Dougie has appointment with the haematologist.....

Wow, you are young Leat! I have a big birthday next year and sadly, its not 40! On the positive side though, my eldest son will be 20.

Young at heart Ali.
Good luck tomorrow. Hope the rain stays away so kids can get more Vit D.
Le'at

Don't know what its like in London, but its poured down more or less all day in Cheshire!

Absolutely bucketing. Have to collect from school in half an hr. UGH

Sorry for the quick insensitive message, just a bit rushed. How did Dougie's appointment go?

Hi - keep us posted about Dougie, please, Ali. Really hoping that goes well


Le'at, you are the young one here. I'm with Ali on that score! I remember being in college, driving across the country, and making my friends wake up early so we could watch Di and Charles get married.

It's raining in the US too. Climate change: it's always wet here in spring/summer now.

Firkins and Leat

Unfortunately, there is nothing currently to update you on. Got tests done, they are being sent to Geneva and we get the results early next week. I hope they come back ok, but if not, we will just have to reconsider the situation then - its not the end of the world. Didn't bother to get a separate platelet count done because I dont' think it would tell us much!!!

Its rained so much here today, just non-stop. Oh well, its good for the veggie garden!

Firkins - I also remember exactly what I was doing on that day - I was in between sixth form and university and I had got a job working on an archaeological dig in Yorkshire, digging up a roman camp. It was kind of paid volunteer work and we spent the summer camping on a field next to the A1. I was never as fit as I was that summer We worked until about 3 and then we went to a street party near where the dig was. Good memories

:laugh: Yippie... It's stopped raining. The sun is trying to come out.

Hey... I remember Di and Charles wedding...well I remember her dress. Couldn't work out how she could walk and do
a U-turn with such a long train.

Gosh, why Geneva? Can't results be done nearer?

I always wanted to go on an archeological dig. I used to think it would be great to dig up some treasure, until I realised its very tedious work and you are unlikely to find anything most of the time.

NOW THE SUN IS OUT

Boo hiss, its still pouring down here!

Tests go to a central laboratory in Geneva because thats where the drugs company is based I believe - they are all done at the same place for consistency. I could have asked for a local platelet count but it didn't seem to add much.

I think your perception of digs is generally probably correct, but the dig I was on was actually quite 'exciting' in terms of finds - we would get trays and trays full of pottery, coins and bones every day. The best was a skeleton in the corner of one of the houses with a spear head still in it! There were also burials complete with jet necklaces etc. Initially they thought it was roman, but I think they eventually came to the conclusion it was a settlement of 'camp followers' as the buildings were too untidy to be roman - all the pottery was roman though as well as some of the coins. It was between Catterick RAF Base and the A1.

Sounds amazing. Maybe one day I will be organised and arrange a trip in the uk rather than Israel. So the kids can see the difference between the excavations.

Bw
Le'at

How do u do that bit at the bottom of your txt where it states the status of your kids?

Go to your profile and edit it - the board signature bit is in the Forum tab

Thanks

OK, I am bored with this treatment malarky already and he hasn't taken a single tablet yet!

The nurse phoned me today to say that his liver results were still out of range, so we have to wait for another few weeks at least to retest and even then they may still be out and he can't start the tablets. His platelet count was 12.

It seems like we have invested a large amount of time and emotional effort into this, with no result. I am remembering why I liked not treating him, and his disappointment is just immense. I am not sure that I would want to go through this again with another drug - rituximab is the only other alternative at the moment. Maybe I am a bit of a wimp, but as his mum, I find it easier to deal with a constant low number than the ups and downs.

Going to go and have a glass of wine for purely mood restorative purposes of course!

Ali -- UGH. I am so sorry. I totally get how the hope/expectations are harder for both you and Dougie. Especially as so much has gone into this -- the back and forth, Dougie's hope for it, this frustrating liver thing. I'm glad hisnumbers aren't lower, though, and hope he is having some fun. Sending lots of prayers as you all sort out what you will do.

best, Firkins

Hi Ali,
What a pain. I'm so sorry for your disappointment and frustration. I must admit, I have found it much easier not knowing the count rather than knowing. Our day of finding out is tomorrow.

How does Dougie feel about it? Is there anything you can do to help improve his liver results ie. vit/mineral supplements? I really feel for you both. Have you tried the Nettle Tea and Manuka Honey idea or the Papaya leaf extract that some have been talking about on this forum?

I pray for this horrible ITP to go away and for you all to have peace of mind
Best wishes
Le'at

Thanks Firkins, things ALWAYS seem better after a glass of wine! Not going to think about what to do until after the doctor phones which I think will be towards the end of the week. In the meantime, Dougie is determined to enjoy hot chocolate for supper every night - you can't take the tablet anywhere near any calcium rich food. See, there is a silver lining in every cloud!!!!!:laugh:

Leat, I think thats part of the reason I don't like this trial - I don't like knowing his count all the time. I mean, I sort of know his count anyway from his symptoms, but I hate testing because you sort of overconcentrate on it. Fingers crossed for Yael's test tomorrow though - let us know

I am jumping for joy! And can't reach Yael as she is on a school trip, RAF Museum.

Just got her platelet count 165k :laugh:
Can't believe it. She can go on all school trips which I'm sure she will be extatic about and participate in PE which she won't be extatic about. Let's hope her platelets stay that way.

Thought you might be interested in knowing that the celiac test came back negative but she is mildly intolorent to lactose. Don't know if that has/had anything to do with ITP or her seasonal excema or her hayfever. All very strange. I have not kept her off milky products just reduced her intake a bit. And we are eating healthier food...used to eat lots of Tival processed food.

Hope all your platelets go up too
Best wishes
Le'at

Le'at -- SO happy for you and Yael. Fabulous news! I went back through the thread and I'm thinking you have not given Yael ANY treatments -- is that right? (Sorry this foggy brain can't remember correctly). So I'm really saying it sounds like hers might be the acute kind and maybe she will be saying goodbye to ITP. That would be the best of all news.

We get a CBC today for Mia. We leave on June 26th for Spain. I'm nervous about flying if her numbers aren't "good." I don't know what I mean by "good" exactly. But I do remember Ali saying Dougie's numbers went down once on the plane. Mia went to see her grandparents in April -- Left at 45K and 5 days later came back by plane at 3K. I really don't want that for so long a plane ride and in Spain.

ALI: any recc's on levels that are safe to travel so far away? I'll search the site.

I think we will have an ivig treatment (ugh) next week, about a week before we leave. Time to get her numbers up and recover from that awful treatment. But we really want her to enjoy Spain and for all of us to go. Did buy very serious trip insurance, however, just in case. Mia did break a toe, though:angry: and is hobbling around in a boot. She just can't catch a break. That said, I'm seeing in her such unbelievable grace, courage, and dignity. Takes my breath away.

Hi Firkins,
Yes, no treatment, just panicked when it got to 2k and changed her diet by upping vit k and vit c. The haematologist wanted to take the watch and wait approach. You are probably right it was acute. Still because of her age I was concerned ITP would be with her for a while. I'm not very good at being patient. I am aware it can come back but I'm staying positive.

Sorry to hear about Mia's toe...what a nusense. Does she have it straped? When is she likely to be walking more gracefully?

Hope her Counts have gone up.
Le'at

Hi Leat, that is such brilliant news. I would think that they would keep an eye on her for a few months yet, but to go that high that soon is probably a very good sign that it may be acute. What great news for the summer!

Whoops, I just missed Firkins' comment about flying. When we flew for the first time post-ITP, it was only a 2 or 3 hour flight, and the doctor didn't seem too bothered about what his count was. We've flown twice since then too and his counts will have been about 10-20 each time. Personally, i think for a long haul flight, I would be much calmer with something nearer say 30? There is so much conflicting advice out there about flying though.

Have you tried asking Mia's doctor and/or the airline?

Hi Ali, apparently they are not keeping an eye on her. I did ask if she will be having another blood test within six months to a year just to check the platelets are stable. The response I got was no need, ....."in all my time as secretary to this haematology department, for 20yrs I have not experienced any child who has come back because their platelets have dropped again. The Dr. Will be sending you a letter."

So ther you have it....it seems the haematologist has finished the story and closed the book. Hope she is right.
Best wishes
Le'at

Goah, they must be confident! Well, I have heard of children who recover and then drop again, but you know what to look out for now, so if you are unlucky enough to have that happen, you would know what to do. Hope you have a lovely, ITP-free summer!

Ali

Gosh, not Goah!!!

Thanks Ali,
Quite right, I now know what to look out for.

Wishing all your ITP worries away.
Le'at

Hi ali and le'at,
wow! well, Le'at, there you have it. As a mom, I'd certainly be looking out and asking my pediatrician for an occiasional blood test but maybe that's just the uptight American in me! I want to say "congrats, you've graduated from ITP" but I don't know why the months on this board make me a bit reticent. STILL -- fabulous news and may that secretary be exactly right.

as for mia -- she's at 20 this week! Nearly a party, I think, and holding steady. But it's not enough for us to feel confident in flying to Spain so i guess we'll be scheduling a treatment for next week. As excited as we are for the trip, REALLY wish we had some more time -- just to see if they will come up without a treatment, not to do another ivig, to stay away from iv's, hospitals and even our beloved hematalogist.

Today, though, is the last day of school and we are having a graduation party from 8th grade for her older sister -- class valedictorian. (I can brag here, right? since I refuse to say anything on fb or even family broadcasts!) Very proud of them both.

Best to all -
Firkins

Wow, this whole eltrombopag thing started nearly three months ago - and Dougie's still not taken a single tablet!!!

He has another appointment on 13th August; what I think will be a final chance to get a normal set of liver results before we give up on this treatment. Not sure I have any confidence in the results being ok, but we will see......:lol:

Ali -
Just wanted to say that we'll be thinking of you in August. I hope the appt. goes well, liver test is fine and Dougie can start the trial. It would be nice for him to start back to school in Sept. and be at a stronger number. We're in the throes of our summer holidays and enjoying every minute of it. I hope you enjoy yours also!