Achalasia in my child
Posted , 9 users are following.
My son was seriously ill in 2014 and ended up in a wheelchair and tube feed. He was 8 but wearing age 4-5 clothes. It went on for months before the correct diagnosis and he was wrongly treated for various other conditions along the way. He lost half his body weight. Thankfully he had the dilation surgery and a course of strong antibiotics to clear his lungs. He has since had another dilation , today he told me that it feels like it is coming back, I'm totally heartbroken for him as he dreads more surgery and it just doesn't seem to last long after. Are there any other parents with children suffering from this awful condition. I would love to have contact with someone who understands as its so rare in children. Thank you 😊
2 likes, 21 replies
Myachalasia alison24649
Posted
Here someone who might understand you. Im so sorry for you that this is happening to your son! This disease sucks big time and as a parent makes you feel so powerless...Â
My son just turned 7 and was diagnosed with achalasia when he was 6.
He has had 2 dilatations but those didn't give him any relieve. So, since he was diagnosed he has a nose tube. Because of that he regained a normal weight again.
This thursday we're going to the hospital for a heller myotomy. I live in Holland, the POEM treatment is only possible here from the age of 16. If that weren't the case I think I would have preferred the POEM instead of the HM.
Very hopefull that the heller myotomy will help my son. Nerve-racking!!!!
Â
alison24649 Myachalasia
Posted
Dodoman7642 alison24649
Posted
I hope they find a cure not for me but for children facing a life time of this is unthinkable so sad. :-(.
AlanJM Dodoman7642
Posted
Dodoman7642 alison24649
Posted
AlanJM Dodoman7642
Posted