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AIBU?

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:

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LostMyBaubles · 02/03/2015 22:12

Just to clarify im not asking for a diagnosis or anything of anyone.
Even a handhold?
Or maybe 'I know xyz had this maybe worth mentioning to dr etc'
one big thing I missed was he had meningitis as a baby

OP posts:

TwoOddSocks · 02/03/2015 22:13

YANBU. I wouldn't begrudge you trying to get as much help as you can. Your poor DS and poor you. Good luck.

PacificDogwood · 02/03/2015 22:14

YANBU.
How could you be?
Your poor DS and poor you - it must be so hard to see him going through all this.

Is he still tube-fed?
What does gastro say? He must have some kind of working diagnosis?

PacificDogwood · 02/03/2015 22:15

You could post in Children's Health on here?
Big pool of knowledge and experience there.

FarFromAnyRoad · 02/03/2015 22:15

I can't begin to imagine what your life is like. I'm always in awe of people like you. I'm always aware that whatever I say sounds trite - I don't mean it to.

Killasandra · 02/03/2015 22:16

Check out the treating autism website. Lots of stuff on there you might find useful.

standingonlego · 02/03/2015 22:20

Goodness gracious, your poor DS :(

Have you encountered / heard of / tried the Specific Carbohydrate Diet?

Really helped my DH with ulcerative colitis and a friends son with autism. Hard to do (e.g, no carbs, no grain) but worth a try...I am no expert on it but sure done someone will be along soon that is. It has been transformative fie DH.

PintofCiderPlease · 02/03/2015 22:23

Handholding here.

Does he suffer from reflux when he's fed with the feeding tube, or is he fed because the reflux is too bad?

The severity of it all really sounds as though there are a few things going on, which overlap.

Is there a reason why they won't give other things for pain relief? Because it must be SOOOO awful just watching your DS in pain.

If you can't use anything else, have you tried massage? Perhaps with some essential oils in the massage oil. If nothing else, the body contact will help calm you both.

LostMyBaubles · 02/03/2015 22:23

His diagnosis right now
failure to thrive due to reflux and food aversion and dairy allergy.
Low iga levels (used to get ill a lot but now on long term antibiotics)
dairy allergy
severe gastric reflux.

In a letter that the gastro did for school he put 'hes a lovely little boy but is very complex'

Hes been bleeding inside fir over a month. His blood count has fallen to borderline transfusion level and hes still smiling through it.
Hes sat next to me cuddled in my bed watching tv as hes in pain and cant sleep.

I was goinf to post in children's health but thought aibu would see more traffic.

Thank you

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LostMyBaubles · 02/03/2015 22:27

Hes tube fed as his reflux was so severe he wss back at birth weight by 18months.

Took us 18months to get to a decent gastro.
Then once tube was placed was discharged to closer children's hosp who are shit. Took another 6months to get back to original gastro.
we travel close to 2 hours to get to his gastro.

He cant have ibuprofen due to bleed.
Clinically he just looks pale but is very bouncy and jumpy. Which is him no matterwhat (asd)

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Crabstick · 02/03/2015 22:28

Poor DS, how awful. I hope he improves soon.

stand my husband had UC, the specific carb diet made him worse. Bloody awful disease so im glad it worked for him. Some of the symptoms sound like Crohns disease.

QueenArseClangers · 02/03/2015 22:30

Nothing useful to add but you're obviously a fantastic loving mum. Give him a cuddle from me please, brave little thing

LostMyBaubles · 02/03/2015 22:30

Hes in pain most of the day but seems to get worse after eating imo.

He doesnt eat a lot. He loves chicken.
Hes had a few spoons of plain rice and a few bites of chicken all day and now this.
I cant say no as he really wanted to eat and ive been told its counterproductive to say no when we've been working on him saying yes to food since his tube.
which was almost 3yrs ago

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Crabstick · 02/03/2015 22:31

lost look up Crohns and colitis UK (charity) , they may be able to help.

LostMyBaubles · 02/03/2015 22:31

Crab we (me, dietitian and salt) think crohns too.
When they did scopes just showed inflammed colon and inflammation inside.
All tests were 'almost normal'

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PintofCiderPlease · 02/03/2015 22:38

Rice!!!!!!

If he has gastric problems don't give him rice!

DS2 had sooo many problems digesting rice when he as a baby. It swells as it passes through the intestines and can cause soooo much pain.

If he has problems with his digestive system then you need to think about cutting out rice.

Crabstick · 02/03/2015 22:40

Your poor DS, so sorry you are both going through this. I understand the helplessness you feel, if he's bad can you take him to hospital x

LostMyBaubles · 02/03/2015 22:44

He doesnt have rice on an regular basis. Probably once a fortnight. He does have chicken everyday doesnt ask for anything else. Will remember the rice thing.

What else could they give him for pain?

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LostMyBaubles · 02/03/2015 22:47

He sees a dr and gets happy thinking they will make him better and because of his personality and asd hes always bouncy and jumpy even when he had meningitis he was still happy and smiley.

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PintofCiderPlease · 02/03/2015 22:54

Is it all over pain or area specific?

On and the rice - it took 10 days straight of not having it before DS stopped reacting - it was always about 6 hours after his evening meal, too, not straight away. When I realised what was happening I also realised that he was reacting during the day, but that he was more tolerant of the pain and was able to move himself around to reduce it to a tolerable level (stretching himself out etc).And he had no other illnesses. It took awhile for it to leave his otherwise healthy system. If your DS is so ill it may be worse for him.

Or it may be nothing - but definitely something to consider.

I'm not sure on what pain relief you can give. You don't want to make things worse internally - that's definitely something for your gastro to decide. That's why I thought some massage oils might be helpful. When you're in pain you tense up, which can then make the pain even worse. So while not necessarily helping with the initial pain, relaxing him with massage may reduce the overall pain.

Crabstick · 02/03/2015 23:00

Cod liver oil and aleo vera juice helped my husband on top of his medication lost

lougle · 02/03/2015 23:00

YANBU. I hope you get some answers soon.

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LostMyBaubles · 02/03/2015 23:09

Thank you.
We had around 3weeks of him having absolutely nothing orally (2weeks ago now) he has no food until around 4ish after school. He goes half time and I figured school would help keep his mind of the pain (at nursery so most is structured play)

He wont let me do anything like oils as hes quite averse to stuff like that.
He just says 'its smacking round and round tummy'

OP posts:

PintofCiderPlease · 02/03/2015 23:10

Maybe touching it puts too much pressure on it and he's uncomfortable with that.

LostMyBaubles · 02/03/2015 23:13

He will allow me to rub his stomach just not with anything wet
He wont say anything at first about pain but will be sat rubbing his tummy and theb once hes asked he will say yes tummy hurts a lot

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