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?

Does warmth help? Heating pads, heat lamps, hot water bottle.

Spot heating makes me feel better, whereas an electric blanket is absolutely awful -even if off - they hold heat and cause me to overheat.

Hes scared and won't let me even try it on him. He thinks it will make it hurt more

Your poor darling boy. What a little trouper and so brave going through all that. Just wanted to handhold really- sorry can't offer any other advice.

Big virtual hugs.

Does he like cuddly toys? You try something like this. You could barely warm it up at first, and very gradually make it warmer to get him used to it.

can you try giving him soups for a while - dairy free and wheat free - just to give his gut a chance to heal ?

I can't imagine how hard it is. Thinking of you.

Because of his food aversion he wont eat nothing wet and will not eat anything of a spoon so he wont eat soup.

Hes on neocate advance which is the only thing he really tolerates.

Will look at that link pint thanks

If oral ulcers reoccur we find l-lysine miraculous. We crush and add to whatever is going down ok, worth seeing if your specialists think it is ok to take. We have gone from weekly ulcers to non.
Your little boy sounds so lovely - wishing you both some comfort

I was diagnosed with crohns aged 13 (21 now). The symptoms (especially mouth ulcers as crohns can cause ulcers, bleeding and inflammation ANYWHERE in the digestive system from mouth right down to the anus) combined with bowel symptoms (blood in poo, constipation) makes me think crohns. Has he been tested? Diagnosis is usually through a colonoscopy (which is usually done under general anesthetic in pediatrics) they will probably visually be able to see ulcers/inflammation/scar tissue in the bowel that would indicate crohns but can also take a little biopsy of tissue while they are there which can be analysed for a definate diagnosis.

Different diets can help with crohns, and often children with crohns are put on an 'elemental diet' which essentially is specially formulated nutritionally complete milkshake style drinks which you have replacing all solid food and drinks except water (so you literally just have special drinks and water no other food or liquid) for 6-8 weeks which in theory will give the digestive system a break and allow it to hopefully heal itself and then you can re-introduce solid foods really slowly, making a note of which foods seem to make symptoms worse so you can avoid them. Other treatments include steriods, anti-inflammatory drugs, immuno suppressant drugs and biological therapies. Not a nice illness by any means but with the correct treatment it is possible to have a good quality of life. I am on a biologic therapy and have been for the past 5 or so years (after steriods, different diets and anti-inflammatories failing to work) and this has allowed me to finish my GCSE's, do my A levels, go to Uni, be in a long term relationship and now I'm 31 weeks pregnant as well.

I would definately push for a colonoscopy and biopsies from the gastro, and in the meantime he may find warm baths provide temporary relief from the pain (when I flare I have been known to spend up to 6 hours a day in the bath (!!)) also Spatone is a great iron supplement which may help boost iron levels after blood loss, and is available from boots, tesco etc. Also when I flare chicken and rice are my go-to foods as well as bannana and eggs. And dairylea. And mashed potato. Although different foods affect everyone differently with crohns there is no foods to definately avoid.

Just re-read through your replies - if scopes showed inflammation then that would indicate crohns, they need to do a biopsy to be sure but inflammed colon would indicate crohns.

I was also coming to suggest Crohn's disease. I'm surprised they didn't take biopsies when they saw the inflammation in his colon! Like lucy says, the milk shakes are a really good treatment for little ones, with a success rate just as good as steroids and without any side effects.

lucy congratulations on your pregnancy, I was really well while pregnant (I have Crohn's too) and for the first year or so after, I hope you are too.

My DS has complex needs and has intermittent pain spasms which are hard for him to bear.He is non verbal so cannot explain where the pain is .When the GP visits my DS is so happy to interact and of course there has not been a pain spasm during his clinical examination. I resorted to videoing my DS and showing it to the health professionals. It does mean they can immediately discount the "overprotective mother" angle and see exactly the severity of the pain. I have also kept a diary record of when the pain happens , what my DS was doing before the pain hit, whether his bowels were open and any other symptoms . have you been asked to do this?
OP, I hope you can get some answers.

Has you DS ever been tried with Omeprazole for his reflux?
That might help the upper gastrointestinal symptoms (but not the bloody diarrhoea).
There is also a blood test to help assess whether a form of inflammatory bowel disease is likely or not (Calprotectin) - he may have had that?

Wishing you a good day

They did do biopsies but they showed nothing significant as of yet.

I cant see lucys post can someone repost it please.

Hes on omperezole and has been since around 6months old iirc. Hes on adult dose of 40mg a day.

He doesnt suffer from diarrhoea its the opposite he suffers from chronic constipation.

Hes on
omperezole
docusate
cefixime

movicol and lactulose dont work.
Picosulphate made him scream
rantidine did too.

Hes been on docusate and liquid paraffin (only thing that helps make him go) and the pharmacist told me the 2 together could result in toxins entering the blood stream as they both interact with each other. Hes been having them together for over a year and no one say anything!

Hes in pain again. Some red stuff in his aspirates.

I do keep a diary and I have started to video him too.
Its just awful that hes been like this for over 6 weeks now.

Hes passed some good normal stool, slightly runny but that's what the gastro wants hence the laxatives.

There was some black hard specs
1 big one which almost crumbled to dark blood? And hard small ones.
I have taken pics.

Take the samples to the dr for analysis.

Hi! Right this is what I think. I think you need a referral to a GOSH and a multi disciplinary team which includes a IMMUNOLOGIST/ GENETICIST I think your son is displaying a "syndrome" the allergies, the ulcers the reoccurring infections, the digestive symptoms are all highly indicative and Autism can be a feature of genetic syndromes too although could be separate. Has he been tested for a form of primary immune deficiency?

Found this info: The Clinical Immunology Laboratory at Great Ormond Street Hospital (GOSH) provides a dedicated paediatric immunology service, supported by an expert scientific and clinical team.
We offer a comprehensive range of investigations to assist clinicians caring for those with autoimmune, rheumatological, renal, allergic and gastrointestinal disorders. The laboratory also leads on the manipulation of blood and marrow for transplantation as well as providing specialised testing for primary immune deficiency (PID).

There is information on the referral process and a referral form.

I agree that he would benefit from an assessment in a tertiary referral centre.
I am no expert, but it would seem he does not have 'normal' reflux or 'normal' constipation or even 'normal' Crohn's (if there is such a thing).
Those are heavy duty meds for a little guy like him and you don't feel that he is getting anywhere with them.

Thank you for all the info and do keep it coming.

Just been able to see lucys post as for some reason it wasnt showing last night

Will bear all this in mind at his next appointment.

I was thinking of taking my mum with me too for support. I am known to stick my ground anf the only reason we are here (fed via tube, on antibiotics etc) is becauseI put my foot down its just I do think hes in a flare up which has halted things a bit.

Before this flare up he was fine. Fed via tube, ate close to 2meals and drank lots of coke and juice (not ideal I know but its calories and the dietitian said if hes drinking it let him be)
Hes come home from school and hes got no pain atm which is good but hes got an empty stomach.

He has asked for food but ive put his feed on and is ok.
If he asks again will give him something to eat but I know how that will end - him in tears again.

Ever since we started the cefixime (long term antibiotics) hes not been ill otherwise he was getting a lot of infections and bloods showed low iga (they did in 2012 too but old gastro did f.a)

Pain relief wise what else could they give him?

Wrt to referral to gosh would they do it if this dr was his 2nd opinion?
Also the scopes at time showed inflammed colon and the dr who did the scopes said he could be suffering from allergic colitis but never heard anything else about it as the biopsies showed nothing too significant. Which imo means could be colitis but maybe the start so not enough to pick up yet?

Its definitely not just normal reflux or constipation
poor lil man.

I assume you've tried cutting out gluten?

Bless your hearts. There is a hippy clinic near me that has come up trumps for me and so many of my friends. You hold a metal stick and it tells you about food intolerances/ bacteria etc. Our paediatrician completely laughed in our faces but the clinic detected helicobacter and wheat intolerance which paed hadn't and gave us hippy drops. We've never looked back! It was the celestine clinic in Kent and cost £80.

Ps daughter had mega reflux, which stopped after hippy drops ;-) x

OP where do you live? What hospital is he under?

Have you heard of dr Shah at St Thomas hospital? If there is any way possible, this is a guy you need to see.

I know someone in the exact same position as you, her son is 2 years older though and is allergic to more than just dairy. Took them a long time to be heard.

Dr Shah is your man, if you aren't already with him. Presumably he has had RAST tests for various foods?

Oh also DR Shah is at GOSH.