hi, my son liams creche had asked us if we has seen the bruises on liam!!! we told the that we did and that he was undergoing some tests and we would tell them the results when we got them,lucky for us we had a good relationship with the staff as our other boys had gone there. The next week we asked our doctor and heamo to write a medical certificate and gave it to them,our heamo also told us that people might question us re the bruising and to be prepared. jenny

Pauline,

I am really keeping everything crossed for you and Caitlin - must be hell waiting weeks for results like that. Her appointment sounds very thorough though, and I guess with all of these things, its better to know than not, because then you can make better decisions about treatment and lifestyle.

I hadn't realised that there was some connection between lupus and ITP, but I am not very well read on either.

Lots of luck, Ali

Barrelgal, try the doughnut - doesn't do anything for your counts, your purse, or your waistline, but works wonders for morale!!!!

I hope Dougie doesn't still have itp at 26, but if he does, I bet I'll still be guessing then like your mum!

My mom and I love to play the guessing game too (even though I'm 26!) if she comes along to the Dr with me. We hadn't thought of the doughnut reward at the end but it sounds like a great idea!

Our guessing has nothing to do with bruising, because Dougie only gets that with a count under 10, and he hasn't been there since the end of October. I can only guess 50 or above because it doesn't seem to make any difference after 50. But if Dougie's count is under 50 he gets a different look to his skin (not a rash or bruising, but a bit blotchy or something????), and he has much less energy which I think is what he bases his guesses on. And if he bashes himself playing he will get petichiae from that - he only gets them spontaneously under 20.

I don't think that its scientific, but it seems to work!!!

Ali

My boss brought some King Cake into work today (but the baby was sitting on top, they apparently don't put them in anymore b/c of a choking hazard) and I yeilded to temptation and had some. Now I'm suffering from some SERIOUS sugar crash. Happy Mardi Gras everyone!

My Doctor mentioned them being a possible complication during surgey, as well as the possibility of developing them some time after haveing a spleenectomy. I haven't let them take my spleen yet so I don't have any experience with them. I do like the sound of them, like maybe they should come in different colors to match your shoes...

Hi,
Well I wouldn,t know where to begin guessing the counts. My son's sometimes are exactly the same for a couple of cbc's over a four week period and that baffles me. The only time they rose from anything significantly from 42 to 65 my consultant gave us a month off from tests then they stopped improving. His only time he had what I would call a bad bleed was when he trapped his fingers in a school door, he's only 5,he had the tiniest scratch it spotted blood continuously from 3.00pm til 5.35pm the next day 26.5 hours. More or less bruising it makes no difference to his count Ali whats your secret to guessing!

Nadia. :S

This is absolutely terrible and I feel terrible to say that they are just doing there job. I suspect by now that you should have the blood tests back,as the child was not kept in hospital it makes me think that maybe they didn't wait for the tests to come back,my sons are back within two hours. If you have not heard anything I would get in touch with the childs health visitor or equilavent, maybe getting your gp on board would help. My first worry when I took my son to see the dr was would they think child abuse but I put that behind me as I knew his markings weren't right. I was lucky because that never came up. My mother had itp from 5yrs until 9yrs when she had a splenectomy. This was in the early 50's and she told me that the police often where at my grandads door after complaints from other people about the bruising. Hold tight and be glad that the child is still within the family, there are many more knowledgable folk than me on this sight so read as much as possible so you will have the knowledge to ask the right questions.

Much love,
Nadia.

Hi Sandi, Could you please move my Big Dipper post from Parent's Section to this one? I put it in the wrong place, Opps! Sorry! Thanks!!

!!!!!!!!! :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.