doctors near Baltimore MD (long - sorry)

[Guest guest]

Hi - I am new to the list. Can you advise me where to find a good doctor for my family's workup? I live near Baltimore MD and have an appointment with Dr. Tao Wang at Hopkins (metabolic genetics) in July. Any opinions, or referrals to anyone else who is better? I have a 5 year old son with autism who has very low serum Carnitine and who has done well on the mito cocktail - he is on the DAN protocol and he was already on many of the components. He had one major regression, but we thought that was due to his autism. I am about to start him on CoQ10. He is hypotonic, weak, motor delayed and on Carnitor is able to run and ride a bike for the first time. I have a 12 year old daughter who is multiply disabled (spastic quadriplegia) and fully dependent. She has low Carnitine and is better ( awake, better tone) on Carnitor, but is not on the rest of the cocktail yet. She has had multiorgan dysfunction, including cardiomyopathy, and has had 2 major regressions (with significant IQ impact, unfortunately). She is now stable and doing well on the ketogenic diet (tube-fed) for 7 years for Lennox-Gastaut epilepsy. I also have a 15 year old daughter with ADHD and asthma who has not been tested. She can't ride a bike, is kyphotic and has lousy handwriting. I was just tested, and found to have low Carnitine, and am better (energy level, not falling asleep when I sit down, less hypoglycemia and GI symptoms) on Carnitor. Maternal family history is full of neurological/psychiatric, GI, respiratory, autoimmune and motor complaints (all in everyone - we thought it was just because we were Irish!)- mother, aunts, all 4 sisters. MGM died of Alzheimer's recently. My abnormal lab test has started the ball rolling for a workup - I wish that I had known more sooner. When the kids came up Carnitine deficient, we thought it was due to their special diets. Any advice or suggestions, especially about docs or workup, would be really appreciated. I have been on the list for about a week, but the topics discussed are so familiar to me - multiple kids, severe issues - that I feel like I've found a home, even though we may not pan out with a mito disorder.

Thanks in advance!

Kathy

[Guest guest]

hi kathy,

i can't tell you if anyone is better than dr. wang, (do not know

anything about him) but my 4 year old daughter (dx with leighs) has

been seen by dr. carol greene at childrens in dc. we have only seen

her once, as we see dr. bruce cohen at cleveland clinic for our

yearly (just trying to find someone closer--we live in western md)

anyway, my husband and i really liked her and will continue with

follow up care with her. she was good to also include the entire

family (we have two sons also), and make sure they understand their

sisters disease....meaning to make sure they understand it is not

their fault....for them not to worry, etc.

good luck and feel free to ask any questions.

bethany

mom to brennan 7, palmer & anna grace (leighs) 4

> Hi - I am new to the list. Can you advise me where to find a good

doctor for my family's workup? I live near Baltimore MD and have an

appointment with Dr. Tao Wang at Hopkins (metabolic genetics) in

July. Any opinions, or referrals to anyone else who is better? I

have a 5 year old son with autism who has very low serum Carnitine

and who has done well on the mito cocktail - he is on the DAN

protocol and he was already on many of the components. He had one

major regression, but we thought that was due to his autism. I am

about to start him on CoQ10. He is hypotonic, weak, motor delayed

and on Carnitor is able to run and ride a bike for the first time. I

have a 12 year old daughter who is multiply disabled (spastic

quadriplegia) and fully dependent. She has low Carnitine and is

better ( awake, better tone) on Carnitor, but is not on the rest of

the cocktail yet. She has had multiorgan dysfunction, including

cardiomyopathy, and has had 2 major regressions (with significant IQ

impact, unfortunately). She is now stable and doing well on the

ketogenic diet (tube-fed) for 7 years for Lennox-Gastaut epilepsy. I

also have a 15 year old daughter with ADHD and asthma who has not

been tested. She can't ride a bike, is kyphotic and has lousy

handwriting. I was just tested, and found to have low Carnitine, and

am better (energy level, not falling asleep when I sit down, less

hypoglycemia and GI symptoms) on Carnitor. Maternal family history

is full of neurological/psychiatric, GI, respiratory, autoimmune and

motor complaints (all in everyone - we thought it was just because

we were Irish!)- mother, aunts, all 4 sisters. MGM died of

Alzheimer's recently. My abnormal lab test has started the ball

rolling for a workup - I wish that I had known more sooner. When the

kids came up Carnitine deficient, we thought it was due to their

special diets. Any advice or suggestions, especially about docs or

workup, would be really appreciated. I have been on the list for

about a week, but the topics discussed are so familiar to me -

multiple kids, severe issues - that I feel like I've found a home,

even though we may not pan out with a mito disorder.

>

> Thanks in advance!

> Kathy

[Guest guest]

Thanks, Bethany -

I guess that I will start with Dr. Wang, and if I still don't have answers will see someone like Dr. Cohen or Dr. Schoffner. I'm in Ellicott City, so we probably aren't too far apart.

Kathy

Re: doctors near Baltimore MD (long - sorry)

hi kathy,i can't tell you if anyone is better than dr. wang, (do not know anything about him) but my 4 year old daughter (dx with leighs) has been seen by dr. carol greene at childrens in dc. we have only seen her once, as we see dr. bruce cohen at cleveland clinic for our yearly (just trying to find someone closer--we live in western md) anyway, my husband and i really liked her and will continue with follow up care with her. she was good to also include the entire family (we have two sons also), and make sure they understand their sisters disease....meaning to make sure they understand it is not their fault....for them not to worry, etc.good luck and feel free to ask any questions.bethanymom to brennan 7, palmer & anna grace (leighs) 4> Hi - I am new to the list. Can you advise me where to find a good doctor for my family's workup? I live near Baltimore MD and have an appointment with Dr. Tao Wang at Hopkins (metabolic genetics) in July. Any opinions, or referrals to anyone else who is better? I have a 5 year old son with autism who has very low serum Carnitine and who has done well on the mito cocktail - he is on the DAN protocol and he was already on many of the components. He had one major regression, but we thought that was due to his autism. I am about to start him on CoQ10. He is hypotonic, weak, motor delayed and on Carnitor is able to run and ride a bike for the first time. I have a 12 year old daughter who is multiply disabled (spastic quadriplegia) and fully dependent. She has low Carnitine and is better ( awake, better tone) on Carnitor, but is not on the rest of the cocktail yet. She has had multiorgan dysfunction, including cardiomyopathy, and has had 2 major regressions (with significant IQ impact, unfortunately). She is now stable and doing well on the ketogenic diet (tube-fed) for 7 years for Lennox-Gastaut epilepsy. I also have a 15 year old daughter with ADHD and asthma who has not been tested. She can't ride a bike, is kyphotic and has lousy handwriting. I was just tested, and found to have low Carnitine, and am better (energy level, not falling asleep when I sit down, less hypoglycemia and GI symptoms) on Carnitor. Maternal family history is full of neurological/psychiatric, GI, respiratory, autoimmune and motor complaints (all in everyone - we thought it was just because we were Irish!)- mother, aunts, all 4 sisters. MGM died of Alzheimer's recently. My abnormal lab test has started the ball rolling for a workup - I wish that I had known more sooner. When the kids came up Carnitine deficient, we thought it was due to their special diets. Any advice or suggestions, especially about docs or workup, would be really appreciated. I have been on the list for about a week, but the topics discussed are so familiar to me - multiple kids, severe issues - that I feel like I've found a home, even though we may not pan out with a mito disorder.> > Thanks in advance!> KathyPlease contact mito-owner with any problems or questions.