Wait and Watch on hold

We took Devyn to McMaster yesterday for a CBC, he went last week and his counts were at 35,000 which I expected because he had just gotten over the flu...but they did go up from 17,000 a couple days befor so I thought that he was on the upswing. Boy was i wrong, his counts were at 8,000. We have always agreed with the hemo that if he went below 20,000 that we would treat. So after 6 months of doing the watch and wait Devyn stayed for his 2nd IVIG treatment. Everything went wll until we got him home and i noticed that he kept on scratching his ear, when i took a look he had broke out in hives. Thankfully after giving him benedryl the hives slowly got better.

We go back on fri and then again on Wed to see if the ivig has done anything for his counts. I was so amazed at how different our experience was this time around....the first time Devyn was only 14months old and it seemed to take forever because the iv came out of his arm 3 times. This time he was such a trooper, i thought because he was only 2 1/2 that it was going to be just as tough but he handled it so well....i am so proud of him and he truly inspiries me. He is my little hero!!!

Deanna

Hi Deanna

Poor little lad! It might be just a blip, so I hope that it bounces back up soon for him - if the IVIG works as well as the first time it would be fantastic.

Try not to worry yourself sick and look after yourself as well as Devyn!!!!!

Ali

Hey Ali,

I really do hope that it is just a blip. Who knows what his little body is trying to do!! This round of IVIG wasn't as nice to him as the first one was, last night he was not feeling well at all and my couch ended up getting covered in vomit He seems a lot better today. We went back to get a CBC done to see where his counts were befor the weekend and were happy to see good numbers so far 126,000. and yes results like last time would be FANTASTIC!!!

How are Dougie and Roger doing?

Deanna

Hi. Deanna,

Thats a good count, and it is good that he is feeling better today. I really hope that it is a temporary thing that he is that low. Reading about the hives etc it does seem that he had a bit of a bad time with the IVIG, so lets hope that it lasts for ages and is well worth it!

Dougie is fine - a few petechiae on his ankles and a few small bruises, so I am guessing mid 30s maybe. Roger is also fine apart from the (daily) nosebleeds which are a nuisance to him. He is being referred to see a haematologist in Liverpool, but I don't think there is really anything much to worry about - they only did his blood becuase of Dougie and if they hadn't done that, no one would be any the wiser about his low white count because he is absolutely fine. Its annoying me that they won't tell me quite what the problem is and what his count is - i am used to being told these things with Dougie, so I don't know why they are being so cagey with Rodge.

Not going to worry myself sick on that front though, cos I've spent too much time worrying about Dougie over the last 12 months. I've run out of worry I think!!!! I don't understand what has gone wrong with my kids over the last year. Before this last year I can't remember when I last went to the doctors with any of them - probably about 4 years ago when my youngest son had shingles. This year however, they seem determined to bankrupt the National Health Service!!!

Wishing you lots of luck with Devyns next count anyway, Ali

Hello, My son was diagnosed with ITP in 2007 when he was 13 years old. For the 1st year we did the IVIG treatments and he got along well with those. However his levels would drop really fast and it seemed like he was going in for an IVIG every 3 weeks. This frequency became very hard on his veins. Unfortunately he has hidden veins like his Mom so we decided after a year to do the watch and wait for awhile.
I have to admit it was somewhat nerve racking for myself, as a mother at first. Worried about him (possibly) banging his head, or falling down,etc.etc
But Tyler isn't involved in any contact sports or any type of rough play so this felt like the best approach at the time.
We are still doing watch and wait with the option to treat when he starts showing symptoms of his platelets being very low, such as plentiful bruising,bleeding gums,nosebleeds , etc.
So it usually works out to be about every couple of months he goes in for an IVIG and that's been working out well. Except now he is 16 and has his Beginning Drivers License, Now I am nervous about him behind the wheel and getting into a fender bender with low platelets
So there's always something!!!
We've been fortunate I must say thought that he has only had to be hospitalized for overnight stays twice in the past 3 years and is healthy other than the ITP.
I wish your son well and hope that all works out for him.
And as the parents of all children with ITP, we pray for remission for each and every one
God Bless!!!
Karen

Hey Deanna - I am with Ali on this one, hopefully it is just a temporary setback with Devyn, and that things will be okay from now on. He is certainly too young to understand all of this stuff, and it must be hard to get him to sit for IVIg.

Hope his count stays up. At least he has his age on his side. Usually, when they are young, it seems like they have a better chance of spontaneious recovery. Hope things work out well for you

Thanks Ladies,

Were really hopeing that his counts will at least stay above treatment levels....we went and got a cbc done a week after his transfusion and his counts were at 204,000. Unfortuantly i'm starting to notice some bruising and signs that he is dropping again
So back on the roller coaster we go....

I hope all is going well with all of your kids...wishing many platelets for all

Deanna