Please recommend Neurologist and Geologist in Houston

[lucyl]

Hi, everyone.

My girl was born with serious medical problem. She has weak muscles. 1 year has passed, but still no diagnosis could be given from the local doctors.  They just guessed it might be the brain's problem. I plan to bring her to see the Geneticist and neurologist in Texas Children Hospital in Houston recently. May anyone recommend one neurologist and geneticist in Houston? I really hope my girl could be diagnosed soon. Thanks.

God bless,

Lucy

[IncompetentHousewife]

I'm not in Houston, but I just wanted to offer my support for you in trying to get help for your child. Can your local pediatrician give you the name of a pediatric neurologist to start with? Is there a university with a medical school there that you could call? My son has cerebral palsy and ataxia, which are conditions of the brain that affect the muscles. We first went to a pediatric neurologist, and it helped a great deal. Our family doctor didn't think we needed to see a specialist. I'm glad I persisted and went to see one anyway. We now have diagnoses and know what to do to help him — physical therapy, leg braces, etc. Best of luck.

[Hopesmommy]

Dr. Mary Kay Koenig at Children's Memorial Houston is a pedi neuro who's specialty is mitochondrial disease. If the muscle weakness could be caused by something metabolic I would look into seeing her.

[lucyl]

Originally Posted by IncompetentHousewife 

I'm not in Houston, but I just wanted to offer my support for you in trying to get help for your child. Can your local pediatrician give you the name of a pediatric neurologist to start with? Is there a university with a medical school there that you could call? My son has cerebral palsy and ataxia, which are conditions of the brain that affect the muscles. We first went to a pediatric neurologist, and it helped a great deal. Our family doctor didn't think we needed to see a specialist. I'm glad I persisted and went to see one anyway. We now have diagnoses and know what to do to help him — physical therapy, leg braces, etc. Best of luck.

Thank you a lot for your support and good suggestions. Actually, my baby has seen the local neurologist and geneticist frequently. But the neurologist is just so so and sometimes even gave us wrong information about her problem. Fortunately, we have a good geneticist here. The geneticist always thought my baby's problem might be on her brain which was damaged or did not developed well so that it is unable to send out signals to the muscles, maybe like your son. But he thought she is still too small to find the diagnosis. We met the geneticist yesterday. He referred my baby to Blue cross clinic in Houston. But he did not say which Dr. my baby will see.

My baby has physical, occupational, and speech therapists working with her every week since she was 2 months old. The simulation and therapy are considered the only way to help her. They really work. Now my baby is stronger. besides, she uses the stander to strength her legs. We also let her swim in tub twice a day. She moves much better in water. I feel swimming is very good for kids with muscle problems. Maybe you can let him try swimming as well. 

I hope all our kids will be happy and full of joy, even though they might be disabled for a lifetime. Anyway, I will try my best to love her and take care of her.

[lucyl]

Thank you so much for your support and good suggestion.

Actually, my baby has seen the local geneticist and neurologist regularly. But the neurologist is just so-so, and he suggested her to see geneticist in Houston. The  geneticist is good, and he suggested to see neurologist in Houston first (I confused about their opposite opinions).  The geneticist always thought my baby's problem is on her brain, which was damaged or did not developed well. Therefore, the brain could not send out the signal to the muscles, maybe like your son. We met him yesterday, and he referred her to Blue cross clinic in Houston, but did not mention the Dr.'s name.

My baby has speed, occupational, and speech therapists working with her every week since she was 2 months old. The simulation and therapy are considered the only ways to be helpful. They really work, and my baby is stronger. Before, I doubt and do not want to believe why doctors said on treatment to that type of problem at all. From your experience, it seems that even though you have diagnoses, no surgery or medicine could be used to cure the problem, only therapy, right?

In addition, my baby also use the stander to strengthen her legs. She also swim in tub twice a day, and moves much more in water. I feel swimming might be a very good exercise for kids with muscle problems. Maybe you can let your son try swimming.

You are a wonderful Mom. You know what is right for your son and you have always being giving him the best you can.

I hope all our kids will be happy and full of joy, no matter they are healthy or not. Anyway, I also will try my best to love her and take care of her as much as I can. 

Edited by lucyl - 6/7/12 at 10:41pm

[lucyl]

Originally Posted by Hopesmommy 

Dr. Mary Kay Koenig at Children's Memorial Houston is a pedi neuro who's specialty is mitochondrial disease. If the muscle weakness could be caused by something metabolic I would look into seeing her.

Thank you for your suggestion. I never heard the local Dr. mention "mitochondrial" problem. If she has that problem, I will try to see her.