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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 · 04/03/2015 17:22

Nope hes not been diagnosed yet.

Hes been to cdc today so that's another thing to worry about Hmm

Bleed was light pink this morning.

Will see if gastro emails back before next appt which is next week

OP posts:
RestingFuckFace · 04/03/2015 21:53

Op, usually the 'newer' (pinker, redder) the blood is, the further down the colon it has come from.

So black tarry blood has come from the stomach of higher up in the gut.

The redder and 'newer' the blood is, the lower down indicating things such as piles etc.

My sons bottom bleeds after a very bad reaction because he gets hives and spit skin on and inside his rectum. Its an awful, painful thing to witness. Sad

Original poster
LostMyBaubles · 05/03/2015 07:40

The pink blood isnt coming from his bottom. Its coming from his stomach. In the morning and during the day I will attach a syringe with no plunger to his feeding tube which will let out gas and some stomach juices. This is where the bleed is coming from.
The black/dark red stuff is coming from his bottom in his stool

OP posts:
Original poster
LostMyBaubles · 05/03/2015 18:34

Checked his stomach contents aftet school and there was some red blood which means hes still bleeding.

I did email gastros again. Dr is in the office tomorrow so hoping to get a reply.

On the plus side hes not had a lot of pain today but then hes not eaten anything except tje sides of chips all day.

OP posts:
thornyhousewife · 05/03/2015 19:20

I wish I had something helpful to say, I'm just so sorry you are all going through this, he is a very lucky little boy to have you as his mum and I hope more than anything that things move quickly for you now and he gets the diagnosis and treatment he needs.

Original poster
LostMyBaubles · 05/03/2015 21:52

Thank you

still got black specs in stool

OP posts:
Original poster
LostMyBaubles · 06/03/2015 09:32

Fx the gastro gets back to me today!

Hes in pain again. He had no pain last night but hardly ate.

Hes all upset due to the pain

OP posts:
Original poster
LostMyBaubles · 06/03/2015 10:01

Dr has got back to me.

He wants scopes doing and ph probe. No colonoscopy yet as he had1 end of last year.
He wants ph probe doing on meds to see how his reflux
he said blood count has dropped a bit more from 109
he said he is a little anaemic
he asked about thalasemia?

If anyone in the family had it? I did tell himhes in pain on a daily basis now
my great gran had pernicious anaemia?

OP posts:
RabbitsGoMoo · 06/03/2015 11:09

So sorry your going through this with your DS,

It may not help but il throw it out there and let you decide, there's a book called gut and psychology syndrome by the woman who did the "GAPS" diet and I found the info in the beginning with her theories quite eye opening...

I really hope you get the help he needs soon

Original poster
LostMyBaubles · 06/03/2015 11:27

Thank you
will give it a Google
my last google search showed that there is links between pernicious anemia and gut problems etc.
Getting a bit more complicated now for a bog standard google lol.

OP posts:
bringmejoy2015 · 06/03/2015 11:49

This reply has been deleted

Message withdrawn at poster's request.

PacificDogwood · 06/03/2015 12:37

Thalassaemia and pernicious anaemia are very different conditions and have nothing to do with each other.

I am so sorry that he is in pain, but impressed that your gastro has been in touch with you.

I don't think that probiotics would do any harm and longterm antibiotic use does have its downsides, so you could consider trying them. If you don't want/can't go down the yoghurt route, you could consider a supplement. Health food shops and larger chemists usually stock lactobacilli and other probiotics that can be added to whatever he eats or even go down his feeding tube.

Original poster
LostMyBaubles · 06/03/2015 13:34

Hes had a few endoscopies done I think 6?
Will google that. Hes always had a weak immune system and has needed antibiotics a lot. Hes one of those who get very ill very quickly.

Will google that about the microbiome.
All the suggestions help, filtering through them and ask the dr about them so hopefully we will become one step closer to finding out whats wronf with him.

OP posts:
Original poster
LostMyBaubles · 06/03/2015 14:00

Sorry missed your post Pacific
I dont have a clue what they are, I was asked about thalasemia and I asked my dm who mentioned p.a so thought I'd email back with the info and I said I dont know if they this information is relevant and he said it was?
I do remember I had a hard tjme time conceiving ds1 and it was my b12 that was really low anf was in weekly then fortnightly then monthly b12 Injections

I also had a few kidney infections and was treated with antibiotics and was given the medicine for chicken pox for a while as we weren't sure if I'd had it and someone in the family did while I was pregnant.

Obv I dont know what relevance this has.

He was on moducare but that was really hard to put down his tube

gastro is brill like that. I understand hes busy and all but he will get back to me when he has time

OP posts:
Original poster
LostMyBaubles · 07/03/2015 08:21

He hardly ate again last night. He ate a few bites of chappati (out of his choice) and that was it.

He have dietitian coming on Monday as we may need to add an extra feed due to his weight loss.

Not aspirated him this morning as hes still asleep

OP posts:
Original poster
LostMyBaubles · 07/03/2015 21:41

Yet again hes not had no food and hes had no pain.
his aspirates was clear this morning

hes had some food and now he's in pain again

OP posts:
PacificDogwood · 07/03/2015 21:55

I can only imagine how hard this must be for you and him, day in, day out Sad

Does he get feeds down his NG tube overnight? Can you up them a bit to make sure he gets some calories down him?

I've once known somebody how had a naso-jejuno feeding tube - the tube went further than the stomach and the duodenum to the next part of the small bowel (the jejunum) thereby avoiding stomach and pancreatic issues. I have no idea whether this might be relevant to your DS, but worth another question?

Original poster
LostMyBaubles · 07/03/2015 22:12

His isn't a ng its in his stomach
he has 1000cals through his tube per day and what ever he eats. Will probably increase it to 1250 on Monday

OP posts:
PacificDogwood · 07/03/2015 22:14

Well, if his feeds agree with him (no pain, no blood) then it might be worthwhile discussing upping them in the short-term?

I thought 'NG'=naso-gastric i.e. sits in his stomach?

Original poster
LostMyBaubles · 08/03/2015 09:06

His is a peg gastrostomy
ng is the nasal tube that sits in the stomach and this is one thats actually been inserted through his stomach wall

If you google gastrostomy peg feeding tube you will know what I mean. I was going to link but I think the pics are a bit tooo much for a sunday morning lol

aspirates was very close to clear just some pinkness hes in pain though this morning

OP posts:
PacificDogwood · 08/03/2015 10:07

Ah, yes, a peg tube - I understand.

Sorry to hear he's in pain again. Poor wee mite.
Thanks

Original poster
LostMyBaubles · 08/03/2015 10:50

Pacific can I ask are you in the medical profession? You do sound very clued up on all this

think im going to email the consultant again with the following info
Low neutrophil count
meningitis as baby
my brother had to have albium (sp?) Drip on when he was younger due to some deficiency

OP posts:
PacificDogwood · 08/03/2015 10:53

Yes, but I'm a lowly GP so really have no expert knowledge.

Albumin is a protein - I have no idea what it means that your brother needed it in a drip Confused

I think from your posts that at least you have a v good means of communicating with your DS's gastro - believe me, that's not always the case.

Keep passing all the info on that you can think of - it really sounds like he does not have something 'run of the mill'. I would assume that his gastro has thought of EGID too.

Original poster
LostMyBaubles · 08/03/2015 18:04

Dont have a clue what she means then lol.

Hes never mentioned egid. Will bring it up.
Tbh all focus has been on reflux, ftt and constipation

Ahhh a gp. You've been more helpful than my gp. I took ds to him twice a week as he was losing weight, crying, being sick, not eating etc.
He dismissed me as a young mother who knew nothing Hmm

OP posts:
PacificDogwood · 08/03/2015 19:32

Ha! I've been that elderly mother who knew nothing - believe me, having a medical degree does NOT prepare you for motherhood, never mind looking after a poorly baby/child (and none of mine have been as ill as your DS)