Re: Mitochondrial disorder test

[Guest guest]

Melony,We are undergoing testing for a possible mito disorder. We have started out with labs followed by a MRI Spectroscopy of the brain. There will also be a spinal done and muscle biopsy. We are seeing Dr . Gibson in Austin at the Dell Childrens Hospital. Hebis mito/geneticist. There is also a Dr. Koenig in Houston. Rakes about 3-6 months to get into these doctors. Best of luck. Bohac, TxSent from my iPhone

Hi I am a mom of a son with ASD. How would he and I get tested for a mitochondrial disorder?

[Guest guest]

,

We see Dr. Frye at UT Physicians in Houston( In the same office as Dr.

Koenig that mentioned). He will take a very thorough history and tosses

nothing you say aside. Then he tailors testing to your childs situation. we

started with about a years worth of blood and urine testing. In my son's case,

while those tests did show dysfunction of the mitochondria, none were outright

conclusive. We did the muscle biopsy at Memorial Hermann. The results on that

showed significant dysfunction ( but not bad enough for a " disease " diagnosis).

They do testing on the initial fresh sample, but take enough to grow some more

tissue and freeze for later testing so they do not have to take more samples.

In my review of my son's history and discussion with Dr. Frye, we belive that if

testing had been done when he was younger, before nutritional and biomedical

intervention, we probably would have had a " disease " diagnosis. We had some of

the same or similar testing done when he was younger that showed much worse

cellular function than today, after biomedical. The doctors at the time just

didn't know enough about what we were seeing to diagnose or send us to the right

doctor ( I do not blame them, mitochondrial disease is a relatively new field

with much to be learned today. Specialists are few and far between). They did

know enough that he needed help, and as it stands today, the only help for

mitochondrial disease is nutrition. Dr. Frye did say to me " the earlier you

start nutritional intervention in mitochondrial disease the better the outcome " .

I think my son is a testament to that. While he still has many problems, I know

of many children who have not had the benefit of dietary and nutritional

intervention who have continued to decline, where we have seen improvements in

my son's health.

As said, it takes months to get in to see these doctors. Make an intial

appointment now, and a followup appt about three months from the initial at the

same time if they will let you. Once you are a patient, it is a little easier to

get an appt, but not much.

>

> Hi I am a mom of a son with ASD. How would he and I get tested for a

mitochondrial disorder?

>

[Guest guest]

We see Dr. Gibson at Dell Children's in Austin, also. He's worked well with our other doctors (our neuro is a Dell too, as is my son's neurosurgeon), thankfully; and, for a geneticist, is pretty sociable.

We came in with MRIs and basic labs, went on to extremely detailed history/exam, more labs (and more labs, and more labs), trial of nutritional supps/RX meds/dietary changes (he's supported a trial of GFCF though didn't prescribe it--does have a metabolic nutritionist on staff), next appointment we'll discuss a muscle biopsy. We're hoping to avoid CSF testing.

Byrne

Read our kids'stories online at Caring Bridge - http://www.caringbridge.org/visit/prestonbyrne and http://www.caringbridge.org/visit/toribyrne

[Guest guest]

,So good to hear someone else who goes there. We gave our first apt there next Tuesday. Our neuro has taken care of ordering stuff that he knows that Dr Gibson will want. What was your first apt like and what should I expect. Sent from my iPhone

We see Dr. Gibson at Dell Children's in Austin, also. He's worked well with our other doctors (our neuro is a Dell too, as is my son's neurosurgeon), thankfully; and, for a geneticist, is pretty sociable.

We came in with MRIs and basic labs, went on to extremely detailed history/exam, more labs (and more labs, and more labs), trial of nutritional supps/RX meds/dietary changes (he's supported a trial of GFCF though didn't prescribe it--does have a metabolic nutritionist on staff), next appointment we'll discuss a muscle biopsy. We're hoping to avoid CSF testing.

Byrne

Read our kids'stories online at Caring Bridge - http://www.caringbridge.org/visit/prestonbyrne and http://www.caringbridge.org/visit/toribyrne

[Guest guest]

Is there treatment for Mito disorder or are looking at testing just to be aware in case you plan on having more children?

 

 

Melony,

We are undergoing testing for a possible mito disorder. We have started out with labs followed by a MRI Spectroscopy of the brain. There will also be a spinal done and muscle biopsy. We are seeing Dr . Gibson in Austin at the Dell Childrens Hospital. Hebis mito/geneticist. There is also a Dr. Koenig in Houston. Rakes about 3-6 months to get into these doctors. Best of luck. 

Bohac

, TxSent from my iPhone

 

Hi I am a mom of a son with ASD. How would he and I get tested for a mitochondrial disorder?

[Guest guest]

, what dietary intervention are you referring to? GFCF, soy free, etc.? enzymes? probiotics? Supplements?

,

We see Dr. Frye at UT Physicians in Houston( In the same office as Dr. Koenig that mentioned). He will take a very thorough history and tosses nothing you say aside. Then he tailors testing to your childs situation. we started with about a years worth of blood and urine testing. In my son's case, while those tests did show dysfunction of the mitochondria, none were outright conclusive. We did the muscle biopsy at Memorial Hermann. The results on that showed significant dysfunction ( but not bad enough for a "disease" diagnosis). They do testing on the initial fresh sample, but take enough to grow some more tissue and freeze for later testing so they do not have to take more samples.

In my review of my son's history and discussion with Dr. Frye, we belive that if testing had been done when he was younger, before nutritional and biomedical intervention, we probably would have had a "disease" diagnosis. We had some of the same or similar testing done when he was younger that showed much worse cellular function than today, after biomedical. The doctors at the time just didn't know enough about what we were seeing to diagnose or send us to the right doctor ( I do not blame them, mitochondrial disease is a relatively new field with much to be learned today. Specialists are few and far between). They did know enough that he needed help, and as it stands today, the only help for mitochondrial disease is nutrition. Dr. Frye did say to me "the earlier you start nutritional intervention in mitochondrial disease the better the outcome". I think my son is a testament to that. While he still has many problems, I know of many children who have not

had the benefit of dietary and nutritional intervention who have continued to decline, where we have seen improvements in my son's health.

As said, it takes months to get in to see these doctors. Make an intial appointment now, and a followup appt about three months from the initial at the same time if they will let you. Once you are a patient, it is a little easier to get an appt, but not much.

>

> Hi I am a mom of a son with ASD. How would he and I get tested for a mitochondrial disorder?

>

[Guest guest]

The information below is from my friend whose three boys have mito. We are in the Houston area. If you need to get in touch with her I'll be glad to connect you.Hands down, the BEST place to go for a Mito evaluation is the Neurometabolic and Mitochondrial clinic at Memorial Hermann Hospital downtown. It is at the neurology clinic in the UT Medical building across the street from the hospital. The nurse there is named LaKeesha Minor and her phone number is . Call her and she will get you set up with an appt. Dr Koenig is the neurologist in the clinic and

she is wonderful...cares about the kids and has a great bedside manner.

If they want more information, they can go to the Memorial Hermann website and click on Children's Services and then Neurosciences (or something like that) at the left and get more information.This is one of a handful of Mitochondrial clinics in the US and she has patients from as far away as Australia come see her. We love her and are so lucky to have her in our own backyard. The other placed that have renowned Mito clinics are Atlanta, Cleveland, Boston, Seattle, Pittsburg, and New York. I can get you contact information for any of those clinics, but this one here in Houston is in state for them and takes Medicaid. Plus, the staff is wonderful and I would remain a patient of hers even if she left and went elsewhere.Hope this helps. I am more than happy to help in any other way I can. Please feel free to pass along my contact information if that would help.To: Texas-Autism-Advocacy Sent: Tue, August 3, 2010 9:46:40 PMSubject: Mitochondrial disorder test

Hi I am a mom of a son with ASD. How would he and I get tested for a mitochondrial disorder?