Am i the only parent who feels

[BITCAT]

depressed and doesnt know where to turn for help. Im having problems with school accussing me of allsorts and i feel at the moment like im being bullied. My kids are well fed, clean, clean house, clothes, in bed at night, not out all hours. My ds2 has suffered with chronic constipation since birth and no one seems to listen to me he is now 7 and no one will even check as to why he has these problems and he also has problems with behaviour and learning and has been delayed in everything since very little..very different to my 3 other children, they just seem to keep pointing finger at me and blaming me for his problems. I looked something up on internet and found a disease that was my son to a T and when i raised my concern no one listened, no one will test him for it and have read an article about an american couple who went through the same and was only when there son seriously ill something was done and he was found to have this disease. I have had him down the hospital several times with his tummy and lack of eating..he will literally not eat for days and even if he hungry he wont touch veg and fruit. Ive tried allsorts..hiding it..making faces etc..nothing works. I really feel like im going to slip of the edge of a cliff and am already on depressants/sleeping pills. Why wont theses people listen to me.

Bump

Actually BITCAT, I was just thinking... Why don't you try posting this in chat? Parenting can be very quiet..

Have you tried changing GPs or getting a second opinion?

Do you get help and support form a parter?

what's the disease you think he has?

its called hirshsprungs disease, they have it from birth.

have you asked yout gp to refer you to a specialist?

he has been under a specialist consultamt since he was 2..but no medical tests have ever been done just keep throwing medication at him that dont work because he still cannot get to the toilet and still does it in his pants. Thing is they havent even done anything as simple as an ultrasound to see whether there is anything going on.

BITCAT,we cross over here as I have replied on your other thread in health.

Im quite knowledgable on HD as ds was born with it.

IME,they are born with it and its usually diagnosed at birth usually due to the baby not producing merconium {sp}. Ds however was different and did poo but we since found out this is rare.
HD is were the ganglion nerve cells are missing so they don't have the ability to poo. Ds was short stem so only a small fraction of the lower bowel was affected.

Dd who was 18 months when ds was born was toilet trained in the usual manner but wasn';t the best with poo'ing. Luckily due to ds's history she was referred and monitored and is fine. In fact even ds's surgeon didn't suspect HD with dd. He said we would know.

He was right and dispite our worries she seems to be fine...

I have read however of a girl who wasn't diagnosed till her 20's so I wouldn't rule it out for your ds...

How is his tummy usually..?

He complains his tummy hurts a lot and eats very little but his rectum and tummy are so backed up with poo..that he just doesnt eat. He can go for days at a time with maybe a piece of toast. Because of the medication he has.called movicol it makes him leak poo out of his bottom but you never see him push his poo out. Thing is he went nearly a week before having a poo after birth. And has suffered with it ever since and it is gradually getting worse.

I know nothing about this disease, but going a week after birth without passing solids should have rung an alarm somewhere.
Have you approached your GP with this disease? I know that it is difficult and you don't want to be labelled with Munchausens by proxy, but your son needs help

You sound as if you're suffering a lot BITCAT. Have the school issues only just come up? Are they about ds2? do they feel like the last straw?

What support do you have - a partner, family nearby?

how is he managing in school with this problem?

is there a schol nurse who could help you?

I can't say if its HD as ds was diagnosed before things got bad but he did poo but loose and almost like leakage..

Hmm..sounds similar to how dd was. She had poo backed up so much that she also went over a week without poo'ing. She was and still is on movicol.

My experience of movicl is that its the best available to start with,I would give your ds the maximum dose and d it at a time when he needs to go or do nothing. Be prepared ...

dd took upto about 6 sachets before she finally went, movicol means they have no choice but to go.

Dd's poo was so old and backed up with what she passed was almost brick like.
She to also leaked poo, think of it like an over flow. The leakage is what can't be contained anymore. Its not the childs fault.

Also, to add. Your ds may be not eating much as his tummy is full of poo and he's uncomfortable with it.

Once the hard poo is passed it will be easier for your ds to go. Reduce the movicol slightly and do this for a few days. He should be able to go naturally and try and get him into the habbit iykwim.

It tok dd around a week after such an episode to get regular and now only has movicol when she hasn't been for a day-2 days.

Now.............your ds may have HD BUT you really need to see your gp and ask for a referral. IME HD displays itself with a distended tummy.

You really need to get medical advice and help. Prehaps if you are getting nowhere with the gp's then either change to another one or I wuld pay your local A&E a visit.

I so know how distressing and hard work it can be having a lo with bowel problem. Having gone through what we have with ds and then to have bowel issues with dd I have many a time been very low. Im lucky thought that I have the support (maybe not always medical support [hmm[) but dh has ben there when I needed to sound off.

Let me know how you get on and feel free to email me x

yeah thanks you all for your advice and support, my dp is supportive but he isnt ds dad. All my family live miles away..skool has been an issue for a while and ds2 has been on movicol since he was 2yo.and has not done much at all..he is now 7 and its not the gp thats the problem as he already sees a consultant..i think after 5 yrs of this that something needs to be done. School nurse..is useless and does nothing to help. I have mentioned this disease to consultant but he wont do anything because he believes it would have been found by now if he had it..but i have read numerous things on different websites where people in there teens are only just being diagnosed. Also some children can have it worse than others depending on how much of the bowel is missing the nerve cells..may only be a very small part at the end. I really am at the end of my tether and not to mention the impact its having on ds school life and the relationship with his siblings is suffering

yes, thats what I was saying about it being long or short stem HD. It may be that your ds has short stem so does poo but not regular and not with ease.

I would rearrange to see your consultant and request an xray (that would see what the bowel/colon loks like and if its enlarged) they can also do a barium to see the flow through the bowel and if the bowel narrows (usually where the gangleon cells are missing).

However a rectal biopsy would confirm one way or another what the situation is (although as I explained in the case of my friends ds who is just over 2, he has problems but nothing showed at the biopsy. This may because he doesn't have HD or it may be a tiny tiny bit at the end of the bowel..)

You really need though as yu said to get someone to see him.

xx

Whether or not your ds has a specific disease, he's been suffering with this for 5 years! does the consultant have any other ideas, any suggestions to get things moving (literally?) It does sound as if you would feel more able to tackle the school issues if your ds's health was on the up.

How did shhh's post sound? 6 packets of movicol sounds like a lot!!

lol at 6 packets of movicol...HONESTLY thats what it took ! In fact instead of passing the blockage during the day it was released at night while she was asleep..poor little thing must have been so relaxed and so relieved once it came out...

It was solid...

BUT once it was passed we reduced it down to 1 aday and then one every other day etc..

As choosyfloosy says,even if your ds has or had not got HD you must demand further help. x

Constipation is horrendous. Your son will need high doses of movical every day for months to get over it. Stopping or cutting down too soon is a common mistake. As others have said he isn't eating because his tummy is full. Treat the constipation and that will sort itself out. Hirschprungs is rare and even if diagnosed you will likely be in the same position so don't count on a diagnosis being the answer to everything. Most kids just have plain old constipation.

In many hospitals there are paediatric specialist outreach nurses that help support with constipation. It sounds like you need a proper chat with the paediatrician about the effect this has been having on your life and get a detailed plan for the future. Write down everything in a bullet-pointed list, make an appointment and take it with you. The treatment may be exactly the same but support and a plan you can discuss with your son may make all the difference.

How do people get in touch with the paed specialist nurses odisco? What if Bitcat rang the consultant's secretary and asked about the possibility of a referral to the nurse, to get things started before their next appointment?

possibly best to go via the consultant. See him/her and get referred on..

yea we have done the 6 packets of movicol but because he doesnt eat and because he is so small..it goes through him but..that is wat it takes and its just not good on a school day because he gets in such a mess and ends up with a sore bottom too. I would just like to rule things out and get the school to acknowledge that his problems are not my fault as they and the school nurse seem to keep doing. They 4get that i have 3 other children that are healthy and eat well. Not only that but i want the best for ds2 and really feel for him because it cant be much fun for him either. And im just constantly stressed..i think 5 yrs of medication is enough and it time investigations were done.

will post on your other thread x

I feel so much for you and your DS BITCAT. Don't give up xxx

Sounds like you need to go back to your GP and ask if it could be Hirsprungs disease. Take the info you found on the internet with you. Could you also ask for a second opinion at a different hospital (as is your right)? Could you afford private?

Graham Clayden at The Evelina Children's Hospital (St Thomas's Hospital in London) has an interest in constipation/soiling. Depending on where you live in the UK, you could request a second opinion there.

Constipation is common (my dd1 is on lactulose), and usually due to poor diet in the UK. It may just be that your son has a rare cause like Hirsprungs. When we went to the GP with dd1 her first question was did she poo after birth (our answer was yes though!). It may be that it has been missed for your son.

Unfortunately I don't think Hirsprungs can be diagnosed by ultrasound. Because its caused by a lack of nerve cells in the bowel wall, they may have to take a sample of the bowel wall using an endoscope to make the diagnosis.

Another difficulty is that when children have chronic constipation they get something called "overflow" where the liquid poo sort of leaks round the solid stuck poo at the bottom meaning that although they are constipated they also have uncontrollable diarhhoea at times. Where the bowel hasn't worked for a long time it can get "floppy" and stop working properly even if there is no Hirsprungs disease.

I hope this information is helpful to you. Let us know if they do find a cause or manage to help him.

I am not a doctor so I would double check with a professional before doing this but could your son eat prunes-pureed or drink prune juice aswell as taking movicaol. The prunes have a chemical in them that ease constipation. When dd was constipated the prunes really sorted her out. Not nearly as bad as your poor ds.
I really hope he gets well soon and please push for a referral. No wonder you are so down.