Active discussions

Meet the Other Phone. Only the apps you allow.

Meet the Other Phone.
Only the apps you allow.

Buy now

Please or to access all these features

Talk
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 · 15/03/2015 14:29

Dont have a clue about pain clinic. Wikl he have to be referred? ?

Something new....

his testicles are very swollen.
Taken him to gp anf they gave antibiotics but she wasnt sure what kt was

OP posts:
Booboostoo · 15/03/2015 18:37

Yes he would have to be referred to the pain clinic. They usually run every so often in large hospitals.

Goodness, that sounds incredibly painful. Hope there is improvement with the antibiotics.

PacificDogwood · 15/03/2015 21:00

Pain clinics tend to look after people with chronic pain - I am not sure what they could offer a little boy with an as yet undiagnosed condition, bus asking about what's on offer won't hurt.

Swollen testicles?? What on earth? Is he in pain from that?

Original poster
LostMyBaubles · 15/03/2015 23:04

He's in pain if touched for nappy changes etc and cant walk properly.

Dr looked rather confused too and the metanium on top probably didnt help.

He has to be re assessed on Tuesday

OP posts:
Booboostoo · 16/03/2015 06:22

I can't guarantee the Pain clinic will be able to help. The doctors I knew who were part of pain clinics were all palliative care specialists and said the idea behind the clinics was to share the specialist pain management knowledge they had with non-palliative cases. The emphasis was on otherwise unmanageable pain not whether it was chronic or not although if this little boy has been in pain for most of his four years of life that makes it pretty chronic.

Of course the OP should also pursue a diagnosis through specialist referral to GOSH or elsewhere at the same time.

Original poster
LostMyBaubles · 16/03/2015 08:45

Will definitely ask about this on Thursday when hes next at the gastros.
Will have a lot of questions to ask and a lotof things to mention. A friend of mine has a dd who has low iga levels and a lot of things she suffers from is very similar to ds. Shes had stool sample sent and resulta show something that indicates crohns.
Hes never had a stool sample sent or asked about from the hosp!

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

I think he might be over this 'flare up' as hes a lot more happier in himself which is brilliant but they wont see anything next week then will they?
Hes happier now but he did also say he was scared of the drs so maybe that could be playing a part of him not replying when asked?
So bloody confusing!

OP posts:
Booboostoo · 17/03/2015 09:14

Good news he's feeling a bit better. My DD got very stressed about doctors after several hospital visits and we found that role play helped her a lot. She has a doctor's kit and she play acts what has happened to her which seems to help her come to terms with it. This might be helpful for your DS as well?

I think that is the right approach; ask a million questions. 99 of them may be useless but you only need the one good question to get someone's mind moving in the right direction. I do not think doctors are uncaring or incompetent, but in complicated cases, across specialties and with many different symptoms some doctors can become blinkered by what is in front on them at that moment and miss out on the bigger picture.

Original poster
LostMyBaubles · 17/03/2015 09:24

Scrap my last post.
He said it does hurt but was scared. In this time he had pain in his groin area due to the swelling too so that pain might have distracted him.
Ive met many drs and 99% have been very caring but that 1 dr whom we saw last week has always been difficult.

I begged him for a scope as it had been soooo long and he was losing blood in his aspirates. He scoped him2 months later and did colonoscopy with no bowel prep and said he couldn't see anything. Well shit sherlock you wont see any upper gi bleed 2 months later and you cant do a colonoscopy with no bowel prep Confused
he also said ds gastric problems where because of him being frustrated as he couldn't talk Hmm he could talk he couldn't understand his accent. It was verystrong and I could only just understand.

There was only a small amount of blood today in his aspirates

OP posts:
Original poster
LostMyBaubles · 17/03/2015 09:27

Just read that post again and sorry if it sounded a little bitchy. Didnt mean for it too.

Thats a good idea about role play and he had a drs kit and would pretend to check our temp and do bp and listen to chest etc and he is fine with all of that. Think the problem was the canula and taking bloods as last 3x hes been to drs/hosp they've taken blood.
hope your dd is ok now

OP posts:
TwinkleDust · 17/03/2015 10:01

Any possibility of going private, at least to get some sort of definitive diagnosis? (I know you shouldn't have to.)

Booboostoo · 17/03/2015 13:02

DD is much better thank you. Cannulas and blood tests were a horror for us. When she was about 3yo she was finally old enough to be distracted by the iPad so that helped a lot. Might be worth a try?

Original poster
LostMyBaubles · 17/03/2015 15:15

Hes got his own tablet and we have a shared ipad and even games on mine and dh phone too just in case we are ever caught out.
Still not enough to distract so easiest thingis to get it over and done with.

Can I ask what was wrong with your dd?
If you dont want say you don't have to. I understand sometimes it brings back horrible memories

OP posts:
PacificDogwood · 17/03/2015 17:53

Does he ever get EMLA cream put on before bloods? It might help a little although some kids get more wound up by 'having something on' IYWKIM.

Don't worry about not being taking seriously if he looks better at the appointment next week.
Keep a diary of symptoms/problems/blood in aspirates etc. and take it to your appointments.

I would pursue the whole immune insufficiency (IgA def is not that uncommon) and inflammatory bowel disease tbh.
And what on earth was that swelling down below all about?! Confused

Booboostoo · 17/03/2015 18:49

Sorry I don't want to derail your thread with my DD! I was just put in mind of a couple of things that were similar in terms of helping young DCs cope. My DD had a wrong diagnosis of brittle bone disease and possible blood problems that sent us off on endless tests and specialists abroad (I am not in the UK). After quite a few months we eventually discovered she has a genetically abnormal bone which doesn't affect her in any way and a nutritional deficiency that was corrected with iron. Not having a proper diagnosis was a terrible time and I feel for you.

Original poster
LostMyBaubles · 18/03/2015 08:18

I do keep a diary and have done for around 5months.
As for going private. We tried to once and the dr wouldn't accept us as he needed a lot of tests etc and said do it on nhs.

Dont have a clue whay the swelling was about. It's starting to clear up now thankfully.

Bloody hell. Bet that was horrible! Poor you and dd. We have a few diagnosis I just domt think 'thats it'
officially:
Severe gastric reflux
chronic constipation
dairy allergy
low iga levels
gut motility
asthma
development delay (was 4yrs4months when tested came back as 16months but theres no way it should be that low )
Autism?

Tried the non verbal paim scale yesterday and he just got reallllyyy confused and said I dont know

His letter says
this complex young man continues to have some issues surrounding allergic - related non ige mediated gastrointestinal dysmotility?
So allergies make his gut slow?

Trying to see if ive missed something.

Says last endoscopy was completely normal but
macroscopically and histologically and blood tests indicated an intercurrent infection with slightly raised esr at 14, neutrophil count 8.3 and ast at 107. Hb normal 119

OP posts:
Original poster
LostMyBaubles · 18/03/2015 08:20

So is endoscopy classed as just goinf down and not the colonoscopy?

OP posts:
TwinkleDust · 18/03/2015 08:59

endoscopy upper gut (go in through mouth)
colonoscopy lower bowel (go in through bottom)

Original poster
LostMyBaubles · 18/03/2015 09:53

I know the difference was just trying to establish if what he'd put in the report was for the both of them? Which im guessing isnt for the both of them?

Hes having an really bad day so far. Screaming due to routine change later (sigh).

OP posts:
SpringTown46 · 18/03/2015 11:08

Should be separate comment for colonoscopy.

PatterofaMinion · 18/03/2015 11:19

I hesitate to chuck this in to a thread overflowing with ideas and attempts to help, but has anyone yet mentioned coeliac - not sure if it might be totally useless as a suggestion - but it was what jumped out at me immediately.

Good wishes to you and your little one. xxx

Original poster
LostMyBaubles · 18/03/2015 14:56

Thats what I thought. There was nothing on that letter mentioning the colonoscopy and he had them done together.

His next endoscopy and colonoscopy is next Friday.

Hes to be admitted for bowel prep.

Patter we have had a look into this but tests would come back negative as he hardly eats enough gluten for a true result.

Thank you for the suggestion though, it all helps

OP posts:
Original poster
LostMyBaubles · 18/03/2015 22:01

If he had egid his esonophil count would be high?
Just checked his last blood report and they are low Confused

OP posts:
NotAnotherPackedLunchBox · 18/03/2015 22:23

Hi,
If he has EGID then the blood eosinophils may be low or normal. It's the eosinophil count that is found in the biopsies they take during scopes that would indicate EGID.

fabed.co.uk would probably be worth a visit and can I second what others have said about trying to get him to gastro at GOSH.

Flowers Hope things start looking up soon and that you get some answers.

Original poster
LostMyBaubles · 19/03/2015 19:42

Saw a different consulant today.

She did his colonoscopy last time and remembered. Entrance to colon was red and inflammed.

She ? Esonophil colitis?
Plan
stool sample next week
urine sample today
bloods next week and both scopes
shes speaking to microbiology re antibiotics
if that shows nothing then 6 food elimination diet (dairy, soya, fish, eggs, wheat and nuts)
then ? Gosh
Was going to give oramorph but wants to wait until next week.showed her the pics and she agrees its not normal and it was blood.

OP posts: