Sister's 10 year old boy

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Catherine

Catherine

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My sister and her family live in UAE.

Her 10 year old son has hospitalise twice in 5 weeks due to severe gasto. He has anemia. He was referred to a specialist due to Sarah's history.

One of his tests has come back positive for IBD marker. Any one know what this test would be?. The specialist will be do scopy but is concerned if scopy is done now with no symptoms they will return a false negative.

Wants them to watch for weighloss and pain, contact him direct if they occur.

His symptoms to match Sarah prior to dx. (eg up to about 6 months prior when things turn bad).

Does this sound like reasonable plan? Could an mri show anything?
 
I have no idea but sorry to hear it.:hug:
How's your sister doing with all this.
This has to be bring up bad memories for you.:(
Thankfully she has a sister that understands.
 
Would it be the Prometheus blood panel that he had done ?

I'm sorry about your nephew ~ I hope your sister gets some answers for her son soon! :(
 
:hug:
Sorry to hear about your nephew.

MRI did not show much anything for DS.
His disease is still inflammation ( pure) no stricturing due to his age.
We did wait to scope until DS was actively flaring since at the time we thought he had EoE and wanted to "catch" it.
We did not wait at ALL to have my older son scoped when he started to show signs...
which kinda leaves us wondering whether we scoped too soon KWIM.
 
The only test I can think of is what T has suggested.

Do they know that his presentations to hospital were gastro or could they be exacerbations of queried Crohn's?

It's hard to say with the scope. My son had just about zilch overt physical symptoms and the ones that were present had only been apparent for one week. The GP was able to palpate a mass in his RLQ though. All that said he was scoped and he did receive his diagnosis.

To me if the presentations could at all be IBD then they are pretty severe to require hospitalisation and so I think scoping would be worthwhile. I do fully understand the desire and reasoning to wait but even if it does return a negative result that doesn't negate continued monitoring and documentation by both the doctors and his parents and if the need does arise then scoping and further testing could be repeated.

I wish your sister and your nephew all the luck in the world and that what he is experiencing is easily treated, bless him. :hug:

Dusty. xxx
 
Dusty

My sister and her family in the Middle East. My sister said has if anything they are too quick to test. She does not believe he would have end up in hospital in Australia.

I am not sure he even lefted the ER. They were sent to the ER due doctors querying appendicitis.

My conversation with my sister have been via private messaging on facebook. And things are getting missed or coming across the way different to what we intend.

The test was faecal calprotectin she thinks, she does not know the number, but it had note recommending retesting in 6 weeks. The specialist does believe this is necessary as he will do scoping if the symptoms return.

His symptoms appear to be dizziness, stomach pain and mouth ulcers. All blood tests appear clear.

My sister says that even if he was dx with crohn at the moment, there would be no treatment as he has almost no symptoms. She believes if it is crohn, he like Sarah was 4 years ago, eg three years before dx.

Decide to leave any discussion regarding treatment options, until they know one why or another. Hopefully this is not crohn's.
 
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Hey Catherine,

I see what you are saying about the system there and the hospital visits.

The querying of appendicitis may raise some flags though but then I am assuming that perhaps they were seeing/feeling something in the RLQ. Stomach pain can relate back to ileal issues and the mouth ulcers could relate to a B Vitamin deficiency or an EIM.

The blood tests, as you know, may just not be telling the story.

I hope more than anything that your nephew doesn't have Crohn's Catherine, :hug:, but if these issues continue to persist I think there is enough to go on to at least rule it out, but that is just me. :)

I would advise your sister to start keeping a diary if she isn't already doing so.

Dusty. xxx
 
PS. If they were to diagnose him with Crohn's via a scope then he would have evidence tof active disease and therefore something to treat.

Dusty. xxx
 
I get the impression that their Gi, who is the head of surgery, believes its crohn's.
Before the GI worked in the UAE he worked for 20 years in Ireland. His is gut is telling him this is very early crohn's. His concern is that testing now will give only give false negative and confuse the issue further. He has already mentioned a pill camera if he need to see the small bowel.

I have asked for a list of all blood test done.
 
Oh Catherine...:hug:

It sounds as if the GI is well on the ball hun. With that in mind, and with your knowledge and experience, your sister has two very capable to help her through this uncertain time.

Again, I hope more than anything that it is not Crohn's but rather a passing anomaly.

Dusty. xxx
 
I am going to have that discussion about the need to treat even very early crohn's if found. I just happy there is a action plan.

They got to this point after only two months, it took us three years to get to this point.

Will ask them to start keeping a diary.
 
I hear you load and clear Catherine on both the need to nip in the bud early and the quick diagnosis!

Dusty. xxx
 
Just want to add my hope that this is not Crohns for your nephew!! I hope they are able to come to a more easily treatable diagnosis! :ghug:
 
My nephew has had stomach pains again after 3 months. They plan to do a fluoroscopy. Dr believe pain is too high for a colonscopy to be helpful.

Calprotectin is either 617 (husband heard) or 670 (my sister heard).

670 is higher than Sarah has ever tested.

Their GI has gone to the Uk for treatment advise while they wait test results.
 
Thanks for the update Catherine. :hug:

I wish they would do a colonoscopy just the same. I can't help but think of my Sarah, that was one of the reasons they didn't suspect IBD with her. All her pain was high in the abdomen and yet all her disease was in the terminal ileum.

I hope your nephew has solid answers and a treatment plan very soon.

Dusty. xxx
 
Dusty

Their specialist believes it is Crohn's. Is now testing to prove he is correct.

Do you how any other causes of high calprotectin?

This specialist believes the high calprotectin and family history all point to Crohn's.
 
The specialist is saying that it looks like small bowel crohn's only, that why he wants to do other testing first.
 
Since it is a measure of inflammation then anything that has the potential to cause inflammation of the gut may produce elevated results. Gastritis could, the use of aspirin and NSAID's could, neoplasms could etc.
With those things ruled out and in the context of presenting symptoms then elevated levels of FC can be a very reliable indicator of IBD. Now the thing is they are not a diagnostic tool and are usually used as a way of predicting whether to perform more invasive tests. So an elevated FC should be a justification for scopes for the GI.

I can see what the GI is saying but since about 70% of all those with Crohn's have some sort of ileal involvement it seems logical to at least visualise the TI and just beyond via a scope.

Dusty. xxx
 
They need to to do an upper and lower scope which is now the standard in children since most have crohn's in their upper as well.
Obviously an mre with pillcam would be the best after the scope.
Hope they get to the bottom of it.
 
Hope your sister and nephew get answers really soon, it does seem that the GI is on the ball.

x
 
Sorry to hear about your nephew. At least they are taking it seriously because of the family history otherwise he could have been simmering away for years without being treated. Sounds like the GI is very thorough.
 
Agree with Sascot that it's good his symptoms are being taken seriously and looked after quickly. Just sorry to hear that it does, in fact, look like crohns. :(

The nephew of my friend whose daughter has crohns, was also recently diagnosed with UC. :( He is also around 10. Due to his cousin's diagnosis, his symptoms were also taken seriously and diagnosis was fairly quick.

Not sure if IBD is, in fact, becoming more and more common or if it's just my awareness that's grown but just seems like so many people are affected by IBD! :( :(

Hugs to your sister and nephew :ghug:
 
Hi Maree just calling you to this thread.

Welcome to the forum. Maree is my sister and this is thread is about her son.
 
Hi, just found this forum, Catherine has done a good job of updating you all on Liam’s recent health adventures, but I’ll run through again, from the first hand perspective.

In Sept Liam had two visits to GP’s with severe stomach pain. Each time they ran lots of tests including an abdominal ultrasound, which all came back clear and then was treated for gastritis. We discussed Crohn's at the second visit and the GP said that if the pain reoccurred again he would refer him to a GI. A few days later we had a call from the GP to say that he’d discovered there was a new test that was a strong marker for Crohn's at which point Liam had the Calprotectin test and based on the result (I thought he said 670 my husband thougth 617 )was referred to the GI.

By the time the Calprotectin results came back Liam had, had no symptoms for a couple of weeks and the GI was uncomfortable running scans as he felt there was a high possibility of false negative results, so a clear result would not actually tell us anything.

He told us to come back as soon as the stomach ache recurred. The stomach pain recurred over the weekend. When I contacted the GI's office on Sunday morning (Sun - Thurs work week here) for an appointment it was clear he’d marked Liam’s file as urgent and the office girl apologised for the 2 hour wait before she could slot Liam in.

At this stage the GI has redone the Calprotectin test and scheduled a Barium Meal Follow through X-Ray (Fluroscopy) for Thursday. He says this is a very old school test that isn’t commonly done anymore, but that it gives a good overview of the whole digestive track, which can be good in working out where to focus attention with more invasive tests. He has requested that I ring him on Thursday morning to remind him that he needs to talk to the technician to make sure they are focused on what they are looking for.

He did discuss the idea of a PillCam, for general overview but decided that he thinks Liam is a little too small for that.

Apparently due to Liam’s age scopes will require a General Anaesthetic and there is a chunk of the digestive system that they don’t show (which the location the pain suggests might be the problem area). My understanding is the GI hasn't ruled out doing scopes but he’d simply prefer to start with a less invasive overview of what is going on.

(Hopefully this time I'll manage to post this in the correct spot, not sure what I did wrong on 1st attempt)
 
Hi and welcome.
Just let me start by saying what a wonderful sister you have. She's been a great support to all of us. OK brown nosing is over.

Your GI sounds like a good GI.
(I'm about to state the obvious)
However, as I am sure your sister has said scopes are the only way to really see what's going on. My Grace has normal labs, test and even her scopes looks clean but on a microscopic level she has problems.
I'm just so happy to hear that your doctors are taking this seriously and want to help.
I hope your child doesn't have this but if he does it sounds like your in good hands.
Plus you have a big advantage....you have a sister that knows what your going through.

Hugs to you both.
 
I forgot.....
I feel Grace has damage in her small intestine that can't be seen with a scope also.
My GI is also reluctant to do and MRE because?????? I'm not sure why? I think it's becuae of her young age.
 
Welcome Maree
I have to agree with scopes but either way I hope you get answers soon and Liam starts feeling better.
I have to agree with farmwife you have an amazing sister who provides lots of support here.
 
I just wanted to welcome you to the forum, Maree. I do hope they are able to determine the source of your son's issues. I agree with the others on the scopes but my son didn't go straight to scopes either. I think we had a SBFT(small bowel follow through) then endoscopy and sigmoidoscopy(which was useless imo) then MRI(which showed thickening at TI) then colonoscopy. Of all the testing, the colonoscopy was the easiest for my son as the drinking of contrast/barium for the others made him extremely ill.

I also wanted to chime in and say your sister has been a source of great support on this forum!!
 
Hi and welcome Maree....:hug:

I agree he definitely needs a scope .
.
 
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Hi Maree,

Welcome to the forum! I'm sorry that it seems your son is having this problems! :( Hopefully, you will have some answers soon!

You do have a wonderful sister with tons of knowledge to help guide you through this! Between your sister and the support and advice you'll find here, hopefully, getting through this time won't be so overwhelming for you! :ghug:
 
Hi Maree,
Welcome, as the others said your sister is great and you are lucky to have her. I also agree with the others about pushing for scopes. How old is your son? By the way I love the name Liam,my oldest was almost Liam but we decided on Sean for our favorite actor Sean Connery.
 
Barium Follow Through Scan essentially clear, only unusual thing it shown was intestinal hurry in the small bowel loops.

Next step colonoscopy and biopsy.
Currently waiting on Insurance Company approval before we can schedul.e
 
Glad the sbft was clear.
DS was completely clear on his except the TI which they couldn't see -
Get this the radiologist at the time was quite adament that at least we didn't have to worry about "it " being crohn's since the TI didn't light up at all.
Crohn's was not on any ones radar at the time and we had no idea what Ibd was.
Hope the scope is quick.
 
Maree, is your dear son feeling better now? I know he had "gastritis" as a prelim diagnosis and seemed to get better with treatment for that. Perhaps that is what made his fecal calprotectin level high. Did his fecal calp test come back better after that? Have they done any other tests like ASCA (I don't remember what it is), sed rate, vitamin levels? Is his weight stable?
 
My daughter is Liam first cousin.

Her early presentation was "gastritis" as well. With the gastritis events no one else in the family ever got sick.

This is why the events are being taken so seriously.
 
I know Jaedyn did too, but I was thinking that someone said the F C test could be elevated by that, and that he got better with treatment, so I am offering hope...
 
Liam has had stomach aches again for the last fortnight, following School Beach Run. He finished 2nd but was doubled over in pain for about 20 min at the end and his stomach has not settled down again since, but it's been a demanding fortnight. My feeling is all 3 episodes of pain seem to have been triggered by particularlly intense sporting things.

In between the bouts our main issues we're mouth ulcers and dizzyness, disorientation & headaches. The later 3 occuring multiple times a week and always triggered by sport. My guess has been dehydration. I've taken to giving him gatorade when he trains or competes which he likes, and pediatric electrolyte afterwards when if he looks bad or complains about feeling unwell. He believes both of these help and visually they do seem to make a positive difference. Until this last bout that combination seemed to keep things contained but not really at a point I was happy with. It just doesn't seem to be possible to get enough fluid into him. It also worries me that it is Winter here and that he might get worse again when it heats up.

Liam is a very sporty kid, he trains at football 3 days a week and is on school squad & elite U12 school (for set of a dozen schools). Since the two bouts at the start of the year, I make sure I attend all after school sport and any inter school sport, keep a close eye on him and pour fluid into him at every opportunity.
 
Caroline

I hope more than anything my nephrew does not have crohn's.

But the way he is presenting is so much like Sarah early on it scares me.

By the time Sarah was dx, she was severe anemia and lost 14kgs in two months. Her specialists believe that she had activie crohn's for least 3 years prior to dx. Her inflammation was already chronic.

My daughter's crohn is mostly silence and she developed a fistula while appearing to be in clinical remission.
 
Maree

I don't know whether you remember this, Sarah had two faints while exercising before dx both occurred while running. Plus other faints not related to excercise. Went to neurologist, had an ultrasound of the heart and echo done both clear.

She only told me in the last fews days that she was often dizzy at swimming training. This does not occur anymore.

She hadn't fainted in the last 9 months.

If Liam has dehydration when blood in taken, his hemoglobin levels could be appearing normal when they are in fact low.
 
The GI is with you Catherine. He's not at all comfortable with what is happening and has emphasised repeatedly that if all the scans come back negative we shouldn't rule out Crohn's it might just be too early to see.

He has only treated patients with fairly advanced Crohn's, where it's obvious on scopes. He really doesn't know what it looks like in early stages.
 
Will add to my system list - loud, painful burps, that visually look quiet dramatic (often seemed to be accompanied by a spasm of pain that will double him over momentarily but then he bounces back to normal fairly quickly.

The burps only happen at times when the stomach pain is present.
 
Yes Grace gets those but her tummy doesn't seem to bothered by it.
I was told gastritis or it also could be reflux at the same time?

HUGS
 
Hi, haven't popped on to say welcome Maree. Hope your son gets some treatment that helps!! When you mentioned pain coming on after sport, I only just remembered my son had that problem a couple times. Thought he had pulled a muscle in his tummy at first, but it lasted for ages afterwards.
 
Thanks for the welcome Sascot. Each of the episodes has lasted two to three weeks.The first time they thought appendicitis then end up treating for gastritis, current episode is the third one (all this school year), he is now in his third week of stomach pain. His GI hasn't even tried treating it as gastritis this time as he is convinced that isn't the problem. He has short blocks when the pain is clearly intense (can tell my his body languages & facial expressions) but most of the time it's moderate pain that panadol is able to get down to levels that he can cope with. Hopefully it will settle down again soon.

As of yesterday afternoon we now have insurance company approval for the Colonoscopy. So currently chasing the hospital for an appointment.
 
Just heard back from the hospital, the GI has scheduled the Colonoscopy for 9 am on Saturday morning. I'm actually quite impressed that he's coming in on the weekend to do this as I know he doesn't work Saturdays.
 
Amusing anecdote I need to share.

When I explain the Barium Follow Through X Ray to Liam I told him that the stuff he'd have to drink was a little like liquid chalk. Turned out he didn't know what chalk was and I had to explain it. The next day he told 13 year old big brother (Owen) they we're going to make him swallow a white board marker, which my oldest one thought was hilarious.

A week later Owen just had to say the words White Board mark to wind Liam up. I can't help being amused and have had to work hard to resist fits of laughter, because Liam does not see the funny side of this at all.
 
Colonoscopy Prep going well. GI gave him Fleets Phosphosoda which Liam says tastes worse than White Board Marker but he drank the first lot (half a standard dose) with only moderate level of face pulling and fuss.

I've let him spend the day playing computer games and watching movies with big brother, (not normal in my house) it's been good that it's a weekend day and Owen's home. Liam's has been drinking really well (has had about 3.5 ltrs of fluid so far today) and my impression is the process is going fairly well. He had one more half dose of fleets due later this afternoon.

I commented that I thought it was going really well and Liam rolled his eyes at me and told me "it's been really really pleasant." Which made me laugh, he pulls the best faces.
 
LOL I hope it continues to go really pleasantly! Good luck with the scope and I hope you get definitive answers! :)
 
Have to say pleasant is never one I've heard associated with the prep :ybiggrin:. Good luck for tomorrow!
 
Second dose of fleet has hit him much harder, but he's still smiley and entertaining despite 2 hours of fairly constant diarrhea. Could be a long night (currently 11:20 pm) here but I think he'll be fine.

Purely by chance this has concided with my husband being home for 4 days, one of two 4 day stints he's with us during a 6 week block working fulltime on a project in KSA. Nice to have someone to share the load with other than my 13 yr old (not that I'm complaining about my 13 yr old who's fabulous.)
 
Colonoscpy showed no inflamation. GI took a set of random biopsies.

We go back to see GI on the 20th when he should have results of the biopsies and the 2nd calproc test.
 
Grace had microscopic inflammation. What was seen by the scope look clear and we were sent home in despair However, what wasn't seen showed a very different world.
Hang in there!
 
I like the GI had he warned us in advance that he was concerned the scopes wouldn't show anything and that he would not view a clear result as ruling out Crohn's.

My current plan is to take a very positive attitude to the results around Liam, to reduce any anxiety he may be feeling. Then see how he goes and what the other results look like. If the pain we're to settle down by itself (as it has on previous occassions) and the test results looked alright I'm definitely open to a wait and monitor approach.
 
That is the way I felt at first, but then I decided that we had been doing that too long - for us it had been years of trying to jump through hoops to get our daughter to eat, crossing our fingers that she wouldn't have a reaction to the food, etc. I finally realized (we'd been given a diagnosis of Crohn's) that I couldn't control it any longer, that my own efforts had failed, and looked to the treatment options. I think then I accepted the diagnosis and the hope (as well as the heartache) that comes along with it.

I hope your doc is very thorough and that your wait and see approach doesn't prolong his suffering. I know your son is not my daughter and that you don't have a diagnosis yet, which would at least let you know what you are dealing with. That is the hardest thing, isn't it!

Keep us informed on any new developments. You are in my thoughts. :hug:
 
Hugs it is very hard when the scope shows normal but they are in pain.
Fwiw at dx DS had a clean scope. Gi warned us it was functional.
Biopsies came back showing acute and chronic inflammation consistent with crohn's from stomach to anus. :(

He had the a biopsy clean scope of just upper Gi tract the year before.
Good luck
 
While waiting and seeing. I would monitor iron, folate and b12 via blood tests.

Sarah's iron studies were the first thing that showed problem. She also had falling b12 and rising folate levels.

There is know problem in mum side of family with b12 levels and multiple cases of dx of ibs.
 
Hi Maree,
I just wanted to say welcome :)

I'm glad the scopes went well, and I love that you have such a great sense of humor while going through trying times.
Sometimes, laughter is the best way !

I'll be waiting anxiously, along with the others, until you get the biopsy results.
I suppose there is some relief in you to know that there wasn't any visual damage ~ I hope you get some solid answers soon!
 
GI's office rang today to say test results back. We we're able to move our appointment that was booked for Thursday to tomorrow morning (Sunday is a week day here).

I know it would be a positive sign if the biopsys result are clear and the Calcproc has gone back to normal levels.

However I'm concerned that the stomach pain seems to be getting worse not better. He wokes sobbing last night complaining about vomiting into his mouth and sharp pain just above his sternum. Which is new. He was in sobbing pain and so distressed I thought about taking him into our local 24 hour GP clinic & we all got up and dressed only to have him burp loudly and the pain disappear almost immediately.

So if the answer is watch and monitor I'm also going to be looking for some ideas on how we get him feeling better.
 
The burps are extremely painful and have only been present for about a fortnight. It's not something that he's had in the past. Got to agree the incident last night does sound like acid reflux but it's new, has not happened to him before.
 
Yes Grace gets that. She's on Zantac and it helps but doesn't stop it all the way.
Did your son have a pill camera done?
 
No has just had Barium Follow Through X Ray and Colonoscopy. Given his symptoms are high, (stomach pain around the belly button) I suspect he probably does need more imaging done. I'm definitely feeling if the Calproc test comes back high again, that we need to keep looking.
 
Good idea. Please keep in mind some of our kids have normal calproc in the stool. Even though we know their active inflammation happening. Also some think the higher up the inflammation (sm. bowel) the less likely you'll see high counts in the stool. I'm not sure if theirs a study about that, I'll have to look.
I think my Grace has problems in the small bowel and thats why she backs up and get acid reflex. Her stomach upon scoping show no damage. I'll be pushing for an MRE or pill camera at her next GI meeting.

HUGS
 
Good luck with appointment today. Does Liam have any diary?

I know he had a problem with it as baby. Sarah and I have a problem with lactose it gives Sarah stomach ache. I get reflux from it.
 
I hope the appt goes well. I don't know if you've done it yet or not, as it is 3:36 pm on Saturday here... I hope you can get some solid answers soon.
 
Good luck at the apptmt! Before being diagnosed, Stephen also complained of heartburn and said it felt like there was something 'blocking' when swallowing food. It went away once he started EN to induce remission.

HOWEVER, as the NG tube leaves the 'flap' between the esophagus and stomach open, he was prescribed nexium to alleviate problems if acid was released into his esophagus (which likely helped his initial heartburn symptoms too).
 
GI appointment still a few hours away.

Liam does have some moderate amounts of dairy we reintroduce when he was 2, we've not seen any clear link between food and symptoms.

Did discuss at the last appointment and the GI was reluctant to exclude any foods that he was happily eating.

I'm cautious about food avoidance diets having endured years of them as a child, which always seemed to make me sicker and definitely made it impossible for me to stay at a healthy weight during my teens. I remember clearly the sheer joy & massive relief of leaving home and being able to throw away all the rules on what I could and couldn't eat.
 
Everything clear - biopsy clear, calproc totally normal
GI will talk to lab about whether first calproc test could have been an error.

Prescribed Pariet & Motileum for 10 days to treat symptoms

GI ordered another ultrasound, which was done while we we're there (I think to look at gallblader) and another stool tests (something different not previously tests, but I don't remember what).
 
Has he ever had a proton pump inhibitor such as Prevacid?
I know for my older child lots of similar issues clean scope etc but only really needed a ppi.
A standard h2 blocker ( Zantac) was just not string enough.
It did take a few weeks though before things improved.
 
Day 1 with on PPI & Motileum Liam looked much better, first day in weeks with no pain, burps still there after meals but minus the pain. He was also ravenous and ate more than I think I've ever seen him eat (he's always had moderate to small appetite). Not sure if increased appettite normal symptom with these medications.

Day 2 (Today) he looked good in the morning and I just got an email from his teacher to tell me how much 'brighter' he's looking.
 
Liam's ultrasound and additional stool test came back fine.

He's still feeling fabulous and eating everything in sight, he commented yesterday that he felt like himself again, for the first time this school year.

Yesterday he got through a football session without any ill effects -first time this year he's not sufferred afterwards, even during the months when the stomach ache disappeared he was always looked wretched at the end, and sufferred from headaches and dizzyness following all his training sessions.

We go back to see the GI on Wednesday next week, I'm hoping that with this increased appetite Liam might put on some weight.
 
Liam has now had a week on PPI & Motileum and feels and looks great. During this week he has put on 2 pounds after not gaining weight for 6 months. His BMI has jumped from 14.5 to 15.0

We go back to see the GI on Wednesday, will be interesting to see if he recommends stopping one or both medications. Although I'm thrilled that Liam is looking so great, I think there must be an underlying issue of some sort or he wouldn't have responded as strongly as he has to these medications to treat the symptoms.
 
Gi is still following him.
Current dx is uncontrolled reflux.
Gi said when the stomach is inflamed from reflux/gastritis it can sometimes cause pain lower in the Gi tract , disrupt sleep, make you not want to eat etc...
All these things combined makes for a kid in pain, losing weight and fatigued.
Cure the reflux with a ppi
- new kid.

Given DS history of Ibd - we are still keeping a close eye as is the Gi but hoping a ppi is all he will ever need :)

Good luck Wednesday
 
Maree, for your information only I have been taking medications on and off for heart burn/reflex for 18 years. Remember as a kid i would have mum to write notes saying I didn't eat anything with cream as it would make me feel sick. Within 3 days of removing lactose from my diet the heartburn when away.
 
Liam's GI is happy with the improvement, has stopped the Motileum but said keep the PPI going. Has suggested that we keep it at daily for a month then see if able to cut it back to every 2nd day.

Has suggested we bring Liam back to see him in 3 months if he's still needing the PPI.

So it really is wait and see. Will continue to keep a close eye on whats happening with his weight and height.
 
So happy to hear Liam is feeling so well! :banana:

My husband and BIL have the same issue... both have constant reflux issues. My husband takes nexium daily, has for years now. But, do be sure you control it - my BIL was much more lax about it than my husband, regularly ate foods that caused more acid for him, careless re the meds and, his esophagus became so damaged from the years of abuse, he had to remove a large section of his esophagus (at about 50+ years old, so I do mean 'years' of neglect)! :eek: They had to 'stretch' his stomach upward to connect to what was left of his esophagus and his stomach now sort of acts as part of his esophagus. Incredibly, he is doing very well but, as you can imagine, it has left him with some issues - no heavy meals, no large meals, easily digestable foods, etc.
 
I will definitely keep an eye on things, I looked up the list of food that cause acid following you mentioning it reads like a list of things Liam makes a fuss about eating
-- High fat foods
-- Junk food
-- Chocolate
-- Eggs
-- Citrus
Will need to watch the tomatoes though as that creeps into lots of things.

He is the sort of child who has claimed since pre school age that junk food made him nauseous and that McDonald's is child abuse.
 
It’s been a month since I posted last so thought I’d update you on how Liam is doing. At the same time Liam stopped Motileum we introduced some diet changes to try to reduce reflux. The first couple of weeks we’re pretty tough with lots of several bouts of stomach pain & reflux, but he has steadily improved (I think partially because we’ve managed to identify and remove several trigger foods, I’ve listed diet changes at the end.)

Stomach aches & reflux have been gone for about 10 days. He no longer gets dizzy or suffers from headaches and his appetite and energy levels are back to the level they we’re 12 months ago.

Continuing Issues: Mouth ulcers (3 this month, 1 at present), Rash looks like Molluscum-Contagiosum, he’s had this for 18 months and no new patches in last 8 weeks.

- Weight back down to 29.1 kg, similar to when he started medications. But he’s tracking nicely on height, grew 1 cm in last month. He’s been between 29 – 30 kg all year for weight but grown 8 cm. Current BMI 14.4 which is 5% percentile.

Next Step: Due to cut back PPI to every 2nd day as of tomorrow but will wait until next week as we are heading to India for 5 days from Thursday.
Although he’s feeling great on current diet & med combination and eating well, I’m conscious that at 10 ½ he should be entering a major growth period and that not losing weight isn’t good enough, he needs to be able to gain weight, so feeling that need to consider supplementary EN.

Diet Changes: Trying to reduce some things which might be causing issues while not attempting any of the very difficult/demanding diets.
- Removed all high acid foods, the few times he’s had these it’s been clear they cause issues
- Have got very fussy about fat on meat, even the smallest amounts seem to cause issue
- Replaced sugar in baked items with agave/stevia.
- Swapped to Lactose Free Milk initially & then to Homemade Yoghurt (non SCD compliant)
- Swapped his water to bottled mineral water with PH 7.8 or higher as our water slightly acidic, this seems to have resolved the dehydration issues he’s been having all year.
- Reduced his breakfast cereal intake, (this is the thing he misses most) but high fibre cereals seem to consistently trigger pain. I’ve been making fruit & nut breads multiple morning a week, plus making lots of breakfast smoothies.
 
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Glad he's doing well! But, yes, if he doesn't begin to gain some weight, I would also consider supplement EN... it certainly can't hurt. :)

In the Diet for Kids thread, there were lots of smoothie/shake recipes recently posted and, at least one or two, included Boost/Ensure. :thumright:
 
With impecable timing Liam stubbed his toe on a corner this morning (while kicking a football inside grrh), and gave himself a cut between two toes, which required 6 stitches.

So as well as the anti milaria tablets he started yesterday, he's now on heavy duty antibiotics for the toe. The doctor also prescribed a NSAID for the swelling which I'm very relucatnt to give him am keeping a close eye on the swelling and hopeing we can get away without it as I've read lots of bad things about impact on the digestive system, but whether or not we can avoid will depend on how much the toe swells.

Liam has struggled to eat today and had bad stomach aches following lunch (my guess is caused by the combo of new medications) but he assures me he's totally fine!

We head to the airport this evening to catch our flight to India, we're spending 5 days at a lodge in a tiger sanctuary near Chandrapur & the boys are incredibly exited about the trip, here's hoping that the stomach ache will settle and his appetite return.
 

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