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?

My premature DS2's reflux was cured after his barium meal.
Still had nothing to do with it.
I'm glad your DD is better and that you felt the test and its results helped her recovery, but I'd be very very reluctant to consider going down that kind of route with a child who sounds as ill as the OP's tbh.
There is not a shred of evidence for these tests.

Pacific- completely take on board your valid points. Not suggesting op stops conventional treatment though but to maybe think about trying it in addition to his current treatment.

Fair dos

Nope no rast tests? What are they?

Will have a chat with dh about the hippy drops stuff. Worth looking into if theres enough info about them

im from manchester and he was originally under Sheffield children's as his gastric dr is one of the best in Europe dr mike thomson.

Then once his tube was in and he was puttinf on weight was discharged to Manchester childrens which is shit for gastrics. There waiting time was 8months and Sheffield saw him within 2 days of referral.

I have 2 other dc under 2. And rhe 2nd one has medical issues too so travelling to London would be hard for us as dh cant get time off but if it meant that ds1 was sorted out its worth it.
I will put everything down in his diary so I csn mention them to gastro next week. Will see what he says and if no further tests are done will ask for gosh referral. I do think these could help him its just jumping through hoops isnt it?

never been told to cut gluten. Tbh he doesnt really eat much anyway and I cant see much gluten in his diet.

All these ideas are brilliant thank you all.

I can go armed next week with more questions!
I definitely want another endoscopy and colonoscopy doing. I asked a family friend anf they said duedonal (sp?) Biopsies should be done too.

I want more tests doing and I want better pain relief. Whats next? Is it oramorph?

I get what Pacific is saying too. So much going on atm

hes had a barium done when he was around 10months old iirc.

Just feel so useless as a mum when theres fuck all I can do physically to help my own child.
I think a few tears at the hosp might help.

The problems we have had with ds2 were nothing like as severe as you've experienced, OP, but, he's had severe dairy allergy since birth (he carries an epipen due to previous anaphylaxis), reflux (resulting in his projectile vomiting on average 5-6 times per day), food aversion as a result of the above - he didn't eat voluntarily until he was about 3, damage to his gut as a result of the reflux (gastroenterologist said even if the reflux stopped immediately, it would take months for his gut to heal).

He is now 6 and is still under a pediatrician for failure to thrive (though he now sticks to the 0.4th centile for both height and weight) and his dairy allergy.

He's much improved on where he was, after years of hospital appointments, endoscopes, reflux meds (none of which really made a difference), pediatrician, clinical psychologist, dietitian (useless) and now as I say, eats voluntarily and doesn't throw up every day, however, it was hard going for years.

You have my sympathy.

Magrat how old is he? Its hard when they are like this. Ds fell of the centiles before his tube and the tube saved his life. Hes still sick but not everyday as he doesnt likeit and wilk force himself to stop being sick.

We think he was allergic from birth too as when I was bf him he would react instantlyand would be sick and scream and would come out in a rash with each feed.
Of course gp dismissed everything.

Oh, and the biggest factor which helped improve ds2, was stopping the neocate he was on for his dairy allergy. It made his reflux considerably worse.

He's now 6.

There is no rule on the number of opinions one is entitled too as such, if there is demonstrable clinical need to keep investigating then you can have as many referrals and opinions as you need. I think this needs the expertise of GOSH or another tertiary centre. I also think just looking at this as a gastro problem is a mistake its not just a gastro problem that is just the most major presenting symptom. Looking at the picture as a whole and I am seeing a PID or a rare genetic syndrome the kind of thing that doesn't appear on most doctors radars which is why it needs a more specialised approach. Do the Drs think that the prophylactic antibiotics could be worsening his bowel issues? Some are known to cause serious bowel symptoms. What antibiotic is he on. Which Dr prescribed it?

I was going to suggest seeing if you could get a referral to Dr Shah at GOSH as I worked with him when I was a theatre nurse there a few years back.

Repeat endoscopies sounds like a good idea.
Duodenal biopsies are the gold standard for diagnosing Coeliac's disease, but it is important that he has a diet that includes gluten until the biopsies are done.

I am glad you are keeping a diary - it is so easy to forget or not mention things during a rare consultation and then coming home to realise stuff was not mentioned that was important.
Do write questions down as they occur to you.
I hope you can have somebody with you when you go for DS's appointment - another set of eyes and ears.
Keep notes during your consultation - no dr worth their salt will mind that.
Do cry if you feel like it, certainly don't minimise or put a 'brave face' on how bad things are.

RAST blood test is good for some food allergies, but not all - allergies is such a complex field and does not even include food intolerances so a multidisciplinary approach is really important.

You have your plate more than full, so I hope you get a chance to look after yourself too

I feel for you both, it must be so hard.

I have no extensive advice, but my DD had a particularly painful condition (not all that detrimental to health in any other way though) when she was 5. She was given both Paracetamol and Ibuprofen to alternate for several months, neither of which really helped the pain. In the end, the GP calculated a new dose based on her weight. He said that the guide doses act as almost certain failsafes in the case of 'smaller' children. Eg. a tall/large 12 yo would require more pain relief than a short/small 8 yo, but they are given the same dosing guideline.

So if your DS doesn't already have a specifically calculated dose, speak to your GP and see if it is an option.

Good luck OP

Have you considered EGID (eosinophilic gastrointestinal disorder) as a diagnosis?

Here's a list of symptoms from their support site:

www.fabed.co.uk/3.html

I know someone undergoing investigations/treatment for their child with EGID at GOSH and the symptoms sound very similar. They had to fight tooth and nail to get to GOSH but are at last making headway in getting an improvement in the child's condition.

You will have to fight, hopefully not tooth and nail but maybe that hard, but I think you are hearing that GOSH is were he needs to be seen and had at least one recommendation as who to see there. Thing is I can tell by the fact you have written this post that you are the kind of mum who will make sure her son gets the right diagnosis and fight as hard as needed. That's what my user name refers to ' not given up yet' although sometimes I think I have, then my children remind me why I can't. My children were 10 and 11 before they were diagnosed and I was in my 30's we were passed from pillar to post and I was treated like an hysterical mother etc. Good luck and keep posting for support. Remember a lot of decisions in the NHS are made due to budgetary reasons not clinical reasons sometimes you hear 'no' but don't accept it if the reason is they don't want to fund a referral rather than because he doesn't need a referral. Contact PALS and start applying pressure. Put in writing your sons suffering and how is condition hasn't been properly diagnosed, investigated or managed.

I have thought about egid but would that cause bleeding?

I have just written everything down in the diary.
He sees his general paed end of the month too so will mention to her too.

I have tried to keep a brave face and keep it together for the sake of the kids.

Both dh and I have just sometimes sat andwatched hhim sleep while being very teary.

I think that yes, EGID can cause bleeding. That's not to say that it is EGID, but nothing you've said rules it out either. My understanding is that EGID encompasses a spectrum of eosinophil-based gastro disorders, rather than being a very specific diagnosis, and can therefore differ starkly from patient to patient.

I know FABED are a great support for lots of EGID parents, even before diagnosis, so might be worth having a look through their website or even posting on the forum asking for advice - others may have trodden a very similar path (even if your boy does in fact have something else).

Poor little boy I hope you do find a solution. I thought Crohns/Coeliac straight away because of experiences with relatives. They were adults when diagnosed, were quite ill too; it's so sad to hear of your son's suffering. I'm surprised they haven't advised against gluten. It is thought that gluten and lactose intolerance sometimes go hand in hand.
The SCD was mentioned - the Gaps diet is another one said to help with gut issues?

I think they want him to still eat orally and so dont wamt to limit his oral diet too much.

I just remembered when ds was younger hr suffered from low neutrophils too?
Dont know how significant that is. And that was a different hosp to where he is now. Hes been to that many I cant remember which one it was

The low neutophills could be hugely significant, yes particularly if it went on for some time and couldn't be attributed to anything. Did you say he has low IgA? He has experienced lots of reoccurring infections? A life threatening infection? This is why you need a specialist Immunologist/Geneticist to look at what is going on here. If you read up on IgA deficiency syndrome a lot of the symptoms you talked about are apart of the syndrome such as the Crohns.

OP

He had meningitis and sepetcmia as a baby. Is that major enough??

Hes had neutrophil checked 3x and I think twice was low and last time was fine.
He was always getting infections. Once he was on 8 lots of antibiotics in 6weeks!

Your poor little lad. There are a lot of people on here who have some very sensible suggestions and ideas, and are clearly infinitely more knowledgeable than I. But just wanted to tell you that DD had a very bad infection as a small baby and was in hospital being pumped with various antibiotics for about 2 weeks. She went on to developed food intolerances (causing severe pain and constant diarrohea) and her consultant and dietician strongly suspected that the antibiotics she had been on (the strength and duration in particular) were the cause of this.

Obviously DD wasn't anywhere near as bad as your DS - but the link between infection/AB's as a baby and subsequent gastro issues might be something worth pursuing.

He was on 2 weeks iv antibiotics then 2 weeks oral iirc for the meningitis.

I wouldn't even wish that on my worst enemy!

I do truly think that the meningitis has played a massive role in all of this.

Hes on cefixime antibiotics and has been on them since September and was fine up until 6weeks ago. He first started bleeding in his aspirates and then lost a lot in his stool.
Blood count in October was 119 and after the bleed in stool it was 109

Oh he hasn't been diagnosed with egid?! Jesus I just assumed he had, he has every single symptom!

I drive home that you need to go to London and see Dr Shah, your son has ALL the traits for egid and yes it can cause blood in stools and be definitely needs RAST tests (blood test to show non-ige allergies that effect the gut).

OP Ive been in a similar position to you, my 3 (nearly 4) year old is ige (anaphylactic) to 8 things and has a non-ige reaction to many, many foods. Is a long, hard slog to find them all out but he has had many allergy tests skin prick and RAST tests in London and they truly are amazing.

Dr Shah is your man. He works in both GOSH and St Thomas.