We've lived in one place for about a year now, and during that time Maddy has seen a lot of healthcare providers and therapists. (Please note: not all achon kids have this many appointments, and some have way more. Kids are all different, "little" or not.) Here's a rundown of her doctors and specialists this year...
Pediatrics
She has been seeing the same base pediatrician since we got here. Dr. V is wonderful. She has educated herself on achondroplasia, uses the appropriate growth charts, and checks for hydrocephalus. We had been seeing her every one to three months. After her 18-month wellbaby checkup we were going to wait until she was two to take her back, but problems with ear infections, viruses and allergies have brought us back several times.
Genetics
We saw Dr. T at the skeletal dyplasia clinic that's part of a local children's hospital. He was kind of our point of contact there and coordinated appointments with other specialists. He gave us an overview of achondroplasia and told us what to expect over the next few years. We were going to him every six months. He left his position recently and we saw his replacement last month. The jury's still out.
Orthopedics
Maddy first saw an ortho doctor at the same time we saw the genetics doc. She sees him every six months and has x-rays of her back taken each time to check for kyphosis and hip problems. Dr. McC wants her to come back in three months because he hasn't decided yet whether she could benefit from a back brace (she does have a small degree of kyphosis).
BUT... Last winter we traveled to a well-known dwarfism specialist who is also an orthopedic doctor. Dr. P thinks her kyphosis is minimal and predicts she won't need any intervention. We are pursuing authorization through our insurance to have Maddy primarily see this doctor instead of the local clinic.
Neurosurgery
Again, through the skeletal dysplasia clinic. We first saw Dr. M last fall when Maddy was throwing up a lot. He performed the spinal cord decompression surgery on Maddy last December and we had several follow-ups, the last one being this summer. Her post-op MRI looked good, so hopefully we won't have to go back to neuro for one or two years (yay!).
Pulmonology
Maddy sees a nurse practitioner in the sleep study clinic at the children's hospital. She had a sleep study before her surgery last year and will have to go back for a repeat this November. I hate them. But they are important, and we had a good experience with the hospital staff. She will probably need many more sleep studies.
Gastroenterology
When Maddy was throwing up a lot last fall, Dr. V referred us to Dr. R, a pediatric GI doc at the children's hospital right here in Dayton. He was unfamiliar with dwarfism but did lots of research. We are both learning as we go. He started Maddy on reflux meds that helped a lot. In the meantime, I found several other parents of achon kids who said that throwing up is not unusual for our kids and that she may just grow out of it. So I'm trying to convince Dr. R that Maddy doesn't need a scope. She sees him every three to six months.
ENT/Audiology
One of the only specialists that Maddy can see at the base medical center is the Ear Nose and Throat doctor. Dr. M put in Maddy's ear tubes last fall and she sees him every 6 months. She needs a hearing test once a year. Her tubes are still in place. If she ever needs to have her adenoids or tonsils taken out, we'll have to take her off base to a children's hospital capable of handling her special anesthesia needs.
Developmental Pediatrician
Her dwarfism automatically qualifies Maddy as a special needs kid so she sees the developmental specialist, Dr. S, every six months. He makes sure she's on track with developmental milestones and has the information from all the specialists she's seeing. He talks with me about how it may be challenging to discipline her as she gets older because she's "special," but she needs discipline just like any other kid. I needed to hear that. He also said that her anxiety around strangers is partially due to her temperament but it's also worsened by all of her doctor and hospital visits. So the "cry it out" strategy of leaving her with people other than Mommy or Daddy for hours at a time is something he discourages. He said it may take her some time, but she'll come out of her shell.
And here's the parade of therapists...
PT/OT
Last fall Maddy started seeing Barb, who is an occupational therapist who also worked on some physical therapy issues. Appointments were once a week for an hour. Maddy did not like it, despite her having the best OT in the world. Once Maddy started to sit up on her own, I chose to discontinue therapy. Barb is the one who first noticed Maddy's loose joints and especially low muscle tone. Physical therapy is one of those things that parents tend to have strong opinions about. In Maddy's case, I'm glad we did it, but I'm not sure I'd do it again.
Speech Therapy
We were expecting Maddy to be speech-delayed, so the results of her speech evaluation at 15 months were not a surprise. She goes to the same private therapy group that did her OT. She sees two different speech therapists for 30-minute sessions. So two morning each week I drop Ben off at a morning daycare program through our church so I can take Maddy to speech therapy without Ben taking over. I am super happy with how it's been going. Maddy has great therapists and she is making slow but steady progress. Plus it gets her used to being with adults other than Mommy and Daddy, and she gets to be around other kids a bit. Her stranger anxiety and shyness are still pretty intense.
Early Intervention
Our county provides either in-home or classroom services for kids Maddy's age. We chose the classroom, and she's been going for one hour each week since the spring. It was another opportunity to be around other kids and a different adult. But budget cuts meant that her original teacher is gone and some of the other kids have transferred out of the class. A PT, OT, and speech therapist touch base with us during some of the sessions and have been very helpful.
Feeding Therapy
Maddy finally got authorization for a feeding evaluation (it's normally done at the same time as the speech eval, but our insurance doesn't include it.) Two different therapists noticed some things about Maddy last month that made them recommend feeding therapy. It could help to decrease the frequency of her vomiting. She may not be chewing her food well enough. And she may have some issues with texture that we're unaware of. I'm hoping this therapy can be integrated into one of her existing speech therapy sessions so I don't have to add yet another weekly appointment to our calendar. Juggling both of the kids is getting exhausting.
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