When to worry?

My 11 yr. old son was diagnosed with I.T.P. at the end of Aug. He has had 2 WinRho treatments and it brings his counts up really nice at first (331 the first time and 448 the last time)but it doesn't last long (15 days first time and today is 21) Had his count done this morning and he's down to 42...he was 105 Monday...down 63 in 2 days.I'm just so worried about what I should let him do? Should I let him go to school? Should I let him run? I see alot of people on here whos kids are in the 20's and 30's and it seems that they still let them do all kinds of things. How do they handle it!!!! I'm constantly terrified that he's going to fall or get pushed down or get cut and die!!Any advise for me?

Fly:

First of all, you have to look at the symptoms. You can tell a lot by that; not just what his counts might be, but how his body is handling whatever count he has at the moment.

Second, it's very unlikely that a person with ITP would die from a cut, even with a very low count. Any type of cut or abrasion should be able to be controlled with pressure on the wound. If it persists and won't stop, medical help would be wise. If he'd fall or get pushed, the real danger would be hitting his head. Counts over 50 should be safe for outdoor play, even lower if he knows to take it a bit easy.

It's hard not to worry, but he has to be a kid too. The great news is that your son can get his counts up with treatment, so he has those times when you know counts are good when he can play normally. When counts are on the way down, he'll need to be a bit more careful.

As for school, I'd ask his doctor, but I'd bet they would tell you to let him go with possible gym restrictions when counts are down.

Oh, there is a good guide regarding sports in the Newly Diagnosed Section. Definitely worth reading.

Thanks for the info His Dr. doesn't seem to take my fears seriously and I don't get any detailed answers from her. I understand she is a busy woman and I.T.P. isn't as serious as her cancer patients, but sometimes I feel we are "overlooked" ( maybe not the best word for it) when we are there or I have a question.This is the only place I have found that gives me any answers or any real insite to this disorder.I live in a small town and there are no other cases of I.T.P. here...so noone to talk to. Even some of the medical professionals I have come in contact with here give me that weird "huh?" look when I say he has I.T.P.! I have had to explain it ALOT!

Hi Fly

I am one of the people who lets their kid do all sorts of stuff with counts of 20-30!

When my son first had ITP, I used to worry about pretty much everything, and (if you look back through my posts) I still have moments when it drives me loopy with worry. But at the end of the day, I try to remember that my son is still a kid and needs to get on with being a kid, regardless of my concerns. At the beginning of ITP, he had a lot of restrictions in terms of sports that made him very very unhappy. Over time, and with the benefit of knowing that he has very few symptoms beyond petechiae and bruising, we've relaxed those considerably, and now, we make sure that the relevant people (sports teachers etc) know he has a problem, but we only restrict what he does under about 20K. He shouldn't ever head the ball in football (soccer) and he doesn't play rugby or trampoline, but thats about it in terms of things he isn't allowed to do. We've even been to the theme park with a count of around 40K.

I've found that nurses particularly can over-react to low platelets - I remember a nurse completely freaking out about my sons 1K count and telling me to keep him in bed! The drs we've seen have been more sensible - with the same 1K count, the doctor was happy that he should continue to go to school, but he was only allowed to walk around the playground at break rather than playing football. He managed the whole of the initial six months with a count under 20K only missing school because of hospital visits. Unless your son has a lot of active bleeding symptoms, I would guess that he would be fine at school too. Ask his doctor and then make a decision, because you have to be comfortable with whatever you do.

I've never met anyone with ITP either, so this board has been a huge source of help to me and its still invaluable. But the biggest help to me was something my son's haematologist said, which was to consider ITP as a risk factor not an illness - ITP increases the chance of a bang on the head being serious, but it doesn't mean that you are invariably going to get an inter-cranial bleed. Just to prove this, my son has occasionally forgotten that he's not allowed to head footballs, and he's been fine!

I hope that your son's counts improve soon anyway, but in the meantime that you are able to relax a bit!

Ali

Hello! I replied to your other post before I saw this one. Sorry. I just wanted to say that I can relate to the being overlooked feeling. I am the one with ITP, not one of my children. The nurses are really good with me, paying attention to all that I have to say but the doctor is another story! I sometimes feel like I'm wasting his time with all my questions and comments. I feel the same way about ITP not being as serious as cancer, but you know, ITP is still a real thing that plays with our health and emotions. I don't think it's right to try to minimize it in our own minds. Wow, I guess I need to start living what a type here!
Have a great day, stay strong.

Thanks everyone for the feedback and support We will be going back for another treatment tomarrow He gets sooo sick with it.I was thinking of homeschooling....but now I will talk with his Dr. and see what she has to tell me. It is truly hard for me to relax and not worry, but it has only been 2 months since he was diagnosed.I'm praying that we won't have to go through this too much longer, but regardless I'm going to have to TRY to ease up and "let go" a little. Does anyone elses child get really sick with the treatments? Anything help? I think his bad reaction to the WinRho is one of the hardest things about this.

Hi -
Sorry to hear you're having a rough time of it at the moment. I may be too late for this treatment, but thought I'd tell you what we've found over the years to help with the treatments. My son has had ITP for 8-1/2 years and has had WinRho and IVIG numerous times. Both treatments make him sick, but WinRho makes him less sick, so I'll tell you our experience with that.

Good hydryation is one of the keys for Brady that helps lessen his sickness from WinRho. The day before the treatment, we try to concentrate on keeping Brady really well hydrated - gatorade, water, juice boxes, ice pops. As for the day of: Sometimes people talk about a 5 minute "push" with WinRho, but we insist on a slower (45 minute) infusion. Before the infusion, Brady receives a saline solution via i.v. and he takes both Benadryl and Tylenol by mouth (he says that the Benadryl burns when they put it in the i.v.) After the 45-minute infusion, Brady receives more saline for about an hour before we leave. Once we're home, we continue the Benadryl and Tylenol as scheduled for the next 24 hours and contine to keep Brady well-hydrated. We also make him take it easy for the rest of that day and night.

In the beginning, Brady would get really sick, but now he'll just feel kind've tired and a bit headachy for that day. One other thing that's been important: we switched doctors a few years ago and she recommended using an anti-D product called Rhophylac, rather than WinRho. I'm pretty sure that WinRho is a specific brand of Anti-D, as is Rhophylac. Anyway - Brady's doctor said she has had better luck using the Rhophylac anti-D product with kids that have bad reactions to WinRho. It made a big difference to how Brady felt and it also lasts a long time for him. Since the switch, his platelets seem to hold better: once he went 18 months between treatments and it's usually no less than 9 months. (Just for history purposees I should mention that in the beginning (first couple of years) we had to treat him every 8 weeks or so because his count would fall below 15k and he'd get bad nosebleeds.)

Hang in there - and don't get depressed by Brady's 8-1/2 years dealing with this. I've seen hundreds of kids come and go off this site during that time, so your son stands a good chance of being one that deals with this and then recovers. Also - Brady now only gets treated about once a year and gets counts every 6 months or so. Basically, we'll get a count when we're going to do something (like go skiing) where he needs a decent count or we'll get a count if he gets a few bad nosebleeds. He plays flag football, basketball, rides his bike, uses his longboard, goes wakeboarding, tubing, etc., so he basically leads a regular, active life.

Good luck with the treatment! And I hope your stay here is short.

Beth - mom to Brady (age 13, diagnosed 1/18/02)

I can completely understand your thoughts and worries, especially when you do not feel like you may be getting the proper attention. My daughter was diagnosed 6 years ago. The first 6 months we were in one state, at one hospital, than moved and have been with our current doctor for 5-1/2 years. Sometimes you do not know that something is not the best situation until you find another. The first 6 months her doctor did both Oncology and Hematology so she was put on the back burner. Our new doctor does purely hematology so we get a lot of attention. I am not telling you to go elsewhere, but what I am telling you is that you are your child's biggest advocate. If you are not comfortable with the medical attention, than it is your right to make sure that you are comfortable with who is doing the treating. It is a little bit of a slipper slope to always figure out what is right, but the best rule of thumb is to trust your instincts with all aspects of this condition (activities, doctors, etc). Hang in there and know that this forum is here to help.

JJ