Re: hand wringing/sensory dysfunction issues

[Guest guest]

Darla, To my recollection, handwringing is maybe the one sx that I haven't heard of on this list (someone correct me if I'm wrong). In Rett Syndrome, the handwringing is caused by loss of function due to stagnation in brain development. In classic RS, the handwringing can be quite pervasive to the point it is constant while awake. I have seen this in a little girl Chelsea goes to school with, she rocks and wrings, will stop suddenly, clap and laugh and return to rocking and wringing. She makes little to no eye contact. Chelsea's automatisms are not very pervasive. She scratches on her torso, fiddles with her hair, and has recently started hand mouthing a bit, she also rubs her eyes when she is frustrated. I also believe I have seen her do some rudimentary handwringing, she brings her hand together and sort of scratches. She is just now able to bring her hands to midline and can keep them there, so I am unsure about this yet. Chelsea can be distracted from her automatisms by toys that interest her, but her hand function is still very infantile. Chelsea is also what I call sensory offensive, she loves anything tactile and will search out tactile stim. I used to think the scratching herself was self stim behaviour, but it fits more with the RS automatisms, because it gets worse when she is frustrated, agitated, or ill.

If you are interested in learning more about RS, the International Rett Syndrome Association has a great website www.irsa.org There actually has been a discussion just started yesterday about mito issues in RS on my rettangels list. Like I mentioned before, I am not going to be surprized if Chelsea has 2ndary mito issues. Let me know if you have any more ?'s

Krisitne, Chelsea's mom, Atyical Rett Syndrome (FKA nonspecific mito)

[Guest guest]

Darla, To my recollection, handwringing is maybe the one sx that I haven't heard of on this list (someone correct me if I'm wrong). In Rett Syndrome, the handwringing is caused by loss of function due to stagnation in brain development. In classic RS, the handwringing can be quite pervasive to the point it is constant while awake. I have seen this in a little girl Chelsea goes to school with, she rocks and wrings, will stop suddenly, clap and laugh and return to rocking and wringing. She makes little to no eye contact. Chelsea's automatisms are not very pervasive. She scratches on her torso, fiddles with her hair, and has recently started hand mouthing a bit, she also rubs her eyes when she is frustrated. I also believe I have seen her do some rudimentary handwringing, she brings her hand together and sort of scratches. She is just now able to bring her hands to midline and can keep them there, so I am unsure about this yet. Chelsea can be distracted from her automatisms by toys that interest her, but her hand function is still very infantile. Chelsea is also what I call sensory offensive, she loves anything tactile and will search out tactile stim. I used to think the scratching herself was self stim behaviour, but it fits more with the RS automatisms, because it gets worse when she is frustrated, agitated, or ill.

If you are interested in learning more about RS, the International Rett Syndrome Association has a great website www.irsa.org There actually has been a discussion just started yesterday about mito issues in RS on my rettangels list. Like I mentioned before, I am not going to be surprized if Chelsea has 2ndary mito issues. Let me know if you have any more ?'s

Krisitne, Chelsea's mom, Atyical Rett Syndrome (FKA nonspecific mito)

[Guest guest]

e can you jump in here with me...

Darla... kids with RS do alot of hand wringing or stereotypical hand movements... and alot of kids with RS have mito issues.... so I personally would check into this.... kids with RS (Rett's) can have alot of different things happening with sensory issues.... so I would say have her checked.... it can't hurt.... I think e is finally relieved to have a proper diagnosis of exactly what was going on with her little one...

Good luck and if you need anymore information give us a shout...

Netty mom to Akasha 15yrs atypical Rett syndromeDarla Klein wrote:

I know Retts can cause this symptom in kids, but is this symptom seen often in Mito kids as well? Zipporrah began doing it a couple weeks ago and we are wondering what is going on with her. It may just be another manifestation of her sensory dysfunction, but we are wondering if others also see this in their kids?? Zipporrah has TONS of sensory problems and is constantly stomping her left foot, kicking it, rubbing it, and having me rub them, as well as seeking out anything different feeling such as ice packs, beans or rice to play in, climbs on everything, and bumpy balls to stick her feet onto. She stands on the tops of her feet to put as much info into them as possible so she can feel where they are in space. Her mouth and cheeks are very sensitive to touch and avoids it if possible and her nose and throat

areas can't be touched without causing gagging or coughing from hypersensitivity. The hand wringing is new though. She is bothered by long sleeves on her wrists so that may be causing the problem as well. Anyone else deal with this?Darla: mommy toAsenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...Zipporrah (11 mon.) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency...Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Please contact mito-owner with any problems or questions. Post your free ad now! Yahoo! Canada Personals

[Guest guest]

e can you jump in here with me...

Darla... kids with RS do alot of hand wringing or stereotypical hand movements... and alot of kids with RS have mito issues.... so I personally would check into this.... kids with RS (Rett's) can have alot of different things happening with sensory issues.... so I would say have her checked.... it can't hurt.... I think e is finally relieved to have a proper diagnosis of exactly what was going on with her little one...

Good luck and if you need anymore information give us a shout...

Netty mom to Akasha 15yrs atypical Rett syndromeDarla Klein wrote:

I know Retts can cause this symptom in kids, but is this symptom seen often in Mito kids as well? Zipporrah began doing it a couple weeks ago and we are wondering what is going on with her. It may just be another manifestation of her sensory dysfunction, but we are wondering if others also see this in their kids?? Zipporrah has TONS of sensory problems and is constantly stomping her left foot, kicking it, rubbing it, and having me rub them, as well as seeking out anything different feeling such as ice packs, beans or rice to play in, climbs on everything, and bumpy balls to stick her feet onto. She stands on the tops of her feet to put as much info into them as possible so she can feel where they are in space. Her mouth and cheeks are very sensitive to touch and avoids it if possible and her nose and throat

areas can't be touched without causing gagging or coughing from hypersensitivity. The hand wringing is new though. She is bothered by long sleeves on her wrists so that may be causing the problem as well. Anyone else deal with this?Darla: mommy toAsenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...Zipporrah (11 mon.) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency...Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Please contact mito-owner with any problems or questions. Post your free ad now! Yahoo! Canada Personals

[Guest guest]

She has been having such a hard time sleeping because her left side (both arm and leg) have been bothering her so much. She gets so irritated with her leg especially.

Darla, Chelsea actually lost function of her lft arm and leg around 3 yrs, I was noticing her loss before that. within the past 6 mos, she has completely regained function and then some. She now prefers to stabilize with her rt and play with her lft arm. It used to be the other way around. I used to wonder about stroke damage too, but since it took her so long to regain, I highly doubt that. It does fit in the pattern of RS, though. There are 4 stages, stage 2 being the rapid destructive, where skills are lost and development essentially arrests. this usually starts around 18mos to 2 yrs and can go on 2-10yrs. Intractable epilepsy is also a feature of this stage.

Vasculitis and strokes are not seen in RS, in fact, there is typically no brain damage in RS. From what I can tell Asi has no RS sx's, so I am not sure what to think. I would ask Dr Whiteman if she and Zippi has already been tested. I know that Schoffner runs the FISH analysis on all pts he tests for mito, though I am not sure if he does the MecP2 (for RS) and UBE3a (for AS) sequencing for deletions/mutations.

I know how confusing this is, I feel like we are still on a merry-go-round and I don't know if it will stop at just RS or RS and mito. I certainly hope Asi perks up soon! OH, Chelsea also has lots of setbacks with illness and teething and just overdoing it. Hers is more increased lethargy, seizures, and neuro sx's. But once the crisis is over, she will bounce back. HTH

e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito)

[Guest guest]

She has been having such a hard time sleeping because her left side (both arm and leg) have been bothering her so much. She gets so irritated with her leg especially.

Darla, Chelsea actually lost function of her lft arm and leg around 3 yrs, I was noticing her loss before that. within the past 6 mos, she has completely regained function and then some. She now prefers to stabilize with her rt and play with her lft arm. It used to be the other way around. I used to wonder about stroke damage too, but since it took her so long to regain, I highly doubt that. It does fit in the pattern of RS, though. There are 4 stages, stage 2 being the rapid destructive, where skills are lost and development essentially arrests. this usually starts around 18mos to 2 yrs and can go on 2-10yrs. Intractable epilepsy is also a feature of this stage.

Vasculitis and strokes are not seen in RS, in fact, there is typically no brain damage in RS. From what I can tell Asi has no RS sx's, so I am not sure what to think. I would ask Dr Whiteman if she and Zippi has already been tested. I know that Schoffner runs the FISH analysis on all pts he tests for mito, though I am not sure if he does the MecP2 (for RS) and UBE3a (for AS) sequencing for deletions/mutations.

I know how confusing this is, I feel like we are still on a merry-go-round and I don't know if it will stop at just RS or RS and mito. I certainly hope Asi perks up soon! OH, Chelsea also has lots of setbacks with illness and teething and just overdoing it. Hers is more increased lethargy, seizures, and neuro sx's. But once the crisis is over, she will bounce back. HTH

e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito)

[Guest guest]

Zipporrah scratches her tummy a lot as well. I have assumed that maybe

she was either dealing with more sensory dysfunction or that her scar from

the nissen/g-tube placement was itchy. Zipporrah has had so much sensory

involvement it's crazy. She has been having such a hard time sleeping

because her left side (both arm and leg) have been bothering her so much.

She gets so irritated with her leg especially. She is like your daughter in

that she seeks out anything possible to put input into her body. Things we

would think uncomfortable to rub against, she finds wonderful. I tend to

assume this is all stroke episode caused, but it has been frustrating to

speak to three different groups of people that have Mito " plus " something

else that sounds so much like her. First there was the chromosome deletion

topic, then the Congenital Disorders of Glycosylation topic, and now some

issues with Retts also has similarities with what we see in Zipporrah in

particular. I wonder sometimes if the doctors are missing something with

our girls. I believe they have Mito for sure, but often wonder if there is

" more. " As it is Asenath having CNS Vasculitis is so strange as it is

almost unheard of in children (and yet two others with Mito also have it on

this list). I know most of the kids with Mito have episodes, but sometimes

it seems like my girls have them more often than most. I could be wrong in

that, but do others have set backs at every sniffle, every tiny fever, ever

teething or growth spurt, or even for no reason at all? I hope I am able to

discuss some of my concerns with Dr. Whiteman when I see him in two weeks.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Re: hand wringing/sensory dysfunction issues

> Darla, To my recollection, handwringing is maybe the one sx that I haven't

> heard of on this list (someone correct me if I'm wrong). In Rett Syndrome,

> the

> handwringing is caused by loss of function due to stagnation in brain

> development. In classic RS, the handwringing can be quite pervasive to the

> point it is

> constant while awake. I have seen this in a little girl Chelsea goes to

> school

> with, she rocks and wrings, will stop suddenly, clap and laugh and return

> to

> rocking and wringing. She makes little to no eye contact. Chelsea's

> automatisms are not very pervasive. She scratches on her torso, fiddles

> with her hair,

> and has recently started hand mouthing a bit, she also rubs her eyes when

> she

> is frustrated. I also believe I have seen her do some rudimentary

> handwringing,

> she brings her hand together and sort of scratches. She is just now able

> to

> bring her hands to midline and can keep them there, so I am unsure about

> this

> yet. Chelsea can be distracted from her automatisms by toys that interest

> her,

> but her hand function is still very infantile. Chelsea is also what I call

> sensory offensive, she loves anything tactile and will search out tactile

> stim. I

> used to think the scratching herself was self stim behaviour, but it fits

> more with the RS automatisms, because it gets worse when she is

> frustrated,

> agitated, or ill.

> If you are interested in learning more about RS, the International Rett

> Syndrome Association has a great website www.irsa.org There actually has

> been a

> discussion just started yesterday about mito issues in RS on my rettangels

> list.

> Like I mentioned before, I am not going to be surprized if Chelsea has

> 2ndary

> mito issues. Let me know if you have any more ?'s

>

> Krisitne, Chelsea's mom, Atyical Rett Syndrome (FKA nonspecific mito)

>

[Guest guest]

Zipporrah scratches her tummy a lot as well. I have assumed that maybe

she was either dealing with more sensory dysfunction or that her scar from

the nissen/g-tube placement was itchy. Zipporrah has had so much sensory

involvement it's crazy. She has been having such a hard time sleeping

because her left side (both arm and leg) have been bothering her so much.

She gets so irritated with her leg especially. She is like your daughter in

that she seeks out anything possible to put input into her body. Things we

would think uncomfortable to rub against, she finds wonderful. I tend to

assume this is all stroke episode caused, but it has been frustrating to

speak to three different groups of people that have Mito " plus " something

else that sounds so much like her. First there was the chromosome deletion

topic, then the Congenital Disorders of Glycosylation topic, and now some

issues with Retts also has similarities with what we see in Zipporrah in

particular. I wonder sometimes if the doctors are missing something with

our girls. I believe they have Mito for sure, but often wonder if there is

" more. " As it is Asenath having CNS Vasculitis is so strange as it is

almost unheard of in children (and yet two others with Mito also have it on

this list). I know most of the kids with Mito have episodes, but sometimes

it seems like my girls have them more often than most. I could be wrong in

that, but do others have set backs at every sniffle, every tiny fever, ever

teething or growth spurt, or even for no reason at all? I hope I am able to

discuss some of my concerns with Dr. Whiteman when I see him in two weeks.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Re: hand wringing/sensory dysfunction issues

> Darla, To my recollection, handwringing is maybe the one sx that I haven't

> heard of on this list (someone correct me if I'm wrong). In Rett Syndrome,

> the

> handwringing is caused by loss of function due to stagnation in brain

> development. In classic RS, the handwringing can be quite pervasive to the

> point it is

> constant while awake. I have seen this in a little girl Chelsea goes to

> school

> with, she rocks and wrings, will stop suddenly, clap and laugh and return

> to

> rocking and wringing. She makes little to no eye contact. Chelsea's

> automatisms are not very pervasive. She scratches on her torso, fiddles

> with her hair,

> and has recently started hand mouthing a bit, she also rubs her eyes when

> she

> is frustrated. I also believe I have seen her do some rudimentary

> handwringing,

> she brings her hand together and sort of scratches. She is just now able

> to

> bring her hands to midline and can keep them there, so I am unsure about

> this

> yet. Chelsea can be distracted from her automatisms by toys that interest

> her,

> but her hand function is still very infantile. Chelsea is also what I call

> sensory offensive, she loves anything tactile and will search out tactile

> stim. I

> used to think the scratching herself was self stim behaviour, but it fits

> more with the RS automatisms, because it gets worse when she is

> frustrated,

> agitated, or ill.

> If you are interested in learning more about RS, the International Rett

> Syndrome Association has a great website www.irsa.org There actually has

> been a

> discussion just started yesterday about mito issues in RS on my rettangels

> list.

> Like I mentioned before, I am not going to be surprized if Chelsea has

> 2ndary

> mito issues. Let me know if you have any more ?'s

>

> Krisitne, Chelsea's mom, Atyical Rett Syndrome (FKA nonspecific mito)

>

[Guest guest]

Darla,

What I have found is that so many of these conditions can overlap and look like each other because they involve the neurodevelopment....

My daughter Akasha has not tested positive for any genetic abnormality as of yet... although she was first suspected to have Angelman Syndrome which can greatly mimic Rett Syndrome in its first 3yrs of life...

My daugther has alot of the hand issues... they have gone from hand mouthing to hand clenching to pin rolling to face scratching and hair pulling.... she has some tactile or sensory issues that have been helped with sensory intergration therapies... lots of deep sensations.... tactile work as well as spinning and swinging...

You might want to talk to your doctors about the possiblity of testing your children for Rett syndrome... it can affect boys as well as girls... although its not as common in boys... it can also be very mild in some children while others can be more afflicted.... so don't think anything you read is written in stone...

Good luck,

NettyDarla Klein wrote:

Zipporrah scratches her tummy a lot as well. I have assumed that maybe she was either dealing with more sensory dysfunction or that her scar from the nissen/g-tube placement was itchy. Zipporrah has had so much sensory involvement it's crazy. She has been having such a hard time sleeping because her left side (both arm and leg) have been bothering her so much. She gets so irritated with her leg especially. She is like your daughter in that she seeks out anything possible to put input into her body. Things we would think uncomfortable to rub against, she finds wonderful. I tend to assume this is all stroke episode caused, but it has been frustrating to speak to three different groups of people that have Mito "plus" something else that sounds so much like her. First there was

the chromosome deletion topic, then the Congenital Disorders of Glycosylation topic, and now some issues with Retts also has similarities with what we see in Zipporrah in particular. I wonder sometimes if the doctors are missing something with our girls. I believe they have Mito for sure, but often wonder if there is "more." As it is Asenath having CNS Vasculitis is so strange as it is almost unheard of in children (and yet two others with Mito also have it on this list). I know most of the kids with Mito have episodes, but sometimes it seems like my girls have them more often than most. I could be wrong in that, but do others have set backs at every sniffle, every tiny fever, ever teething or growth spurt, or even for no reason at all? I hope I am able to discuss some of my concerns with Dr. Whiteman when I see him in two weeks.See www.caringbridge.org/ia/mitomomof9 and this link to see a real

look into Mito using a photo collage of my girls at www.heartbeatsformito.orgDarla: mommy toAsenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency...Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Re: hand wringing/sensory dysfunction issues> Darla, To my recollection, handwringing is maybe the one sx that I haven't> heard of on this list (someone

correct me if I'm wrong). In Rett Syndrome, > the> handwringing is caused by loss of function due to stagnation in brain> development. In classic RS, the handwringing can be quite pervasive to the > point it is> constant while awake. I have seen this in a little girl Chelsea goes to > school> with, she rocks and wrings, will stop suddenly, clap and laugh and return > to> rocking and wringing. She makes little to no eye contact. Chelsea's> automatisms are not very pervasive. She scratches on her torso, fiddles > with her hair,> and has recently started hand mouthing a bit, she also rubs her eyes when > she> is frustrated. I also believe I have seen her do some rudimentary > handwringing,> she brings her hand together and sort of scratches. She is just now able > to> bring her hands to midline and can keep them there, so I am unsure about > this>

yet. Chelsea can be distracted from her automatisms by toys that interest > her,> but her hand function is still very infantile. Chelsea is also what I call> sensory offensive, she loves anything tactile and will search out tactile > stim. I> used to think the scratching herself was self stim behaviour, but it fits> more with the RS automatisms, because it gets worse when she is > frustrated,> agitated, or ill.> If you are interested in learning more about RS, the International Rett> Syndrome Association has a great website www.irsa.org There actually has > been a> discussion just started yesterday about mito issues in RS on my rettangels > list.> Like I mentioned before, I am not going to be surprized if Chelsea has > 2ndary> mito issues. Let me know if you have any more ?'s>> Krisitne, Chelsea's mom, Atyical Rett Syndrome (FKA nonspecific

mito)> Please contact mito-owner with any problems or questions. Post your free ad now! Yahoo! Canada Personals

[Guest guest]

Darla,

What I have found is that so many of these conditions can overlap and look like each other because they involve the neurodevelopment....

My daughter Akasha has not tested positive for any genetic abnormality as of yet... although she was first suspected to have Angelman Syndrome which can greatly mimic Rett Syndrome in its first 3yrs of life...

My daugther has alot of the hand issues... they have gone from hand mouthing to hand clenching to pin rolling to face scratching and hair pulling.... she has some tactile or sensory issues that have been helped with sensory intergration therapies... lots of deep sensations.... tactile work as well as spinning and swinging...

You might want to talk to your doctors about the possiblity of testing your children for Rett syndrome... it can affect boys as well as girls... although its not as common in boys... it can also be very mild in some children while others can be more afflicted.... so don't think anything you read is written in stone...

Good luck,

NettyDarla Klein wrote:

Zipporrah scratches her tummy a lot as well. I have assumed that maybe she was either dealing with more sensory dysfunction or that her scar from the nissen/g-tube placement was itchy. Zipporrah has had so much sensory involvement it's crazy. She has been having such a hard time sleeping because her left side (both arm and leg) have been bothering her so much. She gets so irritated with her leg especially. She is like your daughter in that she seeks out anything possible to put input into her body. Things we would think uncomfortable to rub against, she finds wonderful. I tend to assume this is all stroke episode caused, but it has been frustrating to speak to three different groups of people that have Mito "plus" something else that sounds so much like her. First there was

the chromosome deletion topic, then the Congenital Disorders of Glycosylation topic, and now some issues with Retts also has similarities with what we see in Zipporrah in particular. I wonder sometimes if the doctors are missing something with our girls. I believe they have Mito for sure, but often wonder if there is "more." As it is Asenath having CNS Vasculitis is so strange as it is almost unheard of in children (and yet two others with Mito also have it on this list). I know most of the kids with Mito have episodes, but sometimes it seems like my girls have them more often than most. I could be wrong in that, but do others have set backs at every sniffle, every tiny fever, ever teething or growth spurt, or even for no reason at all? I hope I am able to discuss some of my concerns with Dr. Whiteman when I see him in two weeks.See www.caringbridge.org/ia/mitomomof9 and this link to see a real

look into Mito using a photo collage of my girls at www.heartbeatsformito.orgDarla: mommy toAsenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency...Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Re: hand wringing/sensory dysfunction issues> Darla, To my recollection, handwringing is maybe the one sx that I haven't> heard of on this list (someone

correct me if I'm wrong). In Rett Syndrome, > the> handwringing is caused by loss of function due to stagnation in brain> development. In classic RS, the handwringing can be quite pervasive to the > point it is> constant while awake. I have seen this in a little girl Chelsea goes to > school> with, she rocks and wrings, will stop suddenly, clap and laugh and return > to> rocking and wringing. She makes little to no eye contact. Chelsea's> automatisms are not very pervasive. She scratches on her torso, fiddles > with her hair,> and has recently started hand mouthing a bit, she also rubs her eyes when > she> is frustrated. I also believe I have seen her do some rudimentary > handwringing,> she brings her hand together and sort of scratches. She is just now able > to> bring her hands to midline and can keep them there, so I am unsure about > this>

yet. Chelsea can be distracted from her automatisms by toys that interest > her,> but her hand function is still very infantile. Chelsea is also what I call> sensory offensive, she loves anything tactile and will search out tactile > stim. I> used to think the scratching herself was self stim behaviour, but it fits> more with the RS automatisms, because it gets worse when she is > frustrated,> agitated, or ill.> If you are interested in learning more about RS, the International Rett> Syndrome Association has a great website www.irsa.org There actually has > been a> discussion just started yesterday about mito issues in RS on my rettangels > list.> Like I mentioned before, I am not going to be surprized if Chelsea has > 2ndary> mito issues. Let me know if you have any more ?'s>> Krisitne, Chelsea's mom, Atyical Rett Syndrome (FKA nonspecific

mito)> Please contact mito-owner with any problems or questions. Post your free ad now! Yahoo! Canada Personals