STRANGE DOCTORS

Just wanted to tell someone about Roger's follow up appointment at the local hospital on Friday. It would be funny if it wasn't such an extreme case of bad bedside manner.

You've got to remember that in between this visit and the last, Roger has been to see the paediatric haematologist in Liverpool who seemed so unconcerned about his blood she had to persuade herself to do more tests! So on Friday, my husband took him back to see the ENT consultant at the local hospital (Roger's nosebleeds have moved up in the world - no more junior doctors for him!). My husband said that they started off the conversation with something along the lines of "Well, we've ruled out anything serious like leukemia......." WHHHAAAAT, who mentioned leukemia!!!!!! Poor Richard said it like they had transported him into someone else's consultation instead of Roger's.

The bad thing is that the ENT department seem to have totally decided that the nosebleeds are a blood problem, so they are waiting for the haematologist to write back to them before they will do anything else. Roger has yet another follow up appointment in 2 months time when the consultant said that he would try to cauterise again if Roger was still having problems. As he is still having 3-4 nosebleeds a week at the moment, I don't hold out a lot of hope they will have gone away, although the hayfever season should have ended by then which sometimes helps.

I am also going to take Dougie to see the GP on Tuesday after the bank holiday if they have a space. He's spent the last 4 days in a lot of pain again from his knees and they are looking very swollen. He hobbles down the stairs in the mornings like an old man. Paracetemol doesn't seem to help a lot; the only thing that seems to make a difference is a hot bath and there is a limit to how much of your life you can spend immersed in hot water! I am really hoping that the results from his blood tests are back, although I've a feeling that they won't show anything specific anyway - if it is this viral arthritis reaction the paediatrician says it doesn't show on tests.

Hey ho - on the good side, he has lots of small blue bruises on his legs, but no petechiae.

Ali :laugh:

You could try a heating pad on his knees. That's what I do when my back is a little sore (I have a bit of osteo in my back). It really helps. Luekemia is the big bad scary word, isn't. Glad the ruled it out. Hang in there, hopefully its just nosebleeds. It happens :side:

Hmmm, Leukemia is a very big and very scary word, and more importantly, not one that anyone has mentioned to us before. And possibly stupidly, not one that either me or my husband had thought about! How could they be ruling stuff out that they hadn't mentioned to us as a possibility????

I am, and have always been, convinced that this is a nosebleed problem and nothing else. But I hope it goes away quickly - he's had three today, including one that dripped all over my nice, light living room carpet and it took ages to get the stain out!!!

Dougie is in a whole lot of pain today, and I just wish I knew why properly. He says his knees feel weak, and he is having trouble doing simple things like getting up from a chair. For the second night running, his dad has carried him up the stairs to bed because he is finding it so difficult. I am definitely going to make an appointment for him with the GP tomorrow, and I don't care if the receptionist tells me that they are full. I am going to be Godzilla Mum! He needs something that deals with the pain a bit better than paracetemol because that doesn't seem to do a whole lot. I felt really sorry for him today because one of my friends was asking him how he was, and he said that it was worse than usual but that it ALWAYS hurt. No petechaie though, and it is two weeks on tomorrow since the last ones, so that is good.

Ali

P.S. Donna, I tried a hot water bottle on him tonight which he said helped - thanks for the suggestion.

Hi Ali,

So sorry to hear about everything that is going on with Dougie and Roger....I really hope that they come to some conclusion on what is going on with them. I am glad to hear that Dougie has no petechia!!! Devyn has not had any since his infusion a month ago UNTIl today he has a lot of bruising on his legs but it seems to be coming and going, so hopefully that's a sign of more platelets being produced....not to mention he is such a super active little man who likes to "run" when mommy says "walk" LOL. We go to the hemo next wed and I hope this visit does not result in another treatment.

All the best of luck!!!

Deanna

Another day, another diagnosis...........

GP immediately said that he thought that Dougie had Osgood-Schlatter syndrome - don't know if that is the right spelling. The way he described it sounded a lot more like Dougie than the arthritis idea, so I am tempted to believe it, especially as Dougie did grow about 5 cm between christmas and easter and the Doctor said it got worse after growth spurts. He said that it probably wasn't being helped by the fact that Dougie has hyper mobile joints anyway. Dougie, Roger and Lol all have this problem which they must have inherited from their dad, cos I am the least flexible person ever followed closely by their eldest brother! Not a lot you can do about Osgood-Schlatter apparently and it might affect Dougie after every growth spurt until he stops growing. He suggested paracetemol and heat packs and having a few days off exercise when the pain gets particularly bad.

Deanna, it must have been lovely for you to have a few weeks off worrying about Devyn! I really hope that his count is ok when you go back for testing. Dougie has enough bruising on his legs to remind me that his count clearly isn't normal, but no petechiae which I am taking to mean that it isn't below 30K or so either. His physical symptoms have been quite consistent over the last 6 months, so I've stopped getting him counts unless he gets a whole load of petechiae when I sometimes get one just to convince him to slow down for a few days. It must be VERY difficult with a toddler - I clearly remember those days of chasing my sons down the street trying to catch them because they had decided that walk meant run! Let us know how the haematologist goes.


Ali

Ali,

I actually thought of that syndrome as I was reading the postings and then saw your last posting where you mentioned it (not sure of the spelling either!). Brady is playing basketball right now and lots of the kids have received that same diagnosis. I guess a bunch of 12 and 13 year old boys are always in the midst of a growth spurt! Anyway - I wanted to mention that the boys who have that pain wear a thin band underneath their knees and it seems to help. It's specifically for that syndrome - the ones I've seen are black and I think they sell them at the regular drugstores, with all the supportive knee/ankle braces for sports. I guess the thin band provides some type of support when they're active, but it may be something Dougie could also use on a more regular basis. One of Brady's friend's did say that he's looking forward to the end of the season so his knees can rest, so I guess that's the best thing. But the band may also help Dougie.

Good luck - I hope Dougie (and Roger) gets relief soon!

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

Hay Ali - your saga still continues I see. Did they ever check Dougie for juevenile arthritis? did they do x-rays to confirm the diagnosis of osgood-schlatter's???