Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.

Tuesday, November 9, 2010

I Just Want to Take My Son to the Dentist

Nicholas and I see many physicians and specialists in an effort to manage his symptoms associated with PWS. Most of our specialists are located at Children's Hospital in Boston. A simple trip to the doctor for us, usually involves a long hellish car ride fighting the insane traffic in and out Boston.

Thankfully, our dentist is located in the next town, and visits here are much easier on us. I do not need to pack lunch and a snack for Nicholas. I do not need to bring toys and books and backpacks to help entertain him while we wait in the waiting room. Yes, visits to the dentist are much easier on us, that was until yesterday.

Children diagnosed with PWS tend to have thick saliva. Low muscle tone can cause them to breathe with their mouths open. These issues increase the potential for children with PWS to get cavities, and lots of them. Unfortunately, behavior issues make it very difficult for my son, Nick to sit calmly and quietly in the dentist chair. The noise, the sights, the sounds, the disruption to his schedule are all very difficult inputs for Nicholas to process.

Our recent visit to the orthodontist also confirms that Nick's teeth are starting to crowd. Since filling cavities can become a nightmare for children diagnosed with PWS, you can imagine what maintaining braces would entail.

Our wonderful, Orthodontist, Dr. Koglin, explained to me that to avoid putting braces on Nick, we would need to pull some of his teeth at the appropriate time. This would enable new teeth coming in to do so without crowding and the need for braces.

Now, for most kids, this procedure would take place in the dentist chair. Not so for Nicholas.

Since Nicholas will need to be put to sleep, this procedure will need to be completed in a hospital setting with a trained anesthesiologist. Breathing issues during sedation are common in children with low muscle tone. Nicholas also has trouble regulating his body temperature, this too will need to be monitored. His potential for seizures, another serious issue to monitor, as is his borderline Von willebrand's disease which makes his blood difficult to clot. An IV needs to be inserted in Nick's arm just in case DDAVP is needed to help his blood to clot. IV's are never easy to perform on Nicholas since his low muscle tone makes his veins roll. His last IV had to be placed in his ankle. Nice, huh?

This will be the 9th procedure Nicholas has endured in only his 8th year of life. Putting Nicholas to sleep is always a little scary for me. Dr. Koglin would like to perform this procedure in the summer. Great.

While our wonderful dentist, Dr. Lindi, removes his teeth during this procedure, she will also take x-rays, clean his teeth, seal them with a fluoride coating and fill any cavities. This hopefully, avoids having to come back to the hospital too soon.

To make matters worse, coordinating this procedure through our insurance companies is yet another difficult obstacle course filled with lethal land mines. Nick's last procedure had to be canceled the first time since one of our insurance companies did not feel it was "medically necessary". (Even though his physician, his dentist and his orthodontist all agreed!)

It is hard sometimes not to get angry since a simple dentist visit for Nicholas ends up being a complex surgery in a hospital setting after months of fighting with insurance companies who are indifferent.

I suppose most Mom's would think I'm crazy when I say I just want to take my son to the dentist!


The Henrys said...

That's a great picture!

Good luck dealing with the insurance companies. They love to make things so difficult don't they?

I know what you mean by just wanting to take your son to the dentist. I often say that I just want to be Gracie's mom, and not have to fight the non-stop battles.

Lisa said...

Thanks Deb,
I guess we are a red flag to insurance companies mostly because of Nick's nightly GH injections. The yearly total for this therapy is in the thousands of dollars! That's just GH, now add, doctors, specialists, procedures etc....yikes! Thanks again Deb for all your support. I so appreciate you!

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