I need help from all you SN mums who know a thing or two

[auntevil]

My NT DS is having soiling problems - although the 1st paediatrician queried the NT part - i think due to his SN older brother. I posted this query in children's health, but no replies yet. DS was put on Movicol over the summer as Gastroenterologist thought he was impacted and the diarrhoea was 'leakage'. This med made him looser than ever, so my GP stopped it. The gastro has now given Fybogel and Senokot and after 9 days the effect is the same - watery. Nothing so far has firmed him up - so he doesn't recognise the signs to know he needs the toilet. I know this is affecting him at school. I helped out the other day and someone smelt 'the smell' and another child said probably my DS - again. I could have wept for him.
Have phoned the gastro - only got the answerphone. I need to know what options there are to find a solution. What worked for any of you - How long did it take? (currently nearly 3 years of asking for help now).

What is his diet like?

Is there any possibility the loose motions are due to intolerance? (dd1 is gf/cf; she is ASD. dd2 is NT (thus far), but she too has a similarly dodgy gut - so we avoid gluten and dairy with her too. Of she had either, dairy in particular, her stools are loose and rancid.

Dd1 has had issues training for poos until recently - we changed the bread she is eating, and her stools are a lot firmer and she is beginning to recognise the signs of needing to go. So small dietary changes can have big effects.

I'm not an expert but, Movicol does tend to make the problem seem worse before it gets better -- if he is impacted it will go water-like until the blockage is shifted. It is also a longer term med and ideally should be gradually weaned off it.

Try and track down a continence nurse - your GP or school nurse should be able to point you in their direction.

My DS1 has been on Movicol for nearly 2 years - we are just at the point where he is in a good pooing routine(!) and accidents are rare. The continence nurse told me to expect him to be on it as a maintenance dose for the same amount of time that it took to get his bowel problems under control (so another 2 years though will gradually reduce the amount he has).

I know how upsetting it can be, so do reach out for help from the GP/Gastro/School Nurse/Continence nurse.

DS has had an endoscopy and colonoscopy - He has dairy intolerance and has been put on an IBS diet. They ruled out gluten as an issue with biopsy. He has been dairy free for more than a year now and this has had no effect whatsoever. his 2 brothers and I also have issues - but SNDS and I have the ability to control. My youngest DS is still at Pre - School, so being incontinent isn't socially such an issue.
Loose and rancid is exactly the expression i would use!

PolarEyes how long did it take on Movicol before you noticed any difference? I'm not sure there was any impaction at the time of starting the Movicol. DS had already by then been in for the endoscopy and colonoscopy and had a radical evacuation [shocked] before that. I tried the movicol for the school summer holidays and he leaked 24/7 for 5 weeks. You're right, it did get worse, but didn't want him to have to go back to school dripping. it was agreed that he should stop.

Whoops - forgot to mention. HV passed us to GP passed us to Gastro. School Nurse recommended a friend who does food intolerance privately and is still in the process of seeing if we 'qualify' for pull - ups. Eneurisis clinic wouldn't see my DS until he was 5 years old. Help from them did get my DS out of pull-ups and into pants with only accidents pm. now he is on the meeds, it is all day.

Sorry, I don't know your history - what SN does ds1 have?

And what dietary issues do you and ds1 have that you are able to control? And how do you.control them?
Have you looked into biomedical approaches at all? Dd1 gluten/dairy issues wouldn't show up on standard tests/biopsies. We use the Sunderland protocol for her - developed by the autism research unit at sunderland uni.

Aside from the dairy bit, what is an IBS diet? What do you avoid on that?

Have you thoughtabout seeing a nutritionist (NOT a dietitian)?

Sorry, lots of questions.

Silverfrog DS1 has dyspraxia. There has always been a query over aspergers, but he doesn't quite tick all the boxes. He is loose, but does recognise when he needs to go. He was diagnosed as sucrose and fructose intolerant.
I have ? - is the best way of describing it! possibly IBS, but over the years it has been classed as about 30 different dx and once i started having children, they rather took over with trying to get them all sorted.
IBS diet is the bland, non irritant diet with the major known causes of IBS removed. Caffeine - Alcohol - onions - spices - fried foods - fatty foods - cauliflower - broccoli - tomatoes - the list goes on!
Can you explain the Sunderland protocol
I agree re dietician. DS3 saw one after a year and a half wait. Only useful advice was about pureeing egg yolks for extra protein so he continues growing! How do you find a good/recommended nutritionist?

From memory it took a few days then it had very obviously worked though he was quite constipated. It has gone in cycles really, I generally find it is better to increase the no of sachets for a few days then reduce back down. How many sachets were you told to give? I agree you couldn't send him back to school leaking, it is such a miserable thing for the child and parent.

Gastroenterologist's secretary phoned. He will be in this afternoon and she will leave note and file for him to ring. Any ideas as to what I can ask for next?

aunteveil - the Sunderland protocol is explained here

basically, there is a urine test available, and they test for the incomplete breakdown of casein/gluten proteins.

the incomplete breakdown leads to absorption of inappropriate levels of proteins etc through the gut, and also their by-products.

dd1 tested off the scale (and it is interesting to see that your ds1's issues are autism-spectrum related. I think at one time Sunderland were theorising that up to 80% of people with ASD related disorders may benefit form their research)

as with anything, it is trial and error. we got dd1's urine tested, and she tested off the scale for gluten intolerance. not so for dairy, but dh has a dairy intolerance anyway, so maybe hers is linked ot this, rather than the specifics that Sunderland look for.

basically, she cannot have any:

gluten (wheat, oats, barley, rye) - thisis an absolute. coeliacs often have a tolerance level, and so a lot of products labelled as coeliac friendly are not suitable. dd1 cannot have any AT ALL.

dairy (specifically casein, the protein found in dairy products. some people find their children are able to tolerate A2 milks (such as goat, buffalo, etc) - the rpotin is slightly different.)
sweetners - a big no. same for flavourings (even "natural" flavourings and preservatives.

also no MSG (which is where the no natural flavourings come in. MSG can be both chemical and natural (often made from pear skins, i believe))

it is hard to get your head around to start with, but then it dawns on you that if you use just "real" food, nothing processed, it is a lot easier to exclude everything. it makes days out etc trickier to begin with, but you soon get used to it, and pack snacks etc.

oh, and a lot of children who follow gf/cf diets are unable to tolerate apples and citrus as well (I know this is the case for dd1)

nutritionist wise, I can recommned nutrilink

I have used them with dd1, and they take a nice gradual approach to things. not gung-ho with invasive tests, and a slowly-slowly approach to finding out what may be the issue. absolutely thorough, though.

Thanks silverfrog. I will be ringing the ESPA team this afternoon. I do get this niggling thought that we all have something related. I had also been looking at the genetic testing, but don't really know what i am looking for.
When i was young (not quite BC! ) my mum was told that it was a protein problem and i was put on a strict vegetarian diet - so it's interesting to read on ESPA site about the link with certain proteins. I don't think that in the 60s and 70s they had the same level of knowledge and testing that we have today.
The other genetic thing that i have always wondered about is the sugar issue. With intolerances to lactose, sucrose and fructose in the family. I read somewhere that if you can't process sugar properly, it could lead to it being stored improperly in the body. When you need energy, you need to access the sugar. if it's not stored properly, you can't access it easily. I've wondered if this doesn't help with dyspraxia? The slowness to process a simple move? the inability to hold his pen for any length of time? all could be related?

if you ask me, anything is possible with digestion issues.

I have long suspected yeast and sugars may be an issue for dd1 too, although everything has been so much better recently that I am jsut coasting along nicely for now.

have you read up about using enzymes at all?

there is a link on mandi mart, i think.

fascinating stuff. supplements of natural digestive enzymes to help breakdown foods that you might be struggling with.

there are acouple of good books too - Natasha Campbell Macbride's book Gut and Psychology syndrome is supposed ot be good, as is one on enzymes, hang on will search

here

I have this book, but haven't read it fully yet.

dh take senzymes for his dairy intolerance (only at times where to avoid dairy means lots of hassle, or where he doesn't want to kick up a fuss - eg at weddings/formal dinners, etc) and they have helped him loads

Do you use lactase? I use the drops in milk - particularly when not in the UK. I haven't tried the chewy tablets as DS3 can't swallow solids - God, we sound a right motley crew! If you use the chewy tablets, are they any good?

we use Houston pharmaceuticals enzymes.

hang on, will find a link.....

here

i am trying to work up to trialling the ones that are suitable/possibly to replace a gf/cf diet, but keep hesitating - why rock the boat? but then again, they could help her more...

it's all such a minefield, isn't it? and not supported by mainstream doctors (ie GPs, HVs etc) so have to do your own research etc.

dh tkes capsules, and my stepson is about to as well, having trialled a dairy-free month, he has found it has helped him a lot, so he now thinks he might struggle to digest dairy stuff (god, we're a right family, aren't we! )

dh was mildly interested in the chewy tablets - if he tries them I'll let you know

That site looks interesting. I've also had thoughts that maybe if they could digest food (generally) properly that it would help them all round. The combo ones look a good place to start.
Did you ever sit in science at school and think - one day i'm going to have to know all this - or research it? Me, i sat thinking - when is the bell going to go!

silverfrog just left my details with ESPA so they can send me details on the urine analysis. Thank you for making me feel more positive - and that there are things out there i can be doing to move this process along without the NHS dawdling. I had been feeling really hacked off this morning after another 'clean down' operation in the bedroom and not even a glimmer on the horizon of anything else being done to help him. Thank you. [you are a star emoticon}

oh, the things I never knew i would end up knowing about poo

I have:

been out (long term relationship) with someone who has Chrohn's disease.

dss had chronic constipation, and a stomach ulcer when younger

dh has had diverticulitis, and bowel disease, including having bowel surgery.

dd1 has had all manner of digestive issues since she was born.

dd2 following suit.

my world is one of poo, it would seem!

LOL -

On a serious note though, I do wonder whether if you have ongoing problems with digestion when you are younger, if it leads to further digestive complications when you're older. it's the same with SN as well, really isn't it. Early dx and treatment often leads to better outcomes.

Was tempted to get a laminated version of the Bristol chart and hang in the toilets so the kids could tell me their 'outcomes' without me having to check!

I would say that that makes sense (the ongoing problems leading to more serious stuff down the line)

the whole digestive system is so delicate, once you start reading into it, that it's a miracle any of us are still alive

seriously, though, dh reckons he'd never have had to have a bowel resection if his mum had known about his dairy intolerance (usual fobbing off with "it's toddler diarrhoea" for years, then dh started "coping")

but then again, his poor sleep habits, and long term smoking won't have sdone him any favours either!

but on the whole I reckon best to sort things as much as possible. I know dd1 is a lot less stressed if her bowels are on an even keel, as it were - she has a langugae delay so can't really tell me how she is feeling, but she is calmer and happier when she isn't having to hold it in all the time...

ooh - just seen your post re: ESPA. good stuff.

hope it helps (although I suppose if not, it's another thing eliminated, so maybe half a step closer to helping?)

iirc, the form they send you to fill in about poo habits is a lenghty one

but worth it in the end

I have always found them to be really helpful over email (i am averse to phones!) - they answer questions happily, and when we have had furhter family members tested they always try to put results in context, etc.

I'm kind of with your dh on this one. i know my mum tried when i was younger to sort out problems - and she fought my school tooth and nail over school dinners - i was made to eat ALL my dinner outside the headteachers office - everyday during the whole lunchbreak, and given the slipper if i didn't eat it. she had to get a consultants letter to explain why they did not want me to eat protein. even then they were not happy! I know it must be easier today - but i think it's a double edged sword. The more information we all have access to, the more we expect can be done. We also have a healthy 'disregard' for professionals that say there is nothing that they can do, they'll probably grow out of it. "coping" is not an answer, but in our generation, it was what was expected.

oh, i'm completely with you on that - coping is so not the answer.

MIL sadly, believed the doctors (not that dh blames her for this - different generation, etc etc)

what he does get narked bauot (and quite rightly) is that even now he is dairy free, she tries to sneak it i to foods - "oh, it's not really dairy" she says of a sauce made with butter, etc

I suppose she doesn't want to acknowledge it, because if it is true then it means she did him a great disservice growing up - but the information wasn't there, so she was not to blame.

but whenever we see them, she cooks all of dh's favourites (allcream and butter laden) with no allowances made at all

My friend, whose son is coeliac, has a MIL like that. She says 1 little cake won't hurt. My friend says - yes it will, 6 months to repair the damage caused to his stomach lining! I could never blame my mum. As you say, they did their best and it was a different generation. I only hope that i can get an answer for my lot, so that they don't end up thinking - bless her, she tried, but you didn't really get listened to in that generation?!!