Cautiously optimistic....

[Robinia]

Just wanted to share....

My son been very severe for a year now- he’s nearly 10 and in the past 12 months has had approx 11 hospital enemas (8 high and 3 low) 7 movicol disimpactions, 2 klean preps, over 20 visits to hospital for treatment, 8 months on omeprazole for gastritis caused by picasulphate, 8 months in nappies. He’s totally incontinent of bowel and suffers with daily pain from trapped wind and stuck poo. He’s part time at school and was actually talking about wanting to die for a while.

He’s under a paediatrician, paediatric gastroenterologist, continence nurse, school nurse and hospital psychologist.

We have had no progress in 12 months. I finally plucked up the courage to email a consultant at an entirely different hospital that I have heard is really good and I got a reply!!!

Been to the GP and he’s doing the referral. So so so happy I cried when I read the email from the consultant.

So.....just want to say to anyone out there who is feeling on the verge of tears due to the state of their child....

Don’t give up!! You aren’t alone and keep fighting until you find someone who is willing to help 🤗

Will post when we’ve been to new hospital 🤗

[Allyem1976]

AMAZING. Thankyou for posting this xxx

[SallyandPaul]

So so pleased for you both xx

[Laundrymaid]

Hey Robinia,

Sending you and your son (and your whole family) thoughts of strength and solidarity. Sounds like you are fighting a good fight!

Hang in there kid!

The Laundrymaidxx

[Lmd12]

That's fantastic news.i cannot believe they are letting him carry on like this xx

[Gemha]

Really great news for you all. Lovely to hear good news

[Frustratedmum1]

That's brillant news. Hang on in there. You are doing a brillant job.

[Jayjay-1]

Keep us posted !

[MariaJasmineFreeman]

This sounds really challenging. From a pediatrician’s perspective, it is crucial to search the cause of this health trouble.

In brief, If this severe obstipation is indeed a new-onset issue, acquired causes should be ruled out, like for example some sort of structural obstruction at the colonic level. At least starting with an ultrasound, most likely followed by an MRI of the abdomen and pelvis, would be needed. Also neurologic causes, ex. In the spinal area, affecting his intestinal peristaltic activity should be assessed; take an MRI of the lumbosacral spine. More, electrolyte and mineral imbalance( ex low serum potassium or high calcium) can be reflected in constipation. Of course, eating a healthy fibre rich diet is the basis for prevention whatever the primary cause.

If, on the other hand, your son has had constipation since long ago, say he had trouble passing stools since his neonatal period, a congenital anomaly- ex. Hirschprung’s disease should be eliminated.

Finally, remember that severe depression is a primary cause of constipation, and yet it could have set in secondarily and drifted your son into a vicious circle- especially with his mention of suicidal ideation which should be taken v seriously .

I hope your consultant would decipher the cause and generate an appropriate treatment, and I am ready to be kept posted.

Dr Hana Fayyad

( Maria Jasmine Freeman).

[Robinia in reply to MariaJasmineFreeman]

Thanks very much for your response. Will let you know how the apptmt goes assuming it goes ahead (🤞)