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26 Jan 2010 16:31
  • alisonp
  • alisonp
Hi Deanna

Yep, I reckon my hair will be well grey by the end of next week!

I don't really know what is common over here because I have never met any other kids with ITP, and the UK ITP site doesn't have a great discussion site like this. However, I get the impression that watch and wait is used far more frequently over here. I am quite happy with it as an approach because all the treatments have some sort of potential risks. The paediatric haemotologist that Dougie sees in Manchester Childrens' Hospital says he treats symptoms and not counts. Dougie has got down to 1 on a couple of occasions now without symptoms more serious than bruising and petichiae (no serious bleeding), so he doesn't recommend treating him. He did have a couple of courses of prednisolone from the local hospital, but they are very jumpy! The only problem from my point of view is that Dougie is restricted from sports when his count is under about 30, which he finds very annoying. He is a very sporty kid normally.

I hope that Devyn isn't too bad when you get to the hospital. I;m finding the up and down part of ITP quite difficult to deal with, so I don't know how you cope when it comes back after a long break. The consultants secretary today said that the only predictable part of ITP was its unpredictability, which I think I need etching firmly on my brain!

Ali :)
26 Jan 2010 16:44
  • alisonp
  • alisonp
Hi Norita

Based on my short 8 months experience of my son's ITP, I would say that UK doctors seem a lot more reluctant to treat low counts. My son's consultant says that he treats symptoms and not counts. If the symptoms are insignificant (just bruising and petichiae) then he wouldn't treat. My son has been down to 1 on a couple of occasions without treatment.

The experiences I read about on this board seem to be based more on treatment being based on a number - say under 20 or some other figure. That would be quite different to the way my son's doctor approaches it, and sounds different to the way your normal doctor operates. I hope that you reach some kind of a compromise with your spanish doctor anyway which doesn't panic either of you too much!

Ali :)
26 Jan 2010 17:05
  • norita
  • norita
Hi

Thanks to both for very useful comments and support. Yes, I am in email contact with my docs in the UK, and actually they are in contact with the docs here. Just writing to them this evening (the ones in the UK), they are not desperately worried about my count in the short term because a) I've had this count for a while with no bleeding except a few bruises and it is symptoms they look for; b) they know I have access to very good and immediate attention at the hospital 3 metro stops away should I need it; c) I am getting regular blood tests. But to ease my concerns they have suggested 20mg pred with the aim of getting a small rise in platelets while I am out here, and then review when I get back.
Interesting what you say about suddenly dropping 10. I hadn't thought about that.
I'm not particularly comfortable with a count of 10, especially not in the longer term. I was trying to see if the count would inch up by itself, even if just a little. If I could get a default count of 25+, I'd be a very happy girl...
26 Jan 2010 17:58
  • Siliconvalleygirl
  • Siliconvalleygirl
Thank you for the update - I've been hoping to hear something positive, and this at least is positive.

I'll continue to pray for Steve and his family.

- Leslie
Category: Social Chat
26 Jan 2010 18:55
  • Sandi
  • Sandi
I don't know, Vanessa. I'll see if I can find out for you.
26 Jan 2010 18:56
  • Siliconvalleygirl
  • Siliconvalleygirl
Yeah, was not a fan of the Karma. :)
Category: Social Chat
26 Jan 2010 19:01
  • Sandi
  • Sandi
Norita:

My first two thoughts were:

1) try a low dose of Prednisone - which I see you are already doing. It might bump you up to at least 50 where you would be safer. You shouldn't have many side effects on that.

2) I would trust myself more. How comfortable have you been in the past with that count? If you were not alarmed before and felt okay, why be alarmed now? You know your body better than any one.
26 Jan 2010 19:06
  • Sandi
  • Sandi
I wasn't able to remove it, but I did tell the one who could. I don't have the same options to fix things like I did before, so it takes longer to address some of the problems...relay system.
Category: Social Chat
26 Jan 2010 19:11
  • tacmom
  • tacmom
I'm sorry to see that Dougie's count have dropped. It is good that you have some indicator to tell when you feel like he has dropped. I can't always tell with Caitlin but she doesn't get petechaie unless she is below 30. She bruises at any count so that is never a good indicator for her. I know her count is low right now based on the fact that she has petechaie inside her mouth. Someone once told me that if you can see bruising/petechaie in their mouth, that gives you an idea of what their organs might look like inside their body. Our hematologist always treats when they have wet purpura. We re still waiting on insurance to approve the Rituxan for Caitlin and it doesn't look like we will have an answer this week. Glad that he gets to go on the adventure camp. I've always gone with Caitlin when they have cheer camps or any activity camps so that I can be there to get Caitlin care if necessary.
26 Jan 2010 19:25
  • snowgoose
  • snowgoose
Thanks Sandi,

I am so glad that you are still our administrator/moderator, when the board changed, that was my first thought, will Sandi still be the one?? Thank you Sandi for all you do.

Have you had a must have chocolate crisis yet, and tried the Tiramisu??

Vanessa :silly: :P
26 Jan 2010 19:59
  • Kim
  • Kim
Thanks for the update, I'm so glad to hear he's coming along and I hope the improvement continues. Please keep us posted.
Category: Social Chat
26 Jan 2010 20:27
  • dots
  • dots
I'm so sorry he's at 16. My son's symptoms are deceptive. He can bruise and get patches of petechiae and I'll take him to the doc and he's at 35 or 40. It's clear that he'll drop and then jump back up and we miss the lower count, so he doesn't get treated that day. He's also been at 15k without any symptoms at all.

Unfortunately, his lowered count often presents these days as a long nosebleed; at least that's usually a real --but quite scary sometimes -- indication.

The bottom line is that at this point, six and a half years into this adventure (he'll be nine next month), we never know what his count is but always assume it's not much higher than 40. As a result, he plays no contact sports (baseball, soccer [football]), and doesn't even attempt gymnastics (risk of falling off equipment). He ice skates slowly, often wearing his bike helmet. He swims a bit, and I'd like him to learn to play tennis this year.

All this is to say that his activities are mostly restricted, but we let him run around when we think his count is around 40. The problem is that we never really know just what it is. Here again is the wish for the home plateletometer so we could find out without going to the doctor.
26 Jan 2010 20:55
  • Carl
  • Carl
Eulogy for Gussie Pauline Calhoun

by Carl Wilson



My sisters - Paula, Shirley, and Patricia - graciously asked me to speak today on their behalf and that of our departed brother, Michael. I realize that they would speak of different memories and perspectives, but so would we all.

Our Mom, or Mother - as I called her, will be missed greatly, even as her memories live on within us, and her love continues in our hearts and in the lives of our family. I find myself wanting to tell her about things that are happening - like talking to all four of my children by phone since her death approached - one of which I hadn't heard from in several years! And my oldest daughter, Rebecca, flew out from California for the funeral.

One of my sons, Brian, whose birthday was January 18th, remarked: "I do miss the card my Grandmother always sent to me with every word underlined at least once. She is so special to me. But I will look to fond memories of her and [me] together, and smile."

Rebecca, one of my daughters, added: "I ditto ... Brian's comment about realizing that we won't be getting the birthday [and] Christmas cards with just about every word underlined: the more underlines, the more significant the word - funny how it's the little things you remember most." Maybe it's because the little things make up the solid structure that we can depend on - that show the nature of the person we know and love.

Frank, my niece, Charity's Dad, and my good friend, said of Mother: "Great woman.... We're gonna miss your sweet voice, gentle smile, and always, kind words."

In fact, over and over, I have heard people speak glowingly of her smile and kindness, and how she made each person feel special.

Veronica, another friend, characterized Mother as - "sooooo beautiful. Inside and out. Thank you for gracing us with your presence, m'lady." Even people on Facebook, who did not know my Mother, have commented on her beauty!


My Mother was named Gussie Pauline Brinkley at birth. I think that her Mother, Pauline Brinkley, passed on to all her daughters the legacy of gracious hospitality and kindness - as well as what my wife, Marge, calls "Steel Magnolia" toughness.

But Mother, in my opinion, had an especially soft heart for those she loved. In our family, we have a great many stories that are told with loving affection. One of the most poignant story was about my Mother and her Mother, whom I called Ma. On a trip to town, each child was allowed to choose a candy bar. Upon reaching home where it would be time to enjoy their candy, my Mother - whom I'll call Gussie - kept insisting that Ma take her Baby Ruth candy bar. Gussie simply was not taking no for an answer. Finally Ma gave in, and began to eat the candy bar. At that point, the reality of what she had done must have got the better of Gussie, because the family accounts say that she went outside and stood by the house, crying.

I can recall a trip that Mother and I made from the West Coast on a greyhound bus, when I was about seven years old, I think. I was getting car sick, and Mother insisted that the driver pull the bus over, so that I could throw up outside the bus. As the trip continued, I know money must have been almost nonexistent, because I cannot remember Mother eating, at all. But she would buy me something to eat during rest stops.

I won't go into detail about incidents and situations as my siblings and I were growing up that brought Mother sadness and tears. One reason is that the incidents that I remember the most might be different than Paula, Mike, Shirley, and Patricia would recall. Another reason is that the times of sadness and tears did not defeat my Mother - nor us!

One move that all Gussie's children agree was the best thing for all of us was when, with the help of my Uncle Jack, we moved into the house built by her parents, Pauline and Lonnie Brinkley. Not only did we get to attend school where Gussie and her brothers and sisters went, at Faceville Consolidated School, but we also were blessed by the relationships at Franklin Baptist Church, always special to the family.

Later, Gussie and all of her children moved elsewhere. And our family grew. We began to sense a growing desire to return to our roots. First, Patricia returned. Then Paula, with the help of Jim, Patricia, Mack, and many others, restored the home that Pauline and Lonnie built. And then, finally, Paula and Mother moved in.

While it is true that Mother's health had already begun to deteriorate, there was a happiness and joy that I think needs to be emphasized. Marge remarked that Mother's joy was in seeing her children and family settled and happy.

We've had family reunions, told stories, laughed, reminisced, sang, gone to Homecoming at Franklin Church, reunions at Faceville Consolidated School, held and watched babies and toddlers, and fondly taken many family photos while gifts were exchanged. Marge says you don't really "own" your gift until a photo is taken of you holding your gift with the giver staning beside you.

Anyone who saw our Mother's face would have known that she was happy and joyous.

And I'm so glad that this is so. Certainly she worked hard and had many rough moments in her life. But you know what? We were not poor in heart and spirit. We may have eaten dried lima beans when Mother's waitressing tips weren't that good, but we never starved and we valued what we had. And we learned to bond together as a family.

I want to say this to you, Mother, because my granddaugher, Savannah, and I think you may have entreated God for special permission to keep watch over your family:

I pledge to you, Mother, that we will continue to bond together as a family and we will
never forget to show kindness to others, as you have taught us. Thank you for not only
being the beautiful person that you are - inside and out, but also for all that you've done
for us, and for so many. I pray that God richly blesses you for the kind spirit that you
are, and that your gentle smile comfort our hearts, day and night.

[delivered at Mother's funeral, Monday, January 25, 2010. She died on January 22, 2010, at 8:19 a.m.]
Category: Social Chat
26 Jan 2010 21:01
  • snowgoose
  • snowgoose
[size=#]Hi Sandi,

Another question ;) .......................

Is it possible to flick a switch, and display the time at the top of the page like before? It was good for us non- Americans to be able to see the time over there and the current time in country of origin.

Vanessa :huh:
[/size]
26 Jan 2010 21:12
  • vsessions
  • vsessions
Hello - I am a new member to this site but just want to say thank you to everyone who does post here - it is such a relief to read your posts and see that we are not alone.

My daughter Remley was diagnosed with ITP 3 months ago with counts in the 1K. They have done WinRho, IVig, Prednisone and dexamethosone. The highest count she has had since treatment is 95K, but most are below 50K. Her bone marrrow test showed everything was working fine and as she is 3 1/2 years old we still are hopeful that she will totally come out of it (sooner would be better of course).

I was wondering what platelet count your doctors will allow your children to not be treated with and just watch and wait. We are quite comfortable with this approach as Remley has never been a bleeder. They have let us wait at counts above 10K so far (as long as not tons of petechaie) but get really jittery under 10. Is this about the same for you guys?

Thanks again for these posts. They have been a lifesaver for me.
26 Jan 2010 21:18
  • snowgoose
  • snowgoose
Hi Carl,

Your Mother sounds like a very special lady who has had a great positve impact in the lives of your family. Hold onto those precious memories. Both my parents died in January also.

Kind regards Vanessa
Category: Social Chat
26 Jan 2010 21:40
  • Sandi
  • Sandi
Ha ha, Vanessa - I don't have any switches to flick. Wish I did! I will ask the web guy (yes, we now have a web guy). My powers are limited. I can edit and delete posts and move them and sticky them, but as far as the design of the site, I have no switch.
26 Jan 2010 21:42
  • Sandi
  • Sandi
Thanks, Vanessa. Yes, I have had many chocolate crises and the Tiramisu was great!
26 Jan 2010 21:47
  • Carl
  • Carl
Thanks, Vanessa.
Category: Social Chat
26 Jan 2010 22:00
  • Melinda
  • Melinda's Avatar
Got goosebumps reading the lastest update! I'm just so thankful Steve is fighting and my prayers continue!
Category: Social Chat
26 Jan 2010 22:15
  • Melinda
  • Melinda's Avatar
Good - glad you are in contact with your UK doctors and they in turn are communicating with your doctors in Spain! Sounds like you are in good hands all the way around!

Hope the 20mg will give you an increase in your count!

Sandi - oh my, I would think yes lots of side effects with 50mg , I remember that dose well & it wasn't fun [for me anyway!].
26 Jan 2010 22:19
  • Melinda
  • Melinda's Avatar
....there is a thingy in the Boardcode that looks like a screen with a down arrow at the bottom right of it and if I put the cursor on it it says Spoiler.

I have to try this - and since I see no way of deleting a post it's going to have to stay...
Warning: Spoiler! [ Click to expand ]




Ok, now I see what that is - I tried to see it in Preview but it didn't show it
Category: Social Chat
26 Jan 2010 22:29
  • liam12
  • liam12
hello,Liams doctors are happy for him not to have any treatment,ie,steroids etc... until his levels drop below 20k,this seems to work well for us,although the last time Liam was on the steroids for a week he did not respond to it,his level only increase by about 10k,next time we might have to try the transfusion,i hope not,good luck,jenny
26 Jan 2010 22:46
  • liam12
  • liam12
;) Thanks for advise every one.I had a meeting with Liams principal and teacher today,it went very well,i modified the letter posted and it was alot easier than what i thought,they were very understanding and even asked me if the hospital ran ino days in wich they could attend to find out more about it.
Iput all the relevent info in a plastic see through folder with Liams photo, d.o.b necessary contact numbers,ambulance subsription number,itp @20-25k and please do not administer any asprin on th front cover just under his photo.,
The school thought it was a great idea,because it would be easy to find in an emergency without havinh to flick through all the pages in this folder,
Im still nervous about his first day on Friday,but at least i know the have all the info requied plus more!!!! BETTER TO BE SAFE THAN SORRY! PS Im still a little freaked out!
Jenny. :unsure:
26 Jan 2010 22:51
  • liam12
  • liam12
26 Jan 2010 22:54
  • tamar
  • tamar
Let me guess...this is for boards that discuss movies, books and TV shows??? B)
Category: Social Chat
26 Jan 2010 23:00
  • liam12
  • liam12
hI IM VERY NEW TO THIS SIGHT,JUST WANTED TO SAY I HOPE ALL WILL BE OK,
Category: Social Chat
26 Jan 2010 23:30
  • Sandi
  • Sandi
What are we talking about, Melinda? Where did 50 mg's come from? She said 20, which shouldn't be too bad.

It's late and I'm falling asleep, so I might be missing something.
26 Jan 2010 23:35
  • Sandi
  • Sandi
You don't have a way to delete posts? Hmmm. I do, but my screen is different than yours. How strange that you can't delete your own post? Lots of things to work out here.

I have no idea what a spoiler is. I don't even see that option.
Category: Social Chat
27 Jan 2010 00:09
  • Melinda
  • Melinda's Avatar
Sandi I'm so sorry!

You may be falling asleep but I was having a sneezing attack when I read your post and I read it wrong :blush:

You said: It might bump you up to at least 50 where you would be safer. You shouldn't have many side effects on that.

I read [between sneezes]: I might bump you up to at least 50

I'm hanging my head in shame and heading for the bottle of Claritin!
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