!!!!!!!!! :laugh: :lol: :lol: :silly: :silly: !!!!!!!!!!!! I love it Tamar!!! You did what I was only thinking!!!! :laugh: :blink: :silly:

We don't know any results and will not find out anything for two weeks. They did a TON of tests today which included 12 vials of blood for different tests (don't remember the names of all of them), EKG, chest x-ray, urinalysis, and she will have to do a 24-hour urine test this weekend. The pediatric rheumatologist seemed VERY thorough and did say that based on the earlier tests that she had done in Dec/Jan, they do have a reason to suspect Lupus. She is running all of these tests again to see if she has another positive ANA test and to see if her titer stays the same or goes higher. She does meet more than 4 of the criteria for Lupus based on a quastionnaire that I had to fill out, but that doesn't always make it "definite". Her appointment was 3 hours long.

They said if there is any indication that she does have Lupus, then splenectomy will not be an option for her. She said they like to treat the entire body and not just the platelets. She is ok with Rituximab, but said that if everything turns out the way she "thinks" it will, then she will suggest a 3-day course of high dose steroids done through an IV rather than taking pills and it will be about 1000 mg. I can't imagine that!! Seems like that would be toxic to the body!! We meet with the hematologist on Thursday to discuss any early results that have come in and then what to do next, but I have a feeling we won't be doing any kind of treatment until March until we get all results back. I know Caitlin's platelet count is VERY low because of recent bloody noses and then her stomach & chest were covered with petechaie after the EKG and then her arm was covered in petechaie after they drew the blood. I wish I knew now what her count was, but I am sure I will find out on Thursday or maybe before then if it is in the single digits.

A child who wakes up with unexplained bruises (like mine did when her ITP started) should have a CBC to count platelets AND to rule out leukemia. We'd never heard of ITP before, but my husband, who was then a brand-new nurse, wanted a CBC because he feared leukemia. Yes, the doctor has to question abuse, but he also needs to work up his patient. Has a CBC been done? Got any counts?
Norma

The night my son was diagnosed (after a week of increasingly severe bruising), we took him to our local ER, where they did a blood test and talked to our pediatrician about whether we had ever brought in any of our kids for similar bruising.

In other words, they did what was medically required and what was legally required to rule out child abuse. His platelet count was extremely low (7,000), the problem was clearly medical, and no one ever came close to taking our son from us.

Have they gotten a count yet? If her count is very low, she could be in danger. That needs to be the first order of business.

Hi Ali,

I feel as if i am on that exact same rollercoaster ride with you and Dougie.... We had great numbers last week (129,000), a week and a half of NO bruises or Petechia. But if i took him for a test today i know that i would see much lower numbers, although very hard to predict i can usually tell by the brusing that he gets. Right now i would definitly say lower then last week.

It's hard to not get your hopes up when you have high numbers, but at the same time i feel like i'm being negative when i say that he will probably crash to lower numbers again.
It's really hard no matter what way you look at it!!

Deanna

It is amazing how the Dr would bypass the fact that there could be something medically wrong with her. I know that ITP is rare or at least rarely diagnoised, but it's very sad to think that the only thing that went through a Drs mind was child abuse.

We were very lucky to have a wonderful Dr who instantly thought ITP....when Devyn was diadnoised he only had one bruise on his chest and the only reason he did a blood test was because i told him that i was worried that Devyn bruised so easily. I had never heard of ITP but Devyns Dr had a bout with it when he was 28 so he was able to educate us on what it was all about.

I would definitly get a second opinion and get some bloodwork done to see if her platelets are low. Definitly keep us posted and i'm so sorry that you and you family have to go through all of this

Deanna

I know... I was so excited on the other site to have reached like senior or very senior poster lol now were all starting over lol great sadness is upon me.

Its bad too cuz before new people to the site could see that you totally awesome gurus had been there a w while and I think it gives u osme credibility vs if youve only been a member for a month sadness...

Thats a dreadful position to be in for you and your family.

When my son was first diagnosed, the doctors questioned him very closely about how his bruises had happened, and it was clear to me that they were considering child abuse as a possibility. I was quite upset by it, but have since spoken to his paediatrician and he points out (quite rightly) that we would all be up in arms if they missed a case of abuse. I was lucky that at 11 years old, my son could speak for himself.

Hope that you sort it out soon anyway. Ali

I have put this in the wrong forum!!! I blame the high count!!!
Sandi, if you are reading this, could you please move it to treatment general please!!?

Thanks

Vanessa

Hi Alison,

The funny thing is that prior to entering the trial, I was beginning to become refractory to Intragam with only a a very small, short lived response. So, I was wondering how effective it would be!! :huh:

Wow, that is definitely the big dipper!!! Is that what the infusion usually does?

Ali

My journey on the the roller coaster, that is ITP, has been going for 6 years now. This week I entered the Big Dipper phase of the ride!! :silly:

Last Monday I had surgery, and was admitted the day before for an Intragam infusion, as platelets at 20 were too low for surgery, despite being on 50mgs of Promacta/Eltrombopag, as part of trial for past 3 years. Next morning, platelets were 120, so surgery went ahead.

I was discharged Wednesday, and platelet count was 89, so thought Intragam was wearing off.

I had my weekly platelet count yesterday and my count was 577!!!!

My trial nurse ordered another urgent count today, to see if it was a true result, and lab ladies came to me, as I am still recovering from op. Very impressed by the speed they arrived in, only 45 minutes from phone call to visit!!

Today's result was ...........up even more to 648!!!!!

Now I have to stop the Promacta/Eltrombopag until count is back down to below 150, and I am back to weekly visits to the hospital :blink: :woohoo: :huh: .

Not feeling great at the moment .

The ride continues, with bigger hills and deeper valleys.

Vanessa

About a month ago, the consultants secretary told me: "the only predictable thing about ITP is its unpredictability". Seems to be definitely true!

Both Dougie and me are getting good at guessing his count though. Everytime he goes to the hospital, we have a bet on with ourselves and whoever gets it right gets a doughnut or something in the cafe afterwards - it takes his mind off the bad part of the blood test! Anyway, this week his guess was 30-40 and mine was 35-45, so his count at 39 was right there.

Anyway, when we were at the hospital yesterday, there was a strong smell of burning in the Children's Centre and when we were leaving 4 fire engines turned up!!! I am just going to go on the local news to see if it was anything significant. Made a boring hospital visit much more interesting!

Ali

Angel,

I wouldn't want to be on your rollercoaster either!!!

Its lovely when Dougie's count does that - a week off from worrying about it at all! Hope your pred taper goes ok and that the n-plate works well too

Ali

I'm not sure to be honest, but that's what the Doctor has asked me me to do, so i can start the nplate on friday, so i'll do it and if i start to have any major problems, i'll bring it up with him, i'll just see how i go, to be honest, i don't know if it could be any worse then how i am feeling now anyway, but we'll see.

That's great news! re your count. So pleased to hear you have had N-plate approved! Do you think a sudden decrease in prednisone dose by 20mgs might be a bit rough to handle? I remember decreasing at a slower rate, and even then it was not pleasent.

Vanessa

I agree, I can't predict my own anymore either, last week mine were 18 and this week they went up to 91, so i just can't tell either.

Hey, I am so happy, my latest count came back at 91 today, up from 18 last week and i haven't changed my pred at all, so i don't know why such a drastic change, as long as it is in the right direction though. The Nplate has also been approved, so i will be starting that on friday and from tomorrow, i am reducing the pred from 40mg a day to 20mg!! So excited about the count, i hope the nplate can keep it up to those levels!!

Oh, no, that's terrible, I'm so sorry you and your family are going through this, has Savannah been disagnosed with ITP yet, have they done any blood tests etc?? Sounds like they may not have done any tests or know about ITP, if the doctors and nurses already knew she had it or did tests that showed she had a lowered platelet count, they may not have been so quick to jump to that conclusion. I would ask for a second opinion and ask for your grandaughter to have some blood tests taken to see what her platelet count is, if it hasn't already been done.

When i was younger and had lots of bruises, my mum used to get looks from people when she used to take me places, the police even once sat down when we were having lunch one day and casually talked to mum, but nobody actually took me away from my parents, i wish i could give u some advise on what to do, it would be such a devastating situation to be in.

Your family is in my thoughts and i hope everything works out well for you all.

Kim I have no idea how you manage after about 3 weeks I was ready to scrub my skin off with a brillo pad. How you have managed for years is beyond me.

Im not sure but I think there may be something wrong with my back. Ive noticed after running my left foot goes numb usually for a few hrs. Once I wake up in the morning its better but I know thats not normal. I should bring it up to my dr. Its kinda annoying to be honest with you. I dont run much just the dog in class but every week now my foot is numb like its asleep and will be like that until I wake up in the mroning.

Lol tamar! You are no fresh or junior boarder!

Please someone help me help my grand daughter!!! This past saturday my daughter called me up and she was frantic about her 5 month old daughter who woke up with bruises on her body,(chest, stomach, legs, around her eyes, and one bruise on the inside of her palm.)I really thought my daughter was thinking that my grand daughter has a rash of some sort but she was insisting that it was bruising and still was thinking it was just a rash. I called my other daughter and told her what my other daughter described to me and she said she was going over there to. We ended there about the same time and we were both in shock at what we seen, my grand baby bruised just like my daughter had told me on the phone. I told them to get her to the ER at CHKD and they did. As soon as they got there the doctor immediatly said it was child abuse and they were going to call a social worker and they did. They think my daughter and Savannahs dad abused her but I know that didn't. So child protective services has decided for Savannah to be placed with me until a further investigation has been done. This has been the most awfulest experience my family has been through. I just need to know if anybody else has went thru being of excuse for child abuse and if so what did you do to prove your innocence and that they were mistaken?

Please tell me anything that might help me - pictures, documented cases, or anything you can think of.

"Thanks GiGi.

Ali,
I don't think you can predict. It does seem he is trying to recover, though. Hopefully he will finally balance out.
We are all riding with you :side:

Oh, hurrah, I'm now a "junior"!! :woohoo: :woohoo: :woohoo:

Here's number 20...do I change to something other than fresh now?? :side:

Well, one more and I will know :blink:

If it's more than 20 I am going to be

:ohmy: Could it be 20?

I wonder how many posts it will take.....