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

[Guest guest]

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

[Guest guest]

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

[Guest guest]

do you have a good relationship with your daughters regular

pediatrician? the pediatrician might be able to help with matters

in the er.

i always call our pediatrician first, then we go from there. the

ped will either call the er with instructions or meet us there!

hope that helps.

bethany

mom to brennan 8, palmer & anna grace (leighs) 5

> >

> > >

> > > 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

[Guest guest]

do you have a good relationship with your daughters regular

pediatrician? the pediatrician might be able to help with matters

in the er.

i always call our pediatrician first, then we go from there. the

ped will either call the er with instructions or meet us there!

hope that helps.

bethany

mom to brennan 8, palmer & anna grace (leighs) 5

> >

> > >

> > > 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

[Guest guest]

i forgot to add that we also have a letter written by a ped.

specialist on what to do for our daughter in case of an emergency.

Our specialist wrote this letter to take with us when we are on

vacation or in a place not familiar with our daugher!

bethany

> >

> > >

> > > 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

[Guest guest]

i forgot to add that we also have a letter written by a ped.

specialist on what to do for our daughter in case of an emergency.

Our specialist wrote this letter to take with us when we are on

vacation or in a place not familiar with our daugher!

bethany

> >

> > >

> > > 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

[Guest guest]

I struggled with this over the summer, thank goodness hasnt

gotten sick since the fall, and we havent been at the ER in months!

This summer though I actually took him to the ER with a temperature

of 107, they gave him tylenol, a popsicle and sent us home when it

was 104. I was FREAKED! I talked to our neurologist, pediatrician,

and GP, and the ped said to bring him in to be examined at the

clinic. problem was she wasnt available, so one of the other docs

checked him out and after calling me a liar (he said its impossible

to run a fever over 106, i told him to check the ER record, he

refused. he got an earful.) he said s fine, hes got a bug,

and chill out.

It took him weeks to bounce back.

We see our mito doc tommorrow, and I am planning on getting a very

clearly written letter that I can take with me to any doctors we see

in the future, outlining what needs to be done and watched for if he

gets sick. I hate having to educate the doctors about this

disease.. i know its so rare, and they cant really be expected to

know everything about every disease out there, but at the very least

they could be willing to ask questions when our child is in their

ER...

> >

> > >

> > > 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

[Guest guest]

I struggled with this over the summer, thank goodness hasnt

gotten sick since the fall, and we havent been at the ER in months!

This summer though I actually took him to the ER with a temperature

of 107, they gave him tylenol, a popsicle and sent us home when it

was 104. I was FREAKED! I talked to our neurologist, pediatrician,

and GP, and the ped said to bring him in to be examined at the

clinic. problem was she wasnt available, so one of the other docs

checked him out and after calling me a liar (he said its impossible

to run a fever over 106, i told him to check the ER record, he

refused. he got an earful.) he said s fine, hes got a bug,

and chill out.

It took him weeks to bounce back.

We see our mito doc tommorrow, and I am planning on getting a very

clearly written letter that I can take with me to any doctors we see

in the future, outlining what needs to be done and watched for if he

gets sick. I hate having to educate the doctors about this

disease.. i know its so rare, and they cant really be expected to

know everything about every disease out there, but at the very least

they could be willing to ask questions when our child is in their

ER...

> >

> > >

> > > 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

[Guest guest]

I am in a rush but do have lots of experience with this issue! I will

try to write you more on our experiences and what we plan to do in the

future. This can be such a frustrating issue.

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?

>

>

> I struggled with this over the summer, thank goodness hasnt

> gotten sick since the fall, and we havent been at the ER in months!

> This summer though I actually took him to the ER with a temperature

> of 107, they gave him tylenol, a popsicle and sent us home when it

> was 104. I was FREAKED! I talked to our neurologist, pediatrician,

> and GP, and the ped said to bring him in to be examined at the

> clinic. problem was she wasnt available, so one of the other docs

> checked him out and after calling me a liar (he said its impossible

> to run a fever over 106, i told him to check the ER record, he

> refused. he got an earful.) he said s fine, hes got a bug,

> and chill out.

> It took him weeks to bounce back.

> We see our mito doc tommorrow, and I am planning on getting a very

> clearly written letter that I can take with me to any doctors we see

> in the future, outlining what needs to be done and watched for if he

> gets sick. I hate having to educate the doctors about this

> disease.. i know its so rare, and they cant really be expected to

> know everything about every disease out there, but at the very least

> they could be willing to ask questions when our child is in their

> ER...

>

>

>

>

>

> > >

> > > >

> > > > 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]

I am in a rush but do have lots of experience with this issue! I will

try to write you more on our experiences and what we plan to do in the

future. This can be such a frustrating issue.

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?

>

>

> I struggled with this over the summer, thank goodness hasnt

> gotten sick since the fall, and we havent been at the ER in months!

> This summer though I actually took him to the ER with a temperature

> of 107, they gave him tylenol, a popsicle and sent us home when it

> was 104. I was FREAKED! I talked to our neurologist, pediatrician,

> and GP, and the ped said to bring him in to be examined at the

> clinic. problem was she wasnt available, so one of the other docs

> checked him out and after calling me a liar (he said its impossible

> to run a fever over 106, i told him to check the ER record, he

> refused. he got an earful.) he said s fine, hes got a bug,

> and chill out.

> It took him weeks to bounce back.

> We see our mito doc tommorrow, and I am planning on getting a very

> clearly written letter that I can take with me to any doctors we see

> in the future, outlining what needs to be done and watched for if he

> gets sick. I hate having to educate the doctors about this

> disease.. i know its so rare, and they cant really be expected to

> know everything about every disease out there, but at the very least

> they could be willing to ask questions when our child is in their

> ER...

>

>

>

>

>

> > >

> > > >

> > > > 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]

We have completely eliminated the need for the ER with Grace when fluids are needed. Dr. Cohen very willingly called my pediatrician and explaned her need for fluids and when. All we need to do is call our pediatrician when we feel it is necessary to go and she will direct admit her. We usually get very funny looks from the residents and nurses when they first assess her, but there is nothing they can do because they have to follow the admitting doctors orders.

Claim your Space NOW! Have fun sharing blogs, photos and music lists online.

[Guest guest]

We have completely eliminated the need for the ER with Grace when fluids are needed. Dr. Cohen very willingly called my pediatrician and explaned her need for fluids and when. All we need to do is call our pediatrician when we feel it is necessary to go and she will direct admit her. We usually get very funny looks from the residents and nurses when they first assess her, but there is nothing they can do because they have to follow the admitting doctors orders.

Claim your Space NOW! Have fun sharing blogs, photos and music lists online.

[Guest guest]

Hi everyone...just thought I would throw in my thoughts...we carry with us, everywhere, a copy of a letter from Ellie's geneticist stating exactly what she needs in the event of a virus, dehydration, vomiting, diarrhea, etc. It has helped us numerous times. This last time, the morning after Christmas, I also took with us the write-up from our visit with Dr. Shoffner (Dec. 21st). It stated in detail all of her abilities, disabilities, etc., plus his "directions" for IV fluids in the case of illness. Having these, which are signed by doctors and specialists, always help. We still have to do our part and explain what Mito is and how it affects her, etc., but generally have not had any issues.

BTW - Dr. Shoffer told us that Ellie's Complex IV Leigh's will most likely take her from us between the ages of 5 and 8. Needless to say this was like a punch in the stomach...he said her believes her issues to be in the "SURF01" chain. Because of the difference in her MRI's between 9/03 and 9/04 he feels she will likely regress with more brain lesions and "probably" respritory issues. I liked Dr. Shoffner, but he is very blunt. What do you all think?

KK

[Norton AntiSpam] Re: how do you get the ER dr to listen?

i forgot to add that we also have a letter written by a ped. specialist on what to do for our daughter in case of an emergency. Our specialist wrote this letter to take with us when we are on vacation or in a place not familiar with our daugher!bethany> > > > > > > > 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, DawnPlease contact mito-owner with any problems or questions.

[Guest guest]

Just wanted to pass along that our little fellow who has Leigh's will soon be 11 years old. The doctor's told us when he was diagnosed at the age of three, that he would not live past seven -- but he has proved them wrong -- in a big way! Although he has many issues, his health is much better now that it was at the time of his diagnosis. I know that things can change in the matter of seconds -- but just wanted you to know that sometimes no one's best guess can predict the future of these astounding kids!

Sue

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

BTW - Dr. Shoffer told us that Ellie's Complex IV Leigh's will most likely take her from us between the ages of 5 and 8. Needless to say this was like a punch in the stomach...he said her believes her issues to be in the "SURF01" chain. Because of the difference in her MRI's between 9/03 and 9/04 he feels she will likely regress with more brain lesions and "probably" respritory issues. I liked Dr. Shoffner, but he is very blunt. What do you all think?

[Guest guest]

Happy early birthday to your son. I am sure each birthday is such a

treasure knowing what the docs said. Just goes to show you that only God

knows how our lives will go. Each day is a blessing and to be cherished.

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

BTW - Dr. Shoffer told us that Ellie's Complex IV Leigh's will most likely

take her from us between the ages of 5 and 8. Needless to say this was like

a punch in the stomach...he said her believes her issues to be in the

" SURF01 " chain. Because of the difference in her MRI's between 9/03 and

9/04 he feels she will likely regress with more brain lesions and " probably "

respritory issues. I liked Dr. Shoffner, but he is very blunt. What do you

all think?

[Guest guest]

Sue...sorry for the slow response...but thank you for your words of encouragement! That is very hopeful for us...more than you know!

KK

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

BTW - Dr. Shoffer told us that Ellie's Complex IV Leigh's will most likely take her from us between the ages of 5 and 8. Needless to say this was like a punch in the stomach...he said her believes her issues to be in the "SURF01" chain. Because of the difference in her MRI's between 9/03 and 9/04 he feels she will likely regress with more brain lesions and "probably" respritory issues. I liked Dr. Shoffner, but he is very blunt. What do you all think?Please contact mito-owner with any problems or questions.

[Guest guest]

Sue,

You must think I am crazy - I did respond! But thank you again anyway! Hope everyone is staying warm!!

KK

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

BTW - Dr. Shoffer told us that Ellie's Complex IV Leigh's will most likely take her from us between the ages of 5 and 8. Needless to say this was like a punch in the stomach...he said her believes her issues to be in the "SURF01" chain. Because of the difference in her MRI's between 9/03 and 9/04 he feels she will likely regress with more brain lesions and "probably" respritory issues. I liked Dr. Shoffner, but he is very blunt. What do you all think?Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions.