Can you help please 3yr old dietitian thinks crohns...

[mummy2gastricboy]

My little boy is 3 years old. Hes been ill for some time now.
Hes had severe reflux amd failure to thrive and lots of different food aversions.
Hes got a gastrostomy to feed him as he doesnt eat.
Hes had meningitis and blood poisoning in the past.
Now for nearly a year now hes been bleeding on the inside (coffee ground, fresh blood and orangey blood) he also has black hard specs of blood from uper gastri bleeding for a while bow ( on and off) he suffers fromchronicconstipationtoo hes on meds and he goes nearly every 4 days.

This keeps happening. His gastric dr has done a scope but when the bleeding stopped so obviously they couldn't tell where the bleed was. He has had half a colonoscopy (no bowel prep so they couldn't see anything)
hes had the whole fresh blood mixed with mucus in poo too.
He gets ulcers in his mouth and a lot of pain in there too.
He goes through phases where hes really tired and doesnt do much but no temp or anything. He also gets really bad tummy ache. Hes currently on mevberine for it. His gastric dr keeps dismissing all his problems.hes been getting pain in his arms and legs for over 2years now.

Can anyone shed some light please

Ps ive come over from the main board

 

[Jennifer]

I'm sorry to hear about your son and everything he's having to go through. What other tests has he had done to check for any upper GI bleeding (to check the small bowel)? Is it possible to get a second opinion (or third or 4th depending on how many GI docs he's seen)? There has to be a way to see another doctor if his blood loss is being dismissed/ignored. Have any of his doctors checked for any vitamin deficiencies (could explain the arm and leg pain as I dealt with that as a child before my diagnosis yet it could also be related to dehydration and a number of other health problems)? Sorry I haven't read your other posts but after reading this post of yours, a second opinion is the first thing that comes to mind.

 

[DustyKat]

Hi Mum and :welcome:

I am so very sorry to hear about your little lad, how heartbreaking for you. :ghug:

I will apologise in advance for all the questions!:-

When you say he has food aversions what do you mean…allergies and/or dislikes?

The upper GI bleeding, do they think any of this may be caused by the tube irritating the stomach?

Unfortunately a scope without prep isn’t of much use as you have found. Have they any plans to repeat the procedure. This really is the gold standard in obtaining a diagnosis of IBD as biopsies are able to be taken. Bear in mind though this will leave almost all of the small bowel untouched so imaging is needed to give a clue of anything that may be happening there.

What blood tests have been done?
Have they done serum inflammatory markers…CRP and ESR?
Are they monitoring his Vitamin and mineral levels?

Have they done stool tests? Tests for infection and also Faecal Calprotectin (FC), this is a specific marker for inflammation in the bowel. It is highly accurate, not perfect but close, and done now can give an indication as to whether to scope right away.

One of the main things to keep in mind is everyone is different so what one person experiences with symptoms and treatment may not be the same for you so don’t become disheartened if it all “doesn’t fit”. You will also need perseverance and persistence but I imagine you have found that already with all you have been through. :ghug: You will find that if you have had normal blood results this is not unusual, particularly with children. Then to muddy the waters even further the actual clinical intestinal signs of IBD may not appear for months or even years after the extra intestinal (EIM’s) ones do, e.g. joint pains, eye inflammation, rashes, mouth ulcers and so on.

The interesting thing here is, if your son is exclusively tube fed then that is one of the initial treatments to induce remission, bowel rest via Exclusive Enternal Nutrition. In IBD though it is not a long term solution and this treatment alone results in relapse. I am only saying because if he does have IBD then it may well explain why he has persistent symptoms on EEN.

We have a number of parent’s here based in the UK so maybe you give a better idea as to where you located? Even the country if you don’t wish to give too much away, that way they can recommend good paediatric GI’s and hospitals.

We have a Parent’s of Young Ones Support Group:

http://www.crohnsforum.com/showthread.php?t=59511

…Please pop in, have a read through and introduce yourself. Farmwife has a little girl that has a tube and also has other issues over above her Crohn’s. I think you may find some similarities there.

I will also tag my little penguin into your thread.

Good luck and welcome aboard!

:hang:

Dusty. xxx

 

[Catherine]

Welcome to the forum, sorry you had to find us.

Tagging Malgrave due to the mention of low IGA? on the other thread.

 

[mummy2gastricboy]

full resultsFerritin low less than 4B12316 whixh is normal Serumfolate18Hb 11.5White cell 10.5Platelets 379Thyroid normalLfts normal*TTG lesd than 0.1 although IgA is low at 0.6, lgG was less than0.1 . Vitamin D was 68.8 which is normal.

Thank you so much!
Its so heartbreaking to see him when hes in pain.
Hes normally such a happy little boy hes been through a lot and as he has a happy personality the dra arent taking him seriously.
The dr sees me and hes thinks im a young mum, dont know much etc.
He is allowed to eat but most days its very little. We encourage him to eat anything anf everything even if its not the healthiest as we need him to put on weight properly.
They've done scopes in the past and they showed a lot of inflammation so he was started on soya and dairy free food. The last scope showed nothing and thw colonoscopy wasnt really successfulm his dr is adamant its not ibd. Im going to try and get in touch with his 1st gastric (1of the best in Europe dr mike thomson) and see if he can advise anything.

These results are a little old but are the only ones ive had a copy off

 

[mummy2gastricboy]

His meds
omperezole
sodium picosulfate
docusate
mevberine
Reliver and steroid inhaler
Can I ask whats malgrave Catherine?
hes had
sucralfate
ranitidine
erthroymicin to help bowel movement.
Hes not dehydrated atm as he has all fluids through tube and some juice orally.
Hes no longer on dairy free diet as last scope was 'fine'

Hes woke up and asked for pizza so ive had to eat all the cheese of the top of a slice of pizza and leave him with just base. Hes had around 5bites

 

[Malgrave]

Malgrave presents herself :ysmile:
I guess Catherine tagged me because of our experience with immunological tests. My son's doctors think that if a very young child gets an IBD, there is often some sort of primary immune deficiency behind. Have they done any immunologial tests for your son? At the moment the immunologist thinks that my son might have some sort of common varied immunedeficiency (CVID) causing his crohn's like disease. Normally the IGG and IGA are low in this deficiency, but my son's immunoglobulines are high, still they think that he has some sort of problem in his antibodies production.

 

[mummy2gastricboy]

They've checked to see of its the tube and its not. Hes had a mickey button in but it kept leaking despite trying different sizes so back to peg

 

[mummy2gastricboy]

Woops
I thought malgrave was some sort of med or something lol sorry
thats why google didnt work

Nope they've done no other tests apart from the standard full blood count aand inflammatory markers.
His constipation can go on for weeks! The longest hes been constipated is 12weeks and he had 2 lots of bowel prep and still nothing came out. He was ok as he still had overflow new stool coming out but old was still there.

Right so 2nd opinion plus immunology?
Thanks

 

[Sascot]

Hi and welcome. Sorry to hear about your little one. Definitely worth getting a second opinion! I know that is quite hard to do in UK - I'm not quite sure what I would have done if I didn't like our GI.
I know it's hard, but keep fighting for a diagnosis. I took a year and a half for my son to be diagnosed (he used to get really bad tummy pain) - I had it all - "is your son happy at school" , " is he being bullied", "sometimes we just have to live with a sore stomach", etc.
Has your son had a faecal calprotectin test done? They test a sample of poo for levels of inflammation. It was the only test that ever showed anything for my son - his bloods were always normal. Your GP can now order the test to be done (used to be only the hospital consultants) and it takes about 4-5 weeks to come back. Might be worth asking about.
Good luck

 

[mummy2gastricboy]

When he had his last scope done I had to argue with the consultant.
He said a scope wont change anything and I replied but if shows something it will change his treatment plan.
the consultant is on annual leave atm.
It took me 18months to fight for something to be done about his reflux. His food aversions are cold sticky runny foods like ice cream and yoghurt etc. He will eat hard bland food.

 

[CrohnsKidMom]

Welcome to the forum, but so sorry to hear of your little guy's trouble. Whether you're a young mom, as you say, or a not-so-young (sigh!) mom, you know when your child is not well. Keep on your fight for tests and a diagnosis, so you can get your son the help he needs to feel better. I know there are lots of parents on this forum who have had to fight like you. My son shared a lot of the same symptoms as yours, but I know this disease can present differently in each child. Hang in there! I hope you get some answers soon.

 

[my little penguin]

Couple of things- if he is soy and milk free then you removing the cheese ( aka eating it for him) does not remove all of the milk protein and the gut can still react.
Has he every been on formula only and no food for about 6-8 weeks?
Have they look for EGIDs?


http://apfed.org/drupal/drupal/what_are_egids

Food allergies


http://community.kidswithfoodallergies.org/forum/eosinophilic_disorders


I am not from the UK but from what I understand it is really hard to get any scope done on a child -not sure why.
just keep pushing.


If there are no other absorption issues then he should not have any trouble maintaining a healthy weight if he is tube fed period.
kids much older than him who are no foods 9 formula only ) due to EGIDS grown thrive and gain weight .

Ormond street hospital in London ( Ithink ) is suppose to be really good with EGID/IBD disorders.

good luck

 

[mummy2gastricboy]

According to last scope hes ok to eat dairy now.
He does have issues absorbing as he has been anemic in the past despite being on This feed.
They won't refer him to a hosp where he had peg put in never mind great ormond street
His gastro is in next week will see what they say