Re: Re: So many of us having behavioral issues, Any of you in TEXAS

[Guest guest]

Cindy wrote:

Dear Mo: So sorry to hear about your son, . That is so heartbreaking to hear. My son, Seth, is 13 and he has had psychological effects of the mito. He hasn't injured himself ever, but he has had rages and has come after others. We see a psychiatrist (and I would recommend anyone having bad behavioral or psychological symptoms to get hooked up now with one). If you have already seen experts, I am at a loss for what to tell you. All I can tell you is that I really feel for you and your son. It is such a helpless feeling to have them so out of control. I feel for all of these kids (and adults) dealing with psychological aspects of this disease. I think it's an area many don't expect.Cindy (mom to Seth, 13, and Ben, 9 both mito)> > > Hello,> > My 12 yr old son , who has a mito disease and is autistic has > been hurting himself for over 8 months now. He has been hospitalized > for over 6 months now. He hits, scratches, digs and bites himself. > We've tried numerous meds and different ways of dealing with it but > nothing seems to work. He has been seen by some of the best Drs in the > field in the MA/ NH area but nothing has worked thus far. Has anyone > out there had similar issues???> > MoPlease contact mito-owner with any problems or questions.

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[Guest guest]

Thanks for the support Cindy.

MO

--- brenda h wrote:

> So Many of us are having behavioral issues. I was

> wondering if any besides me are in Texas. My grand

> daughter is 5 and has complex III and is doing some

> scarey self injurious things. I would love to know

> if any one else is in Texas or even Louisiana.

>

> brenda h wrote:

>

> Cindy wrote:

> Dear Mo: So sorry to hear about your son, .

> That is so

> heartbreaking to hear. My son, Seth, is 13 and he

> has had

> psychological effects of the mito. He hasn't

> injured himself ever, but

> he has had rages and has come after others. We see

> a psychiatrist (and

> I would recommend anyone having bad behavioral or

> psychological

> symptoms to get hooked up now with one). If you

> have already seen

> experts, I am at a loss for what to tell you. All I

> can tell you is

> that I really feel for you and your son. It is such

> a helpless feeling

> to have them so out of control. I feel for all of

> these kids (and

> adults) dealing with psychological aspects of this

> disease. I think

> it's an area many don't expect.

>

> Cindy (mom to Seth, 13, and Ben, 9 both mito)

>

>

> >

> >

> > Hello,

> >

> > My 12 yr old son , who has a mito disease

> and is autistic has

> > been hurting himself for over 8 months now. He has

> been hospitalized

> > for over 6 months now. He hits, scratches, digs

> and bites himself.

> > We've tried numerous meds and different ways of

> dealing with it but

> > nothing seems to work. He has been seen by some of

> the best Drs in

> the

> > field in the MA/ NH area but nothing has worked

> thus far. Has anyone

> > out there had similar issues???

> >

> > Mo

>

>

>

>

>

> Please contact mito-owner with any

> problems or questions.

>

>

>

>

> ---------------------------------

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> Take Yahoo! Mail with you! Check email on your

> mobile phone.

>

> Please contact mito-owner with any

> problems or questions.

>

>

>

> ---------------------------------

>

[Guest guest]

Kim, thanks for responding. Does your Logan have the behavior issues that several of us have written about. ?? Denton is such a nice size town, I visited there once a long time ago. Have you found a doctor in that area. Houston doesn't have anyone that we would recommend. The behavior issues are of major concern right now for us. Kim wrote:

I'm in Texas. I live in Denton,,which is North of Dallas. Where do you live ?Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY

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No,,Logan doesn't have the behavior problems,that you are talking about. I'm so sorry to hear about your struggles. I don't have any advise for you,,I'm sorry. No,there are no Dr's in Denton. We are actually planning a trip to Houston,in June,to see a Dr. Scaglia. Have you heard of him ? Hopefully he will know what he is talking about. Again,,I'm so sorry about your grandaughter. I will be praying for y'all,that everything will work out.Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY__________________________________________________

[Guest guest]

Thank you Kim. I hope all goes well when you come to Houston. I have heard of Dr. Scaglia, but my daughter has no rights right now. She can not get any medical help for Hannah. It is such a shame too because we were so thankful when we finally got the diagnosis last August. Just in time for the judge to shove it aside and give the temporary custody to the father who denies all of this. He changes his story only when he has to. Now he accepts diagnosis but he denies the symptoms.Kim wrote:

No,,Logan doesn't have the behavior problems,that you are talking about. I'm so sorry to hear about your struggles. I don't have any advise for you,,I'm sorry. No,there are no Dr's in Denton. We are actually planning a trip to Houston,in June,to see a Dr. Scaglia. Have you heard of him ? Hopefully he will know what he is talking about. Again,,I'm so sorry about your grandaughter. I will be praying for y'all,that everything will work out.Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY

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