GUESSING GAME

Monday morning is going to be a bit of a logistical nightmare for my family. Roger is due to see the haematologist in Liverpool, Dougie is due for a normal checkup with the paediatrician at our local hospital and to cap it all, the gas man cometh to service the boiler. I am actually really pleased that my mother in law is coming to stay for a few days!!!!

Anyway we have bets on in our house re outcomes

a) Dougie's platelet count - Dougie reckons in the 20s, I reckon in the 30s. Everyone else in our family is too bored of ITP to guess!

b) Dougie's knees - he's been complaining for weeks now that one or the other or both of his knees hurt, and we've been putting off taking him to the doctors. It follows on from a period where his ankles really hurt. What are the bets on "growing pains" as a diagnosis?

c) Roger - I reckon they will do another blood test and decide that all is back to normal. His dad reckons that they will decide that they don't know what is causing the weirdness, but not be too bothered about it. Crucially, both outcomes involve not EVER going back to Liverpool for a repeat visit (yes, we do realise this might be wishful thinking on our part!)

d) The Boiler - well its ten years old and it keeps breaking down. My husband (glass-half-empty) thinks that they will say we need a new one. I(glass-half-full) think it is good for at least another couple of years.

Win or lose, I've decided that I am going to treat myself to a day out shopping in Chester next weekend - well, you need a break every now and again don't you? Dougie wants a meal out if he wins the platelet bet, and we will all just be very happy if Roger and the Boiler turn out to require no further attention!

Ali

Think I might have lost already!

We've just been swimming. Dougie has petechiae all around his eyes where his swimming googles were, and where he had them pushed up on his forehead for a while he has two massive bruise-like patches. It looks funny, but is probably not a good indicator of 30K plus platelets. Never mind.......

Ali

Ali,
Tim complains of Knee pain all the time. He's never had xrays, but he's convinced he has arthritis in them, and his ped says he probably does. Only 16 and with arthritis! So young to be so old, these kids.

First of all, my guess is 8!!! Is there a prize?? Oh, probably not, whatever!!!

Regarding his knees, he is 12, right? Because he has not been on a lot of medication, it is obvious that it is not caused by that. He is in that "growth spurt" age, and it is not uncommon for knee pain in that age group.

However, he already has one autoimmune disease. Arthritis is also another autoimmune disease, so it is possible. Does he complain of any joint pain in his hands or fingers?

In Tim's case, it is really hard to say because he has so many medical issues, and has been on a lot of meds.

I know that the Decadron gives Danica horrible joint pains, but luckily, is goes away when the Decadron is stopped. Hooray, today is the last day that she will have to take that crap.

I certainly hope that Roger is back to normal. If not, I would really push the "family realtion" issue.

We did not bother taking any blood tests this week. Danica is really getting tired of it, and her veins seem to hurt more when she is on the Decadron. We decided that it really did not matter what her count was, because we are pretty sure that it will drop back down to below 10 once she is not taking it anymore. She is scheduled for IVIg on Friday, if needed, so we will not do a blood test until Thursday.

Best of luck Ali - and do enjoy some shopping - tell your hubby that I told him to give you his credit card!!!

Michelle,

Unless he improves by tomorrow morning, you may be the winner - he has petechiae EVERYWHERE! Legs, arms, stomach, chest, face, back........ Don't think he has looked this bad since the autumn. He is in BIG trouble with me too - he went out to play with friends this afternoon and I passed him in the car later on with his bike helmet hanging from the handlebars of his bike. Needless to say, the bike has been locked in the shed for the next week! My husband is taking him to the hospital tomorrow and he is definitely going to mention his knees. It does only seem to be his knees and ankles, and it does seem to get better as the day wears on, but it is stopping him from playing sport sometimes.

Poor Danica. I suppose that at least that is the end of the Decadron. Thats something to be thankful for. Can you do her blood using a thumb prick rather than taking blood from a vein. Even the children's hospital in Manchester only ever uses thumb pricks so they must be reasonably reliable. I hope that you get that third opinion sometime soon - that and a miracle!

Alison

And the results are now in,..........can you stand the suspense?

a) First prize for guess the platelet level goes to Dougie with a guess of 20 - actual count is a disappointing 15.

b) Guess the knees is probably won by Donna. Dr seems to think that it is some kind of post viral arthritis. He's got to go back next month, so I hope it is better by then

c) Guess Roger's outcome - probably won by my husband. We went, the doctor is testing him for other (Von Willebrands - no idea what that is), but essentially she says just weird blood, not worried about it, he is a well kid. Good outcome, especially since I got soooooo lost trying to find the hospital - NEVER want to have to go back there again

d) And the boiler has been given a spare part and a repreive for another year - so I guess that justifies a day out shopping for me!!!!

50% bad, 50% good - could have been much worse!

Ali

Ali - I always do a blood draw. I am trained to take blood, but I don't do pediatrics, in which a finger or heel poke is done. Therefore,I have no choice but to do a draw from a vein.

The girls I work with would never do a finger poke either - they only do it if they cannot get a vein. Danica has some nice veins, and I do use a very small needle when I take her blood. The veins are showing some wear and tear, and that is why we are trying to do the least amount of tests possible.

Von Willebrands is not so bad - it is treatable. It is where they are missing a certain part of the blood called factor 8, and there are injections that they can get to prevent bleeding.

I hope Dougie's knees improve. Good thing that they are keeping an eye on them.

Ali,
Von Willebrand disease is caused by a deficiency of von Willebrand factor. Von Willebrand factor helps blood platelets clump together and stick to the blood vessel wall, which is necessary for normal blood clotting.

Von Willebrand disease affects both men and women. Most cases are mild. Bleeding may occur after surgery or when you have a tooth pulled. Aspirin and other nonsteroidal anti-inflammatory drugs (NSAIDs) can make this condition worse.

Hope he doesn't have that! Bah!

I don't think that the Liverpool Dr thinks Roger has anything in particular - she just said that to do her job properly she needed to rule everything out. They took about 10 little tubes of blood - Roger reckons that he needs to eat more to make it up! She said that she expects everything to come back clear and she will write to our local hospital telling them to stop panicking!!!! I've decided I really like paediatric haematologists - listening to this woman talking about not worrying about numbers was just like listening to Dougie's consultant in Manchester!

Dougie was told he could just take normal painkillers if his knees hurt too much, but both Dougie and his dad reckon that the Dr said to take ibuprofen, and I am sure that is the one they said not to take because of ITP?????? He's not much of a medicine taker anyway - things would have to be VERY bad to have him ask for painkillers.

Some good news for Dougie this afternoon. A few weeks ago he applied to go on a week long watersports camp this summer, and because of his ITP, we had to get a letter from the consultant to say that he was ok with it. Anyway, today, with his count only 15, he got the letter to say that the camp will have him - I REALLY hope that it is higher the first week of August or I am going to spend a whole week worrying! He is overjoyed though, and its lovely to see him so happy about it.

Ali

I hope they don't end up finding anything with Roger and that he is just a kid who has a lot of nosebleeds! I think almost all the men on my husband's side of the family have trouble with nosebleeds and so when Caitlin had them all the time, we never worried about them. Luckily, she rarely gets them anymore and they used to be a daily occurrence!

Sorry to hear about Dougie's count, but he seems to be one that bounces right back up when he drops. I hope the same happens this time around! I know the feeling of sending your kid off when they have lower than you're comfortable with counts. I've gone to camp with Caitlin as a chaperone almost every year the last 4 years due to this. She has cheer camp again in July and I've told the owner that I will go if her count isn't stable for at least a few weeks. I really don't have to because it is only 45 minutes away and I could drive up for the day each day. I will decide when the time gets closer. One year, I decided to stay in a hotel close by to give her some independence but had all the info to the local hospitals and hematologists just in case something happened. I am ready for the day when I can send her off and the only thing I have to worry about is all the "drama" that happens between all the girls at that age!

I am so cross!!!!

Phoned the hospital this morning to ask them whether they really wanted me to give Dougie ibuprofen. First, got through to a doctor in the children's ward who said that he would be fine having it now, it was only a problem when children were first diagnosed! When I pointed out that his last count was only 15 she changed her mind and said only paracetemol, but told me that I could give him it every four hours which directly contradicts the advice on the back of the bottle. So then I tried the children's centre, and the sister there told me to ring the consultants secretary. I rang her and she said she would get someone to ring me back. So the doctor who Dougie saw on Monday has just rang back, and says that he really shouldn't have suggested ibuprofen for pain relief!! Its a good job I remembered, because Dougie really hasn't got many platelets to play with at the moment.

There is a good outcome however. Firstly I now know how much paracetemol I can give Dougie in a day, and secondly the doctor is going to arrange some blood tests to just check that nothing else is going on. Now I've just got to wait for that to get sorted.........Zzzzzz

Ali

It sounds frustrating getting everyone on the same page with Dougie! Have they done lupus blood work (ANA titer, etc)? Camden has no joint pain, but when his ANA titer came back high, as well as a C-4 level they sent him to a pediatric rheumatologist. We have seen her twice at the Children's Hospital in Seattle and will continue checking him every 3-6 months even without joint pain. I suppose it's just as a precaution given all the autoimmune stuff cropping up in our family, but it does give me a glimmer of peace I'll be praying for Dougie's platelets to go back up quickly and for some resolution of his joint pain!
LaMonica
mom to Camden 9yrs (dx 6/09)

LaMonica, what was Camden's ANA titer? We take my daughter (she is 13) to Seattle Children's also. She does not have joint pain but does have a positive ANA 1:320 and low dsdna, the only symptoms she has is the ITP. What medications are they using to treat Camden?
Has anything worked for him? Thanks for your help.
Emmy's mom

Hi LaMonica

Frustrating is an understatement! I have no idea at all whether Dougie has had those tests or, if so, what the results were. He had some additional blood tests when he went for his bone marrow test, but I don't know what they were. I imagine that they would have told me if there was a problem, but maybe not. Maybe that's what the tests that the doctor wants to do now are??? According to my husband who saw him on Monday, the doctor didn't think there was a connection between ITP and the joint pain. But, this is the second bout of joint problems for him - he had a problem with his big toes a few months ago and the doctor is aware of this.

Maybe I need to ask more questions.......


Ali :huh:

Ali
Camden's pediatrician ordered thyroid tests and a lupus panel that included the ANA titer, so I would assume somewhere along the road Dougie probably had one done?? For us it was to rule out the low platelets being a result of "anything else". The hematologist also did one after the bone marrow aspiration was normal.

Emmy's mom
Camden's ANA was 1:640 in June & August and 1:160 in November. His platelets bounce between 18,000-44,000. He is not on any meds and has not received any treatments. He has an appointment next week with Seattle Children's hematology for a second opinion and more lab draws. We are less than thrilled to be hitting the one year mark with ITP in June :S but also so thankful knowing things could be so much worse!
LaMonica
mom to Camden 9yrs (dx 6/09)

Ali, my hemo told me I could take ibuprofen, that it doesn't actually make your platelets lower, it just makes your blood react differently. I still don't take it often, only if I am in a lot of pain and panadol hasn't worked. I have found something else that works panadine extra which is panadol with codeine and extra codeine. I am taking that for my back cause it is still hurting after my bone marrow biopsy last week.

Ali,
Ibuprofen has mild anticoagulant properties, meaning it reduces the platelets ability to clot. In a child with significantly reduced platelets, this would definitely be something to avoid, since we count on our kids' "robust platelets" to work overtime since there are so few of them. Using ibuprofen puts them at increased risk. I would not use it.

Yippeddy Doo Dah!!!!

Dougie is back on the up. Had to take him into the hospital this morning for some rheumatology blood tests so I asked if they could do a platelet count at the same time. RESULT!!! 44 this morning. I asked because he is desperate to go to the theme park near us, so it looks like it might happen this weekend.

That was the good news today, the bad is that he is walking around like an old man, demanding painkillers for the hurting knees....... Can't decide how I want the test results to come back - find something, or not find something????

Ali

Don't worry too much. Tim has had knee pain forever and his ANA always comes back normal. Hang in there! He does seem to complain less of it, so I think it is better than it was. Glad to see Dougie is on the up.

Thanks Donna. I am not particularly worried about it because the doctor still thinks it is just this post virus arthritis thing. But you never know.... Dougie is in a lot of pain today - his dad had to carry him up the stairs to bed this evening because he just can't bend his knees properly. I asked him to describe the pain to me earlier and he said that today it was like a siren (LOL, I think he means it throbs!) which never went away. He says it is worse when he is tired, but oddly that description also seems to include the mornings?

I don't know how kids like Tim put up with years of this stuff, but its not that surprising that he gets down and cross. It gets to me and I'm not even the one going through it!

Hope Tim's count is ok tomorrow anyway. Ali

So sorry he's not feeling well. That's the worst part, really. They really learn to cope with the "limitations" and even the treatments and such. But chronic pain is difficult to deal with. Maybe some steroids are in order for him, since they are an anti-inflammatory. Might get him through this flare-up and thus the painful period. Here's hoping for a quick solution.

Ali,

sorry to hear that Dougie is in so much pain with his knees....It's so unfair that these kids have to go through all of this!!! But it's great to hear that his counts have gone up!

Hoping for good results from now on!!!

Deanna

I agree with Donna...maybe some steroids is warranted for his knee pain. When Caitlin was in so much pain, I was so thankful for the steroids when I saw how quickly the steroids took the pain away. It could also help with his platelet level too!

Even the rheumatologist suggested doing 3 days of high dose steroids intravenously at one time for Caitlin. (1000 mg each IV) Apparently, if Lupus were able to rear it's ugly head, then this would be the way to try to keep it away a little longer.

Caitlin was in a TON of pain last night...not sure what was going on, but I just told her to try to go to bed and I would document it on our Nplate side effect log. It was in her arm and her leg all the way to her foot. Said everytime she touched it, it feel like firecrackers were going off in her body. Sounds strange!! But after a good night's sleep, she was fine. The pain always happens that way...shows up at night then she is fine the next morning so I try that first before rushing off to the dr and see if sleep helps.