Knowing When It’s Time for an Esophagus Dilatation

An esophagus dilatation is one of the most common medical procedures an RDEB patient has done. Some can usually go several months between dilatations while others can go several years. Bianca’s first dilation was done back in May 2007. Symptoms were almost the same then as they are today but she wasn’t as expressive as she is now.

Our symptoms have been the following:
 ü  Food getting lodged
 ü  Constant running to the bathroom to spit out food
 ü  Esophageal spasms that last anywhere from ½ an hour to an hour
 ü  Saliva accumulating to the point where it thickens and can’t be swallowed
 ü  Waking up with a drenched pillow

This go around I observed several things:
 ü  Spending more than 30 minutes to drink 8 ounces of Boost
 ü  Not sitting down to have a full plate of food (according to her standards) in more than a week
 ü  Picking up her favorite fattening drink – Frappes and leaving them in the fridge ¾ full
 ü  Wounds that usually take 2-4 days to heal have surpassed the week mark (slowly turning from acute to        chronic wounds)
 ü  Waking up to gagging and spitting for more than 30 minutes
 ü  Struggles to eat foods that previously did not cause such issues like mashed potatoes, yogurt and                  spaghetti

I will admit it – I was in denial for a long time. Slowly transforming me into someone I did not like. We should have looked into this at least 3 months ago. Our relationship has become touch and go – the simple fact that she didn't eat throughout the day, the amount she should have to sustain herself, put me in total warrior mode. The invisible force I was fighting? The hideous beast that is EB! This turned me into a tiger mom! I have started flying off the handle and not watching my temper. This past Monday I took inventory of all that has been transpiring, including how the stress has expressed itself in physical form. Stomach pains, migraines, lethargic – this was the way I started to feel. Bianca has also become a bit more difficult – acting up in school and giving attitude to many around her. Of course with the lack of nutrition she has also not been able to focus 100% on her studies. Let’s not even mention how a wound that would have usually healed in a few days has taken more than one week to start healing. All this because the eating situation has slowly taken a negative turn for the worse – we were attempting to control something that truly was out of our control and it’s dark cloud was hovering over us for way too long. The last straw was when she could not even swallow her saliva. This is where we knew we needed to set up an emergency appointment with the pediatric surgeon. When all was set and done in less than 24 hours we had a game plan – do the barium swallow on March 24^th and have the esophageal dilation on April 4^th.

To understand what she is having done you can check out the following two videos:

  ü  Barium Swallow

ü  Esophageal Dilatation

This is a picture I shared on the wound that has taken way too long to heal

When all else fails and while we wait to have her scoped out and dilated we are enticing her with so many yummy things – the downfall? Mommy ends up caving in and having the high fat, sugar and calorie items as well…

And now we patiently wait another three weeks and pray that she will take enough calories - in any way possible - to sustain her until April 4. The answers we did get today is that she's still hitting the mark in the growth chart!

At 11 years and 6 months:

your child is 77 pounds, and that is
at the 26th percentile for weight.

your child is 54 inches, and that is
at the 7th percentile for height.