Update on the clueless mainstream doc situation

[Guest guest]

You are all so great - this is one place I knew I could go to for

support. I completely agree with and appreciate your advice and

research, etc. I will print and use that info. with these doctors.

Believe me, I have been VERY vocal since we came here. My husband

just turns red whenever I go off on these " professionals " which has

been quite often over the past now FOUR days that I've watched my

daughter suffer under their " care " .

Here's how I see the situation (and what I tell everyone I come in

contact with).

1. The immediate need (problem) is nutrition. She needs nutrition

in her body. This requires a feeding tube. Putting one through her

nose is temporary & will not give us enough time to get her eating

again. Plus it would set her back MUCH further with her oral

defensiveness. She needs a peg tube.

2. She needs to have her GI system checked (this ideally could be

done while she is under for the tube insertion). She could possibly

have treatable GI issues that have caused her aversion to food. If

food = pain then she's learned to avoid pain by avoiding food.

3. She's going to need intensive therapy with people who have a

clue about autism (do any people like that exist outside of the DAN

movement?) to overcome this aversion to food. If there's a GI issue

we can treat that through the tube and then she will hopefully learn

to associate pleasure with food.

Is that too much to ask? Man, I'm about to crawl out of my skin in

here. My latest stretegy is to go out to the nurses station and

demand to look through her chart whenever the doctors are around.

They seem to get a bit nervous when I do that. I also just WENT OFF

last night to some friends that were up to visit. Believe me, it

was LOUD and the developmental pediatrician (Ms. Risperidol) got a

good earful. Amazingly enough, we had quite a few consults today -

just not a GI - the main one we NEED!!

Here are a few recent quotes to these morons:

* " I'm watching my daughter slowly starve to death you are not

doing a (fill in the blank) thing to help her. "

* " No offense but why are you even here for a consult? We've been

here for 4 days and have not have a GI consult for OBVIOUS GI

issues. "

* " I have an aversion to snakes. If you wanted me to overcome my

fear you'd have to go slow (video of snakes, pictures of snakes,

looking at a snake from a safe distance, etc.) If you began this

therapy by throwing me in a pit of snakes I may never be able to

overcome the aversion. Putting a feeding tube in our daughter's

nose (oral defensiveness - food aversion) would be like throwing her

in the pit of snakes. "

* " We are absolutely NOT going to give our three year old daughter

an anti-psychotic drug and you can go ahead and write that in all of

your charts RIGHT NOW "

* " If she didn't have autism would you help her? "

I'm really going out of my mind here. They think I'm an idiot

because our daughter is GFCF. (She had eating issues before the

diet and many improvements were noted when she went off milk &

gluten). This is absolutely ridiculous! I can just see the GI

specialist not wanting to scope her because of her autism. This is

just such a bunch of CRAP!

Thanks for listing and for your encouragement-

Joy

[Guest guest]

I have no idea where you live, but are there any local advocacy

groups that you could get in contact with?

Anyone who could help you?

Does she have a case manager of any type?

Those NG tubes are so uncomfortable. Yuck.

I am assuming that they only have IV fluids in her right now?

Even someone from a local autism group?

How about a REPORTER?

(desperate, but probably an effective method to get what you

want quickly... somehow a lead story of 3 year old girl starving to

death in local hospital won't get the hospital any good PR...)

Jody

[Guest guest]

Why don't you contact Dr.Krigsman and explain your situation to him. He may

agree to talk (over the phone as he is in NY) to these so called doctors and

explain to them why your daughter might need a GI specialist and he may even

explain to this GI what to do (the right kind of things to look for).

Just a suggestion.

Hope your daughter gets better soon.

Jay

littlenoord wrote:

You are all so great - this is one place I knew I could go to for

support. I completely agree with and appreciate your advice and

research, etc. I will print and use that info. with these doctors.

Believe me, I have been VERY vocal since we came here. My husband

just turns red whenever I go off on these " professionals " which has

been quite often over the past now FOUR days that I've watched my

daughter suffer under their " care " .

Here's how I see the situation (and what I tell everyone I come in

contact with).

1. The immediate need (problem) is nutrition. She needs nutrition

in her body. This requires a feeding tube. Putting one through her

nose is temporary & will not give us enough time to get her eating

again. Plus it would set her back MUCH further with her oral

defensiveness. She needs a peg tube.

2. She needs to have her GI system checked (this ideally could be

done while she is under for the tube insertion). She could possibly

have treatable GI issues that have caused her aversion to food. If

food = pain then she's learned to avoid pain by avoiding food.

3. She's going to need intensive therapy with people who have a

clue about autism (do any people like that exist outside of the DAN

movement?) to overcome this aversion to food. If there's a GI issue

we can treat that through the tube and then she will hopefully learn

to associate pleasure with food.

Is that too much to ask? Man, I'm about to crawl out of my skin in

here. My latest stretegy is to go out to the nurses station and

demand to look through her chart whenever the doctors are around.

They seem to get a bit nervous when I do that. I also just WENT OFF

last night to some friends that were up to visit. Believe me, it

was LOUD and the developmental pediatrician (Ms. Risperidol) got a

good earful. Amazingly enough, we had quite a few consults today -

just not a GI - the main one we NEED!!

Here are a few recent quotes to these morons:

* " I'm watching my daughter slowly starve to death you are not

doing a (fill in the blank) thing to help her. "

* " No offense but why are you even here for a consult? We've been

here for 4 days and have not have a GI consult for OBVIOUS GI

issues. "

* " I have an aversion to snakes. If you wanted me to overcome my

fear you'd have to go slow (video of snakes, pictures of snakes,

looking at a snake from a safe distance, etc.) If you began this

therapy by throwing me in a pit of snakes I may never be able to

overcome the aversion. Putting a feeding tube in our daughter's

nose (oral defensiveness - food aversion) would be like throwing her

in the pit of snakes. "

* " We are absolutely NOT going to give our three year old daughter

an anti-psychotic drug and you can go ahead and write that in all of

your charts RIGHT NOW "

* " If she didn't have autism would you help her? "

I'm really going out of my mind here. They think I'm an idiot

because our daughter is GFCF. (She had eating issues before the

diet and many improvements were noted when she went off milk &

gluten). This is absolutely ridiculous! I can just see the GI

specialist not wanting to scope her because of her autism. This is

just such a bunch of CRAP!

Thanks for listing and for your encouragement-

Joy

Many frequently asked questions and answers can be found at

<http://www.autism-rxguidebook.com/forums>

[Guest guest]

They think I'm an idiot because our daughter is GFCF. (She had eating issues

before the diet and many improvements were noted when she went off milk &

gluten). This is absolutely ridiculous!

Although not all succumb, when physicians obtain a certain level of

omniscience, they need neither lab-tests nor parental observations in

order to impose doctrine.

I provided some citations to a parent in a not large Az town a few years

ago. The town had one gi-practice with seven physicians. The parent and

child were forever banned from the practice -- the parent's crime:

daring to provide Medline citations.

1: Cochrane Database Syst Rev. 2004;(2):CD003498.

Gluten- and casein-free diets for autistic spectrum disorder.

Millward C, Ferriter M, Calver S, Connell- G.

BACKGROUND: It has been suggested that peptides from gluten and casein may have

a role in the origins of autism and that the physiology and psychology of autism

might be explained by excessive opioid activity linked to these peptides.

Research has reported abnormal levels of peptides in the urine and cerebrospinal

fluid of persons with autism. If this is the case, diets free of gluten and /or

casein should reduce the symptoms associated with autism. OBJECTIVES: To

determine the efficacy of gluten- and/or casein- free diets as an intervention

to improve behaviour, cognitive and social functioning in individuals with

autism. SEARCH STRATEGY: Electronic searching of abstracts from the Cochrane

Library (Issue 3, 2003), PsycINFO (1971- May 2003), EMBASE (1974- May 2003),

CINAHL (1982- May 2003), MEDLINE (1986- May 2003), ERIC (1965-2003), LILACS (to

2003) and the specialist register of the Cochrane Complementary Medicine Field

(January 2004). Review bibliographies were also examined to identify potential

trials. SELECTION CRITERIA: All randomised controlled trials involving

programmes which eliminated gluten, casein or both gluten and casein from the

diets of individuals diagnosed with autistic spectrum disorder. DATA COLLECTION

AND ANALYSIS: Abstracts of studies identified in searches of electronic

databases were read and assessed to determine whether they might meet the

inclusion criteria. The authors independently selected the relevant studies from

the reports identified in this way. As only one trial fitted the inclusion

criteria, no meta-analysis is currently possible and data are presented in

narrative form. MAIN RESULTS: The one trial included reported results on four

outcomes. Unsurprisingly in such a small-scale study, the results for three of

these outcomes (cognitive skills, linguistic ability and motor ability) had wide

confidence intervals that spanned the line of nil effect. However, the fourth

outcome, reduction in autistic traits, reported a significant beneficial

treatment effect for the combined gluten- and casein- free diet. REVIEWERS'

CONCLUSIONS: This is an important area of investigation and large scale, good

quality randomised controlled trials are needed.

PMID: 15106205 [PubMed]

2: Pediatrics. 2003 Oct;112(4):939-42.

Constipation with acquired megarectum in children with autism.

Afzal N, Murch S, Thirrupathy K, Berger L, Fagbemi A, Heuschkel R.

Centre for Pediatric Gastroenterology, Royal Free Hospital, Hampstead, London,

United Kingdom.

OBJECTIVE: Recent evidence suggests that autistic children may have significant

gastrointestinal symptoms. Although constipation occurs in 2% to 5% of healthy

children, its clinical diagnosis is often difficult in children with behavioral

disorders. We thus aimed to assess the prevalence of fecal loading in autistic

children with gastrointestinal symptoms and to identify possible predictors of

constipation. METHODS: We studied abdominal radiographs of 103 autistic children

(87 boys) who were referred for gastroenterological assessment, in comparison

with 29 control radiographs from children who were referred to the emergency

department, most with abdominal pain. Radiographs were scored independently, in

blinded manner, by 4 pediatric gastroenterologists and a radiologist. The

severity of constipation was determined using a validated index. Details of

stool habit, abdominal pain, dietary history, and laxative use were obtained

from case notes. RESULTS: The incidence of constipation in the control subjects

with abdominal pain was higher than reported for normal children. Despite this,

moderate or severe constipation was more frequent in the autistic group than in

the control subjects (36% vs 10%). Analysis of rectosigmoid loading showed more

striking differences (54.4% of autistic children had moderate/severe loading or

acquired megarectum compared with 24.1% of control subjects). Multivariate

regression analysis showed consumption of milk to be the strongest predictor of

constipation in the autistic group, whereas stool frequency, gluten consumption,

soiling, and abdominal pain were not predictive of constipation. CONCLUSIONS:

Constipation is a frequent finding in children with gastrointestinal symptoms

and autism, particularly in the rectosigmoid colon, often with acquired

megarectum. The absence of any correlation between the clinical history and the

degree of fecal impaction in autistic children confirms the importance of an

abdominal radiograph in the assessment of their degree of constipation.

PMID: 14523189 [PubMed]

3: Nutr Neurosci. 2002 Sep;5(4):251-61.

A randomised, controlled study of dietary intervention in autistic syndromes.

Knivsberg AM, Reichelt KL, Hoien T, Nodland M.

Center for Reading Research, Stavanger University College, Norway.

ann-mari.knivsberg@...

Impaired social interaction, communication and imaginative skills characterize

autistic syndromes. In these syndromes urinary peptide abnormalities, derived

from gluten, gliadin, and casein, are reported. They reflect processes with

opioid effect. The aim of this single blind study was to evaluate effect of

gluten and casein-free diet for children with autistic syndromes and urinary

peptide abnormalities. A randomly selected diet and control group with 10

children in each group participated. Observations and tests were done before and

after a period of 1 year. The development for the group of children on diet was

significantly better than for the controls.

Publication Types:

Clinical Trial

Randomized Controlled Trial

PMID: 12168688 [PubMed]

4: Nutr Neurosci. 2001;4(1):25-37.

Reports on dietary intervention in autistic disorders.

Knivsber AM, Reichelt KL, Nodland M.

Center for Reading Research, Stavanger College, Norway.

ann-mari.knivsberg@...

Autism is a developmental disorder for which no cure currently exists. Gluten

and/or casein free diet has been implemented to reduce autistic behaviour, in

addition to special education, since early in the eighties. Over the last twelve

years various studies on this dietary intervention have been published in

addition to anecdotal, parental reports. The scientific studies include both

groups of participants as well as single cases, and beneficial results are

reported in all, but one study. While some studies are based on urinary peptide

abnormalities, others are not. The reported results are, however, more or less

identical; reduction of autistic behaviour, increased social and communicative

skills, and reappearance of autistic traits after the diet has been broken.

Publication Types:

Review

Review, Tutorial

PMID: 11842874 [PubMed]

littlenoord wrote:

>You are all so great - this is one place I knew I could go to for

>support. I completely agree with and appreciate your advice and

>research, etc. I will print and use that info. with these doctors.

>Believe me, I have been VERY vocal since we came here. My husband

>just turns red whenever I go off on these " professionals " which has

>been quite often over the past now FOUR days that I've watched my

>daughter suffer under their " care " .

>

>Here's how I see the situation (and what I tell everyone I come in

>contact with).

>

>1. The immediate need (problem) is nutrition. She needs nutrition

>in her body. This requires a feeding tube. Putting one through her

>nose is temporary & will not give us enough time to get her eating

>again. Plus it would set her back MUCH further with her oral

>defensiveness. She needs a peg tube.

>

>2. She needs to have her GI system checked (this ideally could be

>done while she is under for the tube insertion). She could possibly

>have treatable GI issues that have caused her aversion to food. If

>food = pain then she's learned to avoid pain by avoiding food.

>

>3. She's going to need intensive therapy with people who have a

>clue about autism (do any people like that exist outside of the DAN

>movement?) to overcome this aversion to food. If there's a GI issue

>we can treat that through the tube and then she will hopefully learn

>to associate pleasure with food.

>

>Is that too much to ask? Man, I'm about to crawl out of my skin in

>here. My latest stretegy is to go out to the nurses station and

>demand to look through her chart whenever the doctors are around.

>They seem to get a bit nervous when I do that. I also just WENT OFF

>last night to some friends that were up to visit. Believe me, it

>was LOUD and the developmental pediatrician (Ms. Risperidol) got a

>good earful. Amazingly enough, we had quite a few consults today -

>just not a GI - the main one we NEED!!

>

>Here are a few recent quotes to these morons:

>

>* " I'm watching my daughter slowly starve to death you are not

>doing a (fill in the blank) thing to help her. "

>

>* " No offense but why are you even here for a consult? We've been

>here for 4 days and have not have a GI consult for OBVIOUS GI

>issues. "

>

>* " I have an aversion to snakes. If you wanted me to overcome my

>fear you'd have to go slow (video of snakes, pictures of snakes,

>looking at a snake from a safe distance, etc.) If you began this

>therapy by throwing me in a pit of snakes I may never be able to

>overcome the aversion. Putting a feeding tube in our daughter's

>nose (oral defensiveness - food aversion) would be like throwing her

>in the pit of snakes. "

>

>* " We are absolutely NOT going to give our three year old daughter

>an anti-psychotic drug and you can go ahead and write that in all of

>your charts RIGHT NOW "

>

>* " If she didn't have autism would you help her? "

>

>I'm really going out of my mind here. They think I'm an idiot

>because our daughter is GFCF. (She had eating issues before the

>diet and many improvements were noted when she went off milk &

>gluten). This is absolutely ridiculous! I can just see the GI

>specialist not wanting to scope her because of her autism. This is

>just such a bunch of CRAP!

>

>Thanks for listing and for your encouragement-

>Joy

>

>

>