Sister's 10 year old boy

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Maree, Grace was also a hard clean out. Keep in mind she could go days with out going poo even with meds trying to help her. By the time she went in for the scopes she was cleaned out. I asked the GI if she was total cleaned out and he said yes. It will be ok, if not they will help at the hospital.

Is he drinking enough?
 
I forced lots of drinks & clear jelly into him all afternoon/evening, but have to say I wasn't as successful at getting the fluids in as last time. By late evening drinking had got very painful. I think because nothing much was coming out he just ran of space for more fluid.

Have been wondering if I should wake him and give him that 2nd Fleet dose early in a hour or so (say 3 am rather than 5 am), so we've got more time for it to work prior to the drive to the hospital, given nothing much moving yet.
 
5:30 am now we gave him 2nd lot of Fleet at 4.00am.
Which triggered severe pain but nothing else.
He's finally resting quietly again.
 
Sorry to hear that. What does he think of all this? I mean does he get why he's going through all this?
 
At 10 he understands that he's not been well and he knows that he needs these tests to try to work out what's wrong.

He doesn't understand it hurts so much this time, his last colonscopy prep (about 10 weeks ago) was completely different. He hated drinking the Fleet and it was nothing like this level of pain.
 
Wow. I can't imagine all those enemas and fluids and NOTHING coming out! Poor boy! I hope they are able to help at the hospital!
 
I guess it's probably over by now. I hope the scopes went well. Sorry to see L had so much trouble with the cleanout:(
 
Thanks everyone.

The day was a bit of an ordeal, and in the end the cleanout ordeal was probably more enlightening than the scopes as to what might be wrong, which we'reclear other than a small nodule in the wall of the stomach with the GI is fairly confident is harmless (he thinks it's a clump of pancreas cells growing in wrong place.) We will get biopsy results in 10 days. At which point we'll have followup appointment to discuss next steps.

Liam had small amounts of diarrhea before getting to the hospital. Then after an enema more diarrhea which although liquid was still brown. GI used suction to remove fluid from colon and was able to complete colonoscopy, however there was still material in the small bowel. (Colonoscopy & Upper Endoscopy took over an hour).

Mid afternoon a few hours after the procedure was complete, when they gave Liam something to drink it triggered another bout of bad diarrhea followed by passing of chunks of undiagested food (tinned fruit which he'd eat with breakfast the previous day.) He also had several bout of vomitting which mean't that it was 7pm before he was discharged (we we're at hospital from 7:30 am & procedure started at 9:30am)

GI says that although Liam has daily BM he thinks they are old stool & that this looks lika a motilty issue. He has prescribed Liam Domperidone and would like us to try a diet which he thinks might help with the motility problem. Haven't seen details of this yet.

And as an aside that I probably didn't need to know the GI admitted after the scopes that the reason he'd insisted on repeating the colonoscopy so soon after it was last done was that he was concerned that Liam might have lymphoma, apparently he'd explained that to my husband on the phone. I'm so glad neither of them decided to mention it to me until after the test had shown no sign to support that idea!
 
Glad it's all over! Good there was no sign of lymphoma. Hope the new med and diet helps with all the issues!
 
:ghug: Poor Liam! Sorry I missed all of this.. Enemas and clearout producing nothing sounds familiar!!

Would be really interested to know what diet they think will help. All J has been advised is lots of small meals, low fibre! Hope domperidone works for him.

((hugs)) :ghug:
 
Since you hard day I will let you get away with forgetting what yesterday was.

Glad Liam ok.
 
Oh Maree!! I'm with you - sometimes I'd rather not know! Glad your home - what a day you all had... Praise the Lord no lymphoma!! You're an awesome Mom!! Praying the new med does the job!!
 
On a more serious note, we received a visual dx of Crohn's after the colonscopy, but had a ten day wait for treatment while they did a MRI and rule out cancer.

A good GI/GP will rule out the most serious causes first.

We saw first hand with Sarah's class mate Tim that wrong dx of Crohn's and wrong treatment plan can be the most heartbreaking of things.
 
My heart goes out to you. I know how challenging it can be to be an expat and have to deal with all the issues that go along with that, from having to decipher cultural and language issues to having to be very independent and self sufficient.
I am hoping it all went smoothly and you are both resting comfortably. Sending lots of positive thoughts and good luck your way.
 
14 days on from treatment of Liam's Molluscum Contagium, we saw the Dermatologist and she prescribed a different cream to treat the worst of the sores which are mildly infected and got her to check on the fungal infection on his foot.

She asked does he eat properly? and told us she thought there was something very wrong with the way his body heals wounds and sores. We explained at length where we are at with his stomach problems. She said that she thinks his stomach isn't absorping vitamins appropriately and that's why his sores aren't healing.

Will try to get the GI to check some more of his vitamin levels at next appointment.
 
Day 4 after colonoscopy and still no BM. Yesterday Liam struggled to eat or drink as feeling too full. This morning the same. Like during the colonoscopy prep it feels like things are banked up high up rather than in his colon, pain around belly button and water causing pain and bloating.

Stopped in at the school doctor this morning and discussed how the tests went and that nothing is coming through his system at the moment. She said he should be at school but no sport and that he is to spent recess & lunchtime in the medical office where she can keep a watch on him.

Liam isn't scheduled to go back to his GI until the biopsy results come back which probably will be the start of next week, but I'm feeling like if he's no better when I pick him up this afternoon I probably should ring the GI. Thoughts?
 
Maree I'd ring that doesn't sound right to me.

They might even have the results back....Farmwife had them back the next day.
 
My understanding is the biopsy samples have to go to Germany for testing which is why it takes so long. School doctor thinks I should push the GI to do an MRI next, she thinks a pill cam would be a bad idea as it might get stuck.

Will have a good chat with her when I pick him up from school on her thoughts about how he's been today & then if he still hasn't passed a BM will ring GI. She hasn't rung me yet which is a good sign.
 
Oh my goodness, I am often heard to say, what ever I did in a previous life to deserve all of this I damed well hope I enjoyed it ! Maree you must of really been up to no good :smile:
For what it's worth our GI doesn't want to do the pill cam until she knows there are no kinks or narrowing, however this is new territory for Nick. They have never seen this part of his GUT as they love to call it.
I do hope you get results fast. I know sometimes the local GP's here in KL send things to Australia for testing but the bigger hospitals seem to have there own facilities. This does not mean they are well versed in IBD as it is VERY rare here, may be Germany is a good thing. Fingers crossed.
:ghug:
 
Predictably my husband left this morning for two week work trip to Saudi so I'm here minding the fort on my own again. Which just reinforces your point Jane.:evil:
 
Isn't that just lovely ! I know it's their job and that's what pays the bills and they feel really bad for not being here and its what we signed up for etc....don't you just love it when they call just before they are going out for dinner, yes you know dinner when some one else cooks it serves it to you AND clears up! No one complains or wants 3 different things or is,not feeling well has a fever, OK now I am ranting. I REALLY do feel your pain.
This is a blog post I think you would REALLY enjoy please check her out she is a great distraction

4 kids, 20 suitcases and a beagle: It's Not A Journey
http://shamozal.blogspot.com/2013/05/its-not-journey.html
 
Me again LOL, please look at her other posts, this one not so prevalent but her other stuff is super funny from a expat moms point of view.
 
Still no BM but he looks a little better at the end of the day. School doctor thinks he's fine at this point but said to let the GI know that we still haven't had any BM.
 
Spoke to GI he says constipation normal following an endoscopy nothing to worry about at this point. Colonoscopy/Endscopy results we're back, GI said everything looked really good.

The lump in the stomach wall is not showing as malignant but not pancreas tissue either so will need annual biopsies.

At the moment Liam's GI wants to treat this as IBS for the next few months then re-evaluate in Sept based on how he is doing. I don't like the sound of this at all but not sure we've got a lot of choices at present other than to go along with recommendations and make meticulous notes regarding food consumption and symptoms.

He's given us a diet for Liam main changes are it reduces dairy, and takes out most carbohydrates and cuts back on fruit juice. He's also requested I stop giving Liam Ensure's as he thinks they may be part of the problem. He's scheduled next checkup for 3 weeks.

My gut feel is Liam will lose weight on this diet but perhaps at this point that's necessary in order to get any further investigation done.
 
Liam has a BMI of 13.8 at the moment so I hate the idea of him losing more weight but short of that I don't think we are going to find any real answers.

GI says he wants to understand what happens to Liam's weight and symptoms with normal calorie input as he thinks the current high calorie diet has been confusing matters.
 
We had that problem as well with DS.
It wasn't until we decreased his kids boost shakes and we saw a slow weight loss did things start to move a little quicker from a Gi standpoint.
 
So sorry Liam is still having problems
Wish you had a quick answer, but
Unfortunately for I have learnt about this
Disease is it is never simple.
Hugs
 
It is so frustrating when there are no clear answers!! I really feel for you both. :ghug:
 
Have now looked at the diet and its basically a low carbs diet, with restricted dairy.
It feels like it's a weight loss diet.

I sent a copy of the diet and details of what has been suggested to my husband and he's really uncomfortable about what's being proposed. Will take the diet in to school tomorrow and see what the school doctor thinks. I've got a lot of trust in her opinions, and she knows Liam better than any of the other medics who he deals with.
 
No. The restrictions in that diet seem to make a lot more sense.

There are less restricted items on the diet Liam has, but some things that are restricted are ok on FOODMAP:
- does not allow rice including brown
- does not allow pasta or noodles of any sort regardless of ingredient made from.
- restricts potato and eggs and fatty fish (eg salmon)
- dairy restriction doesn't differentiate between lactose free and other dairy

Major limits on what foods can eat after 2pm.

Also oddly excludes banana's the only reason I've come across for not allowing banana's is High GI and I don't understand why that would be relevant.

25% of Emirates are diabetic & the clinic where he works specialises in diabetes. My gut feel is that it's a generic diet he gives to patients with gastric issues and the bulk of patients he treats have problems with diabetes and obesity as well as stomach issues.

The message I'm hearing is cut his carb intake, cut his calorie intake, cut the quantities of food he eats and his digestive system will heal and he'll get better. Which isn't a message I'm feeling very comfortable with.
 
Very frustrating! Maybe I missed the explanation but did GI say how he thought this diet would help? What is he trying to remove from Liam's diet and how will that help him, ie what is he expecting to happen after Liam is on this diet for a while and what does it mean if he sees this 'result' or if he doesn't see it?

I can understand that the GI doesn't want to 'cloud' the issues by having Ensure, in a sense, forcing the weight gain but I think you may feel more comfortable if you knew what milestones Liam should be meeting while on the diet and what would be a red flag if he doesn't meet them.
 
He said this was a baseline diet to give a starting point in terms of symptoms & weight change, prior to looking at excluding foods.

GI doesn't seem overly concerned about Liam's weight says perhaps I've been worrying too much about it, and in the process have been contributing to or causing his stomach problems. That he might just be a naturally very skinny child and be healthier with a lower food / calorie intake and a lower body weight.
 
A boy his age should be gaining 12lbs a year. Dr.'s tried to tell me it wasn't a big deal that my son was losing weight either. :voodoo:

I wish I had some good advice for you. (((hugs))))
 
I'm confused why the doctor would do anything that would decrease his calorie intake... I would want more of an explanation of "why" that is a good idea, not a "let's see what happens to his weight if we don't give him extra calories."

I hope he's able to "go" soon - that's miserable :(
 
Sorry you haven't got the answers you were looking for.

What are Liam's current symptoms:-

- Lack of weight gain
- Stomach Pain
- Acid Reflux

I will make some just in case enquires:-

I will be at our GI office tomorrow and will check into the referral process for a non Australia resident.

I will also try and find out whether a MRI with contrast, can be order by a GP in Australia.
 
Maree

I have rang the GI rooms, no referral needed.

Both pedi GI booked up to end of July already. One works at Monash medical centre and
the other Royal Children's. They both have parients comming from Western Australia and New South Wales to see them.

To get an appointment in August we would need to book next week. They only see private patients once a week.
 
my little penguin said:
We had that problem as well with DS.
It wasn't until we decreased his kids boost shakes and we saw a slow weight loss did things start to move a little quicker from a Gi standpoint.
Click to expand...

I think we have this problem too. Every time we go to GI they are happy with my son's weight. I try and stress that it is a struggle to keep him at this weight and that we give in 1 - 2 shakes a day and I constantly shove food in his face. I have wondered what would happen if I just backed off on all those extra calories. The mommy in me can't do it though.

We tried the FODMAP diet last year. It didn't work. But we probably cheated a little too. It was very hard for my son to cut out bread. The one thing I have kept up is I have kept his diet low in lactose. I feed him lactose free milk, lactose free yogurt, and hard cheese and I am very careful how much ice cream and soft cheeses he eats.

I HATE the IBS diagnosis. Our old GI liked to blame any unresolved symptoms on IBS. :voodoo::voodoo::voodoo::voodoo::voodoo: Have you tried giving him a probiotic? My son's gut issues seemed to improve a bit when he started taking one daily.

:hang:
 
I have tried probiotics. I discontinued them because they seemed to be another of the things that exacerbated reflux. Lots of things do. Feels like its a huge trade off between weight/nutrition == reflux symptoms.

GI at the moment seems to be going down the path of lets manage the reflux and worry about everything else later.
 
Currently my husband is saying no to the idea of getting an opinion from an Australian specialist. He feels that nothing will be resolved in one appointment, so anywhere we take Liam we are signing up for multiple appointment & probably tests and Australia is simply too far away to be a viable option.

Although he’s not happy with the diet suggestion at all, he’s not yet at a point where he’s willing to give up on medical options here and want to follow up with a range of people when he’s next in country (First GI, Paediatrician, and Paediatric GI) to get a range of views on suggested next steps.
 
I can't imagine 4 days of constipation being normal after scopes. Does he have any appetite?
 
Very limited appetite which isn't surprising, still waiting on BM.

Spoke to school doctor today she said don't fill the prescription GI wrote dosage on the PPI is too high for a child.

And don't even consider putting Liam on that diet, it's totally inappropriate.
She doesn't know any other pediatric GI's but recommended an adult GI who she thinks is good. School doctor says I should insist on a MRI before we even consider diet issues.

Have organised to see Liam's pediatrician later this afternoon to discuss what was recommended with her and get her views.
 
Well done! You are being really proactive. I realise how difficult it is with limited and questionable medical care.
You are doing great, keep going. I hope you get some good help really soon.
 
Pediatric GI prescribed twice the standard adult dosage on the PPI. Which given Liam is 10 and 28 kg (61 pounds) is just ridiculous.
 
Pediatrician was kinder than school doctor.

She changed the meds which she didn't agree with but also suggested that we email the GI to check if he accidentally sent us the wrong diet, as she feels that it must be a mistake.

She said she'd consult with the other pediatricians where she works and see if they can come up with an alternative specialist for us to see for a 2nd opinion. She felt the test that the GI ran and his investigative approach was appropriate but wasn't happy with his suggestions in terms of holding pattern medication or diet.
 
It is typical for kids to be on really high ( higher than over the counter dosages for adults) on ppi.
Not saying his dose wasn't high just that i have seen high doses in infants/ young children.
Glad you are seeing a new doc
Please ask the new Gi
 
We were told to use twice the recommended dose of a PPI if needed to control symptoms when things were really bad. We never did it but it was given as an option. Not saying you should do it just letting you know it is sometimes done.
 
Pediatric GI clearly doesn't like losing customers. His response to my husband emailed concerns, was to say he's happy to finish the testing at this time, rather than in September as he'd originally planned. If that's what we want, suggested nexts steps as:

- ordering a abdominal MRI, prefereably MRI enterography
- white blood cell isotope scan of the abdomen looking for inflamed foci.
- calprotectin test.

He has come up with a revised medication suggestion but still would like to have Liam on the diet he suggested during the testing process as he feels that this will reduce the reflux and constipation and would not result in weight loss if Liam has healthy digestive system (don't think he's taking into consideration the energy output of my child with that one, my impression is he normally treats more sedentry kids).

My husband is going to follow up with the Insurance company to check status of previous claims we've made for procedures done by Pediatric GI, then will probably respond. Currently thinking will probably go with what he's offerring as would be good to get the MRI done.

We've also organised an appointment for next Thursday with first GI to have him look at the snaps of the lump found during the endoscopy as pediatric GI seems very unclear on what sort of lump it is (benign but not what he thought when he looked at it, is all I managed to get out of him) and vague about what should be done about it.
 
Last edited:
Managed to get a copy of the biopsy report today, the GI didn’t prepare a written report for the colonoscopy/endoscopy.

Verbally GI told me it was scopes we're all clear, except for one small lump on side of wall of stomach but it didn't look sinister (would need periodic checking but nothing to worry about at this point) and that the biopsies we're clear.

Thought I'd post here to see if anyone had any thoughts on it, have also added a couple of snaps of the lump.

Esophagus
-Mid Reactive change, possibly early reflux.

-Stomach with Nodule biopsy:
-Focal superficial minimal antral gastritis with nodular fragment showing superficial hyperplasia.
-No definite pancreatic rest
-No H. Pylori seen.
Happy snaps of the unidentified lump: http://www.crohnsforum.com/album.php?albumid=685

3rd part duodenum
-Intestinal mucosa with no significant pathological changes.
-Villa and plasma cells are present.
-There is no evidence of Celiac Sprue or Giardia.

Colon, transverse and descending
-Unremarkable colonic mucosa
-No active inflammation or features of chronicity
-Borderline increase in eosinophils

Rectum:
-Unremarkable rectal mucosa
-No active inflammation or features of chronicity
-Lymphoid aggregates
-Borderline increase in eosinophils
 
A had increased eosinophils as well (though I can't remember what areas). She was not diagnosed with an EGID and the increase was never really mentioned (I read it in the report).

Has your son had any allergy testing? A pill cam? Those would be my next steps to push for.
 
Only celiac's testing to date.
Liam has not had a pill cam or an MRI at this point.

The pediatric GI is stalling on the idea of more test, he's agreed that he thinks it's necessary but it's clear he'd really like to wait and do them in September. I think he's already in holiday mode.
 
Sometimes waiting a bit isn't a terrible idea. If symptoms persist it makes it more likely that something will show up on one of the tests. It took 3 scopes in 3 years to find something for A. Wish it hadn't taken that long but it did. Hope you get answers much sooner than that!
 
Has he had allergy testing Maree? I know they're considered somewhat unreliable for definitively ruling out everything but something might be found.
 
Only for celiac disease. I'm a little cautious about intolerence testing as I've had these done several times myself in the past and always come up allergic to everything I've eaten recently.

Possibly something to consider moving forward.
 
Yeah, they're not great. EJ is highly allergic to shellfish but the contact test showed no allergies to anything! Good luck!
 
Not intolerance but igE testing for immune system reactions
Which is different than igG testing ( not recommended )
 
My girls have had skin testing for igE and my youngest also had a blood test. Very simple tests done by a Pulmonologist, ENT or Allergy Specialist.
 
Somtimes it feels like it's just one thing after another.

Liam got bitten by an ant this afternoon on bottom of the foot, the whole foot swelled including up past the ankle. Rash went all the way up his leg and across his chest.

We've been in to the on call doctor, who gave him a antihistimine injection & intravenous corticosteroid. Other than the swelling and rash he is totally fine, no other symptoms.

He now has another week of oral antibiotics. Different antibiotic to last two courses, really hoping it doesn't knock him around as badly.
 
Johnny was prescribed a PPI from his Pediatrician and once we saw the GI he doubled the dose. I don't know how it compares to the adult dose but it worked much better for him at the higher dose.

Johnny also had increased eosinphils. I asked his new GI about EGID. He said the specialist at Cincinnati who deals specifically with EGID's reviewed Johnny's biopsy and scope report and didn't feel EGID was a concern. I know high eosinphils are a marker but I am not sure what else they look for.
 
Sorry to hear about the new bite. What is the antibiotic for? Are his bowels moving? If he thinks it is a motility disorder, why isn't he doing more testing along those lines? Sometimes these docs make me crazy! I think your peds GI went to school with Niks' Jamie's GIs!!!
 
Please make sure your gp or ped gives you a script for a auto injector
Of epi
Reactions like your sons was systemic allergic reaction and next time it could affect more than the skin.
If you can get to an allergist all the better.
 
When Liam cut his foot it was on the top side of his foot so although he was ok in flip flops and could walk on it.

The bite is under his and it is still too swollen to put a shoe on. He is desperately hoping that the swelling doesn't go down overnight, as I've said if it's still this bad in the morning, I'll take him to get crutches for school tomorrow. He'll really excited about the possibility he might get to have crutches. Would it be wrong to hope the swelling stays up for another day so he can get to have them? Thinking I won't change the bandage in the monring, if he tells me in the morning it's too sore to stand on I'll choose to believe him and let him have his crutches at least for the day.
 
Maree. said:
When Liam cut his foot it was on the top side of his foot so although he was ok in flip flops and could walk on it.

The bite is under his and it is still too swollen to put a shoe on. He is desperately hoping that the swelling doesn't go down overnight, as I've said if it's still this bad in the morning, I'll take him to get crutches for school tomorrow. He'll really excited about the possibility he might get to have crutches. Would it be wrong to hope the swelling stays up for another day so he can get to have them? Thinking I won't change the bandage in the monring, if he tells me in the morning it's too sore to stand on I'll choose to believe him and let him have his crutches at least for the day.
Click to expand...

:lol2: Oh the things we do for our kids' happiness!
 
Kids are so funny. I think he deserves some crutches. :) Although I'll warn you the allure of crutches wears off fast. :ybatty:
 
In the end he decided he wanted to play football more than he wanted crutches. Has gone off to school limpy very badly (it's clearly still incredibly sore) in his astro turf football boots, which we're for some reason the only shoes that we're comfortable enough to wear.:ybatty:
 
The swelling went down further by this afternoon, which mean't he was fine for football at 2pm and fortunately it was a cool day only 36 C / 97 F.

Thankfully this is the last 2 pm game for the year. Only 6pm training sessions from now on.
 
By the time school wraps up our minimum temps will be 30C/86F and it'll be mid 30s by 9 am every morning and not drop below that until the sun sets. In June everyone will be fed up with Dubai in Summer and ticking off the days until school ends and they can leave.

By the end of Summer even the water temp at the beach gets to 36C/97F and its way too hot to even consider going to the beach.
 
Sound heavenly when it is so damned cold over here!!!

Glad he managed his football!! :D xx
 
When I was 10, I bought a pair of crutches at Goodwill and my friends and I had fun with them all summer. :)
 
Glad the swelling has gone down. It's funny the things kids look forward to. When my son thought he might need an operation, he was just happy to go to the hospital because apparently they "have the best fish and chips ever" :yfaint:.
Don't know how you cope in that heat!! We have had one day of sunshine in the last week and a half - pity we can't combine our weather - you could send some sun and we could send some rain and bring the temp down. 20 degrees C is a roasting day for us!
 
Sascot said:
It's funny the things kids look forward to. When my son thought he might need an operation, he was just happy to go to the hospital because apparently they "have the best fish and chips ever" :yfaint:.
Click to expand...

That's so funny! I thought my kids were the odd balls on this one. Every time we head up to Children's Hospital (it is an hour drive there) everyone wants to go - for the food! Yesterday we went to the ER for my youngest (he's the one with the benign mass/lesion in his right humerous) because he fractured the arm again - everyone jumped into the car. When I told them it might be closed by the time we get there - I could see them eye each other as if to say, "hmmm, is it worth the risk?" laughs... Then went. They ate. :ylol:
 
Adding Domperidone to the PPI seems to be helping. We also stopped the Ensure, which the Pediatric GI was strongly opposed to, he claimed it can make reflux & motility issues worse and Liam does seem to be healthier when he isn't having it, so I'm reluctant to try it again.

Liam is feeling better than he has in months. We visited the Adult GI who we like and trust and he advised to use the dosage rates given by Pediatric GI as max levels and to experiment within those to find the minimum dosages that would keep him symptom free.

He also gave us the name of another Pediatric GI to try. Liam strongly dislikes the First Pediatric GI and wants nothing to do with him, and our Insurance company feel the same way (our claims for reimbursement on his bills are either pending or have been rejected, I think because they are too high.).

At the moment as Liam is feeling relatively good, we've not pursued another opinion yet, it feels like he needs a break from doctors. Our main ongoing concern is weight but if he stays feeling reasonable well might pursue why he isn't putting on weight after the holidays.
 
Grace also got worse on Boost (like Ensure). She can only drink a broken down formula.
There's nothing wrong with a brake from docs. I hope to be joining that idea some day.:smile:

HUGS
 
Good news that he's feeling better,! :D

Hopefully Liam (and you) will prefer new GI. While things are good, giving doctors a miss sounds like good plan!! :D xx
 

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