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Crohn's Disease Forum » Parents of Kids with IBD » Lactoferrin...allergist...child's pose...


01-07-2013, 03:45 PM   #1
Momto2girls
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Lactoferrin...allergist...child's pose...

So the lactoferrin lab was normal. (This is what they did instead of fecal calprotectin, as they say they do not do that lab at all. Gah!) So, does anyone know how close the lactoferrin lab is to fecal calprotectin? And if it is neg. is that a good indicator there is no inflammation right now? (That's what the doctor said.) And if so, can we skip the MRE?

Also, does anyone know, since it will have been 10 months since our last scope, are we better off with another scope or an MRE? Still undecided on one the other or both?

We see the allergist tomorrow. I am going to ask him about mast cell disorders but I am pretty sure I am going to get the typical, "lady, your child is fine and why are you trying to give her the most obscure and rare disease possible" speech. *sigh* Totally stuck...don't know what to do next.

Also, when she has tummy pain she always curls up into child's pose. If that isn't handy she leans over a chair, or anything to put pressure on her tummy. She pretty much doubles over into child's pose at/after every meal. Does anyone else notice their kids doing that?

Anyway, that's what I've got for today. She's back to diarrhea now, doesn't want to eat and lots of tummy aches. We've been strictly gluten free for a week now and it isn't helping.

OK thanks for any insight or advice ladies!!
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Little Girl: Undiagnosed (scope 4/12: non-specific inflammation in TI & colon, gastritis & h. pylori in stomach), Asthma, Food Allergies
Sulfasalazine, Miralax, Folic Acid, Zyrtec, inhalers
01-07-2013, 04:03 PM   #2
Farmwife
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First.....HUGS


I don't know about the test. I do know that Grace has/had NORMAL (for the most part) labs.
She showed no inflammation what so ever in her blood stream. FRUSTRATING!

The pain sounds horrible.
My Grace wouldn't always hit after of before eating. Hers were mostly at night but she would curl up like that.

I would do the MRE because that will help put together this puzzle for your Grace.
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01-07-2013, 04:55 PM   #3
upsetmom
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My daughter is also getting a lot of pain straight after eating..
Shes also trying to avoid food as well. These poor kids...

I don't have no advice but i hope she starts feeling better soon....
01-07-2013, 05:15 PM   #4
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Sorry, I hope things get better or they manage to give her some treatment that helps. Maybe you could ask the docs about trying an antihistamine before she eats? I know what you mean about docs not taking you seriously. I could almost see their eyes rolling when I mentioned things that could be wrong with my daughter!
01-07-2013, 05:43 PM   #5
Momto2girls
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Thanks everyone. She is on a daily antihistamine already. Has been since she was 2. I'm almost tempted to take her off it just to see what happens. Her allergist really is a nice guy. He was going to do some more extensive allergy testing this summer but when she got sooooo much better this summer on the sulfasalazine we figured problem solved. But I guess not?
01-07-2013, 07:17 PM   #6
my little penguin
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The Gi suggested the mre because she needs the MRE .
Ibd does not have one single test that says -- negative so you do not have Ibd unfortunately.
Sometimes it takes a series of tests.
Some kids are negative on almost all the tests including the scope.

So I would do the mre .
I have done the mre and ... And ... And
Sometimes you have to get the right doc for the right kid.
If you do not trust your Gi then you really need to find one that you do .


Remember you are the expert in your child
If something is off let them know .

Good luck
01-07-2013, 07:58 PM   #7
Momto2girls
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Thanks MLP -- you're been more than helpful through all of this.

The truth is: I don't know if I trust my instincts anymore.

My first born (not Gracie, my older daughter) was born with a birth injury. Her right arm was paralyzed. We started PT at Children's Mercy Hospital when she was 2 weeks old. She did over several months regain the use of that arm and everything is fine today. At 14 mos old she had her first seizure. She had them regularly until 4.5 years old. Gracie had anapylaxis to a cashew at 2 years. I think this kind of made me always "on alert" with my kids -- especially the seizures & anaphylaxis -- I am always waiting for the next emergency -- for the other shoe to drop. So maybe I am over-thinking this...like it is going to be the next awful thing and maybe it really isn't at all.
01-07-2013, 08:07 PM   #8
Farmwife
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AW, no wonder. You have every right to be concerned. You and your family have been through a lot.
I know what you mean. Is it reality or overreacting.
I mean in way, you don't want to be dealing with this and in another way you want to figure this out so your life moves on.
Hugs to you both.
Remember we're here for you no matter the outcome!
01-07-2013, 08:22 PM   #9
my little penguin
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I so hear yah on the next big thing
Lets see DS started with stuff at 14 days old
Including Ana to tn at age 5.
Seizure disorder at age 6 removed after three months - since I knew something was not right with the doc dx I kept pushing - three Neuros later it was removed.
Only to have exteme stomach issues and rectal prolapse start 2 months later.
Dx with crohn's a year later at age 7
So if your view is a little off kilt I am on complete full tilt.
But I push when needed

As our allergist put it it is ok to be "that mom"
since no one else is going to push for your kid if you don't .

There have been many times that I thought I was losing it.
In laws , ped etc .... Thought he was fine -
But things didn't add up.
It will be ok

Last edited by my little penguin; 01-07-2013 at 09:19 PM.
01-07-2013, 08:48 PM   #10
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Wow, I can't thank you all enough -- so so glad to hear that I am not the only one who feels like they are seriously loosing it. I truly think that it must just be me, but then I try to picture other families, and one of their children doubled over themselves after every meal...and would they ignore that? Saying "oh, you know how kids can be!" Or if my sister in law ever had the constipation and diarrhea we have with my niece, or ever saw blood in her stool once, let alone a few times a month, would they just stand by and say "oh well! I am sure it is nothing!" I can't imagine they would.

I'll let you all know what the allergist says. I hate allergy testing as much as I hate bloodwork and scopes, etc. So who knows...
01-08-2013, 03:00 PM   #11
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So we went to the allergist this morning, and it was OK -- nothing earth shattering. He wants us to try going off her daily Zyrtec -- he said it can be constipating. Um, what!? NO ONE has told us that before!? But we'll try it -- he thinks she might be OK since it is winter, but I am worried about her eczema. But, I'll try it, I'll try ANYTHING.

We are also going to do more allergy testing at the end of Feb. He's going to test a bunch of foods on her back, since some foods (cheese, corn) seem to give her headaches. And well, pain after every meal.

I asked about Mast Cell Disorders, to which he of course said that those people are REALLY sick, like ALL THE TIME.

You see, my kid isn't sick. That's the thing -- as far as they can see, she doesn't look sick. So, oh well.

I'd LOVE LOVE LOVE to see her get all better off of the antihistamine, but I hate getting my hopes up.
01-08-2013, 05:27 PM   #12
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Zyrtek is constipating???? That news to me, I'll have to let half of my family know!

I don't know what to say.
Go through all my old threads and see how many times I was discourage and thinking maybe I am crazy.
Thanks to THIS forum and all the bubble poppers we have on here, I now have a direction for Grace.
Don't give up. Take a breath and time than push when you need too.
I don't know if she has IBD but the answers still have to be found!
01-08-2013, 10:27 PM   #13
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Did you allergy doc not require her to be off of all antihistamines for a bit prior to the testing ?
All of my 3 kids have had allergy testing done at some point and we weren't supposed to give any antihistamines for 2 weeks if possible before hand.
Not to be discouraging, but the "nothing severe" results could be very misleading I would think if she has been consistently on Zyrtec ?

Dont give up, and never question your instincts ! Hang in there mom!
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01-09-2013, 05:29 AM   #14
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The lactoferrin and calprotectin are very similar so you should be fine in that respect.

As to the scope versus the MRE I personally would prefer both if it is indicated and in close proximity to each other. A test is a snapshot in time and if you can visualise the whole bowel at once I think it is more likely to give solid answers one way or the other.

As mlp had said...even if all tests return as normal and your daughter continues to have symptoms then keep pushing until you are satisfied with the outcome.

Good luck!

Dusty. xxx
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01-09-2013, 05:39 AM   #15
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Mmm, never heard of Zyrtec being constipating, but hey, only use it over the summer months. Worth a try to see how things go without it. Will be another reason to be watching like a hawk though .
I sympathise with the doc and "she looks well" - that has to be my absolute most annoying thing for a doctor to say . I have had that with both my kids just because they happen to be sitting quietly and calmly while I speak to the doctor. Makes me so mad! Do they really think we would be bugging them to help our kids if "they were well"?
Good luck!
01-09-2013, 12:23 PM   #16
my little penguin
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All antihistamines in theory can constipated ( dry up things ) or cause diarrhea in some.
DS has been off Zyrtec a few times in the winter before
For testing and once just to try it... Haha
Never again .

Here is the problem most allergists think mastocystosis which yes your are very very sick
Not mcas .
Only on ped allergist in the country treating mcas so.
You would need to email her.
Good luck
01-09-2013, 12:42 PM   #17
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Thanks again everyone.

Dusty -- if you think Lactoferrin is pretty much the same as feacal calprotectin, then I'll probably go without the MRE for now.

I really REALLY do not want to unnecessarily put her through testing. I will wait and see if we find out anything from the allergist. I am also temped to pursue this MCAS thing. Maybe I will call/email that ped allergist?

I do know Gracie's system kind of overreacts to everything -- esp. meds. So maybe going off the Zyrtec will be a good thing (if we can do it). I am still hopeful it'll be something kind of simple, ya know?

Also, we have her 5 year checkup in March (it was her 4 year check up that sent us to GI) and maybe I'll get to a new pediatrician by then? Right now she's seeing my family practice doctor, who I like, but she isn't a ped, which kind of bothers me.

Also, our scope did identify H. Pylori, and b/c it was "rare" (mild) they aren't treating it. I wonder if there is a way to see if it is getting worse without scoping? I need to call GI anyway...I might see what they say.
01-09-2013, 02:49 PM   #18
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Interestingly, the nurse from GI called today. She wanted to check in and I said no more blood, but diarrhea now. She said she'd ask the doc about a possible x-ray to see if Gracie is impacted again. And she also scheduled us for a follow-up appt. (late Feb). She's checking on possibly re-starting the Sulfasalazine. I guess we'll see!
01-09-2013, 03:20 PM   #19
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So, she talked to the doctor, and they want to put Gracie back on the sulfasalazine! She said if she's continuing to have trouble then let's see if this helps her. So that is good news b/c I feel like if she improves again on this then things must not be worse than her scope in April.
01-09-2013, 11:08 PM   #20
DustyKat
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When and why did they stop the sulfasalazine?

Dusty. xxx
01-10-2013, 03:37 AM   #21
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Dusty, we switched GI docs in August...we wanted another opinion on her scope results. Her scope showed inflammation in ileum and colon and gastritis in stomach and h pylori. So they put her on sulfasalazine but didn't diagnose anything. We had so many questions still and bc they are the only ped GI practice in town we switched docs. Big mistake. The new doc took her off the sulfasalazine which was fine to try but within two weeks she was feeling worse and worse. She was feeling great while on the meds! Turns out the new doc didn't really want to get Gracie better he just wanted to be right. And without 100% proof of disease (granulomas) he wouldn't treat her. He only offered to rescope. I kept pushing back on rescoping bc the treatment was working! My daughter is a 4 year old child not a ginuea pig! So, I asked to switch back to the original GI doc bc she was at least willing to treat her. So she is! If this medicine works again I think we can delay anymore scopes or MREs for now. If she doesn't improve again then we can look at what's next. What do you think?

Oh and she was taken off back in sept.
01-10-2013, 04:47 AM   #22
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Ah okay.

Ugh, granuloma's. Unfortunately many don't get a diagnosis due to their absence, with the irony being many sufferers don't have them! My son is one whose pathology did not support a diagnosis of Crohn's due to the absence of granuloma's but the GI was confident of what he saw during the scope and diagnosed him on the spot. The surgeon also stated that it was definitely Crohn's when the resected bowel also didn't show granuloma's.

I think it is fair enough to give the Sulfasalazine another go and as you say move to the next step at the first sign that it is not working. Sulfasalazine is an older drug that has since been largely replaced by more recent types of 5ASA's. It is primarily used for Ulcerative Colitis and it's use for Crohn's is somewhat debatable. You may find this thread of interest:

http://www.crohnsforum.com/showthread.php?t=36292

The main thing is to get things back under control ASAP and be prepared to change tack when needed to achieve that.

Dusty. xxx
01-10-2013, 07:28 AM   #23
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Thanks Dusty. You know, I do remember the GI saying she was "thrown sideways" at the result of the scope. She expected to see Celiac. So because she's also constipated and not losing weight then she's not that sick. They seem not at all interested that my brother has crohn's and both grandfathers have UC. So we'll see how she does on the meds. I'm going to be taking notes!
01-10-2013, 07:40 AM   #24
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Neither of my children had diarrhoea or bleeding as a symptom and my daughter tended to constipation. You will also find that it isn't a rarity for folk to lose no weight.

It is only natural that docs will look to the classic symptoms first...weight loss, blood, diarrhoea, lower abdo pain and so on but many only fit a couple of symptoms and some none at all.

Hmmm, a family history is a family history and that can't be denied, and with a history such as yours I think their interest should piqued to the point that they do their utmost to prove to you it is not IBD if that is what they believe.

Good luck and keep them on their toes!

Dusty. xxx
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