Well right after his 4th bday he started w/ a minor wet cough. Pooping started to slow, maybe because of the mucous. Then just in time for Xmas his pooping stopped. We had to irrigate the day after Xmas and start him on senna. The irrigation was very hard but I got him clean and then for two days the senna worked to keep him close to empty…although the belly was very loud and rumbly. Then poop stopped again and more irrigations had to happen. They are so so so difficult now. As he gets older he tries to bargain w/ me so I will stop ‘hurting him so much’. It breaks our heart, it breaks our heart, it breaks our heart.
So we know our surgeon will suggest another round of Botox. Of course we dont want him to go under anesthesia AGAIN (this will be the 5th time), but we can only sustain these irrigaitons for very short periods of time. I think we might try the Cincinnati Children’s enema as that MIGHT be quicker, but still an hour plus, but the saline adminstration + waiting time should only be 15-20 min I think…..don’t know.
Also was thinking of having his stool tested to see if abx or anti fungals might help (they have helped in the past). He was just on arythromicin for his cough (that had tunred into full blown cough/cold./fever and Ella had pneumonia so JC went on abx too) but it did not help his stool pattern. He also has two toes w/ a fungal issue and I wonder if his gut is suffering as well????? Also emailing ped about taking both kids to see psychologist. Worried that the stress of the irrigations is doing damage to their delicate psyche… do any HD parents have any thoughts on this????
praying for some relief for our little man.
thanks for reading!