Re: DAN advice

December 9, 2010

If you are doing phone consults, why limit yourself to " close? " I was just mentioning Dr. Woeller on another list. I use him and I also use a local DAN. I know what you mean and I feel similarly. It seems like in general there are two types of DAN, one is going to take charge and one is going to go slow. I guess there are a few in between LOL and the hard part is finding one who moves at the right speed.

I wasn't even sure what the right speed for me is/was. We have been on an HMO this year and going back to the PPO in Jan. So now I will have out of network coverage and be able to do more. So I will be ready to move faster. I also wanted to do more natural stuff... now I am more willing to do RX type stuff.

I went to NIDS.net and got a list of their recommended lab tests and asked my DAN to draw those. From this and other lists I learned about LDN and asked my DAN about it... he says he loves it and sure my kids can go on it... but he didn't offer that up himself. So... I guess it paid for me to do some research.

I don't think it's a racket or anything, but since they are not working thru insurance companies, they probably have to be high priced to cover the overhead. I dunno... but it's not uncommon for people to switch DANs.

My little boy is five, has asd, and has a history of gut issues, high metals,

etc. He's currently on a prescription strength probiotic, in addition to several

other supps.

We've been seeing a DAN for the last three years, with some

improvements. It's been very slow going, and has therefore been very difficult

to justify with our pedi who tells us constantly that it's just snake oil and a

waste of money. I also have a sister in law who is an immunologist who also has

a lot of negative impressions to give about it all. As a result of this my

husband has also been very skeptical this whole time, but has gone along with my

wishes to continue on with Dr. H. I have to admit I've let my mind play tricks

with me too, mostly because test results (lead levels, etc.) have come back

really high or abnormal on urine and stool testing with Dr. H, but then come

back normal when the pedi double checks. Dr. H diagnosed him as intolerant to

gluten via stool test, which has been highly criticized as unreliable and never

used. We've been told that the labs and test types being used by Dr. H are less

reliable, or are never used by " typical doctors " . The first year that we say

her, we waited in an empty waiting room for more than an hour each time because

she was babysitting her grandbaby. The skepticism has only gotten worse in

recent months when she closed her office and started working from her

home. (My husband really wanted to leave after waiting in her driveway for a

half-hour before she came to the door last time, and that was after driving four

hours to get there.)

I've tried to be open minded about it all, being that I don't know of any other

options and I know that DAN doctors aren't " typical, professional type

doctors " , but I have to admit it's a bit strange. I've researched until I'm blue

in the face and know that the supps and testing she uses are fairly standard in

the DAN protocol, just apparently slower, more spaced out, and she tests for

more things than what seems most DAN doctors do. I've been told many times by

other " expert biomed moms " that we're simply not doing enough. You can't just

treat one thing at time and expect it to work. But, I'm not a doctor, and I want

to trust her. I actually appreciate her using less invasive testing to figure

things out. (such as the stool test for gluten intolerance, as apposed to a

stomach biopsy). When my ds had diahrea for two months that no one could stop,

which our pedi told us was normal, it was Dr. H who finally cured it simply by

giving him liquid aloe. Not traditional, not something out pedi would have ever

thought of, but it worked.

Anyway, it's taken all of the three years we've been doing this to finally get

his gut levels (bacteria, yeast, etc) under control. Forget about chelation or

anthything else, we've solely been working on his gut this entire time. Dr. H

finally agreed to start him on an antiviral protocol using valtrex and diflucan.

(Something I bugged and begged Dr. H for the whole time, but she understandably

wouldn't start until his gut issues were controlled.) We are two months into the

antiviral protocol, and are due to have a follow up telephone appt to

go over labs we had done a few months back and to review his progress on the new

meds. We have seen some improvements as far as focus and understanding, but

somewhat of a regression in speech and definitely more hyperactivity. (I guess

that can be expected in the first few months though?) When I called today to

schedule an appointment though, I was told it would be $350.00 instead of the

usual $150 we've paid all along for a telephone appt and I have to pay up front.

We are just about out of ds's scripts and she won't refill them until we talk.

(I guess understandable again, but I kind of feel like their being held

hostage:) I know I can get his pedi to refill his scripts and do a liver check

to make sure he's handling the diflucan ok, but he won't know anything about the

behaviors he's experiencing. I almost think Dr. H has raised the rates on us because she's mad at my dh for not trusting her.

I guess the moral of this book is, am I letting outside influences make me paranoid, or does this

sound as strange as I'm starting to think it is?

Insurance doesn't cover her services, and I just don't know if I feel

comfortable anymore in light of the new $200 increase in cost. Everyone I know

thinks I'm just choosing to believe her because I want what she tells me to be

true. Am I really that blinded by my hopes to help my child?

I live in Arkansas and don't know of another DAN in this state. There is one other on the DAN lists but she's stopped taking asd patients. We're close to OK, but don't know of who to go to. Anyone have any suggestions?

-- Toni------Mind like a steel trap...Rusty and illegal in 37 states.

December 9, 2010

Well, I'd say she's right in the fact that some things just take time. And while it would be great to see miracles over night, it's rarely the case. She's absolutely right for patiently waiting for your son's gut to heal. Yes, for sure there are people out there "selling snake oil" to us desperate parents and we do need to excercise healthy scrutiny, but I wouldn't be swayed by the opinion of your regular pedi who's medical school more than likely enjoyed ample funding by big pharma - who, as we all know, has absolutely no interested in curing anything - rather their research is geared towards life-long medication management-(which is indeed snake oil) and this is what your pedi was taught - so more often than not you

will conflicting opinions as to what is considered "healthy" or "acceptable" levels. With that said, I would be concerned about your dan's price increase and wonder if its her way of discouraging you from coming back. I would not give up on biomedical treatment - but it may be time to find another alternative. Check out Dr. Kurt Woeller's web site - atleast that gives you another option. I would have absolutely no problem seeing a doctor who chose to work out of their home but I would have a big problem with them not coming to the door for a half hour. It's probably time to move on....it just sucks how we sometimes get stuck in a crappy situation because we need the damn prescritpions. ughhhhhhhhh. Sometimes when I find myself second-guessing this approach, I remind myself that it beats the alternative which would mean going by my son's pedi's advice which was "Look at

his IQ. Certainly you don't expect miracles. Here's a script for adderall...I'll look into 'that diet' if you'd like" No thank you! I'll take my chances with the "snake oil" that has brought about HUGE improvements....so much more than anything he would have ever thought to try. We may be very far from having it exactly right but it's so much more than anything western medicine has to offer. If I were you, I'd get everything I could out of my pedi and look around for another dan - many will agree to see your child once then do follow-ups by phone if your finances allow for it! Good luck and don't you ever give up!

Take good care,

Tammy

To: mb12 valtrex Sent: Thu, December 9, 2010 9:20:35 PMSubject: DAN advice

My little boy is five, has asd, and has a history of gut issues, high metals,etc. He's currently on a prescription strength probiotic, in addition to severalother supps.We've been seeing a DAN for the last three years, with someimprovements. It's been very slow going, and has therefore been very difficultto justify with our pedi who tells us constantly that it's just snake oil and awaste of money. I also have a sister in law who is an immunologist who also hasa lot of negative impressions to give about it all. As a result of this myhusband has also been very skeptical this whole time, but has gone along with mywishes to continue on with Dr. H. I have to admit I've let my mind play trickswith me too, mostly because test results (lead levels, etc.) have come backreally high or abnormal on urine and stool testing with Dr. H, but then comeback normal when the pedi double checks. Dr. H diagnosed him as

intolerant togluten via stool test, which has been highly criticized as unreliable and neverused. We've been told that the labs and test types being used by Dr. H are lessreliable, or are never used by "typical doctors". The first year that we sayher, we waited in an empty waiting room for more than an hour each time becauseshe was babysitting her grandbaby. The skepticism has only gotten worse inrecent months when she closed her office and started working from herhome. (My husband really wanted to leave after waiting in her driveway for ahalf-hour before she came to the door last time, and that was after driving fourhours to get there.)I've tried to be open minded about it all, being that I don't know of any otheroptions and I know that DAN doctors aren't "typical, professional typedoctors", but I have to admit it's a bit strange. I've researched until I'm bluein the face and know that the supps

and testing she uses are fairly standard inthe DAN protocol, just apparently slower, more spaced out, and she tests formore things than what seems most DAN doctors do. I've been told many times byother "expert biomed moms" that we're simply not doing enough. You can't justtreat one thing at time and expect it to work. But, I'm not a doctor, and I wantto trust her. I actually appreciate her using less invasive testing to figurethings out. (such as the stool test for gluten intolerance, as apposed to astomach biopsy). When my ds had diahrea for two months that no one could stop,which our pedi told us was normal, it was Dr. H who finally cured it simply bygiving him liquid aloe. Not traditional, not something out pedi would have everthought of, but it worked.Anyway, it's taken all of the three years we've been doing this to finally gethis gut levels (bacteria, yeast, etc) under control. Forget about

chelation oranthything else, we've solely been working on his gut this entire time. Dr. Hfinally agreed to start him on an antiviral protocol using valtrex and diflucan.(Something I bugged and begged Dr. H for the whole time, but she understandablywouldn't start until his gut issues were controlled.) We are two months into theantiviral protocol, and are due to have a follow up telephone appt togo over labs we had done a few months back and to review his progress on the newmeds. We have seen some improvements as far as focus and understanding, butsomewhat of a regression in speech and definitely more hyperactivity. (I guessthat can be expected in the first few months though?) When I called today toschedule an appointment though, I was told it would be $350.00 instead of theusual $150 we've paid all along for a telephone appt and I have to pay up front.We are just about out of ds's scripts and she won't

refill them until we talk.(I guess understandable again, but I kind of feel like their being heldhostage:) I know I can get his pedi to refill his scripts and do a liver checkto make sure he's handling the diflucan ok, but he won't know anything about thebehaviors he's experiencing. I almost think Dr. H has raised the rates on us because she's mad at my dh for not trusting her.I guess the moral of this book is, am I letting outside influences make me paranoid, or does thissound as strange as I'm starting to think it is?Insurance doesn't cover her services, and I just don't know if I feelcomfortable anymore in light of the new $200 increase in cost. Everyone I knowthinks I'm just choosing to believe her because I want what she tells me to betrue. Am I really that blinded by my hopes to help my child?I live in Arkansas and don't know of another DAN in this state. There is one other on the DAN lists

but she's stopped taking asd patients. We're close to OK, but don't know of who to go to. Anyone have any suggestions?

December 9, 2010

Well, I'd say she's right in the fact that some things just take time. And while it would be great to see miracles over night, it's rarely the case. She's absolutely right for patiently waiting for your son's gut to heal. Yes, for sure there are people out there "selling snake oil" to us desperate parents and we do need to excercise healthy scrutiny, but I wouldn't be swayed by the opinion of your regular pedi who's medical school more than likely enjoyed ample funding by big pharma - who, as we all know, has absolutely no interested in curing anything - rather their research is geared towards life-long medication management-(which is indeed snake oil) and this is what your pedi was taught - so more often than not you

will conflicting opinions as to what is considered "healthy" or "acceptable" levels. With that said, I would be concerned about your dan's price increase and wonder if its her way of discouraging you from coming back. I would not give up on biomedical treatment - but it may be time to find another alternative. Check out Dr. Kurt Woeller's web site - atleast that gives you another option. I would have absolutely no problem seeing a doctor who chose to work out of their home but I would have a big problem with them not coming to the door for a half hour. It's probably time to move on....it just sucks how we sometimes get stuck in a crappy situation because we need the damn prescritpions. ughhhhhhhhh. Sometimes when I find myself second-guessing this approach, I remind myself that it beats the alternative which would mean going by my son's pedi's advice which was "Look at

his IQ. Certainly you don't expect miracles. Here's a script for adderall...I'll look into 'that diet' if you'd like" No thank you! I'll take my chances with the "snake oil" that has brought about HUGE improvements....so much more than anything he would have ever thought to try. We may be very far from having it exactly right but it's so much more than anything western medicine has to offer. If I were you, I'd get everything I could out of my pedi and look around for another dan - many will agree to see your child once then do follow-ups by phone if your finances allow for it! Good luck and don't you ever give up!

Take good care,

Tammy

To: mb12 valtrex Sent: Thu, December 9, 2010 9:20:35 PMSubject: DAN advice

My little boy is five, has asd, and has a history of gut issues, high metals,etc. He's currently on a prescription strength probiotic, in addition to severalother supps.We've been seeing a DAN for the last three years, with someimprovements. It's been very slow going, and has therefore been very difficultto justify with our pedi who tells us constantly that it's just snake oil and awaste of money. I also have a sister in law who is an immunologist who also hasa lot of negative impressions to give about it all. As a result of this myhusband has also been very skeptical this whole time, but has gone along with mywishes to continue on with Dr. H. I have to admit I've let my mind play trickswith me too, mostly because test results (lead levels, etc.) have come backreally high or abnormal on urine and stool testing with Dr. H, but then comeback normal when the pedi double checks. Dr. H diagnosed him as

intolerant togluten via stool test, which has been highly criticized as unreliable and neverused. We've been told that the labs and test types being used by Dr. H are lessreliable, or are never used by "typical doctors". The first year that we sayher, we waited in an empty waiting room for more than an hour each time becauseshe was babysitting her grandbaby. The skepticism has only gotten worse inrecent months when she closed her office and started working from herhome. (My husband really wanted to leave after waiting in her driveway for ahalf-hour before she came to the door last time, and that was after driving fourhours to get there.)I've tried to be open minded about it all, being that I don't know of any otheroptions and I know that DAN doctors aren't "typical, professional typedoctors", but I have to admit it's a bit strange. I've researched until I'm bluein the face and know that the supps

and testing she uses are fairly standard inthe DAN protocol, just apparently slower, more spaced out, and she tests formore things than what seems most DAN doctors do. I've been told many times byother "expert biomed moms" that we're simply not doing enough. You can't justtreat one thing at time and expect it to work. But, I'm not a doctor, and I wantto trust her. I actually appreciate her using less invasive testing to figurethings out. (such as the stool test for gluten intolerance, as apposed to astomach biopsy). When my ds had diahrea for two months that no one could stop,which our pedi told us was normal, it was Dr. H who finally cured it simply bygiving him liquid aloe. Not traditional, not something out pedi would have everthought of, but it worked.Anyway, it's taken all of the three years we've been doing this to finally gethis gut levels (bacteria, yeast, etc) under control. Forget about

chelation oranthything else, we've solely been working on his gut this entire time. Dr. Hfinally agreed to start him on an antiviral protocol using valtrex and diflucan.(Something I bugged and begged Dr. H for the whole time, but she understandablywouldn't start until his gut issues were controlled.) We are two months into theantiviral protocol, and are due to have a follow up telephone appt togo over labs we had done a few months back and to review his progress on the newmeds. We have seen some improvements as far as focus and understanding, butsomewhat of a regression in speech and definitely more hyperactivity. (I guessthat can be expected in the first few months though?) When I called today toschedule an appointment though, I was told it would be $350.00 instead of theusual $150 we've paid all along for a telephone appt and I have to pay up front.We are just about out of ds's scripts and she won't

refill them until we talk.(I guess understandable again, but I kind of feel like their being heldhostage:) I know I can get his pedi to refill his scripts and do a liver checkto make sure he's handling the diflucan ok, but he won't know anything about thebehaviors he's experiencing. I almost think Dr. H has raised the rates on us because she's mad at my dh for not trusting her.I guess the moral of this book is, am I letting outside influences make me paranoid, or does thissound as strange as I'm starting to think it is?Insurance doesn't cover her services, and I just don't know if I feelcomfortable anymore in light of the new $200 increase in cost. Everyone I knowthinks I'm just choosing to believe her because I want what she tells me to betrue. Am I really that blinded by my hopes to help my child?I live in Arkansas and don't know of another DAN in this state. There is one other on the DAN lists

but she's stopped taking asd patients. We're close to OK, but don't know of who to go to. Anyone have any suggestions?

December 9, 2010

, I'm fairly certain I know which DAN you are talking about and I have to say, I don't think she's the best choice. I've had many families see her and not gotten anything from seeing her. I have yet to meet one person that has stayed with her as long as you have. 3 years is a long time to get so little results and do so few things. Yes, things take time but many things don't and many things get better when you do them together instead of one at a time. You don't need to wait for the gut to heal to start antifungals and antivirals. Typically, these things *help* the gut. So *my personal opinion* is to find another DAN.Testing for intolerance through a stomach biopsy is unreasonable. Testing for celiac through a stomach biopsy makes sense but there are other tests you can do for that first. I don't know of any doctor that would consider testing for intolerance through a biopsy. Allergy maybe (but not likely as allergies are pretty clear). Celiac, definitely but never an intolerance.The unfortunate truth is that not all DANs are created equal. You're not blinded by your hopes for your child, just an ineffectual DAN. We all want to believe that our DANs know what they are doing. Just like we wanted to believe that vaccines are safe or that mainstream medicine knew what they were saying when they said biomed doesn't work. But that's simply is not always the case. There are probably more ineffective DANs than there are effective ones. There are more DANs out for your money than for your child. And of course, there's the ones that are simply both ineffective and out for your money. Ask for recommendations for a new DAN.My DAN takes insurance (but not all insurance). If you want her name, let me know. I generally don't recommend her to newbies as she can move too fast. You really have to understand DAN and no when to say "not right now" but if you would still like her info, e-mail me. And I would never see a doctor that made me wait in her driveway. If you're going to have a home practice, be prepared for a home practice. Provide a place to wait, dammit. Babysitting is not a good reason.DAN doesn't work for everyone. There isn't a one size fits all protocol. You might do better with Yasko, homeopathy, NIDS or even combinations. But in my opinion, you won't know if DAN will work for your child until you have an effective Dr.What *have* you done and what tests have been run?

Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~