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)

oh no....poor catj, and poor little lady. Chest infections are bad enough without it being heart probs too.

UPDATE

have spoken to hospital....not Dr Beattie, but Dr Phillips who I have spoken to before.

He is not needing admitting today

He is however to stop the meds and see Dr Black tomorrow and check his weight and hydration and maybe think again, but they hope not to need to anyway.

Thoughts are that he has had a reaction to the senna, and that stopping it will allow his body to return to his 'normal', and then see us in september to discuss other tests. However, should he get worse ot even not be any better by next monday (bearing in mind I stopped his meds myself yesterday), then I am to ring again and they may fit him in/admitt if serious.

His bloods are good tho.....no allergy reaction (altho that still just means that he might just be 'intolerant' instead.)
No coeliac reaction, but that we expected as his diet is still so poor.
No markers for crohns

Liver still raised (but they still unsure on significance, if any.)
He is however, anaemic......they are sending info on food and diet, am getting a supplement prescribed, and will test again in case there is something significant on that!!!!

BUT

Should he keep spiking temps and keep the explosions up for the next few days then a trip to GP to rule out possible infection will be in order, as that could be a possible. Problem is, I know from past experience, it is VERY hard to tell with him as he is similar both ways. The only way normally to tell is by him being sick, which he isn't at the moment.

All in all tho....I am happy and relieved with what has transpired today. He isn't in dire need of medical attention, and assuming that stopping the senna works then he won't have a ruined summer.
We just have to hope that Dr Black takes notice of fears and responds properly......not holding hopes out there tho!!
Unless of course he has lost wieght then we will of course be thinking of another way round.

Now asking for help with getting a poor eater to get over being anaemic[help emoticon].

oooh....and didn't thank you all for being so wonderful and supportive today. Has helped immensly seeing just how much 'invisible' people can make a difference to coping stratergies(??).

I would most certainly have scared the kiddies today with the tears...instead was able to hide it from them by being here with the tears while they were paddling pool-ing

Soooooo.....you have all been wonderful......thankyou ALL so very very much!!!

so what foods does he like then?
is he 'burger' type child ? in which case you can make them yourself and then he is getting the red meat-or just red meat if he will eat that.

green leafy veg-if he won't just eat it then blending it into other things to disguise it.

great news that he doesn't have to go in.and so thankful that they are taking notice.
don't let this bloody woman tomorrow give you any shit.be uber strong!!!!!!!!

am getting all hyped up for the 'uberstrong' mum....shame my psychomum image doesn't come true where SHE is concerned tho.

Now for food.....he will not eat meat well.
About the only thing he has lived on the pass few days is his bottles and ice lollies, and some fruit too (and I know that won't have done his bum much good, but it was another way of fluids staying up).

Maybe tho, should I be as good as I would LOVE to be, I could try some nomemade burgers. I don't know how to tho, as the last time I tried they fell apart. He does eat a mcdonalds burger without the bun if we have been out and desperate (before I get jumped on....yes I do go to macdonanlds....they are the one and only place that isn't helll for allergic families that is in my budget range!).

That means he may eat a homemade burger....if I make it appetising!!!

I know tho that plain choc is good....that is one fight won.

green veg.....he did start to eat broccoli (after I told him they were mini tree's), but won't again at the mo.....). Maybe I could puree some and add to something....how tho???and what????

what else (please bear in mind I have to avoid milk so it has to be ok to add soya milk to (and soya milk isn't great with cooking!).

whizz up the broccolli and mix with the mince to make a burger. mix the mince with a little egg and some breadcrumbs( you can just grate his gluten free bread) and then fry.i find they stay together better if you fry it.you don't need to worry about the fat content i presume because he needs the calories.

try to picture her going to the loo-or having sex!

pmsl at the loo comment and the sex....god should I do that then I will be pissing myself in front of her, not being 'stern'!!!!

And thanks for the burger tip.....yes, he does need the calories as he isn't gaining weight like he should, so it will all help

any other things I can try? sorry to ask, but I am bad at fooding with new ideas and trying to push iron

Glad to see there has been a positive outcome for you today

yes....thankyou

feeling lots calmer tonight, altho am still dreading tomorrow seeing Dr black tho.

Am psyching myself up tho.....uberstrong me on her way!

DS2 is happier going to bed tonight again.....and even had a pooh before that didn't 'explode'.....cue a huge grin all round, and much cheering from him as he made it to the toilet too (the worst thing for him as he is so fastidious(sp?) about his toilet habits. He HATES the fact that he soils himself.)

And I am pleased also that I am gonna get a full night sleep again....well, kind of. Am suffering from imsomnia at the moment

Hi psychomum, me again...
Re Hirshsprungs if this was a possibitity they will test by performing a biopsy of his bowel to test if there are missing nerves in it (ds didnt pass meconium either and it was one of the first things they tested for) Re the appetite and aneamia we are also on the same page as you with these as my ds also doesnt cope well with meat and although is hugely improved now he didnt eat (they say children wont starve themselves well mine did because his bowel was so swallen and backed up that he just couldnt face food. Really for us the enemas and suppositories and clearing him out in hospital was the start to improvement. He became more interested in food and we battled with keeping iron levels up while trying not to constipate him which was a nightmare. He has slowly increased what he will eat and has now managed to go onto meat as well.

I tried very tiny meatballs with more sauce than meat (they were smaller than marbles to start with)
Cold meats from the nite before cut up and put on little toothpicks as he liked the novelty factor
Loads of dipping sauces
Adding molasses to things he would eat
Getting fortified versions of everything I could find including rice milk (dairy intolerant0
I was quite strict about offering food and if he didnt eat then he waited until the next meal but at the same time offering around 6-7 small meals a day as he could only manage to digest small amounts. Is he old enough to explain about how important meat is and why you want him to have it?
Also we massage our ds as his bowel is still not contracting the way a normal bowel would and so we massage in a clockwise direction to help move the food and stools through manually. We have also been told by our hospital paediatrics about later on when he is older getting him to do clenching excercises to strengthen his scphinter (sp?) muscle. We try to avoid very gassy foods as wind does get trapped easily for our son and he has trouble with pain and discomfort from this as well. We also try to make sure meat is not too much effort so when we make meatballs I actually put the meat mince into the food processor and mouli it so it is mush, this gives his digestive system less to cope with is my hope as it is already broken down so much. Sorry this is long, keep at them and make like an angry mama as it is the only way to get taken seriously at times.

Crikey psychomum (and you ym)- I thought my dd's diet was restricted - your sounds like a nightmare.

Dd was FTT and was tube fed for some-time, but all the stuff we used to do for extra calories - cheese, double cream etc, it looks like you have to avoid so I can't help.

Hope things are a bit better today is his temp down?

Good luck - give 'em hell!

gibbering wreck here this morning.....

I am sure when I get there then I'll be ok again (I am sure, I AM SURE),

DS2 slept well all night (I didn't, but hey ho..), and woke early coming down without me. (good sign that....means he woke pain free)
He has now just had a bath and is sitting naked and cool right now in the lounge (while the others are upstairs tiddying the rooms they had a fight in last night!!!

No temp.....fab, and feels cool too as yesterday he had no temp but felt hot (IYSWIM).

We will be attempting breakie shortly altho he is, as yet, not wanting. May end up being a bottle instead, yet again .

Thankyou yawningmonster for the meatball tip.....went out and bought to huge packs of steak mince last night in preperation for burger making, but am gonna wait till after hospital as I know me.....most will be thrown in temper over not getting it right (my temper that is!!).
Luckily my DS doesn't sound as severe as yours, but the eating habits aren't quite so bad. well, I tend to ignore in fact (so as to kep us all stress-free) and he is the youngest of five so am now wondering if I miss how little he eats at times. certainly yesterday all he ate was one bowl of cereal in the morning, a soya dessert, 2 0r 3 bottles of his milk (not sure as I know the girls will make him a bottle if he keeps on. I made him two), and then he was offered noodles for tea as his appetite was down yet he didn't eat more than a few mouthfuls.
Oh, he had jelly and lots ice lollies too, but no fruit as his tummy hurt and I feared the fruit acid would make it worse.

Going on that its no wonder he is feeling lighter at the moment.

I love the idea of cocktail sticks for putting meat on....was the way he ate grapes and cherries the other day (for a novelty as he'll eat them anyway)....never thought of it for getting him to try new things tho. And dipping sauces too....lovely messy idea I know he will love. maybe I can add some pureed veg to the dips too....

thankyou lots.....and you too saggarmaker...i know he has to avoid high cal dairy food, but the comment has made me wonder about getting him some high cal juices again as he has had those in the past, and I had forgotten. Even if they are there for emergancies only!

Anyhoo.....off to psych up more

will let you know how responsive (or otherwise) she is

UPDATE UPDATE

Have been to see the paed at poole, and I think it went well.....80% my way in fact!

have only just seen this - how excellent that they appear to be listening to you! Don't lose all hope re the nutritionist/dietician - we saw a fabulous one at the hosp for dd and she came up with loads of good ideas. I'm sure there are good ones and bad ones but you never know, you may get a great one!

Well done you - don't know how you found the energy to do all you've done!

I am still high in fact with how it went. DH is pleased too.....and proud of me being strong.

he too has issues with dr black, and wishes he was able to come to appointmants with me, but when you have a busy life that isn't always possible is it???

hey ho.....we are in a much better place than on monday night and Jacob is happier (no, actually he has turned into a squeaky mouse but that is abother story). now just got to hope that we get somewhere in september, and that him starting school goes well.

thankyou all again you lovely ladies....tis times like this that you realise than MN has some wonderful advantages. also too addictive according to DH, but there you go

Glad to hear you have made some progress on that. Please keep us informed about how things go.

[whispers] P.S. I followed your advice and DH brought my breakfast to bed this morning -

chandra.....thats fab. Did he too forget your anniversary then? or did he know you had and wanted to try to make you feel guilty??

Ahhh....what the hell.....doesn't matter.....you had breakfast in BED!!!!

Obviously he had! had a quick word with him before he took the plane back and he even manage to get a box of chocolates and a little gift before boarding!

just read your update psycho and so pleased that things seem to be going a bit better. Thank goodness they are taking your concerns seriously.