Should I send him to school?

My son was diagnosed w/ I.T.P. at the end of Aug. He has has 2 treatments of WinRho.His platlet count Monday was 105. Today he his down to 42...thats 63 in 2 days. With his treatments he always goes nice and high ,341 the first time, but then 15 days later he was down to 18. 448 with the second treatment now 42, 21 days later. I am afraid to send him to school with his platlets falling so fast. Does anyone else feel this way? The school is aware of his condition,but I just don't trust him being away from "watchful" eyes!He has missed alot already from being in the hospital getting treatments and from how sick hr gets from the WinRho. I just don't want to send him to school!Any advise would be awsome!!!

Where do your son's counts end up if you don't use the Winrho and what symptoms does he get? Sandi is right when she says to look at symptoms and not counts per se. People can have counts of 10K or less with very few symptoms, and, as I understand it, its only active bleeding which is a problem - not just a bit more bruising or petechiae. There are adults and children around who have lived their (more or less) normal lives for long periods of time with counts of less than 10 or 20K. The advice we've had from the haematologist is that a person could live very happily with a count of around 50K and not have a problem, and certainly 30K upwards isn't considered dangerous. Not within the normal range (150-400K) doesn't mean that its going to cause problems, just that it needs watching. Good luck.

absolutely have to look at the symptoms. How does he feel about it? How old is he? Is he active, physically, at school? If so maybe you could just tell him he has to be a little, ok, alot more careful. Bottom line...it's your call. You have to do what your comfortable with.

I don't know how low he would get w/out WinRho. He was down to 14 and 15 both times before the treatments. His Dr. hasn't even mentioned a "wait and see" as an option. So as soon as he gets below 20, they do a tretment. He gets headaches and tired, but has trouble falling asleep (does that make sence?)Yesterday he was at 42 and has had briusing on his legs and forearms since he was at 105...getting darker now. And his gums started bleeding while brushing his teeth yesterday.When he sees the blood, he gets very upset because he gets sooo sick with the WinRho. AWFUL headaches that only Demerol will take away and of course all of the vomiting, body aches and flu like symptoms. It lasted for 2 days after treatment. I try to keep him possitive by not showing any worry myself....it's hard! I figure if I act crazy, then it will make it that much harder on him. He has always been the "sensitive" type anyway. So days like today are a real challenge with keeping his spirits up. Thanks for everyone being here! This is the best site I have found

For the WinRho have they tried doing a slow drip instead of a fast push? With lots of saline? Some have said it helped with the side effects.
Erica

Yes, and it kind of seemed to work backwards! The first time they did it a little faster and he wasn't sick for as long afterwards. The second time they did it slower, so maybe he would get the headache and vomiting. Well, he got both plus all of the flu like symptoms and the shakes. The headache/aches/nausea lasted 3 days after.So I'm really worried that this time it will be worse. Also she mentioned doing IVIG instead. But this doesn't make sense to me because I was under the immpression that the IVIG doesn't last as long(keeping plaelets up) and has more severe longer lasting side effects than the WinRho. Am I wrong on that?

The treatments affect everyone differently. I wouldn't say that IVIG is always worse than Win-Rho....it depends on the person.

I will say that if a treatment makes a person that sick, it might be time to try another.

As for school, only you know how your son will handle it or how he feels about it. I have a 9-1/2 year old who has had ITP for 6 years. School was challenging at the start, but after we talked with the Principal, Teacher, School Nurse and District Nurse, we got a level of comfort that they know what is going on and what they need to do. Also, I am not sure how old your son is, but since our daughter was so young, the last 3 years we have spoken to all the classes in her grade. We did it to explain why she would be wearing a helmet, missing school etc. The biggest reason was to engage and empower them to help her through this (so know one would think she was "different"). We have had amazing results and have yet to have a problem at school since we started this process.

Hope this helps,

JJ

ffly530,

I was originally diagnosed with ITP when I was six-years-old. The only time I remember missing school was during a Chicken Pox outbreak because I was being treated with Prednisone and as a result my immune system was supressed.

I was not premitted to participate in contact sports or gym class, but did well in swimming and skating as I was able to wear a helmet. I was also given special consideration when changing classes or at recess and lunchtime. I was allowed to leave class a few minutes early to avoid the congestion in the corridors and the risk of being bumped around.

Blessings!
Hauna

Kayla's hemonc has given the okay with school with a count of 30k or higher, we are lucky in that when she drops she goes really low quick and then with treatment seems to come up to a comfortable level. We use a RED YELLOW GREEN light system for her activity level at school. Her teacher, nurse, and the specialists all are aware of her needs, and are very accommodating when she has to have restrictions. I have attached our system if you want to look at it.
Good luck!
Thinking lots of platelets for you
Krissy

My son is 10 and I havn't been sending him to school. He went the first day and that was that. Reasons being are a few...he was already on immunosuppression for his heart transplant, then they added the HUGE pred, then they added and doubled the cellcept which is another IS, so basically the kid is a walking target for germs...no go on the school thing. Another reason is as you say, he initially dropped a count of 10 a day, it was predictable, now he drops like a rock, went from 112 to 6 in two days...our school is very very good, and so is everyone there, but I just can't chance it, my mommy gut says NO! Do what your instincts tell you to do!
Also my son had absolutely NO side effects to the IVig, none at all! He did however have detrimental reaction to the methylpred. He can take oral pred, but has the pred cheeks, is gaining weight and wants to eat constantly as well as the occasional breakdown or out! Other than that the oral pred has been fine. He also had no reaction to the anti-d, well a headache the next day and a bit pale, but thats really it.
Follow your instincts, they were given to us for a reason, keep strong my friend, but I know how hard it is, Im still very new to this myself (diag. end July 2010).

You need to be comfortable with whatever decison u make, if it helps in making your decision, I went to school every day. I only missed school because of the low platelets if i had a doctors appointment or a blood test and even then when i had a blood test, i only missed the first hour or so of school and then i went back after it because i had to have them every day and then every second day for a long time and my mum didn't want me to miss out on my education and also the social aspect of school with hanging out with my friends. It would probally be more benificial to him if he did go to school for the education part, but also because of the social aspect of it,but it is your decision on what u think would be best for him.

Angela - you should check with his doctors. As far as ITP goes, he probably could go, but with the immunosuppression, that's for the doctors to decide.

Look at it this way, if this turns out to be a long term thing, you don't want him to be really behind.

My children are home-schooled because of the ITP. My school district was unwillig to make concessions for it.

Unfortunately like ITP, the whole idea of whether a kid should go to school or not is going to look different with every kid. If you are not getting the necessary support from the school and there is genuine concern, than I say you need to follow your instincts. In our case, we are very lucky. My daughter spends a lot of time low, but the only time she misses school is when she has a doctor's appointment or a treatment. Long ago (6 years) we went to the principal, school nurse, teachers, etc and educated them on ITP (we showed the DVD available through the PDSA and gave them a ton of literature. We explained our concerns and asked if they thought they could help us to keep my daughters life as normal as possible. When she is low she wears a helmet at recess and PE (or does not play PE). The very first day, some kids made fun of her helmet. We quickly addressed it by speaking to all 4 first grade classes and sending a note home to all parents. We simply explained her condition, explained that no one could "catch" it from her and most importantly explained that she was the same friend they had before this happened. We also empowered them to watch out for her because we explained that no one wants to look different, but sometimes you just have to do certain things. Anyway, since those talks she has never had a problem. All the kids and the school have been very supportive and helpful. I know we would not have had all of that just by hoping it would happen. We got to this great place by putting in a lot of effort, a lot of education and a lot sympathetic requests. I understand about the worries. My daughter has been on high dose prednisone and got her spleen removed 2-1/2 years ago so she does not have much of an immune system (her IGG's also get traditionally low). The bottom line is that, like everything (treatments, etc), you just go with your gut, hope for the best, and do not ever second guess yourself after a decision is made (it will only drive you nuts).

Good luck,

JJ