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?

Pacific could the ast levels and this bile be linked?

Afaik bile is made in liver but stored somewhere else? Iirc?

Today we are heading to the gastros. He has bowel prep and stool sample etc today and scopes tomorrow
fx something shows (as horrible as that sounds)

Well bowel prep is working.

Hes lost some blood too. Kept a nappy for gastros in the morning
hes 3rd on tomorrows list.

Hope you start to get some answers very soon.

Thank you
well he was bad last night and he had some oramorph which helped a lot

hes gone down to theatre
still bleeding in stool which drs saw last night

Wtf am I supposed to do now to help him?

His scopes were both apparently ok.
Nothing obvious

all this pain and bleed and dodgy blood levels but nothing on scopes

They did last bloods for ast in October and nobody picked up his almost double ast levels apart from me and I asked about them and they said yhh they need checking again and if its still high he will need further tests and maybe key hole surgery (for what I dont know)
mentioned something like possibly minmis or mimis or something that can also causebbleeding

You are your child's best advocate.

So.

You ask questions.
Pointedly write down answers [don't rely on memory]

Log everything and date [if you haven't, try to create a written retrospective of actions/dates/ outcomes so far]

Ask more questions. Try to be specific ["Doc, why is there blood in stools?" "why are ast levels high"? "what is the next step?"]

This will help you [it is something positive you can and need to do] and your child [it is likely you are the only person with an overall picture of all the different potential clues].

It also creates focus, means the professional staff become directly responsible for answers they give (no diffusion of responsibility).

Spring I already do what youve mentioned.

Have kept a diary for some months now which is food, stool, symptoms and in brief whos said what and where.

I have a notes section on each page too which is where I write my questions

I know if im not specific they wont tell me whats going on.

There answer to blood in stool was
first dont know
then a tear (but couldnt see one and bleed has been over 2months)
then could be mimi or something (didn't quite understand her accent)
and that they will want to operate to see what's going on.

I want to know what they are looking for before they cut him open

What I am wondering is this: do you think that there is a lack of a whole picture? Do you feel like the Docs are just looking at their one area of consultation and just passing it on/ going round in circles?

Definitely think they arent looking at the full picture.

Feel like they've zoomed into one thing and they need to come out and look at him as a whole taking everything into account.

Personally I think they could do with putting all the important bits down on a piece of paper and then look at him
like his history of meningitis, bloods, scopes etc rather than just looking at one thing.

Aw, Baubles, how horrendously frustrating for you - and horrible for him of course.

You are doing a sterling job, you know that, right?

Could you ask for a formal sit-down meeting with his consultant (maybe the keen new one) with a view to going through his illness trajectory, taking all your information/their information in to account?
It may point towards something or it might not, but at the very least you need to be satisfied that nothing has been missed and you need to feel confident that everything that can be done has been done.

Sadly not every obvious and apparent illness fits into known 'patterns' - medicine is easy when everything presents in a typical manner, and horribly hard when it's not that straightforward.

Just v briefly coming back to the GAPS diet - I really don't know anything about it and was not throwing aspirations towards it and I don't disagree with anything sleepywombat has said wrt Big Pharma and the lack of studies for things that seem to offer little in the way of profit. However, the 'inventor' of GAPS is making money, so I reserve the right to be wary. AND, more importantly, I thought your comment about whether your DS would get enough nutrition and calories is a valid one and at the very least needs to be explored.

Of course you'd try anything that might give your DS relief. I hope you sometimes look after yourself as well as you do after him.

I think there is value in putting all your notes/records into a formal format.

So, think: headlines, short summaries and bullet points (e.g. history, symptoms, actions, outcomes, to date.) Concluding with outstanding questions, and a request for a plan of action from key professionals involved.

Then present this to the named key professionals, either in person, or sent signed-for.

This strategy has two merits. Firstly, your round-up and overview will be helpful, to you and them. Secondly, it highlights the going around in circles scenario and places their responses firmly under the spotlight.

(I know you shouldn't have to be the one doing this - but just being pragmatic about cutting through the impasse you are finding yourself in)

Have a read through some of these blogs written by survivors of meningitis, there might be something that stands out for you?
www.meningitis.org/blog/about-meningitis-septicaemia-long-term-after-effects-35764

Thank you for the link will carry on reading through it

Just going through everything to bullet point etc will run up to the library or ask a friend to type it up and print it out

Pacific just seen the lab report again there normal range for ast is 13-61 and his was 107

erythrocyte sedimentation rate was 14 normal 0-10

Neutrophil 8.69 normal 1.70-7.60

esonophil 0.4 normal 0.5-1

red blood count 5.08 normal 3.93-4.99

mean cell volume 72.3 normal 75.0-87.0

Mean cell haemoglobin 23.4 normal 25.5-30.0
This was 2014^

this 2012
mean cell volume 71.1

rbc zinc protoporphyin 68 normal 25-60

Vit e 30.7 normal 9-28.0
vit e/ lipid ratio 6.0 normal 3.0- 5.0

Glutamine
452 normal 550-830

Mean cell haemoglobin 23.7

haematinics 741 normal 191-663

creatine 22 normal 23-66

Was looking for his iga lol
the only report I dont have is for oesophageal biopsy distal

Iga is 0.38 was 0.6 in 2012

The full resultsFerritin low less than 4
B12 316 whixh is normal
Serum folate 18
Hb 11.5
White cell 10.5
Platelets 379
Thyroid normalLfts normal*TTG lesd than 0.1 although IgA is low at 0.6, lgG was less than0.1 . Vitamin D was 68.8 which is normal.

2012 results

He is iron deficient - hence the low MCV etc.

Some of the other 'abnormal' results don't mean much i.e. lowish creatinine may well be related to him (I'm guessing here of course) being skinny? Low muscle mass = low creatinine.

Bear in mind that the normal ranges are set by a lab according to local averages and being outwith an average does not necessarily equal illness.

He is iron deficient - can he get a liquid iron supplement down his PEG tube? Iron can be quite hard to take as it's poorly absorbed. It can help if he gets it with Vitamin C (fresh orange juice if he can take it).

All the white cell/neutrophil readings I'd take with a pinch of salt - low level stable elevation in somebody with a PEG may not mean much at all tbh.

When are you next seeing one of his docs again?
Has he recovered from his scopes?

Thank you for translating that Pacific
hes not underweight any more. Hes more or less on same centile for height and weight.

Hes very touchy feely today and keeps crying.

Seems to be going red like when he gets a temp. Will be keeping close eye on him.
His temp is 37. So thats ok for now

Has he be screened for all heavy metals? Probably an obvious and stupid question, grasping at straws for you and your poor wee lad

*been

?

Was the question mark for me? If so, I was asking if signs of heavy metal overload had shown up in his tests. Some people can't process them very well, sometimes leading to some of the symptoms you described.

I don't know if this helps at all but when DD had her various problems which included severe anemia we proceeded by a diagnosis by elimination. The docs looked at all sorts of weird things in order to exclude them. With reference to the anaemia she was screened for heavy metal poisoning and we (DH and I) were screened for thalassemia and other blood disorders. In the end we concluded it was nutritional and it was corrected with iron supplementation but had it gone on it would have caused all sorts of complex problems.

Sorry, yes Dutch it was for you, didnt have time to expand lol

boo they've not said anything about us being tested. I know I suffered from anaemia a few times, was folate deficient and needed b12 Injections. When we first ttc and couldn't went to gp for bloods and after a few rounds of injections was ok.

Had antibiotics a lot during pregnancy and the drug for chicken pox which hadnt been licensed for pregnant women but dr reassured me that it was lesser of 2 evils

bilateral excavatum and scoliosis is whats being said about ds2. Whats that?

Haven't had a chance to really look. Dont think I want to tbh :(

Dont want to confuse anyone this is post is about ds2

Ds1 had no pain up until an hour after having chicken 2 days ago.

had to takw him ooh due to sore bottom and hes upset as no one fixed his tummy