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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

aibu to tell everyone I meet....

236 replies

LostMyBaubles · 02/03/2015 22:10

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?

OP posts:
Original poster
LostMyBaubles · 08/03/2015 20:55

I was 17/18 when I had him. All planned too. And he was only 8weeks when he had meningitis.

Im very mature for my age and loved the idea of growing up with my kids.

It was such a shock when he was sooo sick.

OP posts:
PacificDogwood · 08/03/2015 21:00

Oh Christ, I could be his gran ShockGrin
I think that age has nothing to do with whether somebody is a good or bad parent btw.

Nothing prepares you for a poorly baby - I was 38 when I had DS2 who was born at 31 weeks after I had been in hospital with placenta praevia for 5 weeks.
Neither the letters after my name, nor my fabulous life experience had prepared me for having a baby on NICU. And a 1-year-old at home. I still shudder at the memory and they are 12 and 11 yo now.

I really hope they find a way to help your LO or that he gets stronger just from getting older - lots of bodily systems improve with maturity.

You do sound like you have your head screwed on Thanks

Original poster
LostMyBaubles · 09/03/2015 09:46

Thank you.

His aspirates had small pink blobs in them? Best way to describe it.

hes in pain and irritable again

I did think dietitian was coming over but doubt it as we've both got confused over timing

OP posts:
Battleshiphips · 09/03/2015 10:11

I don't really have anything helpful to add but just wanted to say I hope you managed to get some answers soon. My 7 yr old ds suffers from reflux and that's bad enough. Your poor little one sounds like a brave little chap. Has he ever been tested for helicobacter pylori infection. Some of the symptoms are the same but I'm not sure if they would be as severe as your ds.

Original poster
LostMyBaubles · 09/03/2015 21:10

Will try again! Been trying to post all day!

Hes been ill again today. Hes been rolling around with pain. Then was sick. Paracetamol did help enough to bring hom off the floor and on to the sofa.

He did perk up.
Now he has a temp 38.3 so more paracetamol given. Will take him a+e if he doesnt settle.
What dk you think
he has been tested for h.p thank you for the suggestion though

does your ds still suffer at 7?

OP posts:
Original poster
LostMyBaubles · 11/03/2015 06:11

Bump

he was bad again yesterday but not as nad as the dsy before

it just seems like his gut uas shutdown and everything is coming out unless given very slowly over pump.

hes not going for scopes this week. Probably next :(

OP posts:
clairecasta · 11/03/2015 06:29

My son has a completely different type of illness, but he was given a really good painkiller at age 18 months called oramorph. Its basically morphine. Some of his drugs cause him a LOT of pain & this is the only drug that does anything about it. I recommend asking your doctor for it, my regional childrens hospital gives it out like candy to patients in pain. If managing his pain is the only thing you can do for him right now, then that will be one battle fought.

PS: I have no idea if it will irritate his stomach or not, but they gave it to my son when his drugs scoured the lining of his stomach and bowels and he pooped blood and mucus for days. It still worked.

PPS: You are doing a really good job. It is bloody hard to be a parent to a seriously ill child. You are keeping on top of everything, making sure the doctors and specialists are informed and pushing for a full diagnosis for him. Have you got support for when it all becomes too much?

Original poster
LostMyBaubles · 11/03/2015 19:16

In terms of support for me I have dh but heddoesn't really understand either as hes not from the uk and they dont have any of this where hes from they would just have to suffer.
When it gets too much I have a good cry and then start again

Pacific I found this

OP posts:
Original poster
LostMyBaubles · 11/03/2015 19:18

Gastric folds can be enlarged, with or without nodular filling defects.

His scopes showed nodular/nodules whenthey did scopes.
This refers to egid which the dietitian recommended we mentioned to dr.
She also ? Colitis

OP posts:
Original poster
LostMyBaubles · 12/03/2015 08:17

I did a massive post Hmm

I have emailed gastros again. Requesting a colonoscopy and have emailed the pics of the stool and of his peg site.

OP posts:
PacificDogwood · 13/03/2015 09:33

I am sorry, I have no idea what the histological report means.

I hope you hear back from gastro v soon.

Original poster
LostMyBaubles · 13/03/2015 10:45

Hes currently in hospital as he was passing bloody diarrhoea.

Hes a little dehydrated too so hes been on 400mla of diarolyte.
hes had some paracetamol vut still in pain

feeds have started again. Plan is send stool of to the labs, watch pain levels and bleed.
If hes ok later on he csn go home if not he will be in

hes seeing his own gastro on Thurs at the emergency clinic and we are currently at Manchester childrens so they might want him to be seen by his own gastro if hes stable

OP posts:
GayByrne · 13/03/2015 11:12

Christ, my heart is breaking for you OP.

What I was thinking you could do, along with continuing your current course of treatment with your current docs, is to try and get the names of the best aped gastro consultants in the country and send them a letter outlining what's been happening, where you are now, how desperate you are etc, basically what you've written here and you write it so heart achingly well.

I have asked my medic friends to give me some names but here are a couple I've seen mentioned in various places:

Dr Rob Heuschkel (addenbrookes?)
Dr Muftah Eltumi (The Portland)

If you get, say 5/6 guys to write to, the chances are one of them is going to be touched by your plight and I know that guys like these who get to the top of their professions are always keen to take on a challenge (and therefore publish a paper about it...).

I'll get back to you with some more names but you'll easily be able to google the above for their postal addresses. I would post this to them, recorded, then follow up.

I'm sure we could help you with the wording of your letter, though you are obviously the expert in your son and the medical terminology.

Anyway, have a think about it. I'm so sorry for you and your boy.

GayByrne · 13/03/2015 11:13

Forgive typos, on ipad.

Aped = paed

Original poster
LostMyBaubles · 13/03/2015 15:27

Thank you. Will mention it to dh

well we were discharged. Hmm
It was the old gastro who did f.a for ds infact he saw him and smirked. Arsehole.

Ds sat and smacked his stomach. Imo he isnt expressing the pain verbally which could be due to thr autism. He was then quite for a while and was rolling trying to get comfy. He had paracetamol around 1and half before this. I asked nurse to come and watch she only saw him trying to get comfy and being off.
We came to the conclusion that asd was making it difficult to express how much pain he was in etx as he wont say unless asked and if he isnt in pain hr will say no.

I asked the gastro for more pain relief he said no paracetamol is sufficient. I said if it was he wouldn't be smacking his tummy because of pain and explained asd side.
He looked at him felt his stomach and saidits not tender and what else do you want me to give (being sarcastic)
I said im not thr dr you are. You need to tell me.

The other2 drs stood and watched me argue but they were 'under' him he was regon call all wweekend

the dr who saw him before that said she would try and give him something else but reg wont agree.
Even she knew dr was being difficult
His nurse said pals need to be informed asit was horribe how ds is suffering and has suffered at his hands

OP posts:
PacificDogwood · 13/03/2015 17:15

Good heavens, how horrible!

Has your DS ever been tried with one of those visual pain scales?
Like this one?
It works well for adults who for whatever reason cannot express themselves verbally - I don't know whether they are used for children too.

The problem with virtually all pain relief beyond Paracetamol is that it's either actively irritating to the gastrointestinal tract (anti-inflammatories) or slows it down (anything opiate-like, from codeine via morphine) to the point of horribly painful constipation and faecal impaction. I don't know whether they might be reluctant to use anything like that because of those side-effects??

Either way, you should be able to expect to have your concerns taken seriously and to have reasons for whatever decision explained to you. Also discharge should be a mutually agreed decision - have you ever refused point-blank to take DS home? Sometimes that gets action…

Yes, speak to PALS.
Thanks to you.

Original poster
LostMyBaubles · 13/03/2015 18:43

Yep I did refuse once. The dr started crying and stormed out the room Hmm
and she got another dr to come and try talk me round. It was when he was constipatedand had been for several weeks at that time and she said go home increase fluids and if hes no better come back Hmm I was 6months pregnant didnt drive either so wasnt an option.

If he didnt have the appt on thurs I would have put my foot down and said I want to speak to someone senior regarding emergency scopes etc

what will/can pals do exactly?
Ive never tried them visual pain thingys but will give it a shot

OP posts:
Original poster
LostMyBaubles · 13/03/2015 18:44

We got to a+e 8pm, was seen at10 and got a bed a 2.30am

OP posts:
Original poster
LostMyBaubles · 13/03/2015 18:45

Just seen all the typos! Please excuse them, on my phone....

OP posts:
PacificDogwood · 13/03/2015 19:37

PALS should be able to make sure that you are heard and that any grievances you have are being aired with the appropriate senior staff.
It may well be worthwhile to get them on side to support you.

JsOtherHalf · 13/03/2015 20:36

Pain scale for non verbal children:

www.cerebra.org.uk/English/getinformation/researchpapers/Documents/FLACC%20Infographic_V5.pdf

Nevercallmehun · 13/03/2015 21:23

I can't really add much as you've had lots of advice and info. Ds was diagnosed with ulcerative colitis nearly a year ago so I have an inkling of what a hideous time you're going through.

Crohns and Colitis UK are a fantastic charity and offer lots of support including phone lines and parent to parent lines if you need to talk

Original poster
LostMyBaubles · 14/03/2015 08:19

When your lo had scopes done was it diagnosed then?

The most im being told is theres inflammation? (For both endoscopy and colonoscopy)
The drs who did the colonoscopy came back and said the colon was red and inflammed and will wait for biopsies to come back. Then his gastro dr said its nothing too much to worry about?

Very confused
this morning his aspirates were dark (the fluid is normally clear with streaks in when bleeding) and it had a streak of blood in and a black spec?

OP posts:
lorrylarouge · 14/03/2015 08:32

I agree with trying to get him to Great Ormond St. Get MP involved if necessary.

Booboostoo · 14/03/2015 09:12

I feel for you and your little boy.

Just two small points to add to the general discussion on possibilities:

I had a thalassemia scare with my DD. One easy way of excluding the condition is to get both biological parents tested for it. It's just a blood test but it needs to be analysed by a laboratory that knows what it is doing.

Do you have a pain management clinic near you? These are clinics where doctors with pain management skills from areas where these are crucial, like palliative care, see general pains with long term or unmanageable pain. They tend to be much better than other specialists at juggling different medical requirements to effectively reduce pain.