RE: Re: Leighann's second opinion, frustrated!

[Guest guest]

Just because he is an mda neuro does not make him neccessarily the right doc for you. Trust your heart and keep going . We have all changed doctors many times on our quest for answers. You will know when you have the right doctors on your team.

rosy

[Guest guest]

First of all, I want to say that you guys have been a Godsend! Everybody

has been so helpful, and I really appreciate it!

I am beyond glad that I found this group.

Leighann went for an appointment to a MDA doc in Orlando, has anyone out

there ever dealt with Dr. Pollock, neuro at

Nemoirs Children's Clinic in Orlando, Fla?

I am so frustrated over this visit, I don't know how to take this. He

doesn't think Leighann's got a mito disease, which

would be great, but he's got a lot of facts mixed up on what's going on

with her. She was on phenabarbitol for 1 year,

it controlled the seizures, they weaned her off it and she started having

tremors and balance issues, the longer she was

off this the worse it got. 2 months after being off siezure med she started

back having full force seizures again, so they

put her on trileptal, which didn't seem like it did much of anything for

her. Even when she got to her max dose they had

to add zonegran to get some control of seizures.

Anyway, when we went to Dr. Pollock, he said that he thought the

medications were causing her symptoms, that if we put

her on different meds the tremors, balance, developmental delays,

everything will be better. We tried to explain that these

symptoms started before we even started the trileptal, that the med neither

helped nor made them worse. He just wouldn't

listen.

He seems to think the seizures are the only symptom and they're not. I just

feel like he wants us to start over, and that's

terrifying to me. I want to trust a neuro somewhere with Leighann, they

just have to give me somekind of a reason to trust

them. I'm sorry to rant and rave about this, shes 2 years old and we are

trying to get her help, and it seems like these docs

are playing games with us. Now she's starting a runny nose and fever again,

and it's already turning into an infection alredy,

so I'm scared to death she's going to be back in the hospital soon.

Thank you for giving me a place to vent, and someplace to gather knowledge

from people that actually care about our kids.

I really would be going crazy (even worse) without you guys!

Thanks,

Lois

> [Original Message]

>

> To: <Mito >

> Date: 2/19/2005 12:52:59 AM

> Subject: Re: fresh muscle biopsies

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> The waiting list for Cohen is more than a year.

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> Please contact mito-owner with any problems or questions.

>

[Guest guest]

Sorry you had a dissatisfying visit. I know what that is like and it

at times makes you just want to give up, but then you pick yourself back up

and try again because you know there is an answer out there somewhere. Hope

you are able to find the right neuro for your child.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

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

hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency, ...

Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

Marquis (3), Joey & (12 months) (some with Mito symptoms)

Re: fresh muscle biopsies

> >

> >

> >

> > The waiting list for Cohen is more than a year.

> >

> >

> >

> >

> >

> >

> >

> >

> > Please contact mito-owner with any problems or

> > questions.

> >

[Guest guest]

Thanks! I just wish there was a sign on their door saying, hey turn around-

wrong doc! I know if anyone can understand you guys would.

I feel like I'm at a standstill sometimes, but you're right, I have to keep

searching for Leighann. The right neuro has to be here.

I feel bad for complaining. I have one sick child, I know you have your

hands full. You've got to be a very special and strong person.

Thank you for your help and compation. I feel like I'm at my wits ends with

these docs, how do you do it? I'm not one to give up,

she means too much to me.This is still new and I've always thought doctors

could fix anything. You get sick, you go to the doctor,

and he says oh , so and so is wrong, take this and you'll be good as new

in no time. We don't get that now, thats the hardest part.

Thanks again! It means so much!

Lois

> [Original Message]

>

> To: <Mito >

> Date: 2/19/2005 12:20:52 PM

> Subject: Re: Re: Leighann's second opinion, frustrated!

>

>

> Sorry you had a dissatisfying visit. I know what that is like and

it

> at times makes you just want to give up, but then you pick yourself back

up

> and try again because you know there is an answer out there somewhere.

Hope

> you are able to find the right neuro for your child.

>

> See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to

see

> a photo look into what Mito looks like

> Darla: mommy to

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

> hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

> bladder issues, wheelchair for distances, eye issues, autistic behaviors,

> gastric emptying issues...

> Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID,

GERD,

> dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

> phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

> hypertonicity, migraines, possible seizures, dumping syndrome, iron

> deficiency, ...

> Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

> Marquis (3), Joey & (12 months) (some with Mito symptoms)

>

>

> Re: fresh muscle biopsies

> > >

> > >

> > >

> > > The waiting list for Cohen is more than a year.

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > Please contact mito-owner with any problems or

> > > questions.

> > >

[Guest guest]

Thanks, I just needed to hear this. This is the first MDA doc we've seen, so I had a lot of hopes with him.

My heart tells me to take Leighann and run as far away from him as I can. I just feel bad thinking that. Her

pediatrician and pulmonologist are great, just no luck with anybody else.

Thanks for your advice.

Lois

Re: Re: Leighann's second opinion, frustrated!

Just because he is an mda neuro does not make him neccessarily the right doc for you. Trust your heart and keep going . We have all changed doctors many times on our quest for answers. You will know when you have the right doctors on your team.

rosy Please contact mito-owner with any problems or questions.