Tuesday, April 18, 2006

Here We Go...Again!

The Bear has been going to both Physical and Occupational therapy for some time now. Awhile back, the physical therapist suggested that I take him to an Orthopedic Surgeon to have his legs examined. Since he began walking, he has walked on his toes and the muscles and tendens in the back of his legs are very tight. His appointment was yesterday. Here's how it went...

The Dr. came in and examined his legs, then said to me,
"Has he been diagnosed with CP?"
"Cerebral Palsy"
"Well, that's what it looks like the problem is to me. He needs to be in leg braces."
"Um......ok. For how long?
"For the rest of his life."

He then said I needed to take him back to the Neurologist for more tests as to what was for sure causing the problem. He wrote me a scrip for the braces and said to come back in 3 months. The whole visit was 10 minutes tops.

By the time I got to the car, all the questions I should have asked started to come to me, along with the very real urge to burst into tears. Of course, I couldn't, because I didn't want to alarm The Bear. I, of course, went straight home and called the Neuro...twice. They have yet to call me back.

I really don't want to do the braces until I have a diagnosis from the Neuro as to what the problem is. Do you have any input? Any experience in this area? Please share!


K said...

What an insensitve jerk. Am I reading this right? He just said this to you and wrote a scrip for braces? What?

Hi, your child is disabled for life, here's some braces call you neuroligist...

I am so stunned.

How horrible. I feel awful for you. I'm so sorry.


Anonymous said...

He sounds horrible! I would definitely get a second opinion if possible. It sounds as though he just wanted to get the appointment over and done with.

J's Girlfriend said...

Oh harsh! Even if he's right, he sounds like a completely crap GP! I'd swap now.


for clarifying info... Hope all goes well for you and your kid. And you can go from there to Scope, the UK's main CP charity.

b said...

Wow, that Dr sounds like a real ass to me. I hope you figure out what's really wrong with your child! Best wishes.

peebugg said...

I am completely of no use on this subject...except the venting about the Doctor. Is there another specialist in the same field you can go see???? Call the Neuro people and irritate them until someone calls back...trying crying and hyperventalating on the phone....that should work....

Keep us posted...

SalGal said...

Wow, what a jackass! Sounds like he was absent on the day they handed out compassion.

Hopefully you've had a chance to sit down and think about what this might or might not mean. I would actually call the doctor back and request a follow up appointment or maybe a phone appointment at which you could chew his ass out, I mean ask him your questions. You're a mama lion and you are going to stand up and roar for your cub! Don't take no for an answer. Trust me, I'm bossy and well experienced in being the squeaky wheel.

As far as if he actually has CP? No use for me there. Give it a google and I'm sure you'll find out something!


GeminiWisdom said...

I have to agree with the whole "Dr is an ass" comments people are giving you. He gets a big fat F for craptacular bedside manners.

Stacie said...

Hey there, I am so sorry, First, take a deep breath, Second talk to God, Third, get a second opinion, soon. Then, repeat steps one and two over and over. It works, with what we are going through with our little one, sometimes it is the only thing that works. That, and rest assured, that no matter what "official" diagnosis comes of this, he will always be your baby, and will be perfect in your eyes. Hang in there, you will be in my prayers


Gem said...

Isn't CP about WAY more than the legs? I always thought retardation came with along with that (the only person I've ever known personally with CP had a withered arm, a limp AND severe retardation) -- and I don't remember ever reading about you having any developmental problems with him. Even if he does end up having leg problems, it could be about a million things besides CP. What a butt of a doctor!

Jay said...

Like everyone else, I am outraged at this guy's incompetence. He may be right, or he may be wrong (not a very thorough check up , I'd say) - either way, he owed you time and explanations. Obviously you'd have tonnes of questions if you were given even a moment to think of them. I would have had the same reaction in the parking lot...indignation.
I hope you get your second opinion, and have better luck with the doctor next time.

J's Mommy said...

How old is The Bear? How could they not have suggested CP until now? Definitely don't do anything until you hear from the Neuro. My thoughts are with you!!!

SupComTabz said...

My friend Nichole has CP - but it was diagnoised very early in her life. I'd wait for the Neuro.

SupComTabz said...

and - to comment on what gem said - there is not really a link between CP and retardation.

Strude said...

I know it's been said, but I echo the whole Dr. = ass thing.

Love you and praying for you.

Gem said...

Whatddya know, I don't know as much as I thought I knew! Thanks for the info, supcomtabz, now I'll know enough not to stick my foot in it again, lol!

Gem said...

OK, did some Googling (which I'm sure you have as well, DQ). Here's the first link I found:

A closer look at Cerebral Palsy

And the description:

"What is Cerebral Palsy?

Cerebral means brain, and palsy is defined as a loss of control or weakness in movement. Putting the two words together, cerebral palsy (CP) is a loose term which is given to a number of central nervous system (CNS) motor disorders which are characterized by impairment of voluntary muscle movement. In individuals who have cerebral palsy, the parts of the body that provide for movement, such as the muscles, nerves, and the spinal cord are normal. However, the brain, which is the command center for sending messages to those parts of the body that coordinate movement, is unable to do so in its usual manner.There are a number of conditions that may be associated with cerebral palsy. Mental retardation is commonly associated with cerebral palsy.

The percentage of individuals experiencing mental retardation in some form ranges from 25 to 75 percent. Some individuals with cerebral palsy may have seizure disorders. Others may experience problems with vision, such as Strabismus. In some instances, individuals with cerebral palsy may experience difficulty swallowing (dysphasia). Learning disabilities are also a possibility. Problems may arise in bowel and bladder control, as well as in hearing or speech, and in gross or fine motor control."

This doesn't sound ANYTHING like you've described your little guy. Hopefully this was an overworked PT guy giving a knee-jerk diagnosis and it will all be straightened out soon with some exercises to strengthen his little leg muscles so he won't be on his tiptoes anymore.

cmhl said...

ok, I'm just going to butt in here even though it is my first visit!

my oldest (8 now) has been through pt, ot, all KINDS of testing, with no clear diagnosis. he is finishing up the 2nd grade, and it is a struggle, but he seems to be slowly slowly getting more toward the "normal" end of hte spectrum, physicially.

he was a toe-walker, and he would go down on his heels if you reminded him, but then right back up. we had one dr that gave dire predictions, but then another one I love said that he just had unusually tight hamstrings. he was a "W" sitter (rather than sitting indian style), another sign of hte hamstring/hip problem.

anyway. for a few months he had to wear shoes all the time that kept him from teh toe walking,a nd wnet through extensive PT (he hated it). but now, he is pretty much over that. STILL not flexible at all, but better..