Monday, January 29, 2007

And your next diagnosis is....

Brady is not content to stand by and let us enjoy William's Syndrome for awhile. No, he has to add the heart problems and the hernia surgery when he was two months old. Then he had to add the feeding issues and the Calcilio formula. Oh, wait! There's more! We need to add in the strabismus and glasses we will be picking up this week. What have I forgotten? I need to mention PT, OT, ST, weight checks, synergis shots, blood work... and (drumroll, please) we now have a new line on our resume of diagnoses ...Radioulnar Synostosis (see http://www.childrenshospital.org/az/Site1067/mainpageS1067P0.html).

Not that I am trying to be funny, but it is almost comical that Brady seems to get a new problem to face every other month. I feel bad for my pediatrician, who has such a "can-you-believe-this-is-happening" tone in her voice whenever she tells me new updates. I was concerned when I first heard the news over the phone, but when I read the information at the website above I felt a little relieved. Maybe surgery one day, maybe not, but mostly kids are diagnosed at the age of three, which leads me to believe it must be drawn out in some developmental milestone they are not getting. Brady is fine on picking things up, grabbing, holding the spoon and bringing it to his mouth. Tomorrow we have PT so I will get more info from her and post it.

At first there wasn't any link of Radioulnar Synostosis to WS, but then my sister stumbled across an article mentioning both. It said: "Abstract Limitation of supination and pronation of the forearm has been occasionally described in individuals with Williams syndrome. It was found in 26% of 23 subjects examined, and was associated with a spectrum of severity of radio-ulnar synostosis on radiography. The occurrence of this functional motor impairment in a substantial subset of persons with Williams syndrome is relevant, because its evaluation is important in habilitation planning."

So, this also means we are getting another doctor! Hooray! We are going to go see Orthopedics at Children's Hospital really just to get him in there - his pediatrician doesn't think they will do too much to him when he is so young.

What do I think? Well, to be honest - it's annoying and frustrating and troublesome. I think he'll be fine. I think I'LL have a nervous breakdown adding another "condition" to Brady's existence. But it's certainly not his biggest problem or his worst. He certainly likes to keep us on our toes!

6 comments:

Kathleen said...

I was telling Paul about the latest on Brady over dinner and Luke's ears perked up when I mentioned Brady would be seeing an Orthopedist at Children's. (Luke is Brady's 6-year-old cousin who is crazy about Brady - included a picture of Brady on his Superstar poster this week! Luke broke his arm about six months ago and had several appointments at Children's.) Anyway - Luke offered to take Brady to the hospital to see HIS "arm doctor!" So cute!

Kati said...

Huhh, another diagnosis... I looked at the children's hospital page, it sounds much more better than ws...but I am sorry Brady has this. PT doesn't help him?

What an idiot pediatrician! I changed an OT just because she said in the phone that she is very GLAD that we can meet and Szabi has ws... immediately she corrected her last sentence, but it was too late... how can somebody rejoice at the other's misery in the medical attendance? :)

Love, Kati

Kerry said...

I didn't mean anything bad about Brady's pedi - I love her. She's been FABULOUS for everything, giving Brady all sorts of attention and helping me out whenever possible. I meant that when she gave me the news she was commiserating with me over ANOTHER problem Brady had. She always feels so bad to give me the bad news. I feel very lucky that I have her in our corner.

Also, I was being sarcastic about "Hooray! Getting another doctor!" (which probably doesn't ome over too well online!) I meant we can now ADD another doctor to Brady's list - pedi, nutritionist, cardiologist, opthamologist, surgeon, PT, OT, ST -- now we'll add an orthopedist!

Sorry if I was unlcear - that's what I get for writing at 11:00 at night! :)

Lisa R said...

Oh Kerry that sucks, and all the new words you are gonna have to learn just when we were starting to sound smart. I am still a bit confused haw was it DX? Is he having arm troubble? I'm glad it is not to serious but i am with you another DX is just hard to handel...I am just overlooking it to me he is just plain old brady with a touch of WS LOL

Nicole said...

I'm so sorry that you got another diagnosis. I hate going to the doctor for fear of what is to come which is more doctor's appointments. Thanks for the link explaining what is going on with your little man. I'm thinking of you guys.

sandy said...

hi kerry i have logged on to google asking to look at images of radio ulna systosis and i came across your blog my 3 year old grandson was diagnosed last year with this condition with first noticed it when he tryed to hold the spoon . he has been to an orphapedic and had only xrays i live in england the doctors dont know much about it and there is only so many in the world so they say who has it i have searched the internet for any new findings .the hospital an operation would be unsucsesfull the things mitch cant do is undue a sweet throw a ball , wipe his bottom his self he has to wear track bottoms because of the zips on jeans that he cant do. my daughter had 3 boys mitchell is 3 connor is 5 bradley is 10 please can you tell me what wilsons is or was it williams mitch has had hearing test and is due another has they said he is slightly deaf also his spacail awarness is a bit below average my daughter gets full disability for mitch because it is a dissablement congentail but was not apparent a birth at the baby clinic when he was 2 months old they picked up on it but said leave it until he is 3 mitch cannot turn his wrists , please feel free to email me as i have never spoken to anyone whos child has the same i have searched the web, can you tell me anything that your hospital said about the condition, they are useless over hear in england, email me sindylou51@aol.com