RE: mito question

[Guest guest]

Dear Darla, Kim and :

Thank you for responding to my question. I really appreciate all the information, encouragement and reality of this disorder. I knew something wasn't right when I was pregnant. He wouldn't move and was breech the entire pregnancy. He was so stubborn in his position that when he was born c-section, he had my rib mark going down the middle of his head. I also contracted 1-2 min for 2 weeks and finally went into active labor 37 weeks 1 day. They thought he would be huge do to 1 high glucose test which they tested me at 32 weeks and didn't tell me they were going to so I had eaten that morning. The rest of the time I tested my sugar and it was fine. He was little..6 lbs and 3 oz 18 inches. He stopped breathing when he came out and was rushed into the NICU once they got him breathing again but his respirations were fluctuating they kept him 3 days. He wouldn't latch but he took some formula. He was very floppy and we knew that he didn't look right at birth but we were naïve and just kept chugging along. Until we took him in for 4 months shots and the doc was completely taken back w/ his head..it was huge...he was so little and had this big head w/ grooves where his veins had carved into his skull bone...we still have them and some are quite prominent. We found that he had hydrocephelus but that it would resolve itself w/o a shunt. His head..the soft spot(fontannel) didn't close until he was 2 yrs old. He didn't roll over until he was 7 months and walked at 17 months. We still have problems w/ growing. He is 25 lbs on the dot! and I think 38 inches. We still can wear most 18 months clothes and is very difficult to get in a meal but I manage w/ following him and I use to puree our food but don't anymore to encourage the chewing which he can if he wants to and isn't tired because that will come quick..his mouth gets tired w/ the chewing and he spits it out..which is a lot better than what he did...trying to swallowing w/o really chewing and throwing everything up! And he is very quick on his feet know trying to keep up w/ everyone but sits until he gets a 2nd wind. His heart is great. And he gets pt, ot and speech weekly. His pt though mentioned she noticed he was having more tremors. I think this is why I posted the question. We have problems when it comes to trying to get his clothes off..he just doesn't seem to have the muscle to do it along w/ going down stairs... Anyway, this is where we are and I am praying he improves and something is found to fix the missing links in our kids' cells.

love to all,

Mom to Zachary 3 yrs old (SCAD Variant and Complex I and IV)

4 1/2 yrs old not tested

mito question

I was wondering about how all your children started out in life. Did they have some problems but overall were ok and then as time went by they started to deteriorate? Zachary is 3 and overall I think he does real good. We have developmental delay, sensory problems, his lack of interest in eating, muscle weakness (more w/ strenous activity like stairs which he can't do), spinal lordosis but smart as a whip. he has complex I and IV and has a mutated SCAD gene which gives him a mild scad variant or deficiency. I am hoping that someone can give me insite on maybe what to expect. Will he continue to make slow progress or will he make all these milestones only to lose them. What age did your children or you begin to regress? lose more motor function or have increased lack of muscle control..more weakness? So far our docs say that mito is so unstable that it depends on the child and eviromental factors. He only seems to get bad when he is sick w/ a virus but then we hospitalize him and those stays are getting less frequent. Please help and give some insight..I worry about what his future. He is such a bright, loving, energentic little boy and I hope never to see his smile disappear. Mom to Zachary 3 yrs old (SCAD Variant and Complex I and IV) 4 1/2 yrs old not tested and seems to be ok

[Guest guest]

Dear Darla, Kim and :

Thank you for responding to my question. I really appreciate all the information, encouragement and reality of this disorder. I knew something wasn't right when I was pregnant. He wouldn't move and was breech the entire pregnancy. He was so stubborn in his position that when he was born c-section, he had my rib mark going down the middle of his head. I also contracted 1-2 min for 2 weeks and finally went into active labor 37 weeks 1 day. They thought he would be huge do to 1 high glucose test which they tested me at 32 weeks and didn't tell me they were going to so I had eaten that morning. The rest of the time I tested my sugar and it was fine. He was little..6 lbs and 3 oz 18 inches. He stopped breathing when he came out and was rushed into the NICU once they got him breathing again but his respirations were fluctuating they kept him 3 days. He wouldn't latch but he took some formula. He was very floppy and we knew that he didn't look right at birth but we were naïve and just kept chugging along. Until we took him in for 4 months shots and the doc was completely taken back w/ his head..it was huge...he was so little and had this big head w/ grooves where his veins had carved into his skull bone...we still have them and some are quite prominent. We found that he had hydrocephelus but that it would resolve itself w/o a shunt. His head..the soft spot(fontannel) didn't close until he was 2 yrs old. He didn't roll over until he was 7 months and walked at 17 months. We still have problems w/ growing. He is 25 lbs on the dot! and I think 38 inches. We still can wear most 18 months clothes and is very difficult to get in a meal but I manage w/ following him and I use to puree our food but don't anymore to encourage the chewing which he can if he wants to and isn't tired because that will come quick..his mouth gets tired w/ the chewing and he spits it out..which is a lot better than what he did...trying to swallowing w/o really chewing and throwing everything up! And he is very quick on his feet know trying to keep up w/ everyone but sits until he gets a 2nd wind. His heart is great. And he gets pt, ot and speech weekly. His pt though mentioned she noticed he was having more tremors. I think this is why I posted the question. We have problems when it comes to trying to get his clothes off..he just doesn't seem to have the muscle to do it along w/ going down stairs... Anyway, this is where we are and I am praying he improves and something is found to fix the missing links in our kids' cells.

love to all,

Mom to Zachary 3 yrs old (SCAD Variant and Complex I and IV)

4 1/2 yrs old not tested

mito question

I was wondering about how all your children started out in life. Did they have some problems but overall were ok and then as time went by they started to deteriorate? Zachary is 3 and overall I think he does real good. We have developmental delay, sensory problems, his lack of interest in eating, muscle weakness (more w/ strenous activity like stairs which he can't do), spinal lordosis but smart as a whip. he has complex I and IV and has a mutated SCAD gene which gives him a mild scad variant or deficiency. I am hoping that someone can give me insite on maybe what to expect. Will he continue to make slow progress or will he make all these milestones only to lose them. What age did your children or you begin to regress? lose more motor function or have increased lack of muscle control..more weakness? So far our docs say that mito is so unstable that it depends on the child and eviromental factors. He only seems to get bad when he is sick w/ a virus but then we hospitalize him and those stays are getting less frequent. Please help and give some insight..I worry about what his future. He is such a bright, loving, energentic little boy and I hope never to see his smile disappear. Mom to Zachary 3 yrs old (SCAD Variant and Complex I and IV) 4 1/2 yrs old not tested and seems to be ok

[Guest guest]

,

I have to comment on your son's history and the similarities with my daughter's (Shenan's).

I was afraid she would be born without limbs since she rarely moved in utero.

I was borderline diabetic during the pregnancy.

I had a hard time starting into labor with both my youngest kids.

When she was born something was terribly wrong and she was hooked up to all sorts of machines for 2 days.

Both of my younger kids were swollen when they were born.

All but my oldest child quit breathing intermittantly in infancy.

Shenan couldn't stay latched on to breast feed. We thought it was because she was very tongue-tied and the same with her daughter, but Riley's Dr. said that had nothing to do with it, that it was a coordination or muscle strength issue. Her son, Corbin, also had latching problems and he wasn't tongue-tied hardly.

I can't remember now which of the kids/grandkids soft spot didn't go together for several years but it shocked me when we realized it.

Shenan was very stiff instead of floppy. She was also terrifyed of water so I could barely clean her.

She barely grew too until she was 5 or so and then was still small until around 11 when she suddenly put too much weight on. She had developed low thyroid problems by then.

When I was pregnant with her I craved green apples with salt. When she was little she would eat those and saltines exclusively if I let her! She had odd food desires, usually very little, but would want just one food exclusively. One day she ate a plastic cup! (Those clear brittle plastic disposable ones.)

She was way fast for her age with her speech and walking and potty training and riding a 2 wheeler, but she always wanted to be up with the older kids and grown up.

Now that she is a ripe old 29 she tells me she wished she could have been a kid. She says she doesn't know how to play!

And I am like Darla. Some of my life I've been so sick I could barely survive and other times I think I must be cured.

-----Original Message-----From: TIFFANY SOIGNOLI Sent: Tuesday, July 15, 2003 6:57 PMTo: Mito Subject: Re: mito question

Dear Darla, Kim and :

Thank you for responding to my question. I really appreciate all the information, encouragement and reality of this disorder. I knew something wasn't right when I was pregnant. He wouldn't move and was breech the entire pregnancy. He was so stubborn in his position that when he was born c-section, he had my rib mark going down the middle of his head. I also contracted 1-2 min for 2 weeks and finally went into active labor 37 weeks 1 day. They thought he would be huge do to 1 high glucose test which they tested me at 32 weeks and didn't tell me they were going to so I had eaten that morning. The rest of the time I tested my sugar and it was fine. He was little..6 lbs and 3 oz 18 inches. He stopped breathing when he came out and was rushed into the NICU once they got him breathing again but his respirations were fluctuating they kept him 3 days. He wouldn't latch but he took some formula. He was very floppy and we knew that he didn't look right at birth but we were naïve and just kept chugging along. Until we took him in for 4 months shots and the doc was completely taken back w/ his head..it was huge...he was so little and had this big head w/ grooves where his veins had carved into his skull bone...we still have them and some are quite prominent. We found that he had hydrocephelus but that it would resolve itself w/o a shunt. His head..the soft spot(fontannel) didn't close until he was 2 yrs old. He didn't roll over until he was 7 months and walked at 17 months. We still have problems w/ growing. He is 25 lbs on the dot! and I think 38 inches. We still can wear most 18 months clothes and is very difficult to get in a meal but I manage w/ following him and I use to puree our food but don't anymore to encourage the chewing which he can if he wants to and isn't tired because that will come quick..his mouth gets tired w/ the chewing and he spits it out..which is a lot better than what he did...trying to swallowing w/o really chewing and throwing everything up! And he is very quick on his feet know trying to keep up w/ everyone but sits until he gets a 2nd wind. His heart is great. And he gets pt, ot and speech weekly. His pt though mentioned she noticed he was having more tremors. I think this is why I posted the question. We have problems when it comes to trying to get his clothes off..he just doesn't seem to have the muscle to do it along w/ going down stairs... Anyway, this is where we are and I am praying he improves and something is found to fix the missing links in our kids' cells.

love to all,

Mom to Zachary 3 yrs old (SCAD Variant and Complex I and IV)

4 1/2 yrs old not tested

mito question

I was wondering about how all your children started out in life. Did they have some problems but overall were ok and then as time went by they started to deteriorate? Zachary is 3 and overall I think he does real good. We have developmental delay, sensory problems, his lack of interest in eating, muscle weakness (more w/ strenous activity like stairs which he can't do), spinal lordosis but smart as a whip. he has complex I and IV and has a mutated SCAD gene which gives him a mild scad variant or deficiency. I am hoping that someone can give me insite on maybe what to expect. Will he continue to make slow progress or will he make all these milestones only to lose them. What age did your children or you begin to regress? lose more motor function or have increased lack of muscle control..more weakness? So far our docs say that mito is so unstable that it depends on the child and eviromental factors. He only seems to get bad when he is sick w/ a virus but then we hospitalize him and those stays are getting less frequent. Please help and give some insight..I worry about what his future. He is such a bright, loving, energentic little boy and I hope never to see his smile disappear. Mom to Zachary 3 yrs old (SCAD Variant and Complex I and IV) 4 1/2 yrs old not tested and seems to be ok

[Guest guest]

Dear Kim:

Yes..he takes 500 mg carnitor daily..1/2 tsp..twice He also takes CoQ10 30mg/twice a day equallying 60mg and finally Riboflavin 4 times a day equallying 200mg..it's 50mg per dose.

mito question

I was wondering about how all your children started out in life. Did they have some problems but overall were ok and then as time went by they started to deteriorate? Zachary is 3 and overall I think he does real good. We have developmental delay, sensory problems, his lack of interest in eating, muscle weakness (more w/ strenous activity like stairs which he can't do), spinal lordosis but smart as a whip. he has complex I and IV and has a mutated SCAD gene which gives him a mild scad variant or deficiency. I am hoping that someone can give me insite on maybe what to expect. Will he continue to make slow progress or will he make all these milestones only to lose them. What age did your children or you begin to regress? lose more motor function or have increased lack of muscle control..more weakness? So far our docs say that mito is so unstable that it depends on the child and eviromental factors. He only seems to get bad when he is sick w/ a virus but then we hospitalize him and those stays are getting less frequent. Please help and give some insight..I worry about what his future. He is such a bright, loving, energentic little boy and I hope never to see his smile disappear. Mom to Zachary 3 yrs old (SCAD Variant and Complex I and IV) 4 1/2 yrs old not tested and seems to be ok

[Guest guest]

Dear Kim:

Yes..he takes 500 mg carnitor daily..1/2 tsp..twice He also takes CoQ10 30mg/twice a day equallying 60mg and finally Riboflavin 4 times a day equallying 200mg..it's 50mg per dose.

mito question

I was wondering about how all your children started out in life. Did they have some problems but overall were ok and then as time went by they started to deteriorate? Zachary is 3 and overall I think he does real good. We have developmental delay, sensory problems, his lack of interest in eating, muscle weakness (more w/ strenous activity like stairs which he can't do), spinal lordosis but smart as a whip. he has complex I and IV and has a mutated SCAD gene which gives him a mild scad variant or deficiency. I am hoping that someone can give me insite on maybe what to expect. Will he continue to make slow progress or will he make all these milestones only to lose them. What age did your children or you begin to regress? lose more motor function or have increased lack of muscle control..more weakness? So far our docs say that mito is so unstable that it depends on the child and eviromental factors. He only seems to get bad when he is sick w/ a virus but then we hospitalize him and those stays are getting less frequent. Please help and give some insight..I worry about what his future. He is such a bright, loving, energentic little boy and I hope never to see his smile disappear. Mom to Zachary 3 yrs old (SCAD Variant and Complex I and IV) 4 1/2 yrs old not tested and seems to be ok

[Guest guest]

Dear Kim:

Yes..he takes 500 mg carnitor daily..1/2 tsp..twice He also takes CoQ10 30mg/twice a day equallying 60mg and finally Riboflavin 4 times a day equallying 200mg..it's 50mg per dose.

mito question

I was wondering about how all your children started out in life. Did they have some problems but overall were ok and then as time went by they started to deteriorate? Zachary is 3 and overall I think he does real good. We have developmental delay, sensory problems, his lack of interest in eating, muscle weakness (more w/ strenous activity like stairs which he can't do), spinal lordosis but smart as a whip. he has complex I and IV and has a mutated SCAD gene which gives him a mild scad variant or deficiency. I am hoping that someone can give me insite on maybe what to expect. Will he continue to make slow progress or will he make all these milestones only to lose them. What age did your children or you begin to regress? lose more motor function or have increased lack of muscle control..more weakness? So far our docs say that mito is so unstable that it depends on the child and eviromental factors. He only seems to get bad when he is sick w/ a virus but then we hospitalize him and those stays are getting less frequent. Please help and give some insight..I worry about what his future. He is such a bright, loving, energentic little boy and I hope never to see his smile disappear. Mom to Zachary 3 yrs old (SCAD Variant and Complex I and IV) 4 1/2 yrs old not tested and seems to be ok

[Guest guest]

:

Probaby a stupid question but, is Zach on the mito cocktail?

Kim

mito question

I was wondering about how all your children started out in life. Did they have some problems but overall were ok and then as time went by they started to deteriorate? Zachary is 3 and overall I think he does real good. We have developmental delay, sensory problems, his lack of interest in eating, muscle weakness (more w/ strenous activity like stairs which he can't do), spinal lordosis but smart as a whip. he has complex I and IV and has a mutated SCAD gene which gives him a mild scad variant or deficiency. I am hoping that someone can give me insite on maybe what to expect. Will he continue to make slow progress or will he make all these milestones only to lose them. What age did your children or you begin to regress? lose more motor function or have increased lack of muscle control..more weakness? So far our docs say that mito is so unstable that it depends on the child and eviromental factors. He only seems to get bad when he is sick w/ a virus but then we hospitalize him and those stays are getting less frequent. Please help and give some insight..I worry about what his future. He is such a bright, loving, energentic little boy and I hope never to see his smile disappear. Mom to Zachary 3 yrs old (SCAD Variant and Complex I and IV) 4 1/2 yrs old not tested and seems to be ok

[Guest guest]

:

Probaby a stupid question but, is Zach on the mito cocktail?

Kim

mito question

I was wondering about how all your children started out in life. Did they have some problems but overall were ok and then as time went by they started to deteriorate? Zachary is 3 and overall I think he does real good. We have developmental delay, sensory problems, his lack of interest in eating, muscle weakness (more w/ strenous activity like stairs which he can't do), spinal lordosis but smart as a whip. he has complex I and IV and has a mutated SCAD gene which gives him a mild scad variant or deficiency. I am hoping that someone can give me insite on maybe what to expect. Will he continue to make slow progress or will he make all these milestones only to lose them. What age did your children or you begin to regress? lose more motor function or have increased lack of muscle control..more weakness? So far our docs say that mito is so unstable that it depends on the child and eviromental factors. He only seems to get bad when he is sick w/ a virus but then we hospitalize him and those stays are getting less frequent. Please help and give some insight..I worry about what his future. He is such a bright, loving, energentic little boy and I hope never to see his smile disappear. Mom to Zachary 3 yrs old (SCAD Variant and Complex I and IV) 4 1/2 yrs old not tested and seems to be ok

[Guest guest]

Dear :

Our children do sound a lot alike! Although I am glad Zachary has never wanted to eat a plastic cup! LOL Also, he has no interest in potty training even watching daddy and his brother and boys at preschool. He has no muscle to push the pedals on a bicycle or big wheel and shakes when he tries pushing down his pants to remove them which can't ever push them down but a inch or 2. After we got tubes, his speech dramatically improved. We do have a lot of feeding issues...he isn't full by any means but refuses to eat usually after just a few ounces of food and doesn't like meat but once in a long while I can get maybe 1/2 ounce in him unless it is eggs..scrambled and water added to make wet.

Now my older child was very colicky and was on soy formula and didn't want to latch but was advanced in meeting developmental milestones. He was very active in my tummy but when it closer to the due date I had lack of movement...the 1st time I went in they sent me home cause he recovered because I was contracting early but very irregular. I remember I had orange juice, waffle and syrup and he wouldn't move...I went in and they had us monitored...my bp was 60/43 and they kept redoing it..he soon dipped and didn't recover. the team rushed in the room and when up me and stimulated his head w/ some device and put me on oxygen and kept flipping me from side to side. They induced me...and had some young girl increase the pitocin and soon after I had an older lady come in and angry that she did it because she was at the desk monitoring his fluctuations which started going down. He was born a bit purple but they stimulated him and his apgars were 9. Zacharys apgars were negative numbers. doesn't sleep well, talks in his sleep, wakes up and doesn't remember it at all. My husband said that I needed to smack his bottom and put him back to bed one night cause it was real bad with the amount of times he was crying or just coming in and waking us so I did and put him back to bed. The next day I asked him about it and he didn't remember me hitting his little bummy so I never did it again. Zack sleeps through the night and is hard to wake up unless he pees. I am starting to wonder about because he was in the 10th percentile but has fallen now to the 5th in height and weight and he sleeps terrible. Last night he woke me 3 or 4 times. He doesn't take a nap anymore even though he is tired...he just refuses. He will eat but many times it is like pulling teeth and I have to bribe him or threaten bed. He is a strong boy and can even do monkey bars and rides a motorcycle with great precision and love to catch air but we have left the training wheels on it cause he still can't touch the ground and it weighs 80 lbs..I don't want him squished! LOL

mito question

I was wondering about how all your children started out in life. Did they have some problems but overall were ok and then as time went by they started to deteriorate? Zachary is 3 and overall I think he does real good. We have developmental delay, sensory problems, his lack of interest in eating, muscle weakness (more w/ strenous activity like stairs which he can't do), spinal lordosis but smart as a whip. he has complex I and IV and has a mutated SCAD gene which gives him a mild scad variant or deficiency. I am hoping that someone can give me insite on maybe what to expect. Will he continue to make slow progress or will he make all these milestones only to lose them. What age did your children or you begin to regress? lose more motor function or have increased lack of muscle control..more weakness? So far our docs say that mito is so unstable that it depends on the child and eviromental factors. He only seems to get bad when he is sick w/ a virus but then we hospitalize him and those stays are getting less frequent. Please help and give some insight..I worry about what his future. He is such a bright, loving, energentic little boy and I hope never to see his smile disappear. Mom to Zachary 3 yrs old (SCAD Variant and Complex I and IV) 4 1/2 yrs old not tested and seems to be ok

[Guest guest]

Dear :

Our children do sound a lot alike! Although I am glad Zachary has never wanted to eat a plastic cup! LOL Also, he has no interest in potty training even watching daddy and his brother and boys at preschool. He has no muscle to push the pedals on a bicycle or big wheel and shakes when he tries pushing down his pants to remove them which can't ever push them down but a inch or 2. After we got tubes, his speech dramatically improved. We do have a lot of feeding issues...he isn't full by any means but refuses to eat usually after just a few ounces of food and doesn't like meat but once in a long while I can get maybe 1/2 ounce in him unless it is eggs..scrambled and water added to make wet.

Now my older child was very colicky and was on soy formula and didn't want to latch but was advanced in meeting developmental milestones. He was very active in my tummy but when it closer to the due date I had lack of movement...the 1st time I went in they sent me home cause he recovered because I was contracting early but very irregular. I remember I had orange juice, waffle and syrup and he wouldn't move...I went in and they had us monitored...my bp was 60/43 and they kept redoing it..he soon dipped and didn't recover. the team rushed in the room and when up me and stimulated his head w/ some device and put me on oxygen and kept flipping me from side to side. They induced me...and had some young girl increase the pitocin and soon after I had an older lady come in and angry that she did it because she was at the desk monitoring his fluctuations which started going down. He was born a bit purple but they stimulated him and his apgars were 9. Zacharys apgars were negative numbers. doesn't sleep well, talks in his sleep, wakes up and doesn't remember it at all. My husband said that I needed to smack his bottom and put him back to bed one night cause it was real bad with the amount of times he was crying or just coming in and waking us so I did and put him back to bed. The next day I asked him about it and he didn't remember me hitting his little bummy so I never did it again. Zack sleeps through the night and is hard to wake up unless he pees. I am starting to wonder about because he was in the 10th percentile but has fallen now to the 5th in height and weight and he sleeps terrible. Last night he woke me 3 or 4 times. He doesn't take a nap anymore even though he is tired...he just refuses. He will eat but many times it is like pulling teeth and I have to bribe him or threaten bed. He is a strong boy and can even do monkey bars and rides a motorcycle with great precision and love to catch air but we have left the training wheels on it cause he still can't touch the ground and it weighs 80 lbs..I don't want him squished! LOL

mito question

I was wondering about how all your children started out in life. Did they have some problems but overall were ok and then as time went by they started to deteriorate? Zachary is 3 and overall I think he does real good. We have developmental delay, sensory problems, his lack of interest in eating, muscle weakness (more w/ strenous activity like stairs which he can't do), spinal lordosis but smart as a whip. he has complex I and IV and has a mutated SCAD gene which gives him a mild scad variant or deficiency. I am hoping that someone can give me insite on maybe what to expect. Will he continue to make slow progress or will he make all these milestones only to lose them. What age did your children or you begin to regress? lose more motor function or have increased lack of muscle control..more weakness? So far our docs say that mito is so unstable that it depends on the child and eviromental factors. He only seems to get bad when he is sick w/ a virus but then we hospitalize him and those stays are getting less frequent. Please help and give some insight..I worry about what his future. He is such a bright, loving, energentic little boy and I hope never to see his smile disappear. Mom to Zachary 3 yrs old (SCAD Variant and Complex I and IV) 4 1/2 yrs old not tested and seems to be ok

[Guest guest]

Dear :

Our children do sound a lot alike! Although I am glad Zachary has never wanted to eat a plastic cup! LOL Also, he has no interest in potty training even watching daddy and his brother and boys at preschool. He has no muscle to push the pedals on a bicycle or big wheel and shakes when he tries pushing down his pants to remove them which can't ever push them down but a inch or 2. After we got tubes, his speech dramatically improved. We do have a lot of feeding issues...he isn't full by any means but refuses to eat usually after just a few ounces of food and doesn't like meat but once in a long while I can get maybe 1/2 ounce in him unless it is eggs..scrambled and water added to make wet.

Now my older child was very colicky and was on soy formula and didn't want to latch but was advanced in meeting developmental milestones. He was very active in my tummy but when it closer to the due date I had lack of movement...the 1st time I went in they sent me home cause he recovered because I was contracting early but very irregular. I remember I had orange juice, waffle and syrup and he wouldn't move...I went in and they had us monitored...my bp was 60/43 and they kept redoing it..he soon dipped and didn't recover. the team rushed in the room and when up me and stimulated his head w/ some device and put me on oxygen and kept flipping me from side to side. They induced me...and had some young girl increase the pitocin and soon after I had an older lady come in and angry that she did it because she was at the desk monitoring his fluctuations which started going down. He was born a bit purple but they stimulated him and his apgars were 9. Zacharys apgars were negative numbers. doesn't sleep well, talks in his sleep, wakes up and doesn't remember it at all. My husband said that I needed to smack his bottom and put him back to bed one night cause it was real bad with the amount of times he was crying or just coming in and waking us so I did and put him back to bed. The next day I asked him about it and he didn't remember me hitting his little bummy so I never did it again. Zack sleeps through the night and is hard to wake up unless he pees. I am starting to wonder about because he was in the 10th percentile but has fallen now to the 5th in height and weight and he sleeps terrible. Last night he woke me 3 or 4 times. He doesn't take a nap anymore even though he is tired...he just refuses. He will eat but many times it is like pulling teeth and I have to bribe him or threaten bed. He is a strong boy and can even do monkey bars and rides a motorcycle with great precision and love to catch air but we have left the training wheels on it cause he still can't touch the ground and it weighs 80 lbs..I don't want him squished! LOL

mito question

I was wondering about how all your children started out in life. Did they have some problems but overall were ok and then as time went by they started to deteriorate? Zachary is 3 and overall I think he does real good. We have developmental delay, sensory problems, his lack of interest in eating, muscle weakness (more w/ strenous activity like stairs which he can't do), spinal lordosis but smart as a whip. he has complex I and IV and has a mutated SCAD gene which gives him a mild scad variant or deficiency. I am hoping that someone can give me insite on maybe what to expect. Will he continue to make slow progress or will he make all these milestones only to lose them. What age did your children or you begin to regress? lose more motor function or have increased lack of muscle control..more weakness? So far our docs say that mito is so unstable that it depends on the child and eviromental factors. He only seems to get bad when he is sick w/ a virus but then we hospitalize him and those stays are getting less frequent. Please help and give some insight..I worry about what his future. He is such a bright, loving, energentic little boy and I hope never to see his smile disappear. Mom to Zachary 3 yrs old (SCAD Variant and Complex I and IV) 4 1/2 yrs old not tested and seems to be ok