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wait & watch at 26K

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14 years 9 months ago #450 by md_ys
wait & watch at 26K was created by md_ys
My daughter (3&half yrs) has been dx with ITP past 6 mths...IvIG/winRho/prednisone all works only for few weeks and counts down to teens...now the heamotgst wants us to wait & watch & plans on NO treatment till it falls on 10K..But I am getting paranoid dealing with anxiety of her falling or hit by her brothers(they are triplets)...

does the wait & watch help in long run???

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14 years 9 months ago #453 by alisonp
Replied by alisonp on topic Re:wait & watch at 26K
I think this is a decision only you can take, and only you have to be happy with, having taken account of all the risks of each approach.

Having said this, we have really only done wait and watch for my son aged 11, even for the 6 months when he always had counts under 20. He had a couple of goes on prednisolone but they didn't help a lot. I prefer it I think because at least you always know that the kids counts are low, and you need to take reasonable care. You don't get all the ups and the downs produced treatment - my son's counts are varying wildly at the moment of their own accord and I am finding this more difficult to deal with than constant lows.

I think you need to watch the symptoms not the count. As long as the only symptoms are bruising and petichiae, don't worry too much. If she gets more than that, then go talk to the doctor again and make sure you get another count.

If an active, sporty, risk taking 11 boy can do this approach, it is very do-able. As to whether it helps in the long run, well, all I can say is that it hasn't done any harm. Yes, he got bruises and scrapes, didn't look fantastic on occasions - did that really matter? My answer would be no. My son is not better, but his counts are better than they were, and he hasn't had any of the risks or the side effects of treatment.

Deanna (mother of Devyn) is also doing wait and watch with her son who is younger, so she might have some ideas. Hope this helps

Ali

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  • Angel85
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  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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14 years 9 months ago #464 by Angel85
Replied by Angel85 on topic Re:wait & watch at 26K
I don't think a wait and watch approach will do any harm other then make you worry more if your having weekly blood tests and they are constantly low as long as you watch him carefully. I don't know if it will do any good though either. I know i was stressing out more knowing the were low and knowing i had to be careful and knowing if an accident happened that i couldn't avoid.

When my doctor was away in nov last year for about 4 weeks or so and my platelts were between 10 and 20, they were just doing a watch and wait approach and doing weekly blood tests and monitering them, although it is probally easier for me to do this at my age as i understand i have to be a bit more carefull when they are low and it wouldn't be easy for a 3 and a half year old to understand that. If your feeling uncomfortable waiting and watching, you do have the right to insist somemting further be done and what your other options are.

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14 years 9 months ago #507 by nadia
Replied by nadia on topic Re:wait & watch at 26K
We have watched and waited for 9 months Zac(5yrs) lowest count was 37. 72 at moment Dr has told us if it goes under 30 he will start treatment. Although I have worried myself sick about my little boy at the moment he only has to worry about 4 weekly blood tests, and as he doesnt seem to be a bleeder I feel why give him more things to worry about at such a young age, we don't know what the future holds so let him live a little and I'll do the worrying.

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14 years 9 months ago #564 by dbishop
Replied by dbishop on topic Re:wait & watch at 26K
I think that no matter what route you go, you will always question yourself. We too are doing the watch and wait approach with our son Devyn who is almost 2 and a half. At this point i am comfortable with this approach, but no matter what, the worry i have is overwhelming at times. You have to be comfortable with the decisions that are made. If this approach make you very uncomfortable then i would definitly talk to you Dr about it.

I think that many people have benefited from doing the watch and wait, especially if they are not very symptomatic...as we all know this disorder is different in everyone.

Deanna

Mommy to Devyn 3 years old

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