Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, 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, May 29, 2012

Tooth Pain

Children diagnosed with PWS often suffer from significant dental issues. Symptoms like thick saliva and mouth breathing, caused by low muscle tone, increase the likelihood for developing cavities.

Parents must encourage brushing vigilance with frequent visits to a pediatric dentist, a must.

As with all things PWS, this is easier said than done.

For many years, I visited countless local dentists, hoping to find a professional who could handle the sensory and behavioral challenges that plague my son. None felt comfortable and I was referred, as usual, to Children's Hospital in Boston.

But this was not practical since we live several miles north of the city.

Finally after many discussions with local mothers, I found a pediatric dentist who was willing to take on the challenge of working patiently with Nicholas.

Her name is Dr. Lindi Ezekowitz and she is one of the many professionals in our lives who we have come to love. To read more about her, click here.

Dr.Lindi has worked successfully with Nicholas for many years now, slowly increasing his tolerance for more and more dental work.

This week however, we have discovered that Nicholas has some tooth crowding. Dr. Lindi and I both agree that we should do all that we can to avoid putting braces on Nicholas. Any excessive time spent sitting in a dentist chair is upsetting to him. Since maintaining braces requires a fair amount of "chair time" this seems like an unnecessary form of punishment.

So, to avoid this bracing procedure, we must ensure his secondary teeth have enough room in his mouth to erupt.

"It looks like he is going to need to have a tooth pulled," Dr Lindi says to me. Instinctively, I brace myself for what I am about to hear.

"With Nicholas's clotting issues, I would feel more comfortable if we have an oral surgeon perform the extraction," she says. I am thankful for her honesty as I try to prepare myself for yet another surgical procedure for my son.

"There are some local surgeons I can refer you to," she explains, "Or, if you are more comfortable, we can schedule you at Children's."

"Thanks Dr. Lindi," I reply "Since Nicholas has such a slow blood clotting response, I would feel more comfortable at Children's."

"OK," she says, "we can schedule a consult in June, and hopefully have the procedure done in July."

I try to swallow, but my mouth is dry as I realize our summer vacation may need to be postponed.

"There is something else," she says, and I decide to sit down.

"He has a few cavities that need filling, I would feel more comfortable if I could perform the work at the Franciscan Hospital so he is not stressed. I have some time available in August. We have come so far in creating a good dental experience for Nicholas. I do not want to jeopardize it."

I am speechless as my last hope for some summer fun has now been extinguished.

"I can take some x-rays at the same time, so we can perform all the necessary dental work at once," she says.

I am thankful for Dr Lindi's sound advise and yet a sadness creeps into my soul. Tooth extractions and fillings are simple procedures that most individuals perform in a single visit to the dentist. My son will now have to undergo two surgical procedures in Boston hospital settings. So much for a relaxing summer.

I feel angry that our life is so difficult.

Sensing my disappointment, Dr. Lindi puts her hand on my shoulder.

"It is not always going to be this difficult," she says reassuringly.

I smile halfheartedly and wonder if this is true?