Re: Getting Legal Right to make Medical Decisions for My Kids

February 23, 2006

Of course, nothing I say should be interpreted as legal advice. For

that you will need to see a lawyer. And you WILL need one - and a

good one. Expect to pay a lot and to go through 2 or 3.

You have to document that things were the way they used to be and your

husband went along with it, you have to document that you have

doctor's orders or some such, you have to document and have many

witnesses to your kids having problems on returning from visitation,

you have to get whatever parenting plan evaluating bureaucracy there

is involved (by disputing the parenting plan and doing the divorce the

" hard way, " ) and take control of that process by providing them with

fact after fact after fact supporting what you say is going on.

It is difficult and takes a long time, but the basic issue is he went

along with it for a while and is now being oppositional and causing

harm to THE CHILD in order to make your life difficult.

It also helps a lot to make him take the kid for long enough periods

of time that he has to deal with the consequences of dietary

indiscretion, then document that he feeds the kid whatever is bad for

them on the way back to your house....

Get a good lawyer. Who is very much on your side. Ask him what he

needs to have to win.

Then don't rely on the lawyer, it is YOUR job to create and have third

parties document the fact pattern that gives the lawyer what he says

he needs in order to strip your husband of some parenting rights

(medical decisionmaking is a parenting right).

Using experts is a massive mistake and is guaranteed to lose you the

case and bankrupt you.

It isn't a legal issue. It is a family issue. Do not let medicine be

tried, let your ex's care for your child be put on trial.

It doesn't matter that he chants that it " isn't proven, " what matters

is he USED to go along with it, and OTHER PEOPLE (like doctors you

take the kid to when he comes back to you messed up) see that the kid

has been made sick.

It is fundamentally a child abuse issue and needs to be addressed as such.

It is helpful to have a physician for the child who is on your side,

will testify, and whom you can bring him to repeatedly to document his

messed up state consequent to visitation events.

Also, correspond by e-mail with the ex and be very aware you and he

will keep all the messages and use them as evidence. Establish that

he used to do this when you were together (that is key - if he used to

do it as part of the family and you want to keep doing it the court is

going to be inclined to order it).

Spend some time reconstructing in your mind the history of how you

came to get the kid on the diet and what happened. Talk via e-mail

with your husband about it and get him to agree with anything where he

did actually notice positives, go along with it, discover

sensitivities, etc.

Try to get your husband to send you food and activity logs or

information for visitation - and YOU be totally cooperative and

helpful with HIS requests for child care information and assistance!

Expect this to take a few years.

Expect it to be very nasty.

Expect it to be expensive.

Expect the court to give undue weight to the results of the evaulation

bureaucracy - and if you make the mistake of letting alternative

medical itnerventions be the subject of the trial expect the ccourt to

give undue weight to mainstream opinion.

If you are very clearly putting your child's best interests above any

need to be combative with your ex, being as cooperative as possible in

trying to servve yoru child's best interests, and document that what

your ex is doing is different than what he used to do and is not in

your child's best interests you have some hope of prevailing.

Be patient. Time is on your side. ate, document, correspond.

Andy

>

> Hello All;

> This is kind of long. If in a hurry, please just read the first two

> paragraphs, the remainder is background info.

>

> I'm a long time member but haven't posted in forever. I'm trying to

> deal with a problem where my ex and I disagree about our kids and

> their need for special diet, etc. He's been exposing them to

> allergens, and insists there's not adequate proof that the diet is

> necessary, etc (although they have been on the diet for 4 yrs!). I

> have at this point agreed to joint custody, but the divorce is not

> final and so I can halt this agreement and go for a different

> arrangement given recent developments, but I need to garner some

> advice and resources on doing this right.

>

> I'm wondering what advice/experience other listmates can offer

> regarding getting the legal right to make medical decisions where my

> kids are concerned. I'm wondering who has been through this and what

> their experiences were. I am looking for names of experts that will be

> respected as authorities on food allergy/autism/childhood behavioral

> disorders, maybe names of attorneys (Phoenix AZ) and people with

> similar experiences and how they managed in court, and any legal

> precedents there might be, and even educational materials, especially

> videos that show the effects of proper diet and supplementation on

> behavioral disorders in kids. (Re: videos, books, etc, I need to know

> what is good rather than just taking a stab and buying something and

> having it not show what I need.)

>

> Through mediation the ex and I have made some agreements that I am

> trying to follow as best I can without harming my kids. One of those

> agreements is to abide by the recommendations of a YOu

mediator-appointed

> MD/mental health professional when the husband and I can't agree. As

> you can imagine, this person has no clue about diet and behavior, yada

> yada yada. I do have an attorney so I am not going it alone, but have

> been trying to stay out of court.

>

> So the aforementioned professional (the mediator-appointed MD/mental

> health prof) chose a doctor (that we'd used at one time for our kids)

> and this doc says that the way to clear up the disagreement between

> the ex-spouse and I about whether the kids really have these food

> allergies is to do a double-blind placebo controlled test on them and

> see if there are changes in behavior. Considering that there are about

> five major allergens and another handful of minor ones, this is a lot

> of testing and exposures.(This is an integrative pediatrician who is

> supposedly specializing in autism, he is not a DAN doc.) Basically you

> would need to throw them into serious mental/behavioral/physical

> distress in order for the doctors to actually see that there had been

> a change, especially since my kids have such a degree of anxiety

> around strangers that they are not apt to show aberrent behavior

> unless really really messed-up. Naturally it is the behavioral stuff

> that is most disturbing and dangerous. Constipation can be tolerated,

> whereas a 6 y/o girl running away from home cannot.

>

> We have results from one food allergy blood test showing that my son

> has all the allergies I say he has. The aforementioned doc cites a

> research article from Bastyr on the unreliability of food-allergy

> blood tests as his reason for preferring this exposure-method. My

> stack of diet and symptom diaries seem not be be adequate proof.

>

> I fear that we could have some serious consequences from exposing them

> to the allergens. It takes a LONG time for my kids to recover from

> exposures, and I don't know what kinds of behaviors could occur, but

> got a taste of it when my daughter decided to " run away " the other

> day. (She's not yet healed from the month or so of my ex giving her

> inappropriate foods.) All the folks who don't understand how food

> allergies can affect our kids would chalk this up to psycho-social

> factors and stress from having mom and dad divorce, but I know that

> she suffers from impulsivity and other behavioral disturbances when

> she is reacting to an allergen. She has the sense not to do things

> like this normally.

>

> Both kids, really, are SO normal when their diet is controlled that

> that's part of the problem, no one can believe that what I say is true

> because they have so few symptoms that are noticed at school or

> really, by anyone but me (ex-husband cannot see these behaviors, and

> when he does see them he says, " but that's normal for him/her. " ), my

> family can't see it, his family can't. But its for real. We've seen

> stims, non-verbal episodes, rage attacks, general noncommunicativeness

> (is that a word?!!), deep depression, serious anxiety. About a month

> ago my daughter was diagnosed with asthma...`

>

> They never got an autism dx, or much in the way of diagnoses. The

> furthest I got was having a developmental pediatrician say he

> suspected autism in my daughter and administering an Asperger's

> questionnaire regarding my son. So there may be some disadvantages

> there. The same dev. ped said that my daughter had anxiety and sensory

> integration disorder, and my son had the same two symptom-pictures,

> though he didn't give firm diagnoses on that, to my knowledge.

>

> Well, so, that's the scoop. I sure hope ya'll have some ideas!!

>

> So good to have somewhere to seek help in this matter.

> Sheila

>

February 24, 2006

Hi Andy, and anyone else who is interested;

Andy, thanks for your reply.

I have been trying to figure out how to succinctly respond (I think I

failed the succinct part!) and ask some additional questions regarding

your response about my seeking medical decisionmaking for my kids. Due

to my toxicity (dealing with it, but having some good days, some bad)

it is hard.

First; how do I deal with Ex's assertion (tacit) that I want kids to

be sick, that I focus on health problems, and that they are only sick

with me--oh, and that I am brainwashing my kids. This is definitely

the impression the authorities who are working with us now are getting

or are at least subject to, given what they know (despite my

presenting excellent evidence directly to both of them to show that EX

is in denial). This is partly due to kids' being so close to normal on

the diet that these folks just see kids who look fine, and a dad who

says they are fine and this diet is unnecessary. It is complicated by

the fact that the kids have anxiety and a tendency to hide their

symptoms when they can, especially from " outsiders. " So they have to

be really bad-off for the school to see anything. There is some

recent, documented stuff the school has seen with my son, but these

authorities can't seem to accept that as proof of what I say, so how

can I expect them to ever accept anything?

Second; related to the above is key problem, I think. That is the fact

that we are dealing with the inability of these professionals to

acknowledge that I COULD be right about the diet affecting their

health and especially mental health. Since what I say seems so

patently false, they give much credence to what dad says. Any

" authority " including court authorities will have this problem. Why

would a family court advisor be different from these folks?

Third; I am supposed to be going through this " diagnostic process "

designed to help EX and I come to agreements about the kids needing

the diet, etc, of which the MD/Psych, Dr. C, is the " lead

investigator. " During this process I am supposed to only take the kids

to agreed upon docs. Dr. C chose Dr. N to be the pediatrician in

charge. Dr. N won't allow the blood testing that confirms one kid's

allergies to be considered adequate evidence, citing the poor

reliability of food allergy testing as his reason. Really, I think it

is because he cannot wrap his mind around the idea that food allergies

can do what I say they can and that the kids are as sensitive as I say

they are, so he sides with dad because of this bias. (Complicated by

ego issues related to me coming in and acting like I know stuff, for

example that my kids have a mild form of autism that can be totally

corrected by diet--he flat out can't and won't believe this.)

This right to take the kids to a doctor seems like the first issue to

take care of. I guess I need to opt out of this agreement, but then I

am not sure how to proceed. I will ask my attorney. I need to get the

right, and be clear that I have it, to take them to physicians, but it

sort of seems like I signed that away, at least temporarily.

Fourth; just a clarification. The EX never gives the kids whole foods

to which they are allergic. Not pizza or bread or anything. Not even

soy or chicken or pork. He just gives them stuff with traces of

allergens, like dried fruit with fructose and canned beans with

contamination--things he knows the kids will be unaware of the

allergens in.

The kids wouldn't eat anything they know is not on their diet. That is

because they trust me implicitly and they believe that their

unpleasant mental states are allergy induced. They both express that

they think their mom knows more than their dad about all things health

and medical-related. They acknowledge that they don't tell their dad

about the symptoms that he cannot see, like headaches. They wonder why

noone asks their opinion in all this controversy.

This feels like a witch-hunt. Everything I say and do is questioned

and questionable. It is absurd. There is plenty of evidence but these

three men, the EX, Dr. C, and Dr. N refuse to acknowledge my expertise

regarding my children, my four years of hard work figuring out their

food allergies and how to deal with their health issues, along with my

being more or less solely responsible for handling the health and

medical issues affecting my kids their whole lives long.

I have become quite knowledgable about allergies, autism,

autoimmunity, celiac disease, and a host of other health related

topics through my ceaseless research. But I just don't quite get how

if these guys can be blind to all of this that I can somehow magically

convince someone the courts appoint. Will they at least look at my

documentation?

I don't actually think Dr. C and Dr. N are looking at what I give them

and applying their BRAINS! They just get a general impression and go

with it. No sleuthing, no gathering of evidence, no willingness to

look at research, just " let's give the kids these substances you say

are like poisons and see if anyone EXCEPT you, the mom, sees any

change, because if you're the only one who sees it, then its not

valid. " They couldn't propose that if they didn't already believe that

I must be wrong.

If we went through with the testing where they get what they are

allergic to, the truth would out eventually, but at what cost? Why

should they have to be put through that, especially when a blood test

corroborates what I say, already?

I am incensed, I just don't quite know what to do exactly. I assure

you I am slowly coming to figure it out but it is tough, especially

when communication and dealing with figures of authority are not your

strong suit. Did I mention I used to be a very Asperger-like

individual? Still am in some ways though I'm 90% recovered.

Any suggestions you have are appreciated.

Sheila

Message: 11

Date: Fri, 24 Feb 2006 06:52:04 -0000

From: " andrewhallcutler " <AndyCutler@...>

Subject: Re: Getting Legal Right to make Medical Decisions for My Kids