Between A Hard Spot and Rock: Cholesteatoma

We finally have a name for Elisabeth's chronic ear problem. I heard it first from her ENT Charles Myer III yesterday.

Elisabeth's chronic ear infection history goes back to infancy and included several sets of tubes and a history of pediatric visits prompted by blood & pus drainage.

It had nothing to do with allergies, swallowing issues, sinus infections, or other red herrings.

It's called Cholesteatoma. It's a benign tumor. A skin cyst growing on the other side of the eardrum.

From an article I extracted from the internet, I learned about possible causes & treatment:


"One of the main causes of cholesteatoma formation is a eustachian tube that does not function well. Eustachian tube problems tend to run in families or certain ethnic groups, such as Eskimos or individuals of American Indian descent. Other disorders, such as cleft palate, Down's syndrome, or other craniofacial abnormalities that impair eustachian tube function may also have a higher frequency of cholesteatoma formation" - Mark C. Loury, M.D., F.A.C.S. © 2006 Advanced Otolaryngology, PC


Treatment is surgery with a 50% chance of reoccurance.

Click on the title above or go here for more information about Cholesteatoma http://www.advancedotolaryngology.com/Pages/PatientServices/1037.html

Potty Training Children With Disability Labels

I have an article right here for information about potty training.


If you're interested in my story, here it is:

I found that part of my responsibility raising Elisabeth is overlooking one thing to make allowances for something else. And it changes every day. After realizing I was expending more energy "cleaning her up" as she got older, I figure maybe it would be easier to put her on an adapted chair and let nature do the rest. She already spent a good deal of time keeping herself busy with her "self-stims" so why not put her on safe adapted potty chair while we're cooking dinner or making lunch and just see what happens.


The key to successful potty training, I remembered from training her siblings, was matching "readiness" with the times she was relaxed. It was difficult for us to gauge this for Elisabeth due to her spasticity, poor trunk control, and communication delays.

So I set out to create my own list of "why" and "why not" my child was ready to be potty trained. Each time I saw a greater opportunity for trying vs. doing nothing at all.


First, I considered if we were all up to this as family because it required a lot of time, relaxation, trunk support, patience, and physical transfers on and off the adapted chair which can be very stressful on one's back.


Second, I knew it was going to take time so I created a block of time allowing as much as one half hour for each sitting for the morning, mid morning, after lunch, 3 p.m., before dinner, after dinner, and before bed-time. I realized this was going to be challenging but eventually, down the road, I was able to cut back to only 3-4 times a day.

I always started the training during the summer each time so it didn't interfere with her school schedule. I also started an extra hour early in the morning positioning her in her chair for that first stream waiting on hand with a yogurt or banana to reward her. Sometimes I was too late and sometimes not. When she succeeded, I gave her the "good job Elisabeth!" and hugs. When I knew we had missed the opportunity, I assured her that we would try again.

And third, I allowed time for failure because for the first trial runs in her life, I gave up thinking she wasn't ready. I gave up because I thought she didn't have the readiness or trunk control or physical ability to make this happen.


It wasn't until the summer shortly after her 14th birthday that I started seeing results. The first few times, her sitting time was extended in some cases to 45 minutes to an hour, but each time something little happened. One time, we waited for almost an hour and half. And right when I was about to take her off, the phone rang. So I left to answer the phone and when I returned, she had her very first success story.


Six months later she is staying dry most of the day with few exceptions. As long as I continue to give her opportunities to use the potty, she stays dry. As long as I am consistent in providing opportunities for her to sit and relax, she is always successful.

We also created a new early morning ritual using the chair to dress her sitting up which is a lot easier than lying down. So while she is sitting, I comb her hair, brush her teeth, and I use the time for putting her AFOs on, her pants as far as it will go while she's sitting, and next her shoes. Before you know it, out it comes, and she's ready for breakfast afterward.

The challenge is when we go out because we can't take the potty chair with us. I usually have to allow for abnormal times to be in restroom with her which often times cuts into the entire purpose of going somewhere. When we go on vacation, for example, I allow for time to spend with her. Hopefully there is always a clean restroom available for us to maneuver around. Unfortunately, when there is nothing available, Elisabeth goes without.


Our last few trips, she stayed dry the entire time.


I can't guarantee anything because each child is so different. In hindsight, I can only offer my experience as a suggestion keeping in mind that the actual process of potty training is pretty much the same for typical developing children as it is for children who have who have low tone, spasticity, and who are experiencing delays in communication ability and simple motor skills.


Potty training requires our patience and their readiness. The only difference, of course, is that it's a little harder to read the signs with our children. And it requires special adaptations in the bathroom to meet their special needs.