Re: Emotional Dilemma

[Guest guest]

Darlene,

Your child can't keep up because of his Mito-Disease. Unfortunately as he grows more problems will probably develop. Don't feel like an outcast. I went for 10 years with Dr. not believing me, because Christiopher looked so good. I knew thier was something wrong with him. It took everything out of me to keep fighting for him. I was being accused of making him feel sick, because I was treating him like he was sick.

These years when the exercise intolerance robbs your child from freedom of play and freedom of keeping up with others breaks our hearts as mothers, and in my case was just a symptom of what was around the corner. Your child is suffering froma real disease, that can be very frightening..we all live with that fear. Some children present worse, but that doesn't expell us. Our kids are sick too, and we read posts and list questions to learn.

Just My Feelings

Robin

[Guest guest]

Darlene,

Your child can't keep up because of his Mito-Disease. Unfortunately as he grows more problems will probably develop. Don't feel like an outcast. I went for 10 years with Dr. not believing me, because Christiopher looked so good. I knew thier was something wrong with him. It took everything out of me to keep fighting for him. I was being accused of making him feel sick, because I was treating him like he was sick.

These years when the exercise intolerance robbs your child from freedom of play and freedom of keeping up with others breaks our hearts as mothers, and in my case was just a symptom of what was around the corner. Your child is suffering froma real disease, that can be very frightening..we all live with that fear. Some children present worse, but that doesn't expell us. Our kids are sick too, and we read posts and list questions to learn.

Just My Feelings

Robin

[Guest guest]

In a message dated 6/19/02 8:52:09 AM Pacific Daylight Time, cbach@...

writes:

<< Take you child's symptoms seriously, no matter how minor they appear to

others to be. Just because my kids look fine...I am still as heartbroken as

any other parent on here when I see them with their own physical struggles

that others wouldn't or couldn't see...I know eventually my youngest may not

be able to compete with his peers as the level of competition

increases....that is holding me back from letting him compete now.....should

I? who knows..... I can only advocate and inform. And like every other

parent on this list, keep praying for lots of " good days. "

>>

Carol, thanks for reiterating what I already knew. It always feels better to

have that kind of reinforcement of " mommy intuition. "

Dena

[Guest guest]

Re: Emotional Dilemma

Darlene,Your child can't keep up because of his Mito-Disease. Unfortunately as he grows more problems will probably develop. Don't feel like an outcast. I went for 10 years with Dr. not believing me, because Christiopher looked so good. I knew thier was something wrong with him. It took everything out of me to keep fighting for him. I was being accused of making him feel sick, because I was treating him like he was sick.These years when the exercise intolerance robbs your child from freedom of play and freedom of keeping up with others breaks our hearts as mothers, and in my case was just a symptom of what was around the corner. Your child is suffering froma real disease, that can be very frightening..we all live with that fear. Some children present worse, but that doesn't expell us. Our kids are sick too, and we read posts and list questions to learn.Just My FeelingsRobin Please contact mito-owner with any problems or questions.

[Guest guest]

Thanks Robin,

Some days are harder than others. I know that I am not the same person 10 years ago and I don't think that I will ever be the same again. I think most of the emotional baggage like you said comes from the doctors making you feel this you are looney. When we received the report about J.D. it was like reading about another child. You wanted to know what was wrong but you are not always capable of accepting. and I have been married 28 years and we were not suppose to have kids. We had to wait 13 years for J.D. is a wonderful husband (most of the time) and he was in complete denial the first year. The years of the medical field treating you like an outcast catches up with you. Dr. Shoffner apologized for the other doctors. That helps a little with the psychological healing process. This is part of the reason to have more people aware. I have experienced teachers not believing me and seeing for their self J.D.'s fatigue. Maybe part of my dilemma is not accepting that J.D. might progress.

Thanks for your help.

Darlene

Re: Emotional Dilemma

Darlene,Your child can't keep up because of his Mito-Disease. Unfortunately as he grows more problems will probably develop. Don't feel like an outcast. I went for 10 years with Dr. not believing me, because Christiopher looked so good. I knew thier was something wrong with him. It took everything out of me to keep fighting for him. I was being accused of making him feel sick, because I was treating him like he was sick.These years when the exercise intolerance robbs your child from freedom of play and freedom of keeping up with others breaks our hearts as mothers, and in my case was just a symptom of what was around the corner. Your child is suffering froma real disease, that can be very frightening..we all live with that fear. Some children present worse, but that doesn't expell us. Our kids are sick too, and we read posts and list questions to learn.Just My FeelingsRobin Please contact mito-owner with any problems or questions.

[Guest guest]

Darlene, You know what? Sometimes after reading about children with your son's diagnosis, i feel eerily "lucky" that emmy's symptoms are so obvious----i was speaking with one of her nurses yesterday and i said how much harder it would be if i had to continually fight with people to get them to see how sick she is!(it's hard enough already!)

please keep talking and posting and never feel guilty about your emotions --all of these diagnoses are horrible to accept and all of our children are beautiful. We thank God every day for these angels but that does not make any of this any more fair!

mary

Darlene Graham wrote:

I have been on line for about 2 months. My son has been suspected with a mito disorder for almost 4 years. His confirmation was this year. I am glad that people view their opinions whether it be politically correct/incorrect or totally different from mine, that is how we learn. This disease/disorder is not easily defined. I appreciate everyone's views and have learned a great deal of information and helpful web sites.

My dilemma is when someone posts that their child basically needs around-the-clock care and my son can still walk most of the time except for distances and he can pretty much take care of himself with pacing. Although what I go through is real and can be progressive, I feel awkward about posting regarding my situation. No one has ever made me feel this way. I feel this way because part of me would like to see J.D. keep up with his peers and part of me feels that since he is more mobile that I should be more thankful.

Sometimes I struggle with this dilemma, sometimes I feel woe is me and sometimes I feel grateful that it is not at its worse.

Thanks for listening.

Darlene

Please contact mito-owner with any problems or questions.

[Guest guest]

Darlene,

I think what I am hearing you say is since your child is higher

functioning, at this point in his life, you feel that you " should " be

grateful he is in such good shape and not have the feelings you

have. Or least not express them to a group of parents with very

debilitated children.

Actually, these very feelings are also quite normal and par for the

situation we find ourselves.

Spencer is 15 months old going on 7 months developmentally. He just

starting keeping solids down. He is ataxic. Has nystagmus. Low

vocal skills. Has seizure. Among other things.

I have a 5 yo that appears quite garden variety. He can jump, run,

spit, tell dumb jokes, laugh, and drool for the fun of it to gross

out Mama with the best of the other 5 yos. He has very mild

developmental delays that almost seem rediculous to even talk about

considering Spencers condition. I almost feel like apologizing that

Trevor has an IEP for kindergarden. What can't he do? He can't

skip, gallop, hop, balance on one foot for more that 2 or 3 seconds

(should be 5), or jump from the second step without crashing. He

also struggles with cutting and holding a pencil properly. I am very

glad the OT caught these things and Trevor is getting help. But

these issues won't stop him from being an Architect.

Through reading these posts regarding protein digestion " allergies "

and muscle cramps among other issues, the Docs stated they want to

also perform the ERG on Trevor, too. Could Trevor have a high

functioning beginning stages disorder within the mito family?

Considering the genetics involved with some of these disorders, yes.

I, also, have have some very interesting aspects to my body that make

the Docs curious about me since I am the Mom. But I am also high

functioning.

I understand your fears about discussing your issues when others have

children that are so much more debilitated. I wonder (as does

Trevor) if his condition will deteriorate to Spencers condition one

day. Hard to tell withough a dx.

Please continue to share. Thank you for sharing these feelings. The

feelings you mentioned are just as important to discuss as the

feelings I would have regarding my fears for Spencers condition.

Hugs,

Bec

> My dilemma is when someone posts that their child basically

needs around-the-clock care and my son can still walk most of the

time except for distances and he can pretty much take care of himself

with pacing. Although what I go through is real and can be

progressive, I feel awkward about posting regarding my situation. No

one has ever made me feel this way. I feel this way because part of

me would like to see J.D. keep up with his peers and part of me feels

that since he is more mobile that I should be more thankful.

> Sometimes I struggle with this dilemma, sometimes I feel woe is

me and sometimes I feel grateful that it is not at its worse.

> Thanks for listening.

> Darlene

[Guest guest]

Darlene.......

OK....I'll throw my two cents in here too!

I have two sons with mito. To look at them, you wouldn't know it. Athletes.....pretty funny...their Dad (my Ex) was always furious why they didn't want to play sports or were so horrible at it. It caused tremendous problems between us. One of my children is more affected than the other physically. The least noticable (my oldest - 13) has had a marked decrease in his neurological abilities in the last six months....but again....you wouldn't know it. My youngest, Neal is 8 going on 9 and rides his own horse and has been asked to join the show team at his barn to compete around the county. Amazing for a kid that can't walk around the mall or sit up all day in school.

Convincing pediatricians and even other family members to make sure they get enough rest, eat regularly and if, God forbid, they start to vomit...get them to an ER right away has been an ongoing battle. "Kids don't go to the hospital when they throw up!".....yeah right....they've almost died because a pediatrician thought I was ridiculous.

Take you child's symptoms seriously, no matter how minor they appear to others to be. Just because my kids look fine...I am still as heartbroken as any other parent on here when I see them with their own physical struggles that others wouldn't or couldn't see...I know eventually my youngest may not be able to compete with his peers as the level of competition increases....that is holding me back from letting him compete now.....should I? who knows..... I can only advocate and inform. And like every other parent on this list, keep praying for lots of "good days."

I continue to be amazed at the level of compassion, understanding and support I receive online from this group...no matter how affected my children are. You have every right to grieve, as we all do....

Carol

[Guest guest]

Darlene.......

OK....I'll throw my two cents in here too!

I have two sons with mito. To look at them, you wouldn't know it. Athletes.....pretty funny...their Dad (my Ex) was always furious why they didn't want to play sports or were so horrible at it. It caused tremendous problems between us. One of my children is more affected than the other physically. The least noticable (my oldest - 13) has had a marked decrease in his neurological abilities in the last six months....but again....you wouldn't know it. My youngest, Neal is 8 going on 9 and rides his own horse and has been asked to join the show team at his barn to compete around the county. Amazing for a kid that can't walk around the mall or sit up all day in school.

Convincing pediatricians and even other family members to make sure they get enough rest, eat regularly and if, God forbid, they start to vomit...get them to an ER right away has been an ongoing battle. "Kids don't go to the hospital when they throw up!".....yeah right....they've almost died because a pediatrician thought I was ridiculous.

Take you child's symptoms seriously, no matter how minor they appear to others to be. Just because my kids look fine...I am still as heartbroken as any other parent on here when I see them with their own physical struggles that others wouldn't or couldn't see...I know eventually my youngest may not be able to compete with his peers as the level of competition increases....that is holding me back from letting him compete now.....should I? who knows..... I can only advocate and inform. And like every other parent on this list, keep praying for lots of "good days."

I continue to be amazed at the level of compassion, understanding and support I receive online from this group...no matter how affected my children are. You have every right to grieve, as we all do....

Carol

[Guest guest]

Dena,

First of all I switched from the Neurologist who asked him "Do your legs only hurt when your with your mom?"...Then I read some clinic notes. is a healthy looking boy whose mother has OCD.... Mother states has difficulty keeping up with peers, and complains about pain. I f this child is in as much pain as mother states he would not be functioning at the level he is. He does have a myopathy dx from a muscle biopsy performed in 1989. She wont believe me when I tell her Myopathies are painless.I feel his condition is "Static"...she won't accept that. I suggest family counseling.

I was so pissed off. I told her to come spend the weekend with us, then tell me he is OK.

I switched to a new Neurologist. Afraid another door was going to be slammed in my face, but I had made a promise to that I would fight for him until the day I died. The new neurologist was shocked..right off the bat she said there is really something wrong, and I think it is out of my league. She wanted a new muscle biopsy, but he had already had 2 frozen ones, that just showed Non-specific myopathy. So she ran more tests.instead. She kept saying its either Limb-Girdle or Mitochondrial. She sent us to a Cardiologist who dx Cardio-Myopathy. She sent us to and Endocronoligist who said there is something very odd going on , but didn't know what and wanted her to peruse testing.

All of a sudden started having seizures. He had an abnormal awake, drowsy, and sleep EEG.

Our Neurologist called me and apoligized fro the lack of care we had from other DR.s and said something that seemed to be affecting his who;e body was going on. She sent us for Ultra sound, and e found out he had Fatty Liver, and Liver Dysfunction. She thought for sure it was Mitochondrial. I then went online and found a number for the local UMDF. They gave me a phone number to call and this wonderful woman gave me Dr. Korsan's name. I gave it to his new Neurologist and we set up the appointment. Dr. Korson was then called by my son's pediatrician who told him Robin has OCD...

I thought it was going to end their, but Dr. Korson spent 4 hours with us. He listened went over every record. He knew we had been through hell, and told us was definitely ill. He sent us to Atlanta To see Dr. Shoffner, who agreed, and did a fresh tissue biopsy and several other tests.

has. Complex 1(zero activity), Oxidative Phosphorylation disease with Multi-Organ involvment.

He know has Autonomic Dysfunction, Gut Dysfunction, Migraines, Seizures, Periodic Aphasia, Hearing problems, Myopathy, Nueropathies, Liver Dysfunction, with Fatty Liver..and it goes on.

He now uses a powerchair for distances. He has to crawl up stairs, It's been a nightmare.

He is on 3 seizure Meds. and still has small partial focal motor seizures. He is on Protonix for reflux, sennokot for constipation, He is on a med to keep his tricylceroids down (they were 782..supposed to be from (25-115). Co Q 10, Vit E, B2, L-carnitine,

and Oxycontin for pain.

I switched pediatricians after the dx. I asked him why he felt it was so important that he tell all the doctors that saw that I had OCD? He said I have to give a family history. I said then why didn't you feel the need to tell them I also have Ulcerative colitis, Irritable bowel syndrome, and ulcers? He couldn't answer that. Then I ask why didn't you feel it was necessary to share his fathers history with the Dr.s...again nothing.!

I then said you know I would have rather had MSBP than have a son who had to go through this...and only to find out after all the work I did to find a disease I got one that Sucks...I didn't want this...I just wanted someone to help him !!

Sorry So long...It's been a hard road.

Robin

[Guest guest]

WOW!! what a horrendous journey you have been on Robin--every time i think what we went through trying to get a diagnosis for emmy was bad, i discover someone else with an even more terrible tale!

It insenses me to think someone like that pediatrician is practicing medicine! I am so glad you found our friend,Dr.korson.

mary

Middpowell@... wrote: Dena,First of all I switched from the Neurologist who asked him "Do your legs only hurt when your with your mom?"...Then I read some clinic notes. is a healthy looking boy whose mother has OCD.... Mother states has difficulty keeping up with peers, and complains about pain. I f this child is in as much pain as mother states he would not be functioning at the level he is. He does have a myopathy dx from a muscle biopsy performed in 1989. She wont believe me when I tell her Myopathies are painless.I feel his condition is "Static"...she won't accept that. I suggest family counseling.I was so pissed off. I told her to come spend the weekend with us, then tell me he is OK.I switched to a new Neurologist. Afraid another door was going to be slammed in my face, but I had made a promise to that I would fight for him until the day I died. The new neurologist was shocked..right off the bat she said there is really something wrong, and I think it is out of my league. She wanted a new muscle biopsy, but he had already had 2 frozen ones, that just showed Non-specific myopathy. So she ran more tests.instead. She kept saying its either Limb-Girdle or Mitochondrial. She sent us to a Cardiologist who dx Cardio-Myopathy. She sent us to and Endocronoligist who said there is something very odd going on , but didn't know what and wanted her to peruse testing. All of a sudden started having seizures. He had an abnormal awake, drowsy, and sleep EEG. Our Neurologist called me and apoligized fro the lack of care we had from other DR.s and said something that seemed to be affecting his who;e body was going on. She sent us for Ultra sound, and e found out he had Fatty Liver, and Liver Dysfunction. She thought for sure it was Mitochondrial. I then went online and found a number for the local UMDF. They gave me a phone number to call and this wonderful woman gave me Dr. Korsan's name. I gave it to his new Neurologist and we set up the appointment. Dr. Korson was then called by my son's pediatrician who told him Robin has OCD...I thought it was going to end their, but Dr. Korson spent 4 hours with us. He listened went over every record. He knew we had been through hell, and told us was definitely ill. He sent us to Atlanta To see Dr. Shoffner, who agreed, and did a fresh tissue biopsy and several other tests. has. Complex 1(zero activity), Oxidative Phosphorylation disease with Multi-Organ involvment.He know has Autonomic Dysfunction, Gut Dysfunction, Migraines, Seizures, Periodic Aphasia, Hearing problems, Myopathy, Nueropathies, Liver Dysfunction, with Fatty Liver..and it goes on.He now uses a powerchair for distances. He has to crawl up stairs, It's been a nightmare.He is on 3 seizure Meds. and still has small partial focal motor seizures. He is on Protonix for reflux, sennokot for constipation, He is on a med to keep his tricylceroids down (they were 782..supposed to be from (25-115). Co Q 10, Vit E, B2, L-carnitine,and Oxycontin for pain.I switched pediatricians after the dx. I asked him why he felt it was so important that he tell all the doctors that saw that I had OCD? He said I have to give a family history. I said then why didn't you feel the need to tell them I also have Ulcerative colitis, Irritable bowel syndrome, and ulcers? He couldn't answer that. Then I ask why didn't you feel it was necessary to share his fathers history with the Dr.s...again nothing.!I then said you know I would have rather had MSBP than have a son who had to go through this...and only to find out after all the work I did to find a disease I got one that Sucks...I didn't want this...I just wanted someone to help him !!Sorry So long...It's been a hard road.Robin Please contact mito-owner with any problems or questions.

[Guest guest]

WOW!! what a horrendous journey you have been on Robin--every time i think what we went through trying to get a diagnosis for emmy was bad, i discover someone else with an even more terrible tale!

It insenses me to think someone like that pediatrician is practicing medicine! I am so glad you found our friend,Dr.korson.

mary

Middpowell@... wrote: Dena,First of all I switched from the Neurologist who asked him "Do your legs only hurt when your with your mom?"...Then I read some clinic notes. is a healthy looking boy whose mother has OCD.... Mother states has difficulty keeping up with peers, and complains about pain. I f this child is in as much pain as mother states he would not be functioning at the level he is. He does have a myopathy dx from a muscle biopsy performed in 1989. She wont believe me when I tell her Myopathies are painless.I feel his condition is "Static"...she won't accept that. I suggest family counseling.I was so pissed off. I told her to come spend the weekend with us, then tell me he is OK.I switched to a new Neurologist. Afraid another door was going to be slammed in my face, but I had made a promise to that I would fight for him until the day I died. The new neurologist was shocked..right off the bat she said there is really something wrong, and I think it is out of my league. She wanted a new muscle biopsy, but he had already had 2 frozen ones, that just showed Non-specific myopathy. So she ran more tests.instead. She kept saying its either Limb-Girdle or Mitochondrial. She sent us to a Cardiologist who dx Cardio-Myopathy. She sent us to and Endocronoligist who said there is something very odd going on , but didn't know what and wanted her to peruse testing. All of a sudden started having seizures. He had an abnormal awake, drowsy, and sleep EEG. Our Neurologist called me and apoligized fro the lack of care we had from other DR.s and said something that seemed to be affecting his who;e body was going on. She sent us for Ultra sound, and e found out he had Fatty Liver, and Liver Dysfunction. She thought for sure it was Mitochondrial. I then went online and found a number for the local UMDF. They gave me a phone number to call and this wonderful woman gave me Dr. Korsan's name. I gave it to his new Neurologist and we set up the appointment. Dr. Korson was then called by my son's pediatrician who told him Robin has OCD...I thought it was going to end their, but Dr. Korson spent 4 hours with us. He listened went over every record. He knew we had been through hell, and told us was definitely ill. He sent us to Atlanta To see Dr. Shoffner, who agreed, and did a fresh tissue biopsy and several other tests. has. Complex 1(zero activity), Oxidative Phosphorylation disease with Multi-Organ involvment.He know has Autonomic Dysfunction, Gut Dysfunction, Migraines, Seizures, Periodic Aphasia, Hearing problems, Myopathy, Nueropathies, Liver Dysfunction, with Fatty Liver..and it goes on.He now uses a powerchair for distances. He has to crawl up stairs, It's been a nightmare.He is on 3 seizure Meds. and still has small partial focal motor seizures. He is on Protonix for reflux, sennokot for constipation, He is on a med to keep his tricylceroids down (they were 782..supposed to be from (25-115). Co Q 10, Vit E, B2, L-carnitine,and Oxycontin for pain.I switched pediatricians after the dx. I asked him why he felt it was so important that he tell all the doctors that saw that I had OCD? He said I have to give a family history. I said then why didn't you feel the need to tell them I also have Ulcerative colitis, Irritable bowel syndrome, and ulcers? He couldn't answer that. Then I ask why didn't you feel it was necessary to share his fathers history with the Dr.s...again nothing.!I then said you know I would have rather had MSBP than have a son who had to go through this...and only to find out after all the work I did to find a disease I got one that Sucks...I didn't want this...I just wanted someone to help him !!Sorry So long...It's been a hard road.Robin Please contact mito-owner with any problems or questions.

[Guest guest]

Robin,

It is amazing how our stories parallel. I agree with you, the MSBP would be better to deal with than what our sons go through. J.D.'s 1st neurologist said that J.D. had mild CP. When I told him after therapy that J.D. was collapsing before we made it to the car, he said, "What are they doing in therapy." Then according to the doctor J.D.'s muscle problems were psychosomatic. Psychological problems are a symptom. I was even questioning myself if I knew how to take a temperature. When the 2nd neurologist came in to see J.D., after reading the records, I'm sure he thought he would just to his duty, but after he examined J.D., he told me that something was definitely wrong. Wow, we found a neurologist that was able to help. Then he had a family emergency and took off 6 months. The 3rd neurologist, after my long letter to the CEO of the hospital, was not happy with me His last words were, "I don't think you think I can help your son!" I replied, "To be honest with you, no." Well, I was right. The 4th neurologist that the hospital used Children's Miracle Network money to come in and look at J.D. said there was no doubt in his mind something was wrong with J.D. He said that were some things than just cannot be faked. He helped us to get in touch with the 5th neurologist that thankfully steered us to Dr. Shoffner.

Last year, I wrote a 9-page letter to have purged from J.D.'s records any information that could do J.D. harm for future medical help.

We received one envelope from the record's clerk that said that it contained information that the parents should not read. Of course, I read it and like you it was the mom. J.D. was different with the mom.

Thankfully, your son has you because I too have been J.D.'s strongest advocate. It is actually quite humorous, at school he said Mom, all I have to say is my "Mom says" and they don't question me. My goal is to get to the point where he doesn't have to say my mom said but to listen to J.D. at what he says. Sometimes when he gets tired, his speech will slur and it takes patience to listen to him.

Thanks Robin for sharing your story

Darlene

[Guest guest]

Robin,

It is amazing how our stories parallel. I agree with you, the MSBP would be better to deal with than what our sons go through. J.D.'s 1st neurologist said that J.D. had mild CP. When I told him after therapy that J.D. was collapsing before we made it to the car, he said, "What are they doing in therapy." Then according to the doctor J.D.'s muscle problems were psychosomatic. Psychological problems are a symptom. I was even questioning myself if I knew how to take a temperature. When the 2nd neurologist came in to see J.D., after reading the records, I'm sure he thought he would just to his duty, but after he examined J.D., he told me that something was definitely wrong. Wow, we found a neurologist that was able to help. Then he had a family emergency and took off 6 months. The 3rd neurologist, after my long letter to the CEO of the hospital, was not happy with me His last words were, "I don't think you think I can help your son!" I replied, "To be honest with you, no." Well, I was right. The 4th neurologist that the hospital used Children's Miracle Network money to come in and look at J.D. said there was no doubt in his mind something was wrong with J.D. He said that were some things than just cannot be faked. He helped us to get in touch with the 5th neurologist that thankfully steered us to Dr. Shoffner.

Last year, I wrote a 9-page letter to have purged from J.D.'s records any information that could do J.D. harm for future medical help.

We received one envelope from the record's clerk that said that it contained information that the parents should not read. Of course, I read it and like you it was the mom. J.D. was different with the mom.

Thankfully, your son has you because I too have been J.D.'s strongest advocate. It is actually quite humorous, at school he said Mom, all I have to say is my "Mom says" and they don't question me. My goal is to get to the point where he doesn't have to say my mom said but to listen to J.D. at what he says. Sometimes when he gets tired, his speech will slur and it takes patience to listen to him.

Thanks Robin for sharing your story

Darlene

[Guest guest]

Robin

I read your post, and I am shaking my head over and over as I go down the list. I am sorry you have been through so much but atleast both you and your son are in good hands now with Dr. Korson. How long have you been seeing him? We started seeing Dr. Korson last October, and he has been wonderful.

We went to Atlanta to see Dr. Shoffner in February, and as a result, received a confirmed diagnosis of Complex 1 and Co Q 10 deficiency. I truly know how you feel except we have been fortunate with the majority of our docs including my son's pedi who has been wonderful.

I hope everyone in the New England area will be able to get together soon. I also hope you are feeling better too. You have had a rough go of it.

Sincerely,

Bridget Mom To Owen "water boy" Willis, 3.5 yrs, Complex 1 and Co Q 10 deficiency, PDD/NOS and the world's biggest belly laughand , 1 yr, developing well (thank God, everyday)

Re: Emotional Dilemma

Dena,First of all I switched from the Neurologist who asked him "Do your legs only hurt when your with your mom?"...Then I read some clinic notes. is a healthy looking boy whose mother has OCD.... Mother states has difficulty keeping up with peers, and complains about pain. I f this child is in as much pain as mother states he would not be functioning at the level he is. He does have a myopathy dx from a muscle biopsy performed in 1989. She wont believe me when I tell her Myopathies are painless.I feel his condition is "Static"...she won't accept that. I suggest family counseling.I was so pissed off. I told her to come spend the weekend with us, then tell me he is OK.I switched to a new Neurologist. Afraid another door was going to be slammed in my face, but I had made a promise to that I would fight for him until the day I died. The new neurologist was shocked..right off the bat she said there is really something wrong, and I think it is out of my league. She wanted a new muscle biopsy, but he had already had 2 frozen ones, that just showed Non-specific myopathy. So she ran more tests.instead. She kept saying its either Limb-Girdle or Mitochondrial. She sent us to a Cardiologist who dx Cardio-Myopathy. She sent us to and Endocronoligist who said there is something very odd going on , but didn't know what and wanted her to peruse testing. All of a sudden started having seizures. He had an abnormal awake, drowsy, and sleep EEG. Our Neurologist called me and apoligized fro the lack of care we had from other DR.s and said something that seemed to be affecting his who;e body was going on. She sent us for Ultra sound, and e found out he had Fatty Liver, and Liver Dysfunction. She thought for sure it was Mitochondrial. I then went online and found a number for the local UMDF. They gave me a phone number to call and this wonderful woman gave me Dr. Korsan's name. I gave it to his new Neurologist and we set up the appointment. Dr. Korson was then called by my son's pediatrician who told him Robin has OCD...I thought it was going to end their, but Dr. Korson spent 4 hours with us. He listened went over every record. He knew we had been through hell, and told us was definitely ill. He sent us to Atlanta To see Dr. Shoffner, who agreed, and did a fresh tissue biopsy and several other tests. has. Complex 1(zero activity), Oxidative Phosphorylation disease with Multi-Organ involvment.He know has Autonomic Dysfunction, Gut Dysfunction, Migraines, Seizures, Periodic Aphasia, Hearing problems, Myopathy, Nueropathies, Liver Dysfunction, with Fatty Liver..and it goes on.He now uses a powerchair for distances. He has to crawl up stairs, It's been a nightmare.He is on 3 seizure Meds. and still has small partial focal motor seizures. He is on Protonix for reflux, sennokot for constipation, He is on a med to keep his tricylceroids down (they were 782..supposed to be from (25-115). Co Q 10, Vit E, B2, L-carnitine,and Oxycontin for pain.I switched pediatricians after the dx. I asked him why he felt it was so important that he tell all the doctors that saw that I had OCD? He said I have to give a family history. I said then why didn't you feel the need to tell them I also have Ulcerative colitis, Irritable bowel syndrome, and ulcers? He couldn't answer that. Then I ask why didn't you feel it was necessary to share his fathers history with the Dr.s...again nothing.!I then said you know I would have rather had MSBP than have a son who had to go through this...and only to find out after all the work I did to find a disease I got one that Sucks...I didn't want this...I just wanted someone to help him !!Sorry So long...It's been a hard road.Robin Please contact mito-owner with any problems or questions.

[Guest guest]

Thanks ,

It's so hard to think back on all that. I'm glad I got it out.

Robin

[Guest guest]

Thanks ,

It's so hard to think back on all that. I'm glad I got it out.

Robin

[Guest guest]

Thanks ,

It's so hard to think back on all that. I'm glad I got it out.

Robin

[Guest guest]

Darlene,

Thanks for reading my post. It's amazing all the BS we ahve to go through just to help our children is working with a new therapist, who speciality is children with life-threatening diseases. She suggested they write letters to his old Dr's to tell them how they made him feel, and how hard it was not being believed.

It has taken a lot of his anger away.

Robin

[Guest guest]

Darlene,

Thanks for reading my post. It's amazing all the BS we ahve to go through just to help our children is working with a new therapist, who speciality is children with life-threatening diseases. She suggested they write letters to his old Dr's to tell them how they made him feel, and how hard it was not being believed.

It has taken a lot of his anger away.

Robin

[Guest guest]

Darlene,

Thanks for reading my post. It's amazing all the BS we ahve to go through just to help our children is working with a new therapist, who speciality is children with life-threatening diseases. She suggested they write letters to his old Dr's to tell them how they made him feel, and how hard it was not being believed.

It has taken a lot of his anger away.

Robin

[Guest guest]

Hi Bridget,

We started seeing DR Korson in April of 2001. So it's only been a littlle over a year.

I plan on going to the next New England Chapter meeting, and am interested in Jeff's idea to meet on a Sunday somewhere.

Robin

[Guest guest]

Hi Bridget,

We started seeing DR Korson in April of 2001. So it's only been a littlle over a year.

I plan on going to the next New England Chapter meeting, and am interested in Jeff's idea to meet on a Sunday somewhere.

Robin

[Guest guest]

Hi Bridget,

We started seeing DR Korson in April of 2001. So it's only been a littlle over a year.

I plan on going to the next New England Chapter meeting, and am interested in Jeff's idea to meet on a Sunday somewhere.

Robin

[Guest guest]

Good Morning Robin,

We are in the same boat, since we now have something in writing, there is a lot of medical "professions" (not the word I would give some of them) are eating humble pie. I believe is that anger guided in the right direction that have gotten us this far. Some of my energy came from this preacher on television talking about how to use anger. He used Florence Nightingale as an example. He said we think of her as this loving and kind nurse, but when she walked into a hospital, they would be nervous. She used her anger to make hospitals better. We can use this anger to fuel our energy to help make people aware of this illness.

I am glad you found a good therapist for .

The following are web sites that may help - he had a successful case against the education system. The family was told that their child could not be educated. They went to a private school for special education and their child received a diploma. If you and I listened to the "professionals" we would not have the help for and J.D.

slaw: From Emotions To Advocacy - The Special Education Survival Guide: http://www.wrightslaw.com/advoc/nwltr/2002/nl.0422.htm

slaw - Special Ed Advocate Newsletter, April 22, 2002 (Issue 161)

http://www.fetaweb.com/

Have a Great Day!

Darlene

Re: Emotional Dilemma

Darlene,Thanks for reading my post. It's amazing all the BS we ahve to go through just to help our children is working with a new therapist, who speciality is children with life-threatening diseases. She suggested they write letters to his old Dr's to tell them how they made him feel, and how hard it was not being believed.It has taken a lot of his anger away.Robin Please contact mito-owner with any problems or questions.