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Hugs ...
Not what you needed now but at least you know the drill.
Hope the pill cam gets you some answers soon.
 
They are definitely apthous ulcers T.

It is good to hear that they are pursuing this hun but I hate that they feel the need to do so. :(

Sending my love and well wishes that it all comes to nothing mate. Is it possible that I can be as nervous as you are? YES!

:goodluck::goodluck::goodluck::goodluck::goodluck::goodluck:

Dusty. :Karl:
 
Dusty - please don't think I'm "stupid" ... But apthous ulcers are not just "cold sores" right ?
I'm sure I'm supposed to know this since I have a daughter with such severe crohns - but I don't :/
And, quite frankly I am not afraid to admit my ignorance - but it's only because I think it may benefit someone here :/
I know I said before that I was thinking if backing off , but after the follow
Up today I can't.
However , depending on the results of
The pill cam I could change my mind again...
I only admit this as well in case there is another parent feeling as I am - ...
Are we "searching" for something that just may not be there ?
It's truly a hard, hard road - especially when you already have a diagnosed child :(
 
Oh T...:hug:...there is nothing stupid about your question...:hug:

Mouth ulcers, as we call them, and canker sores, as you guys do, are different to cold sores. They both often occur when you are "run down" but again they are two different things.

I know exactly how you are feeling T, that was me in November 2010. :( God I hope more than anything that JJ doesn't follow Gab down this path. I feel so acutely your fear and uncertainty. I don't know if you have ever seen this old thread of mine T, I want you to see it only for the fact that you will know that what you are feeling is normal and natural and you are not alone...

http://www.crohnsforum.com/showthread.php?t=14192

I don't want to say this T, and I don't want to not say anything either. It is in no way a reflection on what JJ is experiencing but one of Matt's earliest symptoms when I looked back on things was mouth ulcers. I treated them at the time with B Complex and they went away and I never gave them another thought until he was diagnosed. They were present earlier in the year he was diagnosed.

Dusty. xxx
 
Crohn's Mom said:
I only admit this as well in case there is another parent feeling as I am - ...
Are we "searching" for something that just may not be there ?
It's truly a hard, hard road - especially when you already have a diagnosed child :(
Click to expand...

I hope you are searching for something that isn't there, but you know(more than most) that the outcome can be so much improved if it is and you find it early. Thoughts and prayers T!
 
Wow Dusty !
No, I have never read that one ( I guess I didn't stalk you very well ! LOL)
I think the first of Matt's story I had previously read from was Dex's "update on Dusty's Matt" thread.
So, thank you for sharing that with me !
It does make me feel a bit better about my roller coaster of emotions concerning whether or not to proceed with testing for JJ. :hug:
 
DustyKat said:
Oh T...:hug:...there is nothing stupid about your question...:hug:

Mouth ulcers, as we call them, and canker sores, as you guys do, are different to cold sores. They both often occur when you are "run down" but again they are two different things.

I know exactly how you are feeling T, that was me in November 2010. :( God I hope more than anything that JJ doesn't follow Gab down this path. I feel so acutely your fear and uncertainty. I don't know if you have ever seen this old thread of mine T, I want you to see it only for the fact that you will know that what you are feeling is normal and natural and you are not alone...

http://www.crohnsforum.com/showthread.php?t=14192

I don't want to say this T, and I don't want to not say anything either. It is in no way a reflection on what JJ is experiencing but one of Matt's earliest symptoms when I looked back on things was mouth ulcers. I treated them at the time with B Complex and they went away and I never gave them another thought until he was diagnosed. They were present earlier in the year he was diagnosed.

Dusty. xxx
Click to expand...

DustyKat
Well where's the rest of the thread of that link????? I have to find out if you son did get Crohn's?:shifty-t: (I know he did but remember my life is simple:cool: and I want to know how you found out? Very suspenseful so far.):rosette2:
 
I feel very safe. :biggrin: It is you I feel very sorry for. :lol:

Happy reading!

Dusty. xxx
 
T......... Yes, that's an aphthous ulcer. No not a cold sore. Yes I know you already know that now. Sigh.......

Staying tuned for a pillcam post.....

((((Hugs))))

J.
 
By the way - I bought JJ some Boost drinks over the weekend and asked him to drink them for breakfast. They are vanilla flavored (he is a VERY picky child) he leaves for school at 5:55 a.m. So hasn't been eating breakfast this school year much (or lunch - claims he's not hungry) anyhow - today was the first day and he liked them! :) mommas happy, and it's easy and nutritious for him to take with him on his way to the bus :)
Hopefully they will help him even just get a little nutrition and stop losing weight :)
 
Woohoo for boost
CAn you send one with a cold pack for lunch
So if he doesn't eat at least it's something????
We did this in the beginning with DS prior to dx
 
That's a great idea mlp -
Being so short he may be concerned with taking them to highschool for lunch for fear of being made fun of - but, I will definitely see how he feels about it :)
 
He should tell anyone who asks that he's "bulking up" :). That's what Hunter told his friends. ;)
 
You ladies are too smart! ;)
I could buy him the Muscle Milk drinks for school ! They would all be jealous then :p
 
He leave's for school - LEAVES at 5.55AM?:eek2:
No way!!!! - you americans are hard core!!!!:eek:

I hope the shakes keep him from loosing too much more weight before the pillcam. xxxx
 
Crohn's Mom said:
By the way - I bought JJ some Boost drinks over the weekend and asked him to drink them for breakfast. They are vanilla flavored (he is a VERY picky child) he leaves for school at 5:55 a.m. So hasn't been eating breakfast this school year much (or lunch - claims he's not hungry) anyhow - today was the first day and he liked them! :) mommas happy, and it's easy and nutritious for him to take with him on his way to the bus :)
Hopefully they will help him even just get a little nutrition and stop losing weight :)
Click to expand...

crohnsmom,
:ywow: Tell your son that their's a farm family in Michigan that thinks that's early too. Does a teen-age boy's brain even work that early?:D My hubby sympathizes.:wink:
 
Crohn's Mom

Your could be a swimming mum, we leave home at 4.30am for swimming training before school.:dance:

Farmwife, whats your husband up to a farmer should be up with the sun.

My father didn't believe farmers should get up that early either, cows can't tell what time it is
 
4:30 training eek:
I thought 7:30 pool time was rough on Sat.

FWIW high school here loads the bus early around 6:30 or so...
 
My son loves boost. I the tried equate (walmart brand) and he liked them even better. They are less expensive so I was thrilled. You can get boost plus or equate plus and it adds some extra calories and protein as well. If he is willing, we gave him one right before bed when he wasn't able to gain weight. Our nutritionist recommended that. Sometimes we would add a breakfast essential to the vanilla boost in a blender. He likes that too. Glad you found a way to get those extra calories in. Boost in his lunch is a great idea. If he doesn't want the bottle, you can put it in a drink container and he can say it is a shake.
 
LEAVE HOME AT 4.30 OMG!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
that is what you call total dedication!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
respect to the pair of you!!!! xxxx
 
OH MY GOSH !
maybe I am just "wishing" here....however, I am a person who looks for any little positive sign and runs with it :)

JJ just came in my room and asked if he takes a pack of Poptarts with him for breakfast in the morning, then does he still have to drink a Boost for breakfast ?
I said, I don't care if you take a hamburger with you to to the bus stop for breakfast and eat it, as long as you drink a Boost for breakfast first!
We went back and forth a few times while he was trying to negotiate..lol...but now he understands what I mean.

And then, he says,....by the way mom....look at my finger and toe nails.
I did, and holy crap ola !
This kids nails have been extremely malnourished for YEARS ! And now, he has "almost" nails after just a week of Ensure ?
Momma is happy, and hopeful, and informed him that his breakfast of Ensure is not just about "breakfast' but about nutrition :)
I said go ahead and eat your Poptarts, as long as its after the Ensure :)
He agrees and is noticing "things" himself and seems excited !
 
I too got excited when Grace's finger nails started to grow straight. I hope you get answers soon!

How's Gabs?
 
Woohoo! That is so fab T! :allright::allright::allright:

I love that you are getting some rays of sunshine in your life! :sun::sun::sun:

:mademyday:

Dusty. :heart:
 
Anyone have experience with lactose intolerence?
Freddys been ok (not ok like a normal kid but ok for him) for a good month or so.
Last week he kept saying his knees hurt again but didnt seem too upset, he had one night crying, dribbling, retching etc but then was fine.
On Dr's orders I am slowly re-introducing Dairy - so saturday he had one flapjack (had butter in it), Sunday he had another, plus a little cake (with butter and a very small amount of milk in it) everything else has been 100% dairy free until today when my daughter happily gave him the remains of her hot chocolate to finish off (resulting in pain, wanting lots and lots of cuddles, followed fairy quickly by mucosy diarrhoea). Apart from today he has slowly been becoming more clingy, tummy pain, and worsening stinky diarrhoea since saturday.
Freddy has always been very up and down so I dont know if all this is to do with restarting dairy or just his normal fluctuations - my question is if he was still lactose intolerent would one flapjack per day cause all these problems?? so quickly??
 
Suzysu I know if Lucy has something
With milk in it by mistake as she is diary
Free I know the reaction is very quick
And effects her for a few days after.
Hope freddy feels better x hugs x
 
Crohns mom - great news!!!! :banana:

Suzysu - sorry, not sure re flapjacks but have heard/read that milk/lactose can cause problems fairly quickly to those intolerant??? However, I would 'guess' the hot chocolate played a bigger part than the flapjacks. But, I wish Freddy was feeling better more often and consistently! :ghug:
 
Suzysu, myself and my younger son are lactose intolerant and we both could eat a flapjack (pancake) or a small piece of cake with little to no problem (maybe something to do with cooking/chemical reaction) but if you gave us a hot cocoa made with milk we would be in the bathroom within 20 minutes with D
 
Thanks everyone!
JM - The reaction to the hot chocolate was certainly impressive and like you say D+ within 20mins - I just was amazed it would be so quick.
MLS - Would Lucy react to something cooked with dairy in it like cake or something?
So the question now is do I continue with gradually increasing dairy? - I guess it would make it more certain that it was a problem - It's just not nice for him.
 
Suzysu Lucy reacts to all milk products cooked
Or not cooked . It's the same reaction.
It isn't nice for them as it gives pain
And cramping ect .
How much hot chocolate did he drink?
It could of been a mixture of everything
And his body reacted slowly.
I know a boy in Lucy's nursery and he has
Milk intolerance and his mum said he reacts
6 hours after he has had milk products .
Maybe talk to his doctor before you carryon.
 
Mylittlesunshine said:
I know a boy in Lucy's nursery and he has
Milk intolerance and his mum said he reacts
6 hours after he has had milk products .
Maybe talk to his doctor before you carryon.
Click to expand...



Same thing with my son and I. About 6-8 hrs later we throw up if we've had to much milk. Now we do have a tolerance for it but to much and up it comes.:ack:
Ironically Grace doesn't seem to be bothered by it.:heart:
 
Farmwife said:
Same thing with my son and I. About 6-8 hrs later we throw up if we've had to much milk. Now we do have a tolerance for it but to much and up it comes.:ack:
Ironically Grace doesn't seem to be bothered by it.:heart:
Click to expand...

Praise God for the little things!
 
I appologise in advance for the venting that is to follow!
Had a bad night\ early morning with freddy, and along with the recent downward trend thought I should take Freddy to the GP to ask advice on the whole re-introducing dairy thing and thought I would get the Dr to check Freddy's knees as well.
We saw a new GP today.
Advice re the dairy is to stop and see what happens - sounds sensible.
explained briefly about Freddy's problems and about his recent issues - explained about his knees and asked advice - Dr didnt even examine or so much as look at him (he sat on my knee cuddling into me the whole appointment looking poorly while my 4 year old did the normal healthy child thing) the Dr said and I quote 'I am only a GP - this is testing my knowledge to the limit' (along with associated dramatic hand gestures) - SERIOUSLY a child with sore knees test's a GP knowledge to the limit? all I wanted to know was weather it could have been something as simple as growing pains or weather I needed to take it more seriously - I would have thought he could have at least looked at him.
When we got home my 4 year old said he was hungry so I got them both a little cake (dairy free for Freddy of course!!) I held the cake out to Freddy he looked at it and burst into tears - I nearly did the same! - I think I am just tired!!
Thanks as always for reading my ramblings!!
 
Hi Suzysu
So sorry you had bad night with freddy
Can't believe the gp, well actually nothing
Surprises me after experiences with doctors.
How is freddy doing today.
 
Suzysu

Grace has had knee pains for...years. Since one she would point and say boo boo.
Her pain hits just in the joint and they is NO swelling and NO redness. When it hits her, it's very painfully and can last minutes to many hours. Now she needs meds to make it better.

Does any of that sound familiar?
 
Hi Susy - My older kids are lactose intolerant and even just one pancake will both my som. We've had doctors tell us that treating Danny will require "somebody much smarter" than them. I appreciated their honesty. We've also been told "he is a difficult case". It is all so heart-wrenching as a parent. I am glad the re-introducing dairy has been stopped. I hope you get some answers soon.
 
FW - all to familiar - He's started to limp occasionally and his legs give way sometimes.
He has now developed a rash at the top of his neck - another thing to add to the list!!
Danny's mom - I don't mind if a Dr doesn't know something or Freddy needs to see an expert it was more that this guy didn't even examine him - he basically just couldn't be bothered - that made me cross!
Freddy has had paracetamol and is happy (although still not eating) so long as he is attached to me limpet style! - so no housework for me this afternoon (shame!)
 
Suzysu, I'm so sorry your little man is so miserable. I wish the GP could have offered to try something! I'm glad you are stopping the lactose. That makes a lot of sense. Big hugs to you both!
 
Hey everyone -- listen, I have been going back and forth on whether or not to do this MRE for Gracie on March 1. I am very very conservative on tests -- and doctor I know said something that stuck with me recently. We were talking about my brother (who was diagnosed with Crohn's at age 19) and I was saying that he had all of these early signs -- that my parents (or probably the doctors!) knew were signs of IBD -- like these really bad sore cracks in the corners of his mouth, and his impactions and stomach pain that no one really ever took seriously. And had they found it earlier, would that have been better? And she said it was so hard to diagnose Crohn's that my parents just probably saved him years of unneccessary testing.

So I'm really torn. I hate for her to suffer needlessly for years. And I hate for her to be poked and tested and scoped constantly until something definitive shows up?

Her tummy pain is A LOT better on sulfasalazine. Her bowels still aren't normal. She has a lot of headaches, and she is throwing up in her mouth a little bit from time to time? She IS better though.

Don't you think I should hold off until she's having really concerning symptoms??
 
Welcome to my last thought right before the GI called with the results.
With my Grace her symptoms over time are getting worse. So maybe they weren't full time but still there. My hubby said the perfect thing when the nurse asked about Grace. He said to her the GI is trying to slow the Mac truck before it hits. A hard analogy but accurate none the less. So to answer your question...it's up to you and what your gut tells you.
 
I understand your dilemma - just read a few post back and you'll see! :)
However, with the symptoms your child is having , I would think further testing is warranted. And as far as "invasive",
IMO the pill cam seems to be one of the least offensive - with the worst part being trying to swallow the pill capsule.

It's completely up to you of course and how you feel :)

I was very close to deciding not to pursue testing for JJ, but his constant belly aches and fatigue are enough to tell me to just breath, and let him do the pill cam and depending on those results I will decide after that whether to wait and see or pursue more.

Big hugs - I know how hard these decisions are !
 
:ghug:
It's hard to decide.
But here's another story for you.
16 year old who finally was sick enough to go to through all the tests.
Gi recommends a colostomy because the disease is so far advanced.


We didn't do all the tests for ds right away.
We even held off on the upper and lower scope :ack::runaway:
We didn't know what he had
And all the ped thought he was normal so .... Obviously we should be that type of parent and push for more tests .

One thing I learned through all this....
The Gi is not going to perform a test unless they have a good reason for it no matter what you think . They have to be able to justify the need for that test to insurance companies etc....
Which even when you have a valid reason they still don't want to approve.
 
Thanks MLP !
You just made me realize that maybe our GI isn't just being "nice" when it comes to scheduling the Pill Cam on JJ just because of his sister history of CD, and moms history of being a bit overly neurotic! ;)
Makes me feel more justified.
Now if they would only get their machine fixed we could actually get it done lol. - insurance finally approved and then their machine broke -
Go figure lol
 
Fingers crossed their machine gets fixed soon.

Our insurance will not cover a pill cam if you have a dx of bid
Only if you have NOT
Been dx yet:ymad::ymad:
So if we want ds to have one this year then we have to pay for it
 
Have they tested fecal calprotecton? It's another check they can run that's totally non invasive, as its a stool test. That might give you a little more information on what's going on.

When Liam started complaining of stomach pains, because there was family history of Crohn's his GP tested fecal calprotectin to check whether he should be referred to a GI, for more invasive tests.

His result was high (over 600) so he has had a Barium Follow Through X-Ray, and colonoscopy and biopsies to look for signs of Chon's. Still waiting on Biopsy results and a 2nd calprotectin test result before deciding on next steps.
 
Thanks again everyone!! I am so sorry, MLP, stories like that are SO scary!! I DON'T want that to happen...I don't want to drag her through a childhood filled with unneeded tests.

But, I hear ya -- the doc wouldn't order anything that wasn't justified. I still do not get a good feel though if we have to put her under if we wouldn't just be better off re-scoping?

So she says everytime she moves her eyes to look down she gets a headache. I think this is what is causing the headaches in the car -- b/c she has to look down in order to buckle her seatbelt. I don't even know what to think anymore?

Today she was burping a bunch. I don't recall her ever burping before? That with the spit up in the mouth I wonder reflux? And the asthma symptoms?

Hmmm...decision, decisions!

Maree -- they did lactoferrin which I understand is similar to fecal calprotectin -- and it was normal. So yet another reason to maybe not test?? Of course that was when? I month or more ago? I'd have to look.
 
I think the MRE can see the bits of intestine that the scopes can't reach - if disease is centred there then re-scoping may not shed any more light on things? I think given Gracies history and your family history maybe having the MRE may be a good idea even if it is normal you know a little better where things stand xxxx
 
Yes, that's true. I also got to thinking you know a year ago they found inflammation but no answers so here we are almost a year later and maybe it should be followed up on ... Ya know? Also does anyone know if symptoms are different if it is higher up?
 
I have no idea honestly (you'd think I would) if symptoms are different higher up -
However, I do relate to having scopes a year ago and there being inflammation (in jjs case chronic inflammation - nonspecific ) and nothing being done but watching :/

Ugh - why can't this just be easier ??

I am trying to take tomorrow off of work to take JJ to docs because of severe lower back and right lower abdo pain :(
 
I suspect waiting and watching might be the approach for us too and I'm ok with that. However I want to try to agree some clear parameters around followup/further testing triggers upfront because otherwise I think I'll feel very anxious about that process (I'm a project manger by training, I need an agreed plan or I'm out of my comfort zone.)

I definitely want agreement on list of specific things we're monitoring and what grounds would have us move to the next sets of checks up front.

I also feel like if a test shows a concerning result, eg inflamation and your in monitoring mode it makes sense to have some sort of agreement in place as to what frequency they'll rerun those tests to see if there have been changes.

If your coming up for 12 months since tests that showed inflamation I'd be pushing to have them done again, so at least you can compare the results and make sure that there has been no change or that your tracking in the right direction.
 
Crohn'smom -- sorry about the pain he's having. No fun at all!! I DO so wish this were easy!! They did give Gracie meds at least for her inflammation -- so that's good! But we still don't have a great picture of what is going on.

Maree -- they want to scope -- I asked for an MRE instead b/c I thought it would be less invasive, but I what I was really hoping for was that she wouldn't need anesthesia, but she does anyway. But either way, they do want to take a look again. But, I am the one hesitating. On one hand if we rescope and everything looks good it would be SUCH a GIFT!!! If we re-scope and it looks the same it would seem SO pointless! And of course if we scope and it is worse, well, then we'll be glad we did, ya know!? I guess the worst-case scenario is pointless...but that's they stuff that makes me feel like I am losing it!
 
If they scope and it looks the same at least you know that it's not progressing. If I was in your shoes I think I'd see no change as a fairly positive outcome at least it means that her condition appears to be stable at present and the waiting and watching approach isn't doing her any harm.
 
Yes, that's true! I guess I feel "in limbo" since we've had no diagnoses, so the same would feel more like being in limbo with no real answers. I mean, if what she has IS pre-crohn's/early crohn's/mild crohn's, then I could live with that. And while most people seem to think that's probably what it is, no one has really said that officially, ya know?

I'm going to call GI nurse today and give an update and see what they suggest.
 
With Liam I'm expecting the same limbo land at this point. Our GI has been very clear that he has no idea what pre crohn's looks like, so given the family history even totally clear results don't rule it out.

It's good that our kids are being actively monitored, if they never develop crohn's or not until much later in life this monitoring won't have done them any harm. If their conditiond do transition to full blown Crohn's hopefully the monitoring will mean this is spotted before the inflamation is chronic. Which hopefully will give them the best possible treatment outcomes.

The other upside for us of limbo land versus a clear diagnosis, is that it will be much easier for us to get health insurance cover as a family, than if we had a child with a Crohn's diagnosis which is important to us as our current health cover is linked to my husbands job.
 
Pill cam scheduled for Thursday the 21st !

Now were off to the ped GP to see what's up with the kiddos back :(
Poor kid is in so much pain this morning. I'm not used to seeing him like this.
 
Glad you got a date scheduled for pill cam Crohn'm Mom - Good luck!
Hope you get the back pain sorted out as well
 
Why not scope/mre same time only one knock out because IF they find anything on the scope or mre then they will want the other test.
We combo procedures alot so there is less exposure.

Woo hoo on the pill cam T
 
All done with doctors -
I had to fight to get X-rays ordered ugh!
Docs theory is that his back pain may be caused from the right knee pain jjs had for the last couple months. He said there's some inflammation around his knee, and a possible tear.
He wanted to just start him in physical therapy and if that didnt help after a couple of months (ugh!) then do an MRI.
Well, I had to make him understand that I am not comfortable with that plan simply due to the fact that JJ is on hgh injections and the knee and back pain are the main symptoms we were told to look out for.
So now he is getting full lumbar, hip, a d knee X-rays today. We also have the script for physical therapy. He also prescribed him Toradol for the pain - not sure if I will let him take much of that tho due to it being an NSAID.
I'm going to put a call into his endo doc as well and make them aware.
 
Hi T ... sorry JJ has so much pain. I hope it goes away soon for him. How long has the knee and back pain been?

And others ... I love the "Limbo land" phrase above. I feel more comfortable having tests done, that have not been done before, because I'd hate to think we are overlooking something. Last year Danny had many tests done (MRE, scopes, etc.) and they did not yield additional answers ... so we are taking a break from testing as long as he does not get worse. (It has been maybe 9 months now without testing ... not sure whatis next)
 
So I cancelled the MRE. The thing is, we can always reschedule, right? I mean, as it is our MRE was on March 1 and our appt with the GI on March 13 -- well, I'd really like to see the GI first. Also, we are doing allergy testing next week -- we are seeing the eye doctor for eye pain today and she has her 5 year check up in March as well. So who knows what we might sort out?

Also, she had a huge poop today -- which was encouraging -- even though it was GREEN! Like perfect pea green. What does that mean? Anyway, I think if even ONE lab test can back abnormal I'd feel better with more testing. And we haven't done bloods since Sept. So I am thinking bloodwork with GI or ped on March and go from there?

Sorry about everyone else out there in limboland! Argh!!
 
Beginning to feel like a frequent flyer in a holding pattern in limbo land. Tired of my kid flirting with this disease after being told twice she has Crohn's and then again no she doesn't. Sometimes makes my head hurt.
 
We have our next GI appointent in a week so I was just 'reviewing' Freddy's case in my head - last April he had an Iron level of 5 (should be 8) and his PCV was bang on the lower limit of normal, the next blood test in May they didn't test iron levels, PCV was still bang on the lower limit of normal but Ferritin was out - I haven't hassled them for more bloods because I felt he had been through so much, and thought that if he needed them they would suggest it - does anyone know\ think I should get them to check it again?
 
I would only because it will give the GI a fuller picture. If you don't what MIGHT happen is the GI will say lets see what his labs look like first before I make up my mind on his.......
Than you will have to wait for the labs to come in and than for the GI to read it.
 
In the UK it's the GI that orders the labs - so he won't have them before the appointment - its just weather I ask him to run some or not if you see what I mean!
 
We just call and ask / remind the Gi nurse if they want xyz lab then they call in the order so we can discuss results at the appt.
 
MLP - that sounds much more sensible! Where we are the only place that will take bloods from kids is the hospital that we go to to see the GI - I'm not sure my GP would order bloods for me - its all very complecated and I just try to do what I am told!! - It would make much more sens to have the bloods done first then see the GI! I'm in two minds about having it done anyway - I'm still hoping he will just outgrow what ever it is that is wrong with him!!
 
Yes, we all wish our kids would just grow out of it. I hope you're a lucky one to get her wish... After 12 years of not knowing why my little girl can't/won't eat, I'm glad to get a diagnosis, even if I see that she won't outgrow it. I have hope now it can be treated, and even more hope that God will heal her some day...
 
Hi everyone,
I'm brand new here. My 7 year old Noah has a long history of stomach issues, starting with chronic diarrhea when he was an infant - originally diagnosed with diarrhea of toddlerhood and reflux. His height and weight have been steadily falling but since his reflux wasn't bothering him much he was followed by an endocrinologist for his size, not growth hormone deficiency, bone age 2.5 years below his real age. His endo said he was a "late bloomer". Recently, his height plateaued and he lost 5 pounds ( which is a lot for him because now he's down to 39 pounds!) so he went back to the GI after 2 years. His stomach hurts all the time, always has. They called to tell me they found "active focal colitis" but wouldn't tell me more over the phone. They called on Fri. And got him in on Mon. So I should find out tomorrow. I'm a little nervous because everything I'm reading about active focal colitis in children says its a sign of IBD. Now I'm feeling horrible that I let it go this long between GI visits and didn't pay more attention to all his stomach aches. He fell below the 3rd percentile in weight and height a long time ago, but at this point he has completely stopped growing in height and losing weight - he about the size of a small 4 year old, which is not easy for a 7 1/2 year old in second grade! i feel like his endocrinologist also dropped the ball because he keeps saying he is OK even though he weighs and measures him every 3 mo. This just wasn't taking priority for me because he also has a chiari malformation and hydrocephalus with a lot of severe symptoms and may need surgery for that soon, and his twin sister has a brain malformation called cortical dysplasia which causes seizures that can't be controlled with medication and will be getting brain surgery, so I've been overwhelmed with medical issues (between the two, they see 12 specialists!). Anyway, I'm not sure if he has IBD, but for now I know the GI found the active focal colitis on his last endoscopy/sigmoidoscopy. Anybody have any first hand info on how this relates to IBD?

Thanks, Katie
 
First KatieB Hi and Welcome!

We all have played the blame game. I sometimes wondered if I had pushed more maybe Grace would just have Eos disease and not IBD now. But theirs no need. It is what it is.
Sometimes IBD takes a while to "show up". You could have pushed and nothing would have showed at that time.
As far as your question I know not but we have some wonderful people that might be able to help. They be along when they can.
HUGS
 
He got me confused because he has *always* had chronic diarrhea, and then started feeling nauseous all the time, but got diagnosed with the chiari and hydrocephalus, and the increased inter cranial pressure causes his nausea (and terrible headaches, dizziness, crossed eyes etc. etc. ) and meanwhile his twin is always in the hospital and having 30+ seizures a day, so I just lost track of his belly aches...figured the endo would have mentioned if he was more concerned than normal about his growth! It was actually his neurologist that sent him back to the GI for his weight loss and new trouble swallowing (which can be a Neuro symptom of chiari!). Thanks for the support!
 
Hugs
^^^^yeah that trouble swallowing can be a sign of other things Gi / allergy wise.
You have a lot on your plate and you trusted the docs to pick up on things.
The important thing now is he is dx and the Gi should come up with a good plan for him in Monday.
We can help if you have questions .
My son has stomach / Gi issues since he was two weeks old but like you he had other more pressing issues going on .
We even had the ped tell us he was just a skinny kid ( his weight plateau for two years before growth stopped)
Thankfully he is dx now and we have plans in place.
It will be ok
We are here
 
Yes, he frequently chokes, like with food caught in his throat and turning blue. It's not anaphylaxis and he has no food allergies. The Neuro had the GI look for strictures as a possible cause of his dysphagia, but its not that. She will also do a swallow study, but we now know the cause is neurological not GI related. In chiari, the back of the cerebellum is basically hanging below the skull instead of up in it as it should be. This restricts the flow of spinal fluid and puts pressure on the brain stem, causing a variety of problems. He is being admitted to the Neuro unit for a week for a full work up as soon as they call me with the date. Unfortunately, his GI is from the other children's hospital here in Orlando (one is best for Neuro, the other best for GI) so they can't just do *all* the tests he needs at once! He's already going to be put under anesthesia at least twice during that stay, and was under sedation for his endoscopy/sigmoidoscopy last week. I wish they could just do all his tests at once!
 
Katie, I'm sorry to hear about your son. Your GI symptoms sound similar to my daughter's and we had an early initial workup for chronic diarrhea and failure to thrive early on with her too. I waited 12 years before I pushed again, so you're doing much better than I did - so keep your chin up. I started with endocrinology who did her endocrinology workup which was normal, but she did not push for gastroenterology until I made a case saying that I thought her stomach must be genetically small or something because she gets full quickly and has no appetite. That said to say that endocrinologists have their own narrow glasses on sometimes. She started asking about other symptoms then and made the GI referral. She started with only one small area on her transverse colon that showed up with inflammation, but it was a sign to the GI that more than likely there was a lot more in her small bowel since she had delayed puberty. Further testing proved that. I hope you can get good solid answers or at least get headed in the right direction tomorrow. <<<<Hugs>>>> Sorry to hear that one more thing medically abnormal is happening with your dear children.
 
My Little Penguin, I have no idea! This was his 3rd or 4th endoscopy/sigmoidoscopy. She stimulated his pancreas this time and took samples from that. Before, his GI thought he has cystic fibrosis and did sweat tests, and the first came out borderline positive, which about gave us heart attacks. The second came out normal. His blood work has always been off, but not crazy off. I assumed she was looking for more scarring in his esophagus or strictures - his past tests have shown scarring consistent with bad reflux. The nurse called and told me his esophagus looked good, noe strictures, no more scarring, but the Dr. wanted to see me that day. His twin Abby hadn't been discharged from FL Hospital yet, so I couldn't get him across town to Arnold Palmer Hospital on Fri. I don't know everything they did biopsies for, but when I google active focal colitis, which the nurse said they found, it says the causes can be colitis caused by infection (possible I guess, but its not as if he's more sick than he always is) ischemia (lack of blood flow usually found in old people) or Crohn's and that it especially correlates to Crohns in children. The nurse said I have to come in to discuss "his treatment options and plan" so I know there is something more involved going on. I've learned the only time I don't get details even when I'm pushy is when a Dr. has bad news and wants to give it in person! I'm going to assume he needs more tests though, since the GI hasn't done blood work in two years. Should I ask for testing for EOS? ( not sure what that is... Going to google it now!). Tha is everyone!
 
Katie, don't go looking for worse case scenarios. EOS is rare and will show up on biopsies, I believe. You'll have some answers on Monday. Rest today and try not to worry because tomorrow will hold plenty of its own stuff to deal with and you don't have the grace today to deal with the problems of tomorrow, but you'll have the grace tomorrow to deal with it when you have to.
 
KatieB - it sounds like you have had such a rough tie with your little ones - Good Luck on Monday - even if it is not what you would like to hear at least you will have a plan in place - and maybe some long awaited answers - sending you many hugs xxxx
 
KatieB said:
Yes, he frequently chokes, like with food caught in his throat and turning blue. It's not anaphylaxis and he has no food allergies. The Neuro had the GI look for strictures as a possible cause of his dysphagia, but its not that. She will also do a swallow study, but we now know the cause is neurological not GI related. In chiari, the back of the cerebellum is basically hanging below the skull instead of up in it as it should be. This restricts the flow of spinal fluid and puts pressure on the brain stem, causing a variety of problems. He is being admitted to the Neuro unit for a week for a full work up as soon as they call me with the date. Unfortunately, his GI is from the other children's hospital here in Orlando (one is best for Neuro, the other best for GI) so they can't just do *all* the tests he needs at once! He's already going to be put under anesthesia at least twice during that stay, and was under sedation for his endoscopy/sigmoidoscopy last week. I wish they could just do all his tests at once!
Click to expand...

What hospital do you use for GI? We are now at Nemours and have never been happier.
 
He is with Dr. Safder at Arnold Palmer but I was researching Nemours for if he gets diagnosed. AP is ranked higher, but his Endo is at Nemours, the twins' geneticist, and Infectious Disease Dr.s are also there. They go to FL Hospital For Children for Neuro, since they are the better level 4 Epilepsy Center. Who do you see at Nemours for GI? I also love their online records system, not that I would make a decision based on that lol.
 
We see Dr. Franciosi at Nemours. I was never offered the online records through the GI department but do use it through the Pulmonology clinic. Not all providers use it and I haven't asked if GI does. Franciosi specializes in IBD which is why I chose him for our 2nd opinion. He's fantastic.
 
Welcome Katie. Your childrens' health issues are certainly overwhelming! I cannot even begin to imagine. (I have a friend whose daughter has Chiari and related issues. When Danny first became ill with GI symptoms, my older son had a chronic CSF leak so I paid very little attention to Danny's symptoms for months.) I do hope you can get a quick answer and effective treatment for your son's GI issues. I am glad we have the HUG button ... I cannot press it enough for you!
 
New here.

We are trying to figure out what is wrong with our 10 yo daughter. She has been ill since Thanksgiving.

She had bronchitis and was on atb's and steroids. She also has asthma. While on atb's, she developed knife-like stomach pains. We figured it was the atb;s and she would be better once she was off them. Had her back to her ped a few times. They decided it was gastritis from the atb's. TOld us to see a GI. Meanwhile, the pain changed to a twisting-squeezing pain in her LUQ combined with cramping. It hurts more after she eats. Had a CT scan in the ER that showed nothing.

Got in to see the GI the beginning of January. Bloodwork showed celiac disease and intolerance to dairy proteins and soy proteins. Had an endoscopy towards the end of January to confirm dx.

Problem is, the pain is still there. She has also been running low-grade temps since December and is having non-stop headaches as well as the non-stop LUQ pain which she says is a 9 on a painscale of 10. We tried a 5 day course of prednisone 30 mg which did nothing to help the pain. She also started complaining a couple weeks ago that her knees are hurting. Nothing helps the headaches or the knees. The only things that help the LUQ pain are chamomile tea and gas x.

Saw the doc again last week. She ordered a repeat of all the bloodwork she had in January, plus stool for OB and an abdominal U/S. Now I am waiting to hear results from those tests. They talked about doing a colonoscopy, but did the U/S instead at this point.

This sounds like it could be Crohn's to me with the pain the fevers and the joint pain. I know the most common location for the pain is RLQ, but it can happen anywhere. This pain is different from the stomach aches the was having with the gluten.

Does this sound like it could be Crohn's to anyone else?

I should mention that she doesn't not have any diarrhea or constipation, but her stools were a yellow-green when I had to get the samples for the OB testing. She also has never complained about stomach problems in the past. It is just weird that this would come on so suddenly.
 
Hi nurseminnie..
Repeating coeliacs blood tests after going gluten free could come back negative!!

THe symptoms for coeliacs and crohn's can be very similar and it's possible to have both!

make sure you are really careful with diet. There's gluten hiding in so any things! My daughter has been diagnosed with coeliacs and we havegot rid of everything from our house that could contain gluten! Also got new pans, toaster etc. It is really easy to crosscontaminate. Even a crumb can cause problems!

Good luck, really hope she feels better very soon


:ghug:
 
Doc wants to see if the celiac blood work is going down. We have been so careful with the diet.
Doc is also looking at CBC, liver profile, kidneys, ESR, amylase and lipase. All that stuff came back normal before, so we will see. I was actually surprised the SED rate came back normal the 1st time since she has inflammation with the celiac and has been having fevers.
 

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