educate us on our daughter's condition. We found that in a teaching hospital's pediatric hematology group, to which we were referred by a doctor friend.
Norma

Your daughter could have acute ITP. Only time will tell. If she still has it after 12 months, it would then be considered chronic. Maybe that's why they are waiting. The Ped is already doing the same thing that they would.

Your daughter's counts seem to be responding minimally to Prednisone. Some people would be in the 200,000's by now. Once Prednisone is started though, it should be tapered slowly. Counts over 30k are considered to be safe for normal daily life.

Many doctors feel that children can go by the 'watch and wait' method, which really means no treatment. It is becoming more popular as an option for children. Studies have shown that children recover just as often with no treatment intervention and it can avoid long-term side effects. It all depends on the symptoms of the child and the comfort level of the doctor and parents.

Today her levels were 22. So down-not up. I agree with you in that I think the docs think its acute-but if the steroids aren't helping-I want to start tapering her off. She's had documented low platelets since Dec 1 2014. I just feel like I want someone to say-6 weeks of high steroids should increase platelets by x amount-you know?

Jenkorth wrote: I just feel like I want someone to say-6 weeks of high steroids should increase platelets by x amount-you know?

It doesn't quite work that way. Everyone responds differently. Some people get a great response, some get a minimal response and some are in-between. Sometimes the response is later than usual.

As for the other question, no, there is no one test that confirms ITP.

So-in your opinion-do you think steroids are working? Not? Taper her and then watch and wait? Or try a different treatment?

They may be working, but not very well. I'd probably suggest a taper to the doctor.

How are her symptoms?

Her ITP a symptoms seem to be okay. But she loves in a bubble right now. Bruising is slowly going away. Side effects of the steroids are bad.

The doctor just called. They are tapering her steroids and watching and waiting. They basically said IVIG a isn't worth Doing unless she starts getting nose bleeds or gum bleeding. She will only get her blood tested once a month. Does this seem like the right course of action? Also-the docs said she couldn't be active unless her counts are 100. What is the real scoop on that? I found the website that gives numbers-but why is it so different from what my docs are saying?

100k is sort of excessive. Usually 50k is a good number to do most things, but it depends on what the activity is.

There are other mom's here who do the watch and wait and hopefully, they will chime in. Watching symptoms is important; you will know when to step in and get help.

Thank you! My daughter REALLY wants to play soccer. She is NOT aggressive and is even scared of the ball. She's basically too nice to play soccer. Other than bleeding gums and nose-what do I need to watch for?

Sandi wrote: "Usually 50k is a good number to do most things, but it depends on what the activity is."

Injury Rate in Youth Soccer Higher Than Other Contact Sports, Study Finds
www.momsteam.com/return-play/injury-rate-in-youth-soccer-higher-than-other-contact-sports-study-finds

... and there are no helmets in soccer.

The concussion rate alone is roughly one in 4,000 exposures. I am guessing that an exposure is either a practise or a game. For example, in 40 exposures, the risk is roughly 1 per hundred.

Hi. My son has done watch and wait for the last six years or so. He's a very active soccer playing teenager whose count is usually somewhere between 10 and 20. It might seem scary not being treated at first but all the studies say there is no difference in outcome and if your child is lucky enough not to be a bleeder, it's best not to put them through the risks and discomfort of treatment. I would caveat it with saying that you should always see a Dr if you are worried about anything though. Good luck

Thank you so much! This may be a dumb question...but how do you know if they are a bleeder? She had bad bruising on her legs-which is how we found out she had this - but doesn't bleed at all after blood draws.

My 18 yo daughter ws also doing watchful waiting. With low counts she has a lot of bruising and petechaie. If her nose is stuffed and she inhaled deeply to clear her stuffy nose she woukd have kind of postnasal bleeding. Her gums were bleeding with brushing and our dental hygenist got her some kind of special super soft brush. She never had nosebleeds. She is really not a team contact sports type kid but she did take gym for most of her ITP journey.

Her hematologists are very calm and very available. I was very concerned about the side effects of treatments. Her hematologists were also concerned about treatment side effects especially since with chronic ITP it could be years to lifetime of treatment, there is just no way to know. It worked for us because we are 20 mins away from the hospital based doctors and they are available 24-7. I will say that when her counts first dropped I was a little concerned if my husband and I were both going to be away, but as time went on with no problems that kind of went away. Her counts had been sub 10 for the most part since July ( she did get a round of IVIG in August) and sub 5 for like 2.5 months and then eventually she did get some GI bleeding and require treatment. I would still do the same thing again.

I am not sure about soccer though, her doctors say no contact sports with counts under 30,000. Even if she is not an aggressive player she could be hit or knocked in the head or kidney/liver/spleen area and get hurt.

Even with very low counts she had her labs done once a month unless she had a change in symptoms. We saw that doctor every other month and on our non office visit months he call me with the results and checks on her condition.

She had to have high dose IV steroids and IVIG in Feb after some GI bleeding and so far her counts are still up.

Good luck. Just educate yourself and stand up for what you think is her best interest.

I think worrying bleeding is less to do with bruising and petechiae and more to do with mucosal bleeding like nosebleeds or blood blisters in the mouth.

For the sake of your little girl, run run rum as fast as you can towards an Alternative Integrative Holistic Doctor( yes, they are real MDs), and as far away as you can from the doctors who practice traditional medicine. Do a search, they are everywhere. I hope you listen.

That's quite an inflammatory sort of reply isn't it? By all means encourage someone to explore alternatives but run, run, run?? Dealing with ITP is best done by making slow considered decisions in my experience.

I agree Alison