worried about son.....he has bowel dismobility and now yet more new symptoms......(warning...quite graphic...sorry[blush])

[psychomum5]

My DS2 has recently been diagnosed with bowel dismobility and is currently on senna laxative to try and regulate him.

He was born with severe gastro-esophical reflux disease and has always had tummy probs, mainly to do with bloating (his tummy is severely distended and he now also has rib flare from his ribs constantly being pushed out by the bloating). In fact, he often is likened to the ethiopian(sp??) children you see on the news, as his legs and bum are also quite thin. He is currently in sz 1-1 1/2 pants even tho he is 4yr as his bum is so small.....also in size 1 - 1 1/2 shorts, and 9 - 12mth swimming trunks (just to give you an idea of how small he is..)!!

He has (after months of fighting with Dr Black at Poole hospital) finally been referred to Dr Beattie at Southampton, and it was there friday 7th july that they diagnosed said bowel prob.....but they don't as yet knowwhat is causing it.

Thought at the mo are ceoliac disease or maybe crohns???

his symptoms are...

Bloating
severe tummy pain
awful constipation leading to horrific explosions from his bum that will cover himself and clothes and floor and me!!!
mucus in his pooh
very offensive wind (loud too!)
and odd temps too, sometimes 39c, jsut before he has a pooh, along with going clammy.

He has had xrays which show that his bowel is abnormal inside size wise, as tho it has been stretched in parts, along with an abnormal amount of air.

They have put him on senna to try to get him into a regular pattern as opposed to constipation. normal (for a day or two), explosive diarrhoea (sp?) and then normal for another day or two and then back to constipated. And the colour...well.....horrid is not the word[].

Thing is, since being on senna, he is worse....well, in two weeks he has exploded up to 4 x a day, and is now passing lumps of mucus....he has also got a rock hard tummy that feels as tho it is burning.

I don't know what to do???

He is to be on this until 25th sept. He was supposed to be on 10mls a day, but the first few days of that led to awful nights and covering everything (and I do mean everything), so I put it down to 5mls. He is now going like I said 4 x a day, and surely as you can appreciate, the amount of fluid he is losing is a lot (luckily he will drink lots of water) and I am giving lots of home made ice lollies too, made from apple juice...but I still am conserned about amount.

He is also having about 10mils calpol a day too to help with the tummy pain.

friend tonight came round whose son has crohns, and she is horrified at how he is.....says he should be in hospital.

I am now scared and worried that by giving him the senna I am harming him in some way (I have actually not given it him tonight so we all have a break from it, and also in hope that he gts a full nights sleep as he clearly needs it).

What do I do tho???? I don't have a number for the consultant, and I know that they have already double booked me over someone else for the september appointment as the nurse who booked it complain about it to me at the time, and queried ME why. I am at a loss for the next step......I don't want to stop it completely, but then I don't want him this poorly either for the next 2months. He is also due to be starting reception in september, and right now with the fact that he is also soiling himself again I think it unfair on him, let alone the teachers (and can you imagine the trauma should he have an accidant of the type we had today in front of a class of kiddies). He is only jsut four anyway (last wednesday) so I have been reluctant as he will be one of the 'babys' anyhow....and now this.

I don't know.......this is long, so if you have read this long than thankyou lots. I jsut need someone to tell me waht to do......I don't want him in hosptial (apart for anything else I have the other 4 to think about too), but he can't go on like this.....he will start to lose what little weight he has anyway (he is only 28lb now).

HELP......(please)

I cannot help really but wanted to bump this for you.

A friend of mine's little girl was diagnosed with chrons just as she turned 4, but not before the gp had tried to treat her unsuccessfully for an upset stomach for months!.
She should have made a fuss sooner-I would advise you to pester your gp/consultant if you have to.
good luck

thanks for the bump

I do in fact have an app. with Dr black on weds, but as she is the one who has been ignoring said symptoms for so long (she has been my paediatrition with ALL my kiddies as they all have health probs), and she annoys the hell out of me too, I am wanting to go with some type of game plan of questions otherwise she turns me into a gibbering wreck.

I am not making sense here even to myself, so good luck to you readers......but after what my friend said today I am scared.

PsychoMum -sorry, no relevant knowlwdge at all - just wanted to say poor yu and poor ds, it sounds extremely distressing.

It sounds a bit like diverticulosis (?) which a friend had. Have they done blood tests to establish whether there is a chronic infection? (the temperature). I know nothing, but instinctively it sounds odd to give him senna before any cause is established.

With sudden new symptoms, I think I would be tempted to take him to a&e.

I really hope it gets sorted out v soon, Psychomum.

Psychomum... Bloating can also be related to glutten allergy. Mocus on faeces is also present in allergy cases. But, considering what we have been talking about in the allergies topic I supose you already know that so, this is just a bump to keep the thread in active conversations.

Bump it in the morning, there are many mums who post in the special needs topic that have lots of experience with Crohns and Coeliac disease.

Hi there, I'm not sure if I can help but have had some very similar experiences with my son.
My ds was born with a hole in his bowel and this led to other complications which also led to dismobility of the bowel once he was on solids. Our lad was investigated for coeliacs and was gluten free for several months while they ummed and ahhed over the test results. He is cows milk protein intolerant as well. Anyway we were put on a dreadful combination of lactulose and coloxil as well as iron supplements as he was anaemic (from not eating as he was so bloated and uncomfortable) which resulted in consitipation interspersed with explosions and a very unhappy lad. He ended up having three suppositories and two enemas and has started to make some recovery of "normalish" bowel patterns.
He still has tummy distention which is measured through hospital paeds every three months, discomfort and is pooh phobic (will hold on and then have great difficulty with being cleaned up once he has gone) He still has mucus present in his stools and has at times also had blood which is no longer present.

Im not sure what to suggest for you but wanted yuou to know that we are going through similar things here and I just try to play by ear the medication and stop every now and then to let him recover a bit and to help teach his bowel to do things for itself. Also my ds is only 22mths so not as old as your lo, but dropped through the centile charts like a lead balloon once on solids and has only started to even out now (not yet gaining significantly but not losing either which is great for us! so as a consequence is tiny also)

All I can suggest is keep taking him to paeds, try to ask around and go private and get different opinoions but keep fighting to get them to take you and your concerns seriously.

Does Julie not have some sort of emergency number you can swipe?

I'd try to contact simon murch, I know parents who have seen him and found him very thorough. I think he's one of the best peadiatric gastroenterologists in the country. I'm not sure where he is now, although I do know he's in the UK!

I'm sorry I can't help with any experience with either Crohns or coeliac's but I just wanted to say i used to use apple juice to help my DS with constipation - I'm not sure if that's why you are giving him apple juice lollies or if that's just what you make them out of. sorry if I've missed the point here.

But either way good luck and keep fighting, hoping that you get something resolved very soon for your poor DS and you, must be so horrid for you both.

Oh physchomum5 poor you and poor DS2

I know what you mean about the 'power' some doctors seem to have over us as parents when we sit in that consulting room. But, your DS cannot go on like this. So, before the appt write down all the things you want to say or discuss. Do it is short bullet point form (eg explosive nights, distresing, disturbing whole family, cant carry on like it etc etc), put everything down, then take it with you. And make sure you read/discuss it all. Sometimes doctors just cant see the bigger picture and the consequences of it.

I cant offer any constructive advice re the diagnosis/symptoms I'm afriad. Both my DSs have had bowel/gastric problems (although different to yours) so I can sympathise with you about needing to get to the bottom of this. Dont give up though. Keep pestering them. Ring the hospital (get the direct line of the secretary), email, write, do whatever you need to.

Good luck tomorrow. Let us know how you all get on. naswm x

One of my first cousins developed Crohn's at the age of 3, so it is possible.

Hope you get some answers, psycho.

Poor ds2 psychomum. And poor you . He really needs this sorting doesn't he?

Ring the consultant through the switchboard as the others have suggested. There's no reason that they shouldn't be able to fit you in at his next clinic as he's so bad. The dehydration is a worry in this heat.

I would write down what's happened over the last few days - take it tomorrow and be strong, tell her that you won't allow this to go on any longer and you would like her to back you in getting him seen again by the bowel cons asap.

My son was diagnosed with coeliac disease aged 22 months and was in appearance very similar to your son. He also suffered terribly badly with trapped wind etc but had the opposite problem to constipation!

Initial diagnosis of CD can be made with a blood test - they then often like to do a biopsy to confirm.

Personally I'd ring the consultant / secretary, explain the situation and say you feel the senna is making him worse, he cannot tolerate losing any more weight and you are stopping the senna until you can see the consultant again.

We had to badger our paed to run blood tests and although initially daunted by the diagnosis, were so relieved to find out what was wrong and that it could be treated so easily.

HTH and best of luck. It's horrible watching your child deteriorate before your eyes like this while you battle with health professionals to do something to help him.

I would firstly do what SueW suggested re ringing the consultant.

A friend's little boy had a similar thing and started school (they did loads of tests on him - initially they thought it was one of those bugs you pick up in pools (will look up the name for you) that hangs around and causes problems) but every test they did came back negative (even the coeliac one) but eventually they saw a top gastro bloke who said stop all gluten and see what happens. THey did that for 6 months - it let his bowel recover and now slowly but surely they are reintroducing it.

It was hard for them because he had to go to school with a full change of clothes in case he had a nasty bowel movement and he used to spend a lot of time on the loo

What other tests have they done?

so many have responded....thankyou all so much.

Well, we have had a better night (not that I did....still awake at 4am tossing and turning, but he slept), but he has this morning woken to tears again and still feeling hot, altho temp says normal. He still smells foul, altho I realise he will still have the senna in his system anyway so not overly concerned. He is very clingy today tho already and only now have a got the time to sit and read. He is eating jelly....

answer to some of you Q's (sorry but not sure who has asked what so will lump together.

He has had many bloods......liver enzymes were up for a long time as a baby (he went yellow, but it wasn't due to jaundice). They are still raised, but Dr. Black has never explained the significance (if there is any???)
Ceoliac has been tested for but each test so far neg....my own GP tho has said that he needs to have a lot of gluten in his diet for that to work, and as he is naturally selective in what he eats, I am not convinced he does, and nor are they.
He has had skin prick allergy....they started of reacting to eggs, wheat, cows mik (he is on prejomin formula still for his milk needs and due to our worries over weight has up to 3 bottles a day even now!), and nuts. None were big enough tho for them to say were a positive. the nurse tho said that those tests aren't foolproof tho so can't really trust them (why do them then???).
He has had xrays...results posted.
he has followed a gluten free diet for some months, but as he then refused all foods and went up to over 6 bottles a day we decided that weight was more important and allowed him to eat (this was up to last december).
his centile charts are poor.....at one point he dropped off completely and when very tiny stayed at 10lb from wks 8 - 20 . The amount of people asking if he was prem was huge (he was 7lb 14oz at birth). He is now on the 9 centile line so is a huge improvemment (altho not good, but he is at least not losing[as yet!]).

ermmmm.....I think that is it for now....will go and print this off tho so I can take tomorrow to show his paed.....and then try to get hold of Dr Beattie too. I like the suggestion of asking for a short notice appointment (thanks for that). Or even go and wait....with five I am sure they will gt to me fairly prompt !

thankyou all again...

Feel free to take B to wait too

then they would see me double quick if she and J did what they did last time with that evil child there too!!!

so you are now seeing the new doctor (Dr Beattie) rather than Dr Black? I would ask Dr Beattie about the liver tests and see what he says.

I looked up the stuff they tested my friend's son for (cryptosporidium and giardia) but his bowel problems only really developed when he was a toddler (he had problems as a baby but the bowel issue only really surfaced later) so his circumstances were different.

I really would beg and plead for an appointment - it's not fair of them to let him start school when he is obviously suffering

Yes....well.....I have always been under Dr Black (since DD2 was tiny and had her immune deficiancy diagnosed and she is now 10yrs), but she is....shall I say......>.

In fact, whenever I have asked for second oppinions she has literally shaken as tho she can't quite believe I dare question her judgement. If I went thro everything she has said/done/not done over the years regarding all my kiddies you would be horrified, but unfortunately once you have a paed, you are stuck with them unless you move or kick off, and seeing as my kiddies are regulars at the hospital I am reluctant to make said fuss for repercussions etc!!!

The only reason we were refered was because Dr Black gave me to someone else at his last appointment (as I had actually comlained about her so she gave a one of her 'minions'), altho it did work in my favour for once as said 'minion' referred me. It seems tho that Dr. Black still has claws in as I now have appointment (which admittedly confused me), but I am keeping it for

1 - so I can tell her what Dr Beattie has said and do a 'told you he had a problem grin' (IYGWIM??)
2 - now to ask whether said mucous is normal and to check his weight etc since last time to see if he is actually losing (re my intuition.)
3 - to get them to check his dehydration level.
4 - see if his latest blood are in, as I am wondering if that is the reason (????).

Hope you understand this....and yes....I really should find out more with regards his liver and if it is still raised and what, if anything, it means.

poor you - let us know how it goes.

got to say-i think i would be tempted to take him up to a&e and do a " this child is ill, and i can't cope anymore.somebody please help us".rant.
if he is presenting with a fever and other symptoms they would have to do something.
poor little mite sounds like he is really suffering-how dare they not treat this more seriously?!

will do, thankyou.

It is just so upsetting that we seem to be going backwards with regards to toiletry habits etc. I know it isn't his fault in any way but the fact that he is soiling himself is upsetting all round.

In fact, yesterday when he did his worst my DH had just got home and so I asked for help. (he was so obviously bad that I knew he would need a shower....and he doesn't like the shower so any help is needed and gratefully recieved).

problem was....I then had to clean up DH as it was so bad he ran out of the bathroom and threw up!!!! I guess that shows how bad it was....even the other week in the middle of the night when we both had to deal (and that was the time it covered everything), DH didn't throw up.....(and I was covered then too, and also needed a shower).

Last night made it the last straw really for asking for other peoples advice as opposed to dealing with it alone (as I see from here that I am so very NOT alone in having problems with kiddies/husbands/families etc!)

alexmum.....my GP is fab actually and very understanding. In fact...he has tried many times to get around the 'Dr black won't refer me, please can you help', even tho he still did find his hands tied too. He has always been very sympethetic. I am wondering whether he should be my next stop...now that I AM under another paed too, he may be the one to help push something.....do you reckon????

God, yes, I have answered my own Q there really.....why oh why do we tuen to gibbering wrecks when our kiddies are the ones we should fight like lions for

right have just been googling the southampton hosp website-not very informative is it?
i would phone the switchboard and ask to put through to his/her secretary.if she won't put you through to the doc then tell her to het the paed to phone you asap as you are very worried.i would bug them and bug them.
he can't wait until september in this stae.

sorrry i sound all bossy and uppity.i am so [angry ]ant their attitude

Psychomum - have they comsidered something like hirschsprungs? Not sure how that presents on x-ray. Maybe you will see another minion tomorrow and they'll take some action.