Dougie has appointment with the haematologist.....

......next Wednesday to get the blood tests done that he needs to start on the eltrombopag trial.

In rough terms, Dougie is 95% convinced he wants to go ahead, and I am probably about 50% both ways. But its his body ITP is affecting, so as long as he has listened to all the information ok and is still happy to go ahead, I think my opinions should probably take a back seat unless I have really well founded concerns. I think my reluctance is probably due to the fact that he has done well for so long without doing anything much at all. I can see that he is very frustrated with the situation though. If his count hadn't been so low for the last 18 months I wouldn't even be considering treatment, but he's mostly been under 15 for all that time.

He is covered in big raised bruises again this week, so I am guessing his count is right down again. I am also noticing the last couple of weeks how completely tired and grumpy he is!!! I've been telling myself its probably normal teenage moodiness, but the more it goes on, the more I think it might not be. WHen he had his one and only try of IVIg, he actually noticed himself that he was getting very fatigued as his count went down - I think he may have got so used to feeling tired that he doesn't notice it most of the time. So if he gets a higher count out of this treatment, it would be lovely if he actually felt good all the time (I certainly hope that it is that rather than teenage, because if not, he's only 13, so there is another 6 years to go with no hope of reprise!!!).

Fingers crossed!

Ali

Hey, Ali -

Good luck with everything - the treatment is at least worth a try if Dougie's up for it, like you said. I think that nobody (kids or adults) realizes what a toll it takes - these low counts and all the ensuing concern - until the count is higher and there's relief and no restrictions! I wish he could get higher without treatment but at least eltrombopag seems pretty low-key, especially the no i.v. part!

The grumpiness is probably 50/50 ITP and normal teenage stuff. Well, you know - you've been through it before. I've been amazed my two times - it seems like I have a sweet little boy one day and then the day they turn 13 they get moody. Luckily it all evens out eventually!

We haven't checked Brady's platelets since December and he's playing in a really competitive basketball league right now. The other night one of the boys got a hard elbow to the head and is out for the season with a concussion. Stuff like that scares me and renews my wish for normalcy but I'll take the semi-normalcy for now...

All our best and we'll be hoping to hear good results from Dougie soon!

And today's count was....................a magnificent 11. At least he made it into double figures eh!

The study for elthrombopag for children is approved, so we had a long chat about it. Dougie isn't that happy about the fact that it involves nearly 9 months of weekly blood tests which have to be from a vein (rather than a thumb prick), and to be fair, I'm not ecstatic about driving a 100 mile round trip to the hospital each week either. I am also really worried about the potential side effects however unlikely they may be. However, I do think its the best option that he has available to him at the moment. I am going off the idea of rituximab and its not like living with a count of 11 is risk and problem free either.

So we go back on the 21st to get the blood, eye and other tests done to start later that week or early the next (fingers crossed). Just got to hope too that he doesn't get the placebo!

Ali

Good luck with this Ali. I'll be thinking of you and Dougie. I learn so much from the grace and pluck with which you handle this, the freedom you give Dougie, and the choices you make.

I'll be thinking of you both! Good luck with the driving

Firkins (mia's mom)

Blood and urine samples got taken today and sent to Geneva for testing (why not Mancheser ???). He goes back on Wednesday for an eye test. My car is going to be able to drive itself to Manchester Children's Hospital if we go any more often!! :silly: If everything is ok, the hospital expect to start him on the tablets on Wednesday or next week at the latest.

Dougie has great expectations of this drug. I am trying hard to keep him realistic - firstly he might get the placebo for the first 3 months, secondly, he isn't very tolerant of any side effects so I wonder if he will stick with it, and thirdly it only works for 4 in 5 people.

I am really hoping that it gets him to some reasonable number by the summer holidays though. I'd love to just be able to arrange a trip to Alton Towers or send him off for the day on his bike with friends without considering his damn count!

Hope everyone is ok

Ali

Hope everything go well for Dougie

Sending prayers and good luck to Dougie and you, too, Ali, as you move ahead with the elthrombopag (sp?). Hoping for a summer of worry free biking and escapades...

Mia gets a CBC today. She's been okay for 3+ weeks after the awful ivig treatment. Her reaction to that was a bit scary & sent her back to the hospital for 2 days (much longer than the treatment itself). Her Dad & I are agreed after that to watch w/ no treatment re: numbers & our hemo okay with this, too -- interestingly, it's Mia who is more concerned about this plan. I do wish she felt better generally -- so lethargic and tired ALL the time, it seems. Is this "normal" for some ITP'ers? maybe she is just a growing 12 year old?

Re: MOOD SWINGS: my other, non-ITP daughter is 14 and it is NUTS living with her. I adore her, of course, and she is an amazing kid. But when those hormones start raging -- watch out! I taught high school for 20 yrs but nothing prepared me for living in a house with my own hormonally deranged teen. I do think the mood swings, the irritability, the "nuttiness" out of nowhere can be a very normal part of being a teen and not necc'y the side effect of any meds. Raising teens is not for the faint of heart.

Hoping all keep platelets in the "party" level -
best,
Firkisn

Slightly gutted! One of Dougie's liver function tests has come back marginally out of the reference range, so we are waiting for a fortnight and then he will get retested and hope that its gone down to the right level. If not, I guess we will have to rethink our strategy again......

Let us know how Mia's count is - Dougie would really sympathise with the lethargic and tired thing, although I suspect that at least a percentage of his is due to teenage unfortunately!

Ali

ugh. so sorry for dougie and the liver test. I will send all good energy and prayers for it to be in line in a couple of weeks. I know he has his heart pretty set.....

.....on a positive note, his count was 17

Hi Ali, Sorry to hear about the liver test not going as planed, I hope Dougie is not too disappointed. Glad the platelets are up a bit. Will be thinking and praying that they go up further.

Firkins, when Yael's platelets were on 6k I found she was definitely more tired. She usually gets to sleep around 10. When her counts were low she was asleep by around 8pm. Getting up for school took longer as well. I wish Mia's platelets well.

Leat

Hi - There's a new study out apparently (saw on PDSA facebook) page that now "proves" ITP patients get tired. As many posted on the fb page, "Could have told you that!"

Mia's platelets are fine'ish (70) but clearly headed down (from high of 325 after ivig). The ivig lasted 4 weeks but I'm not at all sure she has FELT any better and maybe even worse (esp at beginning as the treatment was really rough). We are in no rush to treat again -- but will if they go very low so we can feel safe going to spain for 2 weeks.

Mia wasn't happy about 70 but I told her (using Ali's great math) that 70 was good for 2 parties and that cheered her right up. She went to friends for overnight and played in a tough basketball tournament the next day. With no signs of slowing down.

High platelets all and hope Dougie's new tests go well!

Firkins

Where are you going in Spain? I am jealous - the kids here have got another week to half-term and then another 6 weeks after that until the summer holidays.

You are reminding me of a holiday we had in the Costas about 6 months into Dougie's ITP. His count had been low (15ish) beforehand and seemed to take a nosedive on the plane, so by the time we got there he was bruising like mad. He had bruises EVERYWHERE after a few days in the hotel pool and playpark. I seemed to spend a ridiculous amount of time that week trying to persuade him to put on t-shirts and long shorts to try and cover up the bruises. I was seriously VERY concerned that someone would call the police or social services because he looked terrible.

Anyway, ever since then, I've made a point of getting a doctors letter translated into the relevant language before we go......even if just to keep me out of the local clink! Fortunately my sister is a spanish translator so Spain is easy. If anyone ever wants the basics of ITP in spanish or greek, I have got them.

P.S. 70 after 4 weeks is really good going for IVIg. I think 2-3 weeks is more normal. Tell Mia from me to get out there and Party!

Mia is partying! (in a 12 yr old way -- lots of swimming, hanging out with friends, cookouts, etc). She's tired at night but happy during the day.

Dennis is fluent in Spanish which will help. The letter wouldn't have occurred to me (oy). Is it easy enough to send that to me? that would be great if it's easy. thanks, Ali

We are going to madrid, toledo, and barcelona. SO excited. Feels like last family trip before the older one sets her own agenda entirely! Time is moving quickly as they hit their teens.... oh.

Hi Ali and Leat,
Well, Mia is now at 16. Half a party! We are not glum, and her biggest concern is if she can get 2nd holes pierced in her ears with platelets at 16. I take this as a healthy sign. She has very, very little bruising and no bloody noses or even bloody nose goo and she feels fine. Off watching a friend play softball.

Hope we can get through the end of the year (2 more weeks) with no treatment. I think we'll get some pressure from doctors if she falls below 10.

What's the news on your end? I hope dougie's new tests go the direction you want for the new drug and that Yael's doing well.

best, Firkins
(my goal is to be a bit more Ali-like in my approach to ITP every day!)

Hi Firkins

I'm not sure that my approach to ITP would be recommended by Dougie's consultant, but you sound as though you are chilling out about it, which is all good.

I have always wanted to go to Toledo - you'll have to let me know what to visit etc. I went a few years back to Seville, Granada, and Cordoba (fantastic city) and I've been to the coast and to Barcelona (another fantastic city). You are really making me want to go back this summer!

My sister did me a kind of mini-phrasebook when we went to Spain - see below. I hope you don't have to use any of it! :laugh:

Ali



My son/daughter has Immune (Idiopathic) Thrombocytopenic Purpura
Mi hijo/hija tiene Púrpura Trombocitopénica Inmune (Idiopática)

He/She has had this condition since .............
Tiene esta condición desde .................

His/Her last platelet count was ............x 109/l
Su último recuento de plaquetas fue de ............x 109/l

He/She has been treated with steroids/IVIg/AntiD
Él/ella ha sido tratado con esteroides/IgIV/Anti-D

The treatment recommended by his/her consultant is steroids/IVIg/AntiD
El tratamiento recomendado por su especialista es esteroides/IgIV/Anti-D

The contact details for his/her consultant are......address........telephone.....
Los datos de contacto para su especialista son:......dirección........teléfono

I think that he/she may have a head injury
Mi hijo se ha golpeado la cabeza y quizás tenga una lesión de cabeza

He/She has blood in his urine
Mi hijo/hija tiene sangre en su orina

He/She has blood in his faeces
Mi hijo/hija tiene sangre en sus heces

He/She has a very bad stomach ache
Mi hijo/hija padece un dolor de estómago muy malo

He/She is having a nose bleed which I cannot stop
Mi hijo tiene una hemorragia nasal que no puedo parar

We need an ambulance
Necesitamos una ambulancia

I need someone to translate into English
Necesito alguien para traducir al inglés

Ali,
Oh my-- thank you for those wonderful phrases. Fabulous! I hope I don't have to use it, but I will feel safer having it with us. We plan a treatment before she goes so hopefully all will be good.

You'd be surprised by our hematologist. I'm quite enamored of her. First, she listens. She is great with Mia. She is open to our NOT treating. Even suggested we stop doing blood tests, even though her count is just 16, if we aren't going to treat. "Let's get away from numbers if that is what your family wants. We can treat symptoms." She is even okay -- unheard of I think for an American doctor -- with not treating under 10 as long as we closely watch symptoms and of course monitor activity. She DID say "NO" to Mia's getting her ears pierced with a 16 count, but that's hardly radical. We feel very lucky to have this doctor. She says most of her colleagues would not go along with this protocol but she is comfortable with it, is glad I'm learning about what other countries' protocols are, and thinks the US is too aggressive in treatment generally. So!

Mia has developed a patch of dark pettichae and is definitely off her game today. Only one bruisek though, and no bleeding. She's swimming with friends. Not a party exactly, but a fun afternoon.

Hope Dougie is doing well. What is his status at the moment? are you waiting on retesting the liver?

We are excited for Spain. A bit of a stretch on so many levels, but we want to keep out there, not hide in our house because of ITP. And it feels like one of the best last chances to get out in the world with our kids before they are grown up and gone. It's going to fly by....

Best, Firkins

You sound as though you have a VERY good doctor there. She's right about the testing too - if you are only going to treat on the basis of symptoms, there's not much point in getting weekly or even fortnightly tests. Spacing them out is less stressful. At my best, I only took Dougie once every 3 months. You will know if she is getting too low because of the bleeding, and I think you would know if her count suddenly went up too - those might be the times to get a test done.

Dougie is probably about the same as Mia countwise - symptoms sound identical! He's going back for the liver blood tests again on Thursday next week. It would have been Monday but there are two bank holidays next week because of the Queens 60th Jubilee. We'll rethink the strategy after that if needs be. He's fine as always anyway.

You've inspired me anyway - I am sat on the internet looking for long weekend trips to Barcelona!

Ali

Hi guys,
Sorry I haven't been in touch. I think it's marvellous Firkins that you can get away. I am jealous. I will keep dreaming. Can't really do it this summer as its Yael's Bat Mitzvah in October. I hope to take her to Israel after... Just the two of us, if hubby can take some time off to look after the others. I think your phrasebook is great Ali, I hope Firkins won't have to use it and Mia's platelets go up. You never know, the extra Vitamin D and a change of environment may help.

Yael is doing fine at the mo. Very little bruising and no petichae at present. She has half term this week and has been enjoying the hot weather trampoining and having friends round. Her next blood test is on the 12th June as she has a camping trip the following week. I am relieved not to go in for yet another blood test.... I find it makes me more worried. You can tell when the platelets are low just by looking at the child. We are still sticking to the Nettle Tea/ Manuka honey and prommegranate juice. Not sure if she really needs it. I believe her count are up and just maybe, this ITP is acute.

Ali, I hope you guys get a chance to do something nice over the long bank holiday. We were hoping to go to the beach but don't think the weather will hold out. It might be museum weather again:unsure:

Anyway, hope all platelets go up this week
Keep staying positive

Le'at

:blush: trampoining??? Meant trampolining

Hi Le'at -- Mazel Tov on Yael's becoming bat mitzvah!! Actually, Mia is also having her bat mitzvah -- and in October. October 13. When is Yael's? Mia is already planning on writing her d'var torah on having itp..... (not a good reason to have this bloody disease!)

It's an absolutely crazy, nutty time for us to go away on every level: health, financial, and oh yeah the bat mitzvah planning -- but my husband and i just hit all the "go" buttons on the computer one night. All wrong but just right. Fingers crossed. (We are getting trip insurance tho just in case).

Glad Yael is having a good summer -- and warm weather is coming to England.

best, Firkins

Mazal tov to Mia. That's great.

Yael's bat mitzvah is on the 21st October . However, she was born day after Yom Kippur. The only Sunday after that is Erev Sukkot. So couldn't do it then. The Shabbat after Sukkot is dedicated to Chatan Bereshit so we could only slot the Kiddush in on the following shabbat 20th October hence having the friends and family on that Sunday. All very complicated really . Haven't started on Divrei Torah yet. Will get there eventually.

I'm so pleased you are excited about going abroad. It's good to keep your mind focused on the fun things in life. It's good to look forward to other more positive things also.

Enjoy the packing
Le'at

Hi Ali, Le'at and all --

Mia was just tested -- 19! up from 16 last week. It feels like party time even if the numbers are low - and she is, in fact, off at the Red Sox game with her dad and two best friends.

All good. Very happy. Hope it keeps going up.

Hope your ones are doing well.
Best, Firkins

Hi Firkins

Static is good, especially given that Mia was bottoming out in single digits a few weeks back. Is that count nearly symptom free?

Dougie has a blood test tomorrow too. We are playing "guess the count" this week, and my guess is 19 - I am much better at guessing than anyone else in our family! He also has the repeat blood test for liver function, so fingers crossed.......

He has waaaayyy too much testosterone floating about his body at the moment, resulting in lots of stupid risk taking and occasionally fighting. Thats actually persuading me that he does need to do something to be safe.

All the best, Ali

P.S, there isn't much warm weather here yet - did you see the Jubilee washout on the news?

Hi Firkins,

I'm so pleased Mia's counts are up. You sound much more relieved. Hope she is enjoying her better count. I wonder if it's partly psychological ...when you find out the counts are higher you feel better. A child must sense the anxiety a parent goes through when it comes to blood test time.

Ali, your attitude always makes me smile. YES! We were there... We saw the flotilla. Probably an experience the kids will not forget and I'd like to forget. On the whole it was an interesting experience standing for 2-3hrs. Surprisingly the kids didn't complain much. We were under a bridge so the rain didn't affect us. We only got stuck at Waterloo station which worried me a bit with the mass of people as it reminded me of Euston station during 7/7.

Anyway, hope all goes well for Dougie tomorrow with the counts and liver test.
May you all have better counts
Le'at

Oh you poor thing, standing in that rain - it looked just torrential. You are right though, your kids will probably remember it forever! I have very clear memories of the fleet review in the Solent marking the Silver Jubilee. - now that really IS making me feel old.

Nah, come on, I didn't and don't think you are more than 40ish. :evil: I was only a year then.

Whoops wrong face was supposed to be a