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The long story behind my sons constapation.

(11 Posts)
Rilry2311 Thu 21-Feb-19 17:38:16

Hi, my son is now 5 years of age. When he was one started noticing he was in so much pain opening his bowels, he would go longer than a week!! I told all docs he was under it wasnt normal constapation due to the amount of meds he was on and how much pain he was in. Finally after serval admissions in arrowe park and alder hey for poo to be removed, took them 4 long painful years to finally diagnose riley with a thickened muscle in his bum, after me pushing for tests for years. He has botox injections oct 2018, which later on seen his surgeron and has stopped it because hasnt worked for him. He now has to have an emena every 3 days which i have to do at home its so hard and emontional for him, i dont like the restrainig but he needs it. His also has to attend bladder training in urogly because he was left so constapiated for so long. Im annoyed and exshauted never mind how my son feels. Was wondering if anyone knows if he would be able to get DLA? Have to change him loads in the day time and even in the night, as well as hold my child down and put medication up his bottom every 3 days sad he also has contince pads prescirbed by his nurse butin all fairness thats more for protection from overflow. Hes scared to use the toilet terrified, so he does his bissuness in a nappy still. Long road and so tired of it all
Anyone been through anything similar?

GallicosCats Thu 21-Feb-19 18:11:24

I really sympathise as I have a DC who has had some bowel issues (mostly anxiety related I think). Perhaps you could try posting in the Children's health and Special needs boards as there may be more parents with knowledge of the issues?

umberellaonesie Thu 21-Feb-19 18:16:21

Yes apply for DLA contact your local carers centre for help with the form

tattooq Thu 21-Feb-19 18:19:08

Oh OP that sounds so tough, I'm afraid I haven't got much advice, but just wanted to say you're doing amazingly pushing for what your son needs flowers

Heratnumber7 Thu 21-Feb-19 18:21:53

If it reassures you, I don't poo much. Once a week is normal for me - I have been longer.
I've managed to reach the grand old age of 60 with no obvious problems.

Rilry2311 Thu 21-Feb-19 18:35:08

He is under genetic testing as he has heart defects to and his dad has noonans syndrome which he has no problems with his bowels judt heart surgies. Its crazy, but my sons heart is stable at mo hes on 5 month scans.
Im more concerned over his bowels and just wondered if he would get accpeted for it x

Golden0ldie Thu 21-Feb-19 20:05:09

Yes, apply for DLA, document absolutely everything you do. I believe CAB can help. If you are up with him during the night, make sure you document that in detail.. it may get you a higher rate. Get letters from his consultants, GP, cardiology if he is under them. Also, if he is awarded DLA you may be eligible to claim Carers Allowance, depending on your own income and circumstances.

Poor little lad and poor you too.

smurfy2015 Sat 23-Feb-19 08:00:32

Yes definitely apply, going by the basis that this is not something which is a general part of care of your child at 5 years of age, for a very young baby it is normal to need to meet their every need (changing, feeding, winding, soothing etc) he is at the age where this is not the norm for his age group and as a result needs specialist help and extra care from you as a result of his problems

www.gov.uk/disability-living-allowance-children/eligibility

smurfy2015 Sat 23-Feb-19 08:10:53

Also I thoroughly sympathise with you and him, as a 8/9 year who was having a lot of tummy pain which was coming from constipation after investigations if was found I had the back passage of a 3/4 year old so couldnt pass at all.

They tried manual evac as an intervention and I screamed blue murder alternate days when the poo nurse arrived when they gave up on that.

They went the surgical option, I was admitted to hospital and operated on the next day, they basically stretched my back passage to the point it could let poo pass before I was discharged I had to do a poo, I sat on loo crying as was expecting pain, none came.

The other option before that was at home dilators but with the struggles with the poo nurse and that it would still need to happen, alongside that, it was decided not to go that option as too distressing for me.

Then twice a year till I was 18 I was checked to make sure it was still ok for me, the procedure had kicked whatever the reason was it didnt grow with me into normal mode

Fast forward many years later till late 30s before my next problems bowel wise, I now have incontinence with frequent BMs out of my control and leaks but this is not a side effect of the earlier procedure, its due to broken nerve signals and neurological disorders.

Hugs to both of you

FamilyOfAliens Sat 23-Feb-19 08:14:11

OP, you realise you’ve put your son’s name in your opening post?

troubleswillbeoutofsight Sat 23-Feb-19 08:28:24

Yes definitely apply. His needs are much greater than a child of his age

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