Dougie and Roger

Not really all to do with ITP, but I don't seem to be able to keep either of them away from hospitals at the moment.

Monday, I took Roger in for another blood test. The haematologist from Liverpool just phoned me this afternoon to tell me that although his results are still abnormal, they are a lot less abnormal than previously. ANC was 0.5 and is now 1.1 (think that the lower end of normal is 1.5), platelets were 100 and are now 142, and lymphocytes were 1 and are now 1.3 (I think). Got to take him back for another blood test in 8 weeks just to check that things are still going in the right direction. Haematologist still thinks it is just an after effect of some viral infection neither Roger or I can remember, not worried, and as she says, he is well in himself.

Today I took Dougie to see the opthalmologist because the paediatrician still doesn't seem convinced that the swelling in his knees isn't juvenile arthritis which apparently sometimes effects the eyes. Blood tests were clear, but he doesn't seem to believe them. Anyway, one and a half hours later......nothing wrong, but he's still got to go back in 6 months just to check. Anyone would think that the NHS was rolling in money!!!!

Next Monday, Dougie has an appointment to see the haematologist in Manchester. Hopefully it will go well - he has a few red dots on his ankles, but nothing else. I am hopeful of 40-50ish! - really hope so because he is going on an adventure activity holiday the next week and then the week after that we are going to Greece for our family holiday. I don't want anyone to be worrying about ITP when we are there.

Hope everyone's kids are well - Jordan, Tim, Caitlin, Devyn, Danica...... - and that you are all enjoying the summer break.

Ali

Hi Ali,

Thanks for asking about Jordan. Haven't posted much this summer but we are still around and dealing with ITP from another angle now. Jordan has antibodies to Sjogrens syndrome and rheumatologist (now another doctor involved) has suggested Imuran instead to Rituxan. Which by the way took me 3 months to prepare for and we were going to do it this June and July. Now the hematologist agrees that this is the better route and we are following their advice.
Don't like the drug when I read about it but Jordan wants to do sports and her platelets are hanging out in the teens and twenties without treatment so we are trying it. (its only been a little over a week). Doctor thinks low platelets may be related to her high antibodies to Sjogrens. Otherwise she is doing well and finished summer school. We are going to the beach soon for a break so I am really looking forward to that. Am glad to hear that things are going well for Dougie and Roger both.

Wow, Greece, that's somewhere I'd like to visit someday too, sounds like alot of fun.

P.S. PDSA conference was really good. Went the end of June. Finally met some kids and parents and that was great for us too.

Take care,
Karen
mom to Jordan
diagnosed April 2009

Hi Karen

What is Sjogrens syndrome - I've a feeling I've heard the name, but I've got no idea what it is. That sounds like a bit of a bummer!! I hope that Jordan is ok and that the new medicine works.

The PDSA conference sounds like a good thing to have gone to - if it wasn't so far I might have come along myself. I am really hoping that Greece turns out to be good. I've only just conquered my terror of being shut in a plane, so I'm pushing my boundaries a bit far I suspect - not worried about flying, just about being locked in the plane, stupid eh? Anyway, my kids are all desperate for foreign holidays like their friends, so they are really pleased. And they do trips to see some world heritage site in Albania from where we are staying, so my husband is well pleased too!

Ali

Ali,
Sjogrens is another autoimmune disorder where your white cells invade your moisture glands. Most people who have this have dry eyes and dry mouth. It can also affect your internal organs too. Jordan doesn't have any of the dry eyes or mouth but she did have a bump under her tongue that we just monitored for a while. I took her to an ENT and an oral surgeon and both decided to watch and wait. The rheumatologist took one look at it and said it was typical Sjogrens. Since then, it has gone away. But my aunt has Sjogrens so I wasn't real surprised by the diagnosis, just glad that she doesn't have any other symptoms currently, other than possibly the ITP being one.

Planes aren't really my favorite thing either and they are definitely not my husbands. We tend to do vacations we can drive to for that reason, and also the fact that we own our own business and he is never leaves it for long. Amazing that I got him to go to Vegas for the conference. It was a good break to get away. It was neat how the doctors at the conference made themselves very available to the patients and their questions. I hope Dr. Tarentino didn't get tired of me asking him questions, but he was very nice.
Your trip sounds exciting!
Karen
mom to Jordan

Hey Ali,

Good to hear that the boys are doing good!! Let's hope that Dougie has good numbers next week!!!

I had my little melt down yesterday when I got home from work and saw that Devyn is starting to bruise again. We had three weeks of no bruising at all!!! I was so frustrated and sad to see that his numbers have probably crashed again. I am so greatful that he went up to normal numbers and i knew that it probably would go back down but a small part of me was thinking that maybe this is it maybe numbers will be good from now on. Silly me!!! I am going to wait a couple of days befor we do a test to see what his bruising is like.......we werent scheduled for a test until sept, which would have been a nice break for the little man.

Good luck next week i'll be keeping my fingers crossed for good numbers!!

Deanna

Hi Deanna,

Not stupid you. Every time Dougie's symptoms disappear, I still think, maybe this is the time they won't come back - its gotta happen one day!!! I can't guess counts very accurately by looking at bruises until Dougie gets quite low, but I really hope that Devyn isn't too low. I don't worry very much now until Dougs is lower than 20, but I KNOW I would feel very differently if I was looking after a 2 year old rather than a nearly 12 year old (and I guess, if I knew that a certain level of count meant that my kid was going to get treated - for us it just means being a bit more careful for a few days).

Dougie is at his grandma's this week, and his little brother is away on holiday with a friend, so I've only got two kids - its really quiet in our house. Then the week after next Dougie is at an adventure camp all week doing lots of "dangerous" things, and his little brother is swapping with him and going to his grandma. I am going to have to get used to quiet I think - surprisingly not really enjoying it at the moment!!!!

Some people are never happy!

Ali :dry:

A parent's loving concern never goes on vacation - just the kids - enjoy the moment - they're few and far between - it's ok to relax - grandma's are just as bad and the boys will be spoiled silly.

Ha!

Steve - dead right they will get spoiled silly; Dougie just phoned to say that his grandma had let him stay in bed until 10.30am, and then made him pancakes for breakfast! He was well chuffed. I am enjoying the peace and quiet really, just a bit unnerved by it.

Ali

Although I'm slightly older than the "kids" would she consider adopting me for a weekend? I'd like to stay in bed until 10:30 (but pred wakes me @ 4a) and have fresh, hot pancakes waiting - if it's not to much to ask I enjoy blueberries lightly blended with blueberry syrup?

Hi Steve,

I am sure she would, but North-East England seems like a long way to go for pancakes and a lie in!

I was reading one of your posts about your count dropping - I hope it recovers soon for you.

Ali

I hope Dougie's numbers are good next week so he can enjoy his adventure trip!

Went to see the haemotologist today and can't decide whether I am depressed or not! Things I learnt:

- Dougies count was 34 - totally indifferent! Even though I said that he was on this adventure holiday next week and according to his pattern, he is dropping, the doctor was quite happy that he would be safe. Hopefully he will hit the bottom at some point next week (better if it was sooner rather than later!) and then bounce upwards again

- the haematologist confirmed to Dougie that he shouldn't under any circumstances be playing rugby, or doing trampolining or boxing. This was quite useful given that Dougie has been determined that he WILL be playing rugby next term at high school!

- the doctor didn't rubbish my theory that Dougie's count has a pattern, said it could fit in with another hereditary condition in conjunction with ITP. We are going to leave it another 3 months, and then if it is still happening, he is going to do a month or two of weekly counts to see if they can see it. I found this quite reassuring.

- I mentioned the problems that Roger is having and the haematologist (in Manchester) is going to talk to Roger's haematologist in Liverpool to see whether they can find out what is happening to them both. Its totally illogical that our local hospital sent them to different places! The bloke said that there were things that ran in families that could have that effect, so again, probably useful.

- And finally, while we were out, Lol informed me that he had a tick embedded in the skin on his chest. I imagine it is a Scottish tick as Lol has just spent a week in the Isle of Skye with a friend and his family! The receptionist at the doctors didn't seem to know what to do about it, so having spent this morning at the hospital, we are going to see the GP this afternoon.

Help, get me away from doctors!!!!!

Ali

Urgh! tick removal is horrible - the doctor pulled gently, then not so gently on it, and it eventually came off still wiggling its many legs! It was quite big, presumably because it had been drinking freely of Lol's blood for a couple of days! It was a first for the doctor. Ticks are not that common in Cheshire because it is mostly milking cows and arable land. She said that although she had read about them, she had never seen one in situ, so to speak - and she seemed unnaturally pleased about it!!!!