aibu to tell everyone I meet....

[LostMyBaubles]

Or see about my dc? Esp the eldest?

With hope that they might know/ have experience of what im dealing with?

Do you?

Ds1 has been poorly since he was born.
Reflux, constipation, hes had ulcers in his mouth, blood in his poo, fed via feeding tune gastrostomy, autistic, asthma, Dairy allergy, lots of pain in tummy, blood in his aspirates (stomach fluids)

His main problem is the pain atm. Paracetamol doesnt do much.

hes under gastros. Hes seen every 3weeks.
Hes only4 :(
I just cant see him in so much pain.
Aibu?

Well.
Sounds like a plan - a good one by the sounds of it.
Do you have faith in her? She sounds like a determined lady.

Yep. She was really intrigued with what was goimg on and rather than saying the last scope was more or less ok she explained why it wasnt and what that meant.
She also said the black specs is some sort of bleed or granulatiom tissue then she looked at his site and got confused.

I think she connected with ds on an emotional level too as she was a lil teary watching his videos etc.

Ds was sat lining up colours but he did say where it hurt. She was prodding and he did say ow a few times.

Oh, good.
You need somebody who will get their teeth in to your DS's problems and try and tease out what's going on. Clearly whatever IS going on, is not straightforward straight out of a text good - medicine is easy when everything is the way is 'should' be.
Hope you get some answers and hopefully some solutions for him very soon

She sounds helpful and it all sounds like a good plan. I know you have a long road ahead of you but I hope you feel a little bit better now there is a plan to eliminate possibilities and now this doctor is being more proactive about figuring what is going on.

Just had a quick Google about ast levels and apparently normal range is 5-40. His were 107 my grandma passed away due to hepatitis c.
Very much even more confused.

AST and ALT are the liver's main enzymes (help with digestions/metabolism). They can rise and fall and an isolated number like that means v little on its own tbh.

Step away from Dr Google!

Did you look up paediatric values?

I found up to 60 as a normal value up to the age of 13 years.
Some of these things also depend on individual labs AFAIK.

Thank you for looking too
to me if they were normal he would have mentioned it after the hb level which was normal?

slightly raised esr at 14, neutrophil count 8.3 and ast at 107. Hb normal 119
?
Argghhhh.
Hes very happy atm as he did a piece of art which school framed (all kids took part in art exhibition) and we were able to buy the pics too.

You would think that upto 20mls of liquid paraffin and docusate he shouldnt be constipated all of a sudden? This seema to happen a lot. Once it settles all of a sudden hes constipates again. No diet change at all.

That picture is lovely - glad you could buy it

Slow transit constipation?
Other motility problems??

You are a strong person to just be keeping on keeping on.

Has Gastroparesis been considered?

YANBU! I really feel for you and your DS, this sounds absolutely awful.

I've just read through the thread and seen that EGID/Eosinophilic Colitis is being considered. My DH and my DC1 have Eosinophilic oesphagitis/ Eosinophilic Colitis, and whilst they haven't suffered to the extent of your DS, a lot of the symptoms you describe sound like the condition. In the case of my DC1, our consultant believes that antibiotics given when she was a baby may have contributed to her condition. Her neutrophil level tends to 'sit slightly low,' and this is apparently also often found with EGID.

Anyway, my real reason for posting; I've just seen you are now eliminating additional foods from your DS's diet. I just thought I would mention that as well as the usual common allergens, chicken, corn and citrus are particularly linked with EGID. I noticed that you said your DS eats a lot of chicken and I wondered if it might be worth trying to decrease that to see if it helps?

you must be exhausted by it all xx

Pacific they've never said anything about slow transit constipation just that he has 'gut motility'
Wayfaring he does have gut motility and im not sure what the difference is? I did have a look om the nhs website and one ofthe lines of ttreatment was a gastrostomy a feeding tube in the stomach wall which he already has

Missing (love your name im in the same boat!)
Thank you for sharing your story. He used to eat a lot of fish (just salmon) and I did see it caused him to get pain. Chicken hasn't been as bad as the fish but last night he ate 3 chicken wings (small not full) that had a breadcrumb coating on andhe was in pain after.
We will be doing elimination diet after scopes.
Is your dh and dc1 on any treatment?

Thank you for sharing your story with me.

[typing with a splint on so forgive the typos]

Have you looked in to MTHFR gene variences. That's a lot of flags suggesting something up on a genetic and epigenetic level. It's a complicated minefield and not one that seems to be undestood by a lot of healthcare practitioners. But essentially, you find your particular SNPs (expressions of the genes), and work with the body accordingly. I don't knowmine yet, but simple things like cutting out synthetic vitamins and minerals (folic acid being a biggy for MTHFR, you need FOLATES not folic acid), and suppliment naturally, or by non-synthetic pills/sprays etc.

Have a look at these and an ask about. See if it starts to make sense for you:
MTHFR.net - Dr Lynch is selling products yes, but it's a brilliant overview and resource for problem solving.

MTHFR gene mutation FB group- Carol Savage is a personal hero. Loads ofsupport and information. The communitywill hand-holdyou through and signpostyou to other resources.

Hi Lost,

DH was only diagnosed a few years ago despite having problems since childhood. His main issues are with his oesphagus, and he has antacids and occasional courses of steroids. He has some damage to his oesphagus and may need surgery at some point in the future. Food texture and having plenty of time to eat are important, but he is generally well.

DC1 had colitis as a baby, diarrhoea, mucous and lots of blood. Also reflux and general pain/unsettledness. It took ages to get a diagnosis. She is now on a very strict elimination diet and she has neocate active to top up with. I also give her probiotics. She's pretty much fine as long as we make sure she doesn't have anything she reacts to. We've attempted to reintroduce foods that have caused problems and been successful with some but with others her symptoms return within a few days. She seems to get a lot of general bugs and illnesses and it can take her a while to shake them off, and she seems to function best with lots of wholesome food - she seems to get run down very easily.

i also have another DC who has very similar symptoms to DC1, and we're waiting for a gastro referral...

Layana will definitely check your link. Thank you.

Sleepy I have read something about this before on here a while ago? Sounds very interesting but my 2 main concerns on that diet would be meeting his daily requirements for vitamins and calories etc and if hea reacting to chicken then this would be a problem?

Will have a good look at ir though as it does sounds very interesting

missing thank you for sharing.

I cant directly say hes getting pain from one thing as hes in pain a lot. Past few dayshes been saying it less but hea has sore bits (and now very itchy bits so think thats taking over iyswin)

He did however say he was in a lot of pain yesterday and night before yesterday.

He ate chicken in breadcrumbs coating.

Another thing to chuck into this is the very possibility of it being apart of something bigger possibly inherited but we are ok?

My youngest brother has bad health but not to the extent of ds. Hes 2 and suffers a lot from chest infections and they ? Cystic fibrosis and did sweat test which ds haa never had.
His iga levels were borderline low so not as low as ds but borderline low.

Have no idea if this would help but what if a friend pumped breastmilk for him to have?

My dc3 is 7months and when I was pumping for him I would give ds1 some too down his tube. Which would just make him come out in a rash pretty quick.

But thank you for the idea.

Every little helps

Oh that's too bad... Really hope something will work out for him.

Thank you noodle

hes woke with pain this morning.

His aspirates were very yellow which hasn't happened before

That looks like bile to me - ?biliary reflux

I'd discuss any major dietary changes with his consultant/qualified dietician tbh - GAPS diet has not much evidence behind it and quite a few 'red flags' of bogus science. It's so hard to know with these untested therapies whether they a. may help, b. may harm, or (most confusingly) c. help some people and harm some others.
I think you're right to consider his nutritional and calorific needs.