We had an appointment last week with a new doctor who happens to be both a "developmental pediatrician" and a "pediatric physiatrist", at the Center for Exceptional Families. I was happy with the appointment, because I felt like this doctor was very thorough, thoughtful, and had a lot of good ideas. The appointment lasted THREE hours. That tells you a lot, because if you have any experience with doctors, you know that you usually get to see them for less than 20 minutes where you feel rushed and forget what you were there for in the first place!
I want to sum up what we talked about with the doctor, mostly for my own benefit because we covered so much that I feel kind of scattered and overwhelmed, and I need to sort out my thoughts.
I'll start with Holland, cause she is a little bit easier. Holland's diagnosis remains the same with regard to her CP. She has a mild left-sided hemiparesis, with overall hypotonia. She will continue to wear her Jumpstart orthotics to help with balance, and also to keep her feet straight and her ankles from rolling. In terms of therapy, she will continue with once a week outpatient PT, as well as 30 minutes each once a week of school-based PT and OT. The doctor recommended any additional therapy be recreational, such as dance, gymnastics, hippotherapy, or swimming.
This doctor also recommended looking into vision therapy for Holland to help with tracking, and eye coordination. The jury is out on whether VT actually works, and as with everything, there are varying opinions as to whether or not to do it depending on who you talk to. We have talked to people whose opinions we respect on both sides of the spectrum.
The doctor was concerned about both girls' BMI, as they are both obviously underweight (DUH!). She recommended Benecalorie to increase their calorie intake, and Benefiber to help Holland with, um, another of her issues. I have to look into where to get it, and I know many of you have used the Benecal so I would be happy to hear any tips you might have on where to get a good deal.
Eden was originally diagnosed with Spastic Diplegia CP in August 2005, when she was just a year old (8.5 months adjusted). At this recent visit, the doctor changed her official diagnosis to Quadriplegic CP with mixed tone. I guess I have mixed feelings on this. It definitely sounds worse, but she is still the same old Eden, so I suppose it makes little difference what we call it. The doctor said that most kids who are truly diplegic will walk, and have less involvement of the trunk than Eden. I pointed out that Eden does have good use of her hands, and I thought that the quad diagnosis meant that the hands would be more affected. She said that she feels Eden does have some mild spasticity in her hands, but I don't know about that. I think she has some issues using her hands because of the low trunk tone at her shoulders (makes it sometimes difficult to get her hands where she wants them), but if she is in a good supported position, she has great fine motor skills. But whatever. Eden definitely functions more like a quad than a di, but it is mostly due to the severe hypotonia in her trunk, so we'll go with it.
The good news was that she feels the spasticity in Eden's legs is very mild, and she is not a candidate for botox, casting, or surgical intervention at this time. She said that IF it weren't for the trunk issues, Eden would definitely walk (whatever that is worth). She recommended more intensive therapy for Eden's trunk, in combination with hippotherapy. She made two suggestions, one being EuroPeds, and the other Conductive Education. Both are pretty intense approaches to PT and OT, with many more hours put in than we are doing now. Right now Eden gets about 3 hours of PT/OT a week. With EuroPeds or CE, she would be doing 6-20 hours a week. So, I came home and started doing some research. As soon as I make up my mind to maybe give it a try, I talk to our PT who hasn't seen kids have good results with either approach. There would likely be a lot of crying involved, both on Eden's part, and my own, and in Eden's case a lot of breath-holding, turning blue, and passing out. Our PT said that most of the kids she know who have tried it end up hating PT, and giving even more of a fight than before. She also said that what little gains they do achieve are usually not maintained. She has seen more success with kids who are a bit older than Eden, and are able to understand the therapy process a bit better.
As with everything else, there is never a right answer. Is more always better? Are the time and money we spend going to pay off? Is our goal really to get Eden walking, or just to have a happy well-adjusted kid who knows we love her the way she is? There are always more questions than answers. I need a crystal ball.
In other Eden news, we got a prescription for Periactin (antihistamine that doubles as appetite stimulant)! I am looking forward to trying it. As an aside, Eden has been doing some fabulous eating lately. I think that the Prevacid may actually be doing something to help. But I still think the Periactin is worth a try. I know a couple of kiddos who have used it with good success. We tried in April to get a prescription from our regular pediatrician, but she, in cahoots with the allergist/immunologist, told us no. They said that it is contraindicated in kids with respiratory issues (asthma). I looked it up, and could not find this contraindication. I talked to the new doctor about it, and brought up what I had been told before, and she was surprised. She had never heard of this, and has used the medicine many times in the past with other kids with similar issues. She was comfortable to put both girls on it. I decided to try it with Eden first, since she has much less respiratory related issues, and is also the smaller of the two. If we have good luck, we may try Holland on it also.
The doctor wants us to complete a 3-day calorie count for both Holland and Eden. I thought I wanted to do this, until I started trying to do it. It is extremely difficult to quantify how much these kids eat. I tried measuring out their bowl of cereal for breakfast, then totally stressed out making sure that they ate every bite. It was horrible. I am not sure I want to know exactly how many calories that are eating. I really am doing the best I can. If I try the Benecal, and the Periactin, what more am I willing to do? They do eat, they like to eat, and they are growing, albeit very slowly. I don't want to mess with a good thing. We HAVE made progress. I wish one of these doctors would give us a little credit. Just a little acknowledgment for the extremely HARD WORK we have done to get them this far with eating. The blood, sweat, and tears that we have endured...well, maybe not blood, but definitely sweat and tears. Heck, they're on the chart for height. Doesn't that count for something???
Sorry, got off on a tangent. Back to the doctor appointment. We talked about Eden's swallowing issues. She does great most of the time, and can chew like a champ, but still chokes occasionally with thin liquid, like juice or water from a cup. We are finally going to take her in for a swallow study. Not sure what may come out of that except that they will say, yep, she chokes on thin liquids, maybe you should add thickener? But, it has been recommended more than once, and it's not so invasive, so we are going to do it and see what comes of it.
The doctor also wrote scripts for an adaptive toileting evaluation, and a motorized wheelchair eval. We recently applied for, and got, Children's Special Health Care, which is basically our state's Medicaid for children with qualifying disabilities. We pay a pretty affordable premium, and it will cover whatever equipment that Eden needs that our regular health insurance won't. We plan to take full advantage of it, and order all of the equipment that Eden needs this year. I am excited but also a bit worried about the whole power chair thing. I absolutely KNOW Eden will love it, and will learn to use it within the first two minutes. However, as with her pony walker, I am afraid that once she has it, she won't want to do anything else! My plan is that she will use it outside of the home, like at the mall, and the grocery store, and out to dinner, but not so much in the house.
Once we get the chair, we will need a way to transport it. John's car lease ends in 5 months, so I guess we will have to get a van and CSHCS will help us pay to have it adapted for a wheelchair. I can't believe I actually have to buy a minivan. It's not cool to laugh at me. I'm only doing it because I have to!