Re: mitoldies: upset with ER visit

[Guest guest]

,

Thats just terrible! What a false stereotype. You have reason to be upset! How is she today? Praying...

[Guest guest]

,

I am so sorry you had such a horrible visit at the ER. I can understand your frustration with the doctors because I have been there too. I hate those "they aren't sick enough for it to be that" comments.

HUGS!!!!!!!!

[Guest guest]

Yesterday afternoon I took my 12 yr old mito girl to ER with chest pain, trouble breathing, back pain and a fever of 103. Keep in mind she is also immunedeficient and has a central line.we gett there and they gave her motrin and tylenol and I had already accessed her port a cath.they put her on a heart monitor. they did a CBC and UA.so far so good until....

Hi ,

I am soooo sorry you had such a bad experience in the ER. Did they do blood cultures?? Anyone who has a central line with a fever should ALWAYS get cultures both from the line and peripherally. It sounds like she could be bacteremic, which is when bacteria gets in the blood. This can be pretty serious. I have a central line and actually haven't been feeling well either and had chills last night...no fever, but sometimes I can have line infections without a fever. I had to go to the ER also just to get blood cultures and a CBC.

Have you called her primary care doctor or someone who knows her well? If she is still running a fever, you really need to take her back and demand a better evaluation. With a white blood cell count of 15, it's pretty likely she has some sort of infection.

Please keep us updated.

Malisa

[Guest guest]

GRRRRRRRRRRRRRR........what a bummer! Is is possible for your

daughter's PCP to write an emergency protocol to take to ER as

needed? Or try taking a copy of Dr. Cohen's article, " Management

Strategy for Acute Illness in Patients with Mitochondrial

Cytopathy. " I carry this in my emergency packet and the ER docs

usually read it and sometimes (!) follow those guidelines.

Take care,

Barbara

> Hello everyone,

> Yesterday afternoon I took my 12 yr old mito girl to ER with chest

pain,

> trouble breathing, back pain and a fever of 103. Keep in mind she

is also

> immunedeficient and has a central line.

> we gett there and they gave her motrin and tylenol and I had

already accessed

> her port a cath.

> they put her on a heart monitor. they did a CBC and UA.

> so far so good until....

> the doc said she looked good and didnt appear to be terribly sick

as kids

> that sick arent looking that good!!!!!

> they told me her CBC and UA were normal and sent us home.

> Mind you her heart rate was averaging 132 and her sats were around

85-90....

> As I was leaving I demanded a copy of the blood work and a temp.

her temp was

> still 101.9 and her CBC said ..

> WBC 15 with elevated granulocytes, neutrophils, monocytes, segs

and bands

> and low lymphocytes,

> her UA showed trace blood and low potassium with greater than 80

ketones.

> they have a different idea of normal I guess than I do....

> I tried to tell them about her Mito...but they informed me that

Mito kids

> would not look this good and if it was mito we sure were lucky

becuase she

> obviously had it very mild...UGH!!!!!!!!!!!!!!!!!!

> they wouldnt even check her sugars....

> thanks for letting me vent....

> karen

[Guest guest]

I hate the ER. You'd think they'd be a little more cautious

considering her age. I'm convinced that being immunocompromised can

show a lower than acurate temperature reading. I can be extremely

ill with the mito and not have a fever over 100.3 Naturally, this

isn't high enough to alarm anyone but me ! The ER docs literally

had to help me undress and lift my legs onto the table the last time

I went and they said in their notes that I was in " no acute

distress. " This was after the Attending said " your labs all look

good so far but I can see your not doing well. " ????????? What the

heck ????? I had keytones and CO2 when I checked the lab records.

Sometimes I wonder if I should continue to get my records. It only

frustrates me more to see inaccurate they are. I can't tell you how

many times the residents (and attendings) have done a half-___ exam

(they never have me change into a gown) and then claimed they did a

thorough exam with normal findings.

I'm really sorry to hear your girl is not well. I'd stay on the PCP

about the situation and either write a letter of complaint or make

some phone calls to the ER Chief...higher if you don't get results

there.

Bug

[Guest guest]

, I'm sorry you and your daughter had to go through that. It isn't right!!! When I had my reaction from the nubane and was basically paralyzed and catatonic, I got my report from the ER a couple weeks later. It said I had moderate muscle weakness. I would think so! I couldn't move. Some ER doctors think that we look "too good" to be sick and don't understand about mito. Sometimes the same ER can be really helpful, I have found it depends on the doctors in. How is your daughter doing today?

Thinking of you,

a

Hello everyone,Yesterday afternoon I took my 12 yr old mito girl to ER with chest pain, trouble breathing, back pain and a fever of 103. Keep in mind she is also immunedeficient and has a central line.we gett there and they gave her motrin and tylenol and I had already accessed her port a cath.they put her on a heart monitor. they did a CBC and UA.so far so good until....the doc said she looked good and didnt appear to be terribly sick as kids that sick arent looking that good!!!!!they told me her CBC and UA were normal and sent us home.Mind you her heart rate was averaging 132 and her sats were around 85-90....As I was leaving I demanded a copy of the blood work and a temp. her temp was still 101.9 and her CBC said ..WBC 15 with elevated granulocytes, neutrophils, monocytes, segs and bands and low lymphocytes,her UA showed trace blood and low potassium with greater than 80 ketones.they have a different idea of normal I guess than I do....I tried to tell them about her Mito...but they informed me that Mito kids would not look this good and if it was mito we sure were lucky becuase she obviously had it very mild...UGH!!!!!!!!!!!!!!!!!!they wouldnt even check her sugars....thanks for letting me vent....

[Guest guest]

, that's an awful experience!I hope she really does get better as they

seemed to think she would. You and she will both be in my

pryaers tonight, Celia

> Hello everyone,

> Yesterday afternoon I took my 12 yr old mito girl to ER with chest pain,

> trouble breathing, back pain and a fever of 103. Keep in mind she is also

> immunedeficient and has a central line.

> we gett there and they gave her motrin and tylenol and I had already accessed

> her port a cath.

> they put her on a heart monitor. they did a CBC and UA.

> so far so good until....

> the doc said she looked good and didnt appear to be terribly sick as kids

> that sick arent looking that good!!!!!

> they told me her CBC and UA were normal and sent us home.

> Mind you her heart rate was averaging 132 and her sats were around 85-90....

> As I was leaving I demanded a copy of the blood work and a temp. her temp was

> still 101.9 and her CBC said ..

> WBC 15 with elevated granulocytes, neutrophils, monocytes, segs and bands

> and low lymphocytes,

> her UA showed trace blood and low potassium with greater than 80 ketones.

> they have a different idea of normal I guess than I do....

> I tried to tell them about her Mito...but they informed me that Mito kids

> would not look this good and if it was mito we sure were lucky becuase she

> obviously had it very mild...UGH!!!!!!!!!!!!!!!!!!

> they wouldnt even check her sugars....

> thanks for letting me vent....

> karen

[Guest guest]

I don't know what the situation is near you, but personally I have found

that a walk-in clinic is more helpful than the ER. If they can't handle it,

they send you to the ER with their referral which makes it a bit harder for

them to ignore you. I am sorry you had to go through everything.

laurie

> From: Mrsmurffy@...

> Reply-To:

> Date: Mon, 2 Feb 2004 10:18:49 EST

> To:

> Subject: : upset with ER visit

>

> Hello everyone,

> Yesterday afternoon I took my 12 yr old mito girl to ER with chest pain,

> trouble breathing, back pain and a fever of 103. Keep in mind she is also

> immunedeficient and has a central line.

> we gett there and they gave her motrin and tylenol and I had already accessed

> her port a cath.

> they put her on a heart monitor. they did a CBC and UA.

> so far so good until....

> the doc said she looked good and didnt appear to be terribly sick as kids

> that sick arent looking that good!!!!!

> they told me her CBC and UA were normal and sent us home.

> Mind you her heart rate was averaging 132 and her sats were around 85-90....

> As I was leaving I demanded a copy of the blood work and a temp. her temp was

> still 101.9 and her CBC said ..

> WBC 15 with elevated granulocytes, neutrophils, monocytes, segs and bands

> and low lymphocytes,

> her UA showed trace blood and low potassium with greater than 80 ketones.

> they have a different idea of normal I guess than I do....

> I tried to tell them about her Mito...but they informed me that Mito kids

> would not look this good and if it was mito we sure were lucky becuase she

> obviously had it very mild...UGH!!!!!!!!!!!!!!!!!!

> they wouldnt even check her sugars....

> thanks for letting me vent....

> karen

>

[Guest guest]

" Sometimes the same ER can be really helpful, I have found it

depends on the doctors in. "

That is true I must admit. I've had some that were TOO helpful.

One thought I had meningitis and was ready to admit me...thankfully

her Attending had more common sense. It ended up a UTI that induced

a flare. I've also had ER docs admit me and the GI Attending

release me the next day with NO treatment whatsoever...no IV, no

food, no nothing for over 20 hours...I tell ya by then I was about

at deaths door and demanded to be released. At that point I

couldn't even walk and was wheelchaired out. Strange...

bug