Re: le- how do you get the ER dr to listen?

[Guest guest]

Do you see Dr. Whiteman? I got a very basic protocal from him which

really hasn't helped much and so another doc at Mayo (our GI) was going to

write another very specific one for us. When I spoke to Dr. Whiteman about

the issue he was not too pleased about us needing another one. He said they

cannot push the in-hospital staff to admit, treat, or keep a patient in even

when they feel the patient should be. He said it was up to the head of the

unit the child was staying in to decide when and what to do. This was very

confusing to me and made me really doubt that future trips to the hospital

would be much different than the last trip. I really thought they would

understand Mito better and know the risk of not treating a Mito child.

Locally I think the docs are getting better as I have spent a long time

trying to educate them, but honestly I haven't had a child inpatient locally

since the spring so who knows. I just don't understand why our specialists

don't have more power in the hospital (according to Dr. Whiteman anyway).

If he is the specialist for our children's disorder, shouldn't the hospital

listen to his advice? If a patient is in for neurological surgery then the

neurologists and neurosurgeons seem to be in charge. Isn't that the case

with our kids too???

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: how do you get the ER dr to listen?

>

>

> We've had 2 bouts with the flu with Lea in the last 2mos. The first

> time was in November- after about 8 hours of throwing up/not keeping

> anything down- we took her to the ER. The dr there was VERY hesitant

> to do anything for her- he kept telling me that it was just a simple

> flu bug, yadda yadda yadda.... Even after all the info I gave him on

> mito (and after he admitted he knew little about it). I told him I

> was NOT leaving until she was given fluids... and they finally gave

> in. But it was like they were punishing me, as though they thought I

> was over-reacting... by making me hold her down as they stuck the IV

> in a vein in her head.... by keeping us in a very uncomfortable ER

> room with nothing but a exam table (I was 8mos pg at the time) and

> offering me no comfort measures (like a meal or a drink or a simple

> bathroom break!). She recovered VERY quickly from this bug, within

> 24hours she was almost completely normal.

>

> A couple weeks later we were at Mayo and I asked her dr once again

> if this was appropriate (what we had done) and she said YES-- that

> we need to treat aggressively.

>

> Once again Lea got sick this past Sunday... and while the vomiting

> passed w/in 8 hours or so, the diahrrea continues 4 days later. We

> did NOT take her to the ER immediately this time, instead tried to

> treat it (the vomiting) at home. Finally after days of diahrrea we

> took her to the ER yesterday. Lea was refusing to eat/drink and was

> having very few wet diapers. She WAS however, drooling and tearing.

> Dh took Lea in himself (which I hate, but I am home with a newborn),

> and the ER doc sent him home! Lea is having a hard time recovering

> from this... now hopefully we are over the " hump " as far as the

> virus goes, yet I feel like it's going to be a long road back

> to " normal " .

>

> I ended up calling the ER dr, (different one from last time) and

> interesting enough... he admitted to only knowing the " basics " of

> mito. (like he is going to admit he knows NOTHING) He said that as

> long as she's HYDRATED that there's nothing they can do for her. He

> said that if she had lost 10% of her body weight that would show she

> needed fluids.... he went on to give me this list of dehydration

> signs (like I'm an IDIOT).

>

> She has only had one poopy diaper today... and I managed to get her

> to eat this morning... so hopefully she is getting better. But I

> just feel like IV fluids would have helped her had we taken her in

> right when the vomitting started. Now I have to wonder how far back

> this is all going to set her yk? And now how compromised is her

> immune system going to be for the rest of the winter?? (ftr, all my

> other kids had this same bug and were over it within 24hours!)

>

> I'm frusterated because these dr's do NOT know anything about mito

> yet they refuse to listen to me! My child is not supposed to fast!

> We almost lost her 2 years ago and now you are trying to tell me

> that I am over-reacting?!?!?!?

>

> UGh..... anyway. I'm just frusterated. We have an appt soon at Mayo

> and I REALLY need to get VERY specific WRITTEN instructions from her

> dr about what we are supposed to do in these situations.

>

> le

>

> >

> > >

> > > le, We also have the few hour rule. If they cannot keep

> food

> > and fluids down and are vomiting or have diarrhea for more than a

> > few hours we head off to the ER or if you are lucky try to get

> > direct admitted.

> >

> > Hope it works out well, Dawn

>

>

>

>

>

>

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

>

[Guest guest]

Do you see Dr. Whiteman? I got a very basic protocal from him which

really hasn't helped much and so another doc at Mayo (our GI) was going to

write another very specific one for us. When I spoke to Dr. Whiteman about

the issue he was not too pleased about us needing another one. He said they

cannot push the in-hospital staff to admit, treat, or keep a patient in even

when they feel the patient should be. He said it was up to the head of the

unit the child was staying in to decide when and what to do. This was very

confusing to me and made me really doubt that future trips to the hospital

would be much different than the last trip. I really thought they would

understand Mito better and know the risk of not treating a Mito child.

Locally I think the docs are getting better as I have spent a long time

trying to educate them, but honestly I haven't had a child inpatient locally

since the spring so who knows. I just don't understand why our specialists

don't have more power in the hospital (according to Dr. Whiteman anyway).

If he is the specialist for our children's disorder, shouldn't the hospital

listen to his advice? If a patient is in for neurological surgery then the

neurologists and neurosurgeons seem to be in charge. Isn't that the case

with our kids too???

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: how do you get the ER dr to listen?

>

>

> We've had 2 bouts with the flu with Lea in the last 2mos. The first

> time was in November- after about 8 hours of throwing up/not keeping

> anything down- we took her to the ER. The dr there was VERY hesitant

> to do anything for her- he kept telling me that it was just a simple

> flu bug, yadda yadda yadda.... Even after all the info I gave him on

> mito (and after he admitted he knew little about it). I told him I

> was NOT leaving until she was given fluids... and they finally gave

> in. But it was like they were punishing me, as though they thought I

> was over-reacting... by making me hold her down as they stuck the IV

> in a vein in her head.... by keeping us in a very uncomfortable ER

> room with nothing but a exam table (I was 8mos pg at the time) and

> offering me no comfort measures (like a meal or a drink or a simple

> bathroom break!). She recovered VERY quickly from this bug, within

> 24hours she was almost completely normal.

>

> A couple weeks later we were at Mayo and I asked her dr once again

> if this was appropriate (what we had done) and she said YES-- that

> we need to treat aggressively.

>

> Once again Lea got sick this past Sunday... and while the vomiting

> passed w/in 8 hours or so, the diahrrea continues 4 days later. We

> did NOT take her to the ER immediately this time, instead tried to

> treat it (the vomiting) at home. Finally after days of diahrrea we

> took her to the ER yesterday. Lea was refusing to eat/drink and was

> having very few wet diapers. She WAS however, drooling and tearing.

> Dh took Lea in himself (which I hate, but I am home with a newborn),

> and the ER doc sent him home! Lea is having a hard time recovering

> from this... now hopefully we are over the " hump " as far as the

> virus goes, yet I feel like it's going to be a long road back

> to " normal " .

>

> I ended up calling the ER dr, (different one from last time) and

> interesting enough... he admitted to only knowing the " basics " of

> mito. (like he is going to admit he knows NOTHING) He said that as

> long as she's HYDRATED that there's nothing they can do for her. He

> said that if she had lost 10% of her body weight that would show she

> needed fluids.... he went on to give me this list of dehydration

> signs (like I'm an IDIOT).

>

> She has only had one poopy diaper today... and I managed to get her

> to eat this morning... so hopefully she is getting better. But I

> just feel like IV fluids would have helped her had we taken her in

> right when the vomitting started. Now I have to wonder how far back

> this is all going to set her yk? And now how compromised is her

> immune system going to be for the rest of the winter?? (ftr, all my

> other kids had this same bug and were over it within 24hours!)

>

> I'm frusterated because these dr's do NOT know anything about mito

> yet they refuse to listen to me! My child is not supposed to fast!

> We almost lost her 2 years ago and now you are trying to tell me

> that I am over-reacting?!?!?!?

>

> UGh..... anyway. I'm just frusterated. We have an appt soon at Mayo

> and I REALLY need to get VERY specific WRITTEN instructions from her

> dr about what we are supposed to do in these situations.

>

> le

>

> >

> > >

> > > le, We also have the few hour rule. If they cannot keep

> food

> > and fluids down and are vomiting or have diarrhea for more than a

> > few hours we head off to the ER or if you are lucky try to get

> > direct admitted.

> >

> > Hope it works out well, Dawn

>

>

>

>

>

>

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

>

[Guest guest]

He said they

> cannot push the in-hospital staff to admit, treat, or keep a

patient in even

> when they feel the patient should be. He said it was up to the

head of the

> unit the child was staying in to decide when and what to do. This

was very

> confusing to me and made me really doubt that future trips to the

hospital

> would be much different than the last trip.

Darla-

This was the SAME exact conversation I had with Lea's pediatrician

yesterday. See, I had spoken to the ped on Wednesday to lhk what was

going on with Lea and this stomach bug. She recommended we take Lea

to the ER (she speaks to Lea's mito dr often). It was our choice to

take Lea to the local ER (the ped is an hour away) She said that was

ok if I felt we could get adequate care for our special situation

there. (and we had Lea there before and while the care wasn't

great, at least in the *end* they listened to me) She said that she

had called before we got there and had given the ER dr very specific

instructions on how to handle Lea, which, obviously the head of the

ER compltely chose to ignore.

Now I know that in the future we need to travel the hour to go to

the hospital where Lea's pediatrician is.... But for now I am VERY

upset. I don't understand why he couldn't just follow the advice

from the dr who knows Lea's case!!!!!!!!!!

It's so frusterating. I guess I should be happy though that we have

found a good pediatrician... even if it is a one hour drive one way.

le

[Guest guest]

He said they

> cannot push the in-hospital staff to admit, treat, or keep a

patient in even

> when they feel the patient should be. He said it was up to the

head of the

> unit the child was staying in to decide when and what to do. This

was very

> confusing to me and made me really doubt that future trips to the

hospital

> would be much different than the last trip.

Darla-

This was the SAME exact conversation I had with Lea's pediatrician

yesterday. See, I had spoken to the ped on Wednesday to lhk what was

going on with Lea and this stomach bug. She recommended we take Lea

to the ER (she speaks to Lea's mito dr often). It was our choice to

take Lea to the local ER (the ped is an hour away) She said that was

ok if I felt we could get adequate care for our special situation

there. (and we had Lea there before and while the care wasn't

great, at least in the *end* they listened to me) She said that she

had called before we got there and had given the ER dr very specific

instructions on how to handle Lea, which, obviously the head of the

ER compltely chose to ignore.

Now I know that in the future we need to travel the hour to go to

the hospital where Lea's pediatrician is.... But for now I am VERY

upset. I don't understand why he couldn't just follow the advice

from the dr who knows Lea's case!!!!!!!!!!

It's so frusterating. I guess I should be happy though that we have

found a good pediatrician... even if it is a one hour drive one way.

le

[Guest guest]

A good doc can be hard to find. Sounds like a keeper. We are battling a

nasty bug here as well and both girls are really struggling. I am trying to

push the fluids to keep them out of the hospital but know the best would be

IV fluids. I just don't know if I want to go through all that right now if

I don't have to. I just hope both girls get through it with no strokes or

setbacks. Hope it is starting to look up some your way.

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: le- how do you get the ER dr to listen?

>

>

> He said they

> > cannot push the in-hospital staff to admit, treat, or keep a

> patient in even

> > when they feel the patient should be. He said it was up to the

> head of the

> > unit the child was staying in to decide when and what to do. This

> was very

> > confusing to me and made me really doubt that future trips to the

> hospital

> > would be much different than the last trip.

>

>

> Darla-

>

> This was the SAME exact conversation I had with Lea's pediatrician

> yesterday. See, I had spoken to the ped on Wednesday to lhk what was

> going on with Lea and this stomach bug. She recommended we take Lea

> to the ER (she speaks to Lea's mito dr often). It was our choice to

> take Lea to the local ER (the ped is an hour away) She said that was

> ok if I felt we could get adequate care for our special situation

> there. (and we had Lea there before and while the care wasn't

> great, at least in the *end* they listened to me) She said that she

> had called before we got there and had given the ER dr very specific

> instructions on how to handle Lea, which, obviously the head of the

> ER compltely chose to ignore.

>

> Now I know that in the future we need to travel the hour to go to

> the hospital where Lea's pediatrician is.... But for now I am VERY

> upset. I don't understand why he couldn't just follow the advice

> from the dr who knows Lea's case!!!!!!!!!!

>

> It's so frusterating. I guess I should be happy though that we have

> found a good pediatrician... even if it is a one hour drive one way.

>

> le

>

>

>

>

>

>

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

>

[Guest guest]

A good doc can be hard to find. Sounds like a keeper. We are battling a

nasty bug here as well and both girls are really struggling. I am trying to

push the fluids to keep them out of the hospital but know the best would be

IV fluids. I just don't know if I want to go through all that right now if

I don't have to. I just hope both girls get through it with no strokes or

setbacks. Hope it is starting to look up some your way.

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: le- how do you get the ER dr to listen?

>

>

> He said they

> > cannot push the in-hospital staff to admit, treat, or keep a

> patient in even

> > when they feel the patient should be. He said it was up to the

> head of the

> > unit the child was staying in to decide when and what to do. This

> was very

> > confusing to me and made me really doubt that future trips to the

> hospital

> > would be much different than the last trip.

>

>

> Darla-

>

> This was the SAME exact conversation I had with Lea's pediatrician

> yesterday. See, I had spoken to the ped on Wednesday to lhk what was

> going on with Lea and this stomach bug. She recommended we take Lea

> to the ER (she speaks to Lea's mito dr often). It was our choice to

> take Lea to the local ER (the ped is an hour away) She said that was

> ok if I felt we could get adequate care for our special situation

> there. (and we had Lea there before and while the care wasn't

> great, at least in the *end* they listened to me) She said that she

> had called before we got there and had given the ER dr very specific

> instructions on how to handle Lea, which, obviously the head of the

> ER compltely chose to ignore.

>

> Now I know that in the future we need to travel the hour to go to

> the hospital where Lea's pediatrician is.... But for now I am VERY

> upset. I don't understand why he couldn't just follow the advice

> from the dr who knows Lea's case!!!!!!!!!!

>

> It's so frusterating. I guess I should be happy though that we have

> found a good pediatrician... even if it is a one hour drive one way.

>

> le

>

>

>

>

>

>

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

>