So bored with all of this!

We took Dougie in for a test today and the hospital phoned this evening to say that his count was 5. He's got very little bruising, a bit of petechiae, but not a lot - I only took him for a test because he sort of "looked low" (can't explain exactly why).

He had a nosebleed on Sunday but it only lasted 15 minutes or so, and it wasn't that bad. Other than that, he's had very little in the way of symptoms. He seems to be getting fewer and fewer symptoms as time goes on. Which I guess is basically good, but is also really, really annoying because I can't tell what his count is reliably anymore - so much so that I've let him play football all this week (and I don't think either of us will be confessing that one to his consultant!).

The only good thing about all of this was the funny call we got tonight from a doctor who clearly knew nothing about ITP and was really panicked by Dougie's count - I was sat in the pub with my mobile telling him that no, I didn't think I needed to bring Dougie into the hospital tonight, I didn't think a platelet transfusion was a) necessary or b) appropriate, and I would call his consultant tomorrow.

I'm just hoping that this is the last "down" of the ITP ride!

Ali

Went to see the consultant today and Dougie's count has risen to 15 which is good. He is going to book Dougie in for a trial of IVIG in early January to see if it works, and then probably he would need another one before his skiing trip in early February. I am not totally happy about this, but it seems like the least of the evils available. If IVIG doesn't work, I think he would be on steroids again for the trip (not so bad, because although he only responded partially last time, he didn't seem to get the side-effects either). The consultant says he only needs to hit 30 to ski - it seems low, but I guess if its ok for footie, its ok for skiing. He is so looking forward to it, I REALLY hope that the IVIG works!!!!!

Ali

Ali,

Sorry to hear that Dougie is low again. Brady doesn't get bruising or petechia when low, unless he gets a good knock in a basketball game or something. But when he's under 15 or 20k the nosebleeds usually start, so that's an indicator for us.

Brady had IVIG many times. It worked really well for him and he would get at least 8 weeks out of it. I just wanted to mention some precautions with IVIG. You may remember them from other people posting, and of course these are all based on Brady's experiences but to lessen side effects you may want to: 1. Hydrate, starting 24 hours before the infusion. Water, Gatorade, juice pops, anything. Before the drug infusion, while they have the i.v. in, our doctor also gave Brady saline solution to continue with hydration and we continued with water, etc. for 24 hours after getting home 2. Ask the hospital to infuse SLOWLY and then even slower than that. It's not just a matter of them tolerating the drug while it's being infused, but the slower infusion seems to really cut down on side effects. 3. Pretreat with Tylenol and Benadryl. Continue during the infusion and for 24 hours afterwards when you get home.

You should also plan on having Dougie lay low for a day or two after the infusion. Who knows - he may bounce out of the hospital and have no ill effects, but it's good to plan for a couple of calm days and then be pleasantly surprised.

Good luck - I hope his counts skyrocket (safely) and then stay there throughout the wonderful ski holiday!

Beth,

Thank you, I will be printing this out and taking it with us. Fingers crossed it works!!!!

Ali

Hi Ali
Re: less symptoms, it seems that as time goes on their bodies learn to live with low platelets. They actually clot better than a normal person would on those low counts, and so the symptoms definitely decrease.

Also, re: IVIG, glad you are getting some treatment. Has he had IVIg before? For some kids it can bring on a remission for a time. It worked really well for Tim the first time he used it...remission for almost 2 years! But now of course he is refractory to it. Re: pretreating, also request solumedrol by IV...it helps A LOT. Solumedrol, tylenol, and benadryl are a good pretreatment coctail.

Solumedrol is methylprednisolone. Seems a bit drastic. What sort of dose do they give?

Well, I really hope it works too! He is getting it on January 10th, so I guess we will know by mid Jan whether or not it does.

I am particularly hoping it works because I've just spent the afternoon at A&E with him. He slipped on some mud at school and hit his leg on a bench. I got a phone call at work to say that I needed to collect him because his leg was swelling alarmingly. Over-reacting as usual I thought........but not this time. When I got there, it honestly looked as though he had developed a second knee on that leg. I had no idea that people could have bumps which were raised by 4-5 cm. I keep telling him that the aliens are going to break out of it anytime now! Got it xrayed and its not broken, just a huge haematoma which covers most of his shin. I can't decide whether its still growing either. Its causing him a lot of pain and he can't really walk on it, so he's not going to be able to go to school tomorrow.

As for the pre-meds...........its the NHS, so I think he'll be getting what they give him, although I may suggest some if they don't. The nurse did say that they would be giving it very slowly as its his first time, so it will be over 6-7 hours.

Ali