Underlying Genetic Syndrome?
Hi everyone,
I'm looking for other parents who may have gone through something similar because lately I've been feeling very alone.
I'm overwhelmed by the lack of answers and keep finding myself endlessly Googling everything.
My son is 22 months old and has several medical conditions. He has hypotonia, severe hydronephrosis (he's scheduled for kidney surgery next week), had surgery for an undescended testicle when he was one year old, and also has hemihypotrophy/hemihypertrophy affecting his left side.
His left leg is shorter, his left foot is smaller, and he has problems with his left hip. Basically, everything on his left side is affected.
Because of the poor public healthcare system in our country, we didn't get the full picture early on. Instead, we've had to piece everything together over time. It all started when he was 11 months old with the hypotonia diagnosis, and the most recent discovery was his kidney problem.
We're currently waiting for the results of genetic testing, as his doctors are trying to determine whether all of these findings could be part of an underlying genetic syndrome.
I'm wondering if anyone has a child with a similar combination of conditions, or if these kinds of findings ended up being connected by an underlying diagnosis. We've had various tests done, but we're still searching for answers.
I'd really appreciate hearing from anyone who has gone through something similar, even if your child's situation isn't exactly the same.
Right now, I just feel very alone in all of this...