My son was just tested by the public school district for learning issues. They feel that he has a processing issue and I should speak with my pediatrician about possibly using meds to help him focus. I have been assured he does not have the "hyper active" ADHD, but possibly the inattentive ADD. Does anyone know if there are meds that are contraindicated w/platelet issues? Thanks in advance for any insights/information! ~LaMonica
Mom to Camden-9yrs diagnosed 6/09

Thanks, Lauren.

Thank you Sandi. Are you experiencing any adverse side effects to the prednisone? I feel that I prednisone might be the best case scenario for me too.

thanks. Your posts are very helpful. I will be curious to see if 20 mg raises my count, and also to see if I get any bad sad effects. If the answer is yes to the first and no to the second, then short-term lower doses might be a way for me managing the ITP when I am away from home, need dental treatment or whatever. Otherwise I am quite comfortable with watching for symptoms and not treating - tho I am aware that symptoms can evolve with time. I don´t even bruise over 15 or 20, and that wasn´t true at the beginning. It would be good if more research were done on the correlation between count and symptoms, and what the factors that influence this are. It can´t be entirely random, even if it is complex and very variable between people.

Jennifer yes you can edit your post - there is a red oblong icon that says Edit, it's next to Quote icon/button I think.

So with the spoiler, which you can get if you do a Reply or Reply To Post, it is next to where you can select a font color - put your cursor on it and click and then the "secret" message that someone put in the spoiler shows.

Well it doesn't look like we will have it this week. Caitlin's dr really wants her to see the Rheumatologist before she starts the Rituximab because she doesn't want it to affect her overall plan of care. She doesn't see the Rheumatologist until Feb. 16th. I know that is only 3 weeks away, but in the meantime..."keep her feet on the ground". I almost want to say...YOU come keep her feet on the ground. She doesn't listen to me because she truly seems to be in denial that anything is wrong with her except for when she is feeling the effects of the treatments. Don't get me wrong...she isn't a problem pre-teen. Just a pre-teen that wants to do whatever she wants to do without restrictions when it comes to activities. I've told the doctor before that I truly think Caitlin has a Type A personality (daredevil) and has since the day she crawled out of her crib at 4 months old. (Then took off running by the time she was 9 months old!)

As far as her symptoms right now...she only has a few bruises and some petechaie inside her mouth. Oh, and I meant to ask the other day...is itching a side effect of Prednisone? She made her scalp bleed in several places earlier this week because her head kept itching so bad. I kept checking her over and over for lice, but didn't see anything. (She has been off since last Friday night.)

What a beautiful eulogy, I'm sure your mother would have approved of that. My thoughts are with you and your family at this sad time

Just thought I'd update you all on my latest weekly blood test. Just as I thought from the bruises and petechia, they have gone down again. They are back down to 47 from 76 last week. I know 47 is still quite good, but i'm just bummed they have gone down again especially when i am still on the 40mg of pred a day. I see the doctor next tuesday and have another count down before i see him. I just hope they haven't dropped down any lower.

I agree, 20 should be able to raise your count high enough and not give u too many side-effects. I'm currently on 40 and i am getting quite a few nasty side-effects.

This damn rash is killing me. Today I was so horrible that I almost took another 10 of prednisone to see if that would help. Today was unually sunny on my way into work and it just went downhill from there. My arms then got blotchy and burned, then my scalp started to burn. I ended up getting some benedryl to try and help and well it didnt really help that much at all other then make me sleepy. I have no idea why this is getting so bad or how to make it better. Sorry guys Im just frustrated and had a bad day

Sandi,
There also isnt a way to edit your posts.

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

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!

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.

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.

hI IM VERY NEW TO THIS SIGHT,JUST WANTED TO SAY I HOPE ALL WILL BE OK,

Let me guess...this is for boards that discuss movies, books and TV shows???

Great idea.Jenny

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.

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

....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...



Ok, now I see what that is - I tried to see it in Preview but it didn't show it

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!].

Got goosebumps reading the lastest update! I'm just so thankful Steve is fighting and my prayers continue!

Thanks, Vanessa.

Thanks, Vanessa. Yes, I have had many chocolate crises and the Tiramisu was great!

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.

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

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.

[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 [/size]

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.]

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.