High Platelets?

[Momto2girls]

Hi guys! I know I am super in and out and I am sorry! My 4 year old Gracie is still undiagnosed -- we recently took blood just to double-check that her neutrophils went back up as they were low in a blood draw they did in June. And they did so we were glad, but now she is showing high platelets. We actually did the bloodwork with our family physician b/c it is cheaper, easier and I don't really like the GI. Her doctor isn't super concerned with it, saying it isn't uncommon in kids with inflammation. But, we are as of yet undiagnosed so I am wondering if it is another clue into what is going on with her? I think it can be a Crohn's thing, right?

I left a message for the GI but haven't heard anything. Does anyone know? She had blood in her stool again today -- but her sed rate was normal -- just the platelets were high.

 

[DustyKat]

Hey Lauren...:hug:

The reason the doctor said it isn't uncommon for kids with inflammation and why it isn't uncommon with Crohn's is because inflammation means there is trauma and platelets help with the healing process. You will find after surgery patients platelet counts are elevated for some time. Also if IBD is present you may have elevated platelets because of bleeding, platelets play a role in stemming the flow of blood loss. You can also have elevated platelets when some types of anaemia are present.

I hope the GI gets back to you soon!

Dusty. xxx

 

[AZMOM]

Agree (as usual) with Dusty. High platelets accompany inflammation. Claire's pre Crohn's days......the platelets fluctuated along with her arthritis inflammation. Like many of the tests though, high platelets don't mean GI inflammation - just could be inflammation somewhere. Crazy, right?

I hope you have definitive answers soon.....

J.

 

[Farmwife]

Right on with what Dusty, Azmom says,
My Grace gets elevated platelets.
But don't worry my doc blows it off too!:ybatty:

 

[my little penguin]

DS had high platelets as well when he wasn't under control.
Agree with what the others have said .
Hope you find a better GI

 

[Momto2girls]

OK thanks ladies! I am sure the GI will say from inflammation of unknown origin. I will let you know what I find out for sure. Does it make any difference that platelets were high but sed rate wasn't? Hmmm...OK thanks so much everyone!! I really appreciate it!

 

[DustyKat]

Ummm, not reallyish. :lol:

Given her undiagnosed status it is difficult to say. Looking at it from a purely IBD angle then I would say it may well not make a difference. My reasons being:

1. The elevated platelet count may well be due to the fact that she is actively bleeding.

and...

2. Not all children with IBD have elevated inflammatory markers.

I don't know if this phenomena, normal inflammatory markers, exists with other disorders but I imagine it could and does??

Sorry, you have probably answered this before but has she had faecal calprotectin done?

Dusty. xxx

 

[Momto2girls]

Thanks Dusty. Back in April they did do stool testing -- but I do not see fecal calprotectin. They ran Occult Blood Feces, WBC Feces, Reducing Substances Feces and Fat Feces Qual. All negative. Then they tested for C-Diff, Sal Shig Yer Campy with Shigatoxin and Ova & Parasites. Also all negative.

She had a scope also in April with inflammation in colon and ileum, and these were from "undetermined cause." Although she was put on Sulfasalazine which helped tremendously. In June (post-scope) her platelets were not elevated, but now they are?

 

[DustyKat]

I would ask for calprotectin as it specifically tests for gastrointestinal inflammation.

Just tossing around ideas but the Sulfasalazine may have initially been effective but it is now losing ground, hence the elevated platelets and frank blood you were able to see in her stool. Perfect time to run a faecal calprotectin.

Dusty. xxx

 

[Momto2girls]

Oh I should've mentioned that they took her OFF the sulfasalazine. Within weeks we were having issues. The GI is so DEAD SET on the UNKNOWN ORIGIN line (could've been from infection! even though all of the tests showed no infection) that he insisted on taking her off the meds b/c well, she doesn't have Crohn's! Ummm...OK!?!?! My GI has said it is functional gut and basically leave it alone. I will see what he says about the latest bloodwork but I am sure he'll find a way to blow it off.

 

[my little penguin]

Here is the thing functional gut does not have blood. period
Normal sed rate here for DS.
He didn't read that memo.
YOu can ask that another place do a second opinion by just reviewing her records not actually seeing her or even just reading her slides without seeing her. Those are the cheapest.
I would recommend a second opinion .
At an Improve care now doc:
Here is a list

https://improvecarenow.org/about/who-we-are

Missouri

Children's Mercy Hospital Kansas City, MO
St. Louis Children's Hospital | Washington University St. Louis, MO

They follow a set protocol for IBD.

Your GP can order the fecal caloprotectin study.
hugs

 

[Momto2girls]

Well, that's a very good point. I am sure b/c he doesn't have PROOF of blood he doesn't believe me?

We are at Children's Mercy in KC -- it just isn't the best clinic and we've been through several. I am super frustrated! I think I need to ask to speak to the nurse practitioner for our doc b/c I've heard she's nicer and easier to deal with.

I feel like people think I am fishing. Like I should be happy they said it is fine and go about my merry way.

 

[my little penguin]

FWIW our ped told us DS was fine just a skinny kid who could not keep on weight.
Our GI knew something was up but was not thinking crohn's at all after all his blood work was normal and he had a clean upper scope the year before ( 7 weeks after pred).

We started to see the GI the second time in March of 2011. DS was not dx until Sept of 2011 when we finally had an upper and lower scope.
Even then if he had not had so much inflammation (from end to end) plus multiple granulomas ( that was the key) we would still be in the un -dx boat.
They still questioned his dx for a good 10 months but 2 more GI's and another scope =everyone is on the same page.

I wish it was easy but sometimes you have to fight to get a good doc to look at your child and help you figure out what is truly going on.

 

[Sascot]

It is very frustrating, I hope you manage to get someone to listen to you soon! I am in the same boat with my daughter - have to say crying in front of the paediatrician did help get them to start doing something :lol:.
I often wonder why docs always seem to unwilling to listen to the parents. Do they really think we are there for fun and not because we are very worried about our kids? I suppose the kids don't help if they are not actively bleeding or squirming in pain at the precise moment you're at the docs.
I remember being in the emergency kids ward with my son one day after a week of bad tummy pains. The doctor comes up to him and says "so how are you feeling?" ........ my son turns round and says "I'm fine" ????? :ybatty::ybatty:

 

[Catherine]

Had the gi ask me why was nothing done after the ultrasound that was taken 6 months before the emergency gi appointment. My answer was because our then gp said it clear. He went on to explain the ultrasound showed inflammation and a thicken bowel loop.:ybatty::ybatty

 

[Momto2girls]

So I kind of honestly believe we are probably watching this whole thing unfold one tiny piece of evidence at a time. And doctors actually WANT your child to be horribly sick in order to prove to them that there is anything wrong. Frankly, it makes their job easier. The fact that our GI is unwilling to take all of the pieces of the puzzle: her symptoms she's had for years, the scope and biopsy results, the Crohn's medication was hugely helpful, she's getting worse off of the meds, we have a very strong family history of ibd, and now she's got elevated platelets, and say "well, this is pointing toward IBD so what can we do to help this situation?" But he will NOT do that...they are basically waiting for damage...meaning she gets sick enough we have to re-scope her and THEN diagnose? Why do I have to wait for her need even stronger meds? Why do I have to make her so sick we have to put her through another scope. We have a mild case and can treat it as such but instead we're trying to put her into a more dire position? It makes no sense?

 

[jmckinley]

You're right! It's not fair. I sometimes think this is the fault of how our health care system works. Dr won't treat unless he know it will be covered. Insurance won't cover unless there's no doubt...no preventative, catch it early thought going on there at all. It's hard to find a Dr that cares more about the patient than the bottom line....and the patient suffers!


Hope things get better soon!

 

[my little penguin]

So sorry Hun !
I would really look to a 2nd opinion.
The problem when it's mild is it can mimic other diseases and docs don't want to believe someone so young can have such a thing.
Asthma is similar. A lot of docs will not dx regardless of symptoms until the child is 5 or 6.
I do know of one 5 year old who was dx with Ibd treated with Asa taken off them she got worse scope showed inflammation but the kicker was she had periodic fever syndrome not Ibd . It took over a year to dx.
So that may be some of he caution.
Hope you find answers soon

 

[Momto2girls]

And I guess I am OK without a diagnosis as long as they'd be willing to give her the medication that made her better, ya know? Whatever they want to call it is fine as long as they are treating it.

 

[Sascot]

I know what you mean. I would be fine waiting for tests, etc, if they could give me some meds for my daughter's pain so she doesn't have to suffer in the mean time.

 

[imaboveitall]

Hi Momto2.
Heartily agree with the others, get a 2nd opinion.
That she improved on sulfasalazine and declined when it was d/c would make me insist she be kept on it; definitive dx or not.
As you said, the key is keeping her well. If the drug was doing that WHY d/c it?

 

[Momto2girls]

As I suspected the GI is not at all concerned with the platelets. As long as her sed rate is fine she is fine. So that's that. The nurse said he'd be happy to see her again but honestly we were just there 6 weeks ago -- having him tell me AGAIN the she's fine in no uncertain terms is just insulting at this point.

But, she's been not doing so great this week and last night we let her eat popcorn. Early -- about 5 AM -- she woke up with diarrhea and then threw up twice. I am sure it is probably just a bug, but is there any way to know?

I am leaving town tomorrow and I don't want anything to happen while I am gone. She's running like 99.3-99.8 so not really a fever. She can't really eat -- she said her stomach is scratchy -- and it hurts the worst around her chest. She said it is the kind of tummy ache that makes her cry. Like when you peel an onion?? (I do not know where she come up with this stuff!)

 

[Tesscorm]

So sorry you still have been able to get any answers!!! :ymad: Just keep in mind that when she doesn't want to eat because of pain or no appetite, you can try to give her some nutritional shakes so that you know she is, at least, getting some nutrition (and it will give her tummy a rest). It's not a long term solution but might help when she's having a bad day with stomach pain

Can she tell if her chest pain is heartburn? One of my son's earliest symptoms was heartburn.

 

[Stephyjane]

Hi I just wanted to send my support.
My daughter also complained of chest pain.
I know it's an uphill struggle but keep on until they listen, like you say why should you wait until your daughter is really sick until they do something.
I hope you get some results soon xx

 

[Sascot]

Sorry to hear about the frustrating doc visit. I know just how you feel, Amy's doc didn't want to give her meds with side effects because "she looks well" :yfaint: Came away with nothing!
Maybe you could give her some heartburn medicine like Gaviscon liquid that would coat lining and maybe stop some of the pain? Hope she is ok while you are out of town!