After the fiasco of the last psychologist we searched long and hard before finding our newest doctor to help us better parent Hannah. We first went to meet her without Hannah and discussed our concerns. I felt like she really listened to us and asked all the right questions. Her next step was to set up an evaluation for Hannah, as well as send us home with a HUGE packet of questionnaires, check lists, and rating scales to fill out about Hannah as well as some for her teacher at preschool. I brought almost 2 hours worth of video containing the behaviors we were concerned about and the doctor promised to watch it. Then she went over the things she felt were the most likely culprits for Hannah's behaviors. Her list was long and scary and she said that everything on it needed to be ruled in or out before we could create a plan of action. On her list to check out were Asperger's, ADHD, Oppositional Defiant Disorder, and Early Onset Bipolar Disorder. Asperger's doesn't scare me. We came to terms with that almost 2 years ago. The problem is that Hannah no longer seems to be exhibiting a lot of the symptoms that were the key diagnostic factors for it. She still has many "aspie traits" but I have a feeling she no longer qualifies for diagnosis. Her problems are different now. She cannot handle having limits set and has grown quite aggressive, manipulative, and very moody. Now that all the testing is done we are just waiting to get the call to come back in to discuss what the doctor has found and what her opinions are. I'm anxious about what we might hear as some of those disorders she listed feel quite scary to me and require life long medication. However, at the same time I'm ready for an answer so that we can get on our way to helping our little girl.
Tuesday, September 28, 2010
Sunday, September 19, 2010
If you are a regular reader here you know that Hannah is EXTREMELY flexible, like you can take her thumb and bend it sideways to lay it flush with her wrist kind of flexible. She also has really flat feet and her feet collapse outward significantly. An orthopedist had been watching this since she was about 18 months old using the wait and see approach. Last October when Hannah starting complaining of pain in her hips we were back to the doctor again and she was given AFOs for her shoes and pronounced at the extreme edge of normal as far as joint laxity. The doctor called it hypermobility syndrome. Well it was time for her yearly follow-up last week and I believed that Hannah had outgrown her AFOs because she was complaining that they hurt her feet which she hasn't done since getting used to wearing them last year. Besides checking out the AFOs the doctor completely reevaluated her because of some concerning trends he had noticed in her gait. Because she's heavier now her ligaments are under even greater strain and her feet, ankles, and knees are showing the stress and are starting to show the effects of over compensation. It was hoped that her ligaments would tighten some with age and that the AFOs would be a temporary thing. Unfortunately, things did not improve. In fact, they got worse. After the evaluation the doctor informed me that Hannah had a mild form of a genetic disorder called Ehler's Danlos Syndrome. I don't know much about the disorder yet, but from what I understand it is mainly a defect in the production of collagen. Because the collagen is defective ligaments, blood vessels, skin, and anything else made of collagen are suspect to problems. So far, it appears that Hannah really only has issues with her ligaments and skin, but the doctor wants her to probably go see a cardiologist in about 6 months to get a baseline idea of her heart health in case any issues crop up as she gets older. There is no cure for Ehler's Danlos unfortunately, but the symptoms can be treated individually. So, Hannah had her AFO's adjusted, thank heavens she hadn't outgrown them since they cost $600 a pair and are NOT covered by insurance. She is also going to have to wear something called a Dennis Brown bar at night for 6 moths to a year (then she'll be reevaluated to see if it's helping or if she'll need surgery). I am SO NOT looking forward to this bar. It is basically a pair of shoes attached to a metal bar that holds the legs in a fixed position. They used to be used for infants a lot in past generations to correct bowlegs, in toeing, etc, but now they are basically a thing of the past and I can find absolutely NO information on them being used in a child as old as Hannah. Everything I have read about them show them being used on immobile kids. In fact, the idea of kid Hannah's age using them is so far fetched that when I went to order the special shoes that have to be bolted to the bar, the medical equipment guy had to look through several manufacturer catalogs before he found a place that even made Hannah's size (size 12 in case you were wondering!). Hannah hates wearing shoes and we have a hard enough time keeping her in her shoes during the day so I'm dreading trying to get her to wear what look like very uncomfortable shoes at bedtime. To make matters worse, she's a belly and side sleeper and with this bar she will have to sleep on her back. She also wakes at least once a night to go to the bathroom and I'm not sure how she's going to let us know she's awake if she can't get up out of bed and walk to the door to knock on it like she does now. We are definitely going to have a big learning curve here soon once the shoes come in. Wish us luck.
Monday, September 13, 2010
So. . . . . Soccer has been interesting. Hannah insists that she wants to do it, but whines pretty much the entire time during practices and games saying she's thirsty, tired, hungry, etc. I'm not sure if she likes it or not. One thing is for sure, she definitely DOES NOT get the concept of a soccer game. If the ball is near her she will kick it and she will sorta run after the ball along with the rest of the herd, but if another person is near the ball she will not kick it, nor will she try to kick the ball more than once or steal it from another player. Most of her games are spent wandering around the field not paying attention and then running when Kyle tells her she needs to run! I think she may not be quite mature enough for a competitive team sport. It has been interesting to see that for all her aggressive tendencies she shies away from using them on the field to her advantage and actually gets intimidated by the more aggressive players on the opposing team. If only karate hadn't been a bust. That might have been right up her alley, but we won't soon find out since we showed up again for the first class of the session last week only to have the instructor be a no show AGAIN! Then I found out today that the session is cancelled. I think next session (starts in November) we'll try swimming since she has really been enjoying that with Kyle and has made great strides as far as going under and propelling herself around the pool. Who knows how well she'll do in an organized class, but it's worth a shot.
Hannah has once again had a huge leap in her reading abilities and is now breezing through chapters out of chapter books. This past weekend we all camped out in our backyard and Hannah decided to get up at 4:30am. Kyle and I of course were not about to wake up that early and so Hannah picked up the only book in the tent, Stuart Little by E.B. White and began reading. I lay there and listened to her read two whole chapters. There were a few words over those two chapters that she stumbled over, but on the whole she did fantastic. Holy Cow! Stuart Little is at 3rd grade reading level if I remember correctly. I lay wide awake and stunned, unable to go to sleep for fear that I'd miss her amazing performance. Another recent obsession of hers is counting, counting for a LONG TIME. She's been able to count to 100 for a few years now, but now she can do it fast and without thinking at all so she's been constantly counting to 100 and then starting over and then over and over. The thought had never occurred to us to teach her to go past 100, but the other day Kyle asked her, "Hannah, what comes after 100?" She didn't know so he said 101 and then asked her what came next. She immediately got the pattern and now she can count absolutely as far as she wants. She hasn't made it to 1000 yet, but that's only because she usually gets tired of counting or we make her stop before she gets there!