Re: Re: 17 years old need help and support

October 7, 2011

I agree that it is uncommon disease and can be easily misdiagnosed or missed but

if the symptoms are persisting it should be investigated further rather than

putting it as psychiatric disorder. This is gross negligence. I can understand

your frustration. My daughter was diagnosed with A recently and it was picked up

very quickly. She had mentioned on couple of occasions that she felt as if the

food was sticking in her throat. The GI who is also a good friend of mine

suggested that we try a short course of PPIs and if does not improve the

situation, she should have endoscopy and manometry. It was the latter which

clinched the diagnosis. We decided to have the dilatation first after extensive

research in South Carolina in December this year. Although our GI and others

suggested that HM would be the treatment of choice as she is young. I have

looked at the evidence and there is no difference in the outcome in the long

term between the two. I am sure HM can definitely be done after dilatation and

there is lot of expertise available but after myotomy failure, not many GI have

enough experience for dilatation.

I hope your problem gets sorted ASAP

anil gupta

achalasia

From: lindsaykite@...

Date: Fri, 7 Oct 2011 12:35:45 +0000

Subject: Re: 17 years old need help and support

Scarlett, I feel your pain. It is extremely frustrating trying to find

medical staff who can give you answers. This condition is so rare, no-one I

know has ever heard of it, and consequently no-one really understands it. I am

sure some think this problem is 'in my head'.

Glad you found this site. I only just got diagnosed last month and am still

trying to process all this information.

I hope you get sorted out and get the help you need.

from Australia

>

> Hello there my name is Scarlett May Mendez. I have been having back pain and

constant regurgitation. I am 5'6 and a half and my weight has plumbed to an

unhealthy 87-90 pounds as it varies by day. I feel like i have entered the

biggest battle of my life with the support of my mom and grandma we met with

child protective service who because we went against medical advice of impatient

eating disorder treatment we met with them and they are actually on are side. It

is just humilaiting because my mother is the best mom better thn all the doctors

as she has done so much reasearch as have i on achalsia as it is all my symptoms

but the doctors in my little corona town never mentioned it or looked for it.

They jumped straight to psychosomatic =[ i went to UCLA due to me having

Superior Mesenteric Artery Syndrome brought on by rapid weight loss i did in my

early teens going from 175 to 115 in a mere 7 months through what i foresaw as

being a diet though it was not healthy i knew i needed help and went to eating

disorder treatment completed it but still was not gaining significant weight and

then i had terrible chest pain and was rushed to e.r this is when i was sent to

the hospital and diagnosed with S.M.A i was treated and my weight was still low

but the s.m.a had opened up and i noticed though even it was open the

regurgitation was getting far worse at first i would swallow it because if my

s.m.a was fixed my doctors told me it was just acid reflux and as my weight

continued to go down i was hell bent on just swallowing the regurgitation to

keep some nutrients in this is what landed me in the E.R recently with a

distended stomach and vomiting buckets and buckets of food from days before.

> It was horrific and the doctors ran a test saw that my s.m.a was back. As

treatment progressed through me gaining weight via intravenous nutrients i was

still unable to swallow food and once the S.m.A got better and the vomiting and

regurgitation continued is when they said it was my eating disorder coming back

and all in my head now.

> My mother had to fight to get me sent from Loma Hospital to UCLA who

then saw i had a hernia and since the I.V over 2 months and 5 days of being

hospitalized stabilized me they ran one more test to figure out why i was

vomiting but the barium couldn't even pass so the test became inclusive and the

ct scan was done on only my lower stomach just proving that through the i.v my

s.m.a had healed.

> I never had anything done to my esophagus or the esophagus manometry done

which is shame because of the trouble the food got trying to go down to even

reach the stomach before it comes shooting out. The doctors based on my past

then wanted me sent impatient for an eating disorder treatment because i was

> psycho symptomatic doing it to myself and if i go home because what i have

isn't an eating disorder still vomiting im at risk and can sue but if in e.d

clinic still throwing up and told it is in my head even though i know i have no

control over this and my family knows this too. This hurt me so much because i

could not wrap my thoughts around this whole time simply doing this to myself

from the back pain they didn't look at twice to misdiagnosing me with acid

reflux to even at Loma Hospital before they even saw my s.m.a saying it

was eating disorder and made me have no t.v in the hospital

> or phone and

> journaling after every vomit trying to get me to write my thoughts about

vomiting which was humiliating because i don't know why i would vomit but im ure

they wanted me to write like i made myself through my mind vomit cause i dont

know sad and this went on for the first week in the hospital as they shoveled

all foods down my throat, before i was transferred to the G.I team there and i

did it all without complaint cause they are doctors after all and who am i but

just a crazed eating disorder girl who has no control over her vomit. It

actually wasnt until i regurgitated practically on the pediatric team that they

sent me to g.i but by then my s.m.a got worse and then i had to transfer to

ucla for help where they fixed the s.m.a and what they thought could have been a

hernia but with the regurgitation persisting and that since they only see eating

disorder written on my head they continue to push it down my throat. My mother

and me saw past that and went against there recommendation for impatient because

we knew we needed this test because

> I cant keep food down besides like broth and grapes sometimes if im lucky

> my throat makes a noise like a croaking

> i have back pain constantly that my doctors had the nerve to say it was only

because i was in the hospital for so long and had to lie in bed all day but now

that i'm not in the hospital it is still there!

> diarrhea

> there is no way i could wrap my head around this just being an eating disorder

> then reading what you guys put i feel so not alone i relate with everything

that it saddens me because none of my doctors listened and me and my mother are

fighting to keep me out of impatient it is so embarrassing.

>

October 7, 2011

Thank you so much for your support I will be unable to get full answers til

tuesday to see if my docotor can get a referral for the test done or if I will

be sent to impatient for an e.d and have to wait for someone there to recognize

this test should be done I can only imagine how detrimental it would be to other

girls who do have e.d to see me throw up on myself and I am afraid of

regurgitating on myself in group or something to me this whole sitution doesn't

make sense =(

Anil Kumar Gupta <anil_gupta70@...> wrote:

>

>I agree that it is uncommon disease and can be easily misdiagnosed or missed

but if the symptoms are persisting it should be investigated further rather than