Teary mama, sleepy boy

[GemzC]

Hi,

This is my first post, I'm at the desperate/frustrated stage with a poorly 12 year old. He's off school yet again and we are getting no where fast.

Kaidens always had 'something' . Diagnosed with a lactose intolerance at 13 months he battled through that before reintroducing milk age 5. When he was 8 I took him to the GP for stomach ache. They told me he had school stress.
When he was 9 we went back because he was having intermittent bouts of diarrhoea, we were referred to Gastro. The doctor took one look at him, read his weight/height and told me there's nothing wrong with your child he's growing normally. We were dismissed by Gastro.

Last January I went back to the GP, by then he was missing chunks of school with exhaustion, stomach cramps, mucous stools, watery stools and joint pain. We were re referred to Gastro, this is when I started to put my foot down a little. We were advised to try elimination diets so we did gluten and diary for a month each and there was no difference. I pushed for Calprotectin, 175, this is considered normal in NHS Scotland, only over 200 is abnormal. Fast forward to December, Kaiden had an emergency admission to A&E, passing a large volume of blood. His stats were good, stomach soft etc. Dr. Put in urgent referral back to Gastro, at this point they agreed to investigate.

Since December he's had an endoscopy - clear
Calprotectin - 250 (still not deemed significant)
Colonoscopy - colon is clear but a fresh bleed traced all the way to the small bowel which couldn't be seen further.
Bloods - clear, he isn't anaemic even though the doctor thinks he should be because he's still passing blood.
3 emergency admissions for bleeding - I've now been told not to take him back, they can't treat him until they know what's wrong so to medicate with paracetamol at home.
MRI on Tuesday, the 1litre prep went through him instantly, horrific diarrhoea within 30 mins of drinking. Results due next week.

Does this sound familiar to anyone? I'm totally exhausted, he's exhausted, he never complains, he even got dressed for school today before heading back to bed with stomach cramps. I'm just so fed up of having no support and no treatment plan while we wait for results.

Sorry for the long post xx

 

[crohnsinct]

Oh man! I am so sorry you are both going through this. My younger crohnie grew fine and was a fine weight and at 10/11 just stopped growing. Growth and weight are just I e symptom of many.

I am glad they did the mri. The scopes can only go so far and there is a lot of small bowel left not visualized. Hopefully the mri got a good view of what is going on there.

Unfortunately the road to a gastro dx is long and filled with a lot of hurry up and wait. Stinks!

Hang in there mama. You are doing a great job!

 

[Sascot]

Yes, just what we have been going through. My daughter isn't as bad with toilet issues, but lives every day with varying degrees of tummy pain, headaches, fatigue and joint pain on and off. Some inflammation found in the colonoscopy but 'not the reason for any pain'. Our paediatrician and GI have officially given up and we had a referral to psychology to help her 'deal with the pain'. That is the only thing they offered as pain tablets do nothing. Appointment again in a year!! I feel for you both

 

[Maya142]

Sending hugs - that sounds awful! I hope the MRI gives you some answers. There are definitely people who have Crohn's in the small bowel - past where scopes can see.

Really hope the MRI has some useful info for you. There is also a pillcam - capsule endoscopy - that would show the small bowel. It's a small pill shaped camera that you swallow that takes pictures so they can "see" into the small bowel.

Hang in there!

 

[lenny]

Do your own research of course, but my husband was reading about the pillcams and came to the conclusion that they get stuck a lot.

 

[my little penguin]

Ds has had multiple pill cans without any issues at all
The key is to have an MRI first

 

[Maya142]

M has also had a pillcam without issues. They often do a dummy pill first - one that will dissolve if it gets stuck. If that goes through without any problems, then the pillcam should be fine.

Also, if the MRI shows no strictures or narrowing, that's also a sign that the pillcam won't get stuck.

 

[Leed2713]

It is so frustrating my son was 12 when disgnosed. He was so sick and even with a family history of crohns it still took almost two months for diagnosis. His crp and esr where increasing steadily while in hospital. The ultrasound showed something all signs were there. The scope couldn't get far enough to see the terminal ileum and the surgeon didn't want to risk going further. He was keeping nothing down and anything he tried was going straight through him. The prep for the scopes was an absolutely horrific ordeal fur him as he was already so sick. We were told that they were more or less sure it was crohns but wouldn't be able to diagnose or have any treatment without an MRI. This was scheduled for a week later at a children's hospital which had a specialist in this field. I completely lost it with the surgeon when he came around as I told him that the child was not fit to be sent home he needed an MRI sooner than another week away. I was a complete nervous wreck taking my son home. He practically passed out on the walk to the car and was helped by two ambulance men who happened to be outside the hospital. They could not believe he was being sent home. This was on a Thursday and MRI and repeat scopes booked for the following week. On the Sunday I took him back to A&E I was told his electrolyte levels had dropped to an extremely dangerous level and he was immediately put on a drip. The surgical team for some reason refused to treat him and it was the paediatric doctor who looked after him until he was transferred to the children's hospital on the Tuesday. He was given a small amount of something called sodium picosulphate to prepare him for the scopes so no nasty huge amount of prep as he was keeping nothing down and would have had nothing in his system anyway. He was diagnosed then after the scopes and MRI. He woke up from scopes with ng tube and was on enn called modulen fed through the tube for 10 weeks. He was so much better with this and even managed a family holiday to Florida with tube and all in place. Always trust a mothers instinct and don't be afraid to question the doctors or take him back to A&E even request his electrolyte levels be checked. I am so sorry you are going through this. It's so hard as a parent seeing them suffer when all you want to do is take all the pain for them. Stay strong he will get help and you came to the right plans here coz it was a complete god send for me. The information and advice I have gotten from this forum really is something else xo

 

[Mehita]

What happens is you flat out ask, "Is this Crohn's disease"? Does it even come up in discussions? So sorry you and your son have to go through all this.

 

[Catherine]

My daughter has small bowel Crohn's which is 20cm higher that colonscopy can reach.

Hopefully the MRI will give you answers.

If you believe he is bad enough to go to the ER or GP take him in but don't expect to get treatment as you have no dx. If don't you may the respond that the pain couldn't have been that severe as you didn't take them to the doctor.

Calprotectin seem to be a lot lower when the inflammation is only in the small bowel.

If you are asking whether severe pain as the only physical symptom sound familiar, yes it does. My daughter has never had any bowel symptoms.

I would also watching weight.

 

[CarolinAlaska]

So sorry your wee one is suffering so. I hope he gets an MRE, a diagnosis, and effective treatment soon!