| M |
| | July 03, 2007 at 02:07 PM | Reply with quote | #1 |
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Hello everyone--
I've been wanting to write for some time about an extra layer of treatment we added here to enhance our daughter's recovery. I waited to report on this until I was sure it was really working for us and not just a fluke. My daughter had her quarterly check with the psychiatrist yesterday. He is quite impressed, and plans to do a final check on her next time and then release her.
Many of you know how rough a time we had with our 16-year-old daughter, whom we refed at home. Even a couple of months after weight restoration, her mindset was still quite severe, and at about the three month point began to deteriorate somewhat. As you can imagine, after a year of refeeding, with near-constant AN talk with fits and rages still occurring, plus all that goes along with that, we were in no shape to have things go downhill. Physically, she was the healthiest person in the house. I thought I would do absolutely anything to get her brain chemistry normalized.
Somewhere in my overtired brain I decided what we really needed was a biochemist with an open-minded doctor friend who could prescribe whatever she needed. Mainly to keep myself busy, I hit the Internet looking for such an animal. Believe it or not, I actually found a research organization with a clinical arm that does exactly that. They are the Health Research Institute and they operate The Pfeiffer Clinic and are located in a suburb of Chicago. The website is hritpc.org.
They treat behavior issues via biochemistry. They are legit. They are actual doctors (as opposed to alternative practioners) who look closely at symptoms, test to determine the individual's biochemical situation, and then address it directly. They also conduct research and publish in peer-reviewed journals.
I called, and was told that they do not "treat anorexia, per se." I gathered what they meant was that they do not do any refeeding/weight restoration. I told them my daughter was weight-restored, but that her behavioral and psychological symptoms were not abating quickly and that we were looking for help to enhance recovery and prevent relapse. They said they absolutely could help that, and had seen a great many eating disordered patients. And we had a appointment within two weeks.
We went. It took several weeks to get the answers. They typically send samples to multiple labs to get the most accurate results. They also took the most complete health history I have ever seen or even heard of. After all the results are in, they sit down, review the case, and come up with a biochemical treatment totally specific to the individual.
Our child ended up having a couple of metabolic disturbances, one of which is genetic (her genetic problem was causing a severe imbalance at the time of testing), and they tell me they see this particular imbalance in most of the anorexics they treat. To my mind, their results were consistent with much of what we see the current or recent research suggesting: Zinc problems, etc. . . I have suggested this clinic to another parent here on the board, and their daughter ended up having some of the same results. They have just started on the supplementation program.
The staff at Pfeiffer tells you to keep whatever local medical attention you are currently getting in place. They encourage therapy for sufferers as needed. Our child was on an atypical antipsychotic medication when they saw her, and they took that into account. They told us not to stop medication, but explained how to watch for signs of over-medication as her brain chemistry resolved. We had to step it down, and now she's nearly off of it. They are happy to provide information to your local practitioners.
Their prescription (you can have it formulated by a local compounding pharmacy if you wish, or they can make it and ship it--costs come out about the same here) is an individual formula of certain vitamins, minerals, enzymes, proteins, etc. . . all tailored to the particular patient's biochemical needs.
Our results have been nothing short of dramatic. Our child is better now than she was even a year before we knew she was sick. It's actually difficult to describe how thoroughly better she is.
I am not connected to the Pfeiffer Clinic at all, except as a consumer. I suspect this is not useful (or as dramatic) if a patient is terribly underweight and is still in the throes of starvation syndrome which causes its own problems.
I cannot recommend this group highly enough.
If anyone is interested, I'll be happy to answer whatever I can either on the board or in email.
M.
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| Laura |
| | July 03, 2007 at 05:11 PM | Reply with quote | #2 |
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I, too, have followed the Pfeiffer story with interest since reading it recommended in a column in the Washington Post over a year ago. I believe this type of examination of very individual nutritional profile will be part of medical practice in the future, and may have special significance in mental illness.
I find the fact that Pfeiffer works with existing treatment teams very encouraging. That sort of interdisciplinary approach makes sense in a world where no specialist can be expected to know other specialties.
We know that nutrition and eating disorders are closely linked. There is plenty of evidence that individuals metabolize micronutrients in unique ways. And we know that malnutrition affects each person in different ways.
The zinc connection, for example, is one that doesn't get enough press (it can't be patented, so who is going to pay for the research? Ditto omega fatty acids, and inositol and a number of other things.).
I'm intrigued and encouraged by M's family's experience - and would love to hear more from others who may have explored this option or similar ones.
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| tryingmom |
| | July 03, 2007 at 06:41 PM | Reply with quote | #3 |
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Is it possible to work with them long distance?
Tryingmom |
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| M |
| | July 03, 2007 at 07:58 PM | Reply with quote | #4 |
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It is absolutely possible to work with them mostly long distance. We are, and the patient right behind us the day we were there had come from Sweden.
We did have to go to the clinic for our initial visit. They also want to see you in person for follow-up about eighteen months later. You can arrange to have your interim testing done by a local lab and the results sent to them. We are doing this. We also have a nurse assigned to us that we can call whenever we have a question. I have found the nursing staff at the clinic to be very knowledgeable and extremely helpful.
They do outreach clinics in other areas. I know they go periodically to Maryland, someplace out West, and a couple of others. This information is on the website. We are in the Southeast, and Chicago was actually the closest to us.
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| sue |
| | July 03, 2007 at 08:11 PM | Reply with quote | #5 |
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M, this is indeed amazing stuff. I have long suspected d's metabolism has had a very significant impact on her recovery. Since long before the AN was diagnosed we were told over and over that she had a metabolic disorder which was contributing to the weight loss, but no one seemed to know what to do for it. In recovery we have seen signs that again indicate metabolic problems and have been referred here there and everywhere in search of answers, again with no resolution. Each time there is no successful resolution of what looks like unusual symptoms for ED/AN we are simply told that the illness changes (not really helpful as we already know that, we live with it). I have also searched for a biochemist/doctor here in Australia who would look with genuine interest at our daughter's peculiar problems and their presentation, with no luck. We are in a reasonable position at the moment, she has been eating well and not displaying any behaviours, but I can't shake the feeling that something internal needs 'tweeking' as it were.
I have replied here before checking their website address which you provided, something I will do right now. But I am also interested to know if these folks would work with people long distance (even internationally) - do you know anyone there you could ask?? Outside of that, roughly how long does the process take before you have some answers and a prescription/program to take home? I would very seriously contemplate this as a legitimate reason for a trip over if it meant getting her finally well.
Any info you could provide would be great.
Sue.
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| M |
| | July 03, 2007 at 08:15 PM | Reply with quote | #6 |
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I forgot to add:
Our insurance (Blue Cross Blue Shield) helped cover the cost, although we had to file it ourselves.
Compared to what we were spending otherwise, I found them to be quite inexpensive. I think the initial stuff, including all the testing, the analysis plus the consultation ran about $1300. (At one point we were paying that in about six weeks for therapy we weren't even sure was helping.) Her prescription nutrient program is running a little less than $50/monthly.
They do have a fund you can apply to if you need financial assistance.
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| M |
| | July 03, 2007 at 08:56 PM | Reply with quote | #7 |
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Sue--
As it happens, I know the Director and some of the other staff were in Australia not too long ago. I do not know if this was for an outreach clinic-type thing, or to train doctors there, or what. I think if you use the site map you can get to an email address and ask someone at the Institute.
It only took us two weeks to get an appointment, we could have gone sooner, but we had to make flight arrangements. From there it took maybe six weeks for all the results and the analysis and explanatory consultation, and then we started the program. We were seeing dramatic changes in our child within about three weeks of starting. Different imbalances take different amounts of time to correct, and this may have been a little on the quick side. (Our daughter's principle problem--not her only one--is a known genetic malfunction that causes her to shed zinc and B6. After reading the AN research, etc. . . we had been giving her zinc already, although not as much as she needed. On the other hand, we had also been supplementing the full spectrum of B vitamins, and folate is one thing she cannot tolerate. So it's hard to know.)
Hmmmm . . . did I answer everything?
I understand your frustrations! The tests Pfeiffer runs are available to any doctor. They provided us with the actual lab results among other things, but warned us that they did not necessarily agree with some of the "norms" in the face of certain symptoms. They weigh the health history very heavily.
One thing that will interest you, Sue, is this: I had been in "fight for you child's health without making her worse" mode for sooo long. You know, trying to manage doctors, without looking too much like a controlling or whacko mom. I knew a big health history was coming and I was formulating WHAT I would say to them to get some of the health history from ME rather than her. Guess what? After vitals, etc. . . they told us that they needed me for the health history and made my daughter fairly comfortable elsewhere. When I got in the conference room, the nurse says, "We find that with AN patients it is often upsetting and inaccurate to take histories with them present. We need to talk to YOU to get a clear picture. If there is anything you can't answer, we'll ask her later."
Pretty cool, I thought.
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| sue |
| | July 03, 2007 at 09:19 PM | Reply with quote | #8 |
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M, thanks. I'll look into it further, have already printed off all the info and waiting for 5 quiet minutes to sit and read it all and take it all in. I will definitely email the clinic and ask some questions re treatment in Aus land, otherwise I would be happy to send them the Health History Form and wait for their advice. Would be very interested to hear more about this. And .... what a breath of fresh air to see that they welcome history from the parents. I have also been in 'lioness' mode for years now, feeling I need to protect my daughter, and myself, from doctors and that 'overinvolved' mother look. I know that look so well now I can sense it coming. It is exasperating enough to have to repeat a long and complex medical history over and over and over, without the added pressure of the 'so you think you know more than us' look. I just want them to acknowledge that I know my d better than they do. These people sound wonderful, let's hope they get to share their wisdom with other professionals. Thanks again M.
Sue.
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| Debra |
| | July 03, 2007 at 09:46 PM | Reply with quote | #9 |
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I wanted to chime in here.
M told me about this program back in March and we took or d in April. It took 8 weeks to get results and another week to get the supplements. My d started on the treatment program 2 weeks ago tomorrow (Wednesday) and we are seeing improvement in her already. There is still a ways to go, but she seems to be following a similar path that M's daughter took (we have been talking and exchanging updates).
I can only report what we are seeing so far, and I am hopeful.....hopeful for the first time in months. We are seeing so much promise in our d's recovery now, when before we thought it might be hopeless.
My d still have a VERY long way to go, but there is a calm in our house now, and we are all hopeful again (thank you SO much M -- we are so grateful to you for this information and for all of your support and encouragement).
I wish I could give you more information, but as we progress I would be happy to report on my d's recovery. Everyone (her doctor, therapist, my husband, her sister, and even my d) can tell there is a change in her....she is finally starting to get better!
Debra
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| Debra |
| | July 03, 2007 at 09:52 PM | Reply with quote | #10 |
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Quote: Originally Posted by M
elsewhere. When I got in the conference room, the nurse says, "We find that with AN patients it is often upsetting and inaccurate to take histories with them present. We need to talk to YOU to get a clear picture. If there is anything you can't answer, we'll ask her later."
I don't remember the exact words, but it was something like that. After she said that, I started babbling on and on and on, almost in tears at time, but I held it together. She didn't rush me, and listened so well. Was very understanding and very caring. The doctor (who was the same that M's daughter saw) was also wonderful, not rushing us, talking to us in a caring and understanding manor. We are SO please, and again, so thankful we are doing this.
I just hope in a few months I can also report that my daughter is recovered, just as M's daughter is now.
Debra
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| Debra |
| | July 04, 2007 at 07:06 AM | Reply with quote | #11 |
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In Austrailia, you may want to look at this website:
http://www.biobalance.org.au/
You can see they worked with the Pfieffer doctors in April. This was the week before we went, so they had just returned to the US when were went up to Chicago.
Debra
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| Shawn |
| | July 04, 2007 at 02:55 PM | Reply with quote | #12 |
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This is awesomely exciting. It makes SUCH sense. I'm truly happy for you and your daughters, M and Debra, and hope progress continues.
I'm also really happy to know this organization exists, and fairly close to us, too. Do you think it would make sense to take my daughter there, even though I do believe we are well on the way to recovery? She has about ten pounds more to gain, but I'd say her behavior and thinking and emotions are pretty darn good these days. I guess maybe we should wait and get the weight gain necessary, and then try it if she is still having trouble stopping the calorie counting...
Anyways, what a joy to hear that finally research and treatment is taking this path.
Please keep us posted! And I am truly in awe of your determination to help your girls recover, no matter where it takes you. It seems just maybe you have found treatment that could offer many of us hope.
Shawn |
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| Tracey~ |
| | July 04, 2007 at 03:03 PM | Reply with quote | #13 |
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M-
This is really intriguing and encouraging information, thank you for sharing this! I'm very interested in following up on your d's progress, and checking further into having our d evalutated at the center as well- Illniois is a couple of hours away- what a great additional resource.
I'm in agreement with you Laura 100% re the lack of press studies and research like this gets as well. Great to see determined, intelligent, and compassionate individuals charging onward though, despite the capitalist-driven, single-minded healthcare "business" system we have serving/limiting us.
Thanks again for this, and please keep us posted.
Blessings to you and your family~
"All theory, dear friend is gray. But the precious Tree of Life is green."
~ Goethe
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| Debra |
| | July 04, 2007 at 04:32 PM | Reply with quote | #14 |
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Quote: Originally Posted by Shawn
I'm also really happy to know this organization exists, and fairly close to us, too. Do you think it would make sense to take my daughter there, even though I do believe we are well on the way to recovery? Shawn
Shawn,
Personally, I think it makes a lot of sense, in fact, I have thought about your d and this treatment as I have followed your story. My 'theory' on this whole thing is the reason Maudsley works is because the full nutrition the girls get puts them back in balance. BUT for some girls, they need more. Most doctors use SSRIs and other drugs to do this. The doctors at Pfeiffer explained that you can go about this two ways.
Treat the symptoms (which is what the SSRIs and anti-psychotic drugs do).
Or you can treat the problem (which is what the nutritional therapy does).
With the SSRIS and anit-psychotic drugs, you can have side effects, and reactions from missed doses--and basically the girls are still chemically out of balance. But with the nutritional therapy, you get their bodies working the way they should. Now you don't quit the other meds UNTIL things are back in balance (we had to take our d off of Zoloft due to bad reactions, but even had she done well, honestly, I would rather have her on natural things and treat the problem rather than those types of meds---but this is just me, I know many people who use those drugs for various reasons, and they are very happy with them).
To tell you how please we are, I am going to have my other d (who is doing well and is not AN) tested just to see if she has any biochemical imbalances too. She has a few issues (gets upset over changes in her life, isn't as focused in school as she was in elementary school, small things like that). The condition my AN d has is genetic, so we want to head off any problems that may come IF my other d has it (she has pyroluria along with various other imbalances).
I know you aren't far from Chicago, so you may want to go to one of their educational sessions that are free to ask questions and learn more:
http://www.hriptc.org/wednesday_seminars.html
There is one coming up July 18th.
For us, we just sent in the application for out d within a couple days after M told us about it. It is the FIRST thing in this whole crazy situation that has made ANY sense to us.
Again, we are only at 2 weeks with my d's treatment, but OH what a difference we see in her. Still a very LONG way to go, but finally I am seeing we are going to be able to make progress and our lives are SO much better at this very moment. (and many of you know just how discouraged I have been this past few months).
Debra
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| Shawn |
| | July 04, 2007 at 06:58 PM | Reply with quote | #15 |
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I'm so happy that you are finally finding something that seems to be helping!
I'd be very interested to hear what the testing finds on your other daughter. One thing I was wondering, as I read through this thread, is whether everyone who was examined wouldn't have some sort of chemical imbalance? In other words, how do we know the abnormalities or imbalances Pfeiifer found in your daughter are truly due to the anorexia, as opposed to being simply a sort of individual bio-chemical profile, as it were, with all the quirks that make each of us who we are? Is there a profile of a normal, healthy human? Are there norms for every category of minerals, chemicals, etc. they measure in blood, hair and urine? Would some folks come out completely normal and healthy? Of course there is no way to know this, but it would be fascinating to learn whether your daughter's profile/results would have been different BEFORE the anorexia...Or whether, one day, this kind of screening could actually find certain imbalances that could signal a propensity toward anorexia, as I guess maybe the zinc deficit might be?
Not sure I'm makign sense here...It's just that while I first reacted with excitement, it almost seems too easy and obvious---My second reaction, oddly enough, was almost anger---frustration that this sort of scrutiny has not been researched more carefully by the wider medical/psychological community. I mean, why is the knee-jerk reaction to blame, say, families rather than blame biology?
SHawn |
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| Debra |
| | July 04, 2007 at 07:45 PM | Reply with quote | #16 |
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From what I understand, everyone is going to have out of balances. It is only when they are extreme that they become problems.
For example, my d has High Histamine. This is very common and usually found in the anorexics they test (according to articles I have read). When the histamine level is some what high, you get high achievers, good in school, successful in their careers. Basically not a bad thing....BUT when the level gets too high, then you get obsessive thinking that, when attached to something bad, and cause problems (such as eating disorders, gambling, etc.)
I'm not sure what we will find with my other daughter. The main reason we are testing her is because the condition of pyroluria is genetic and they believe my d always had it to some degree (and I do too now that I understand it). When extremes happen in life, it can cause it to go to extremes. We believe puberty caused her condition to do this. They say that stressful situations, injuries, etc. can do this to a person with pyroluria.
With my other daughter, she has not gone through puberty to the same degree as my AN d. And before puberty, my AN was a regular girl with a few quirks (who doesn't have those). So our concern is when our healthy d hits puberty full force, will she have issues? We don't know, but if we can head them off and help puberty go more smoothly for her, it is worth it to us.
So in answer to your question, no there is no "perfect" biochemestry. But as long as things are within a certain level, that isn't a problem.
Debra
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| Debra |
| | July 04, 2007 at 07:56 PM | Reply with quote | #17 |
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Oh my! I didn't mean to post so much. M is really more of an expert on this than I am. Her d has had treatment for months, and my d has only had treatment for 2 weeks. We are just very excited because things have been very discouraging in our house for quite some time. It feels good to be optimistic again.
Debra
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| Shawn |
| | July 04, 2007 at 08:19 PM | Reply with quote | #18 |
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Debra,
This is fascinating. I did a search of "pyroluria", and found the Wikipedia entry below, which as you can see is somewhat skeptical. But I think it's worth looking into...Thanks to you and to M for sharing this info...
Shawn
"Pyroluria (or malvaria from the term mauve factor) is a controversial medical condition alleged to be caused by the presence of excess pyrroles (a group of chemical compounds) in human urine.[1]
Pyroluria was initially described by Abram Hoffer, a pioneer in orthomolecular medicine as well as orthomolecular psychiatry.[2] Proponents claim that pyroluria is relatively common, but few, if any, mainstream medical experts regard the condition as genuine, with few or no articles on pyroluria found in medical literature.[3]
[edit] Description
According to proponents, one of the pyrroles (kryptopyrrole)[1] is a by-product of hemoglobin synthesis. Pyrroles bind to vitamin B6, then to zinc and is eliminated through urine, potentially causing deficiencies of these compounds. Pyrolurics may also become deficient in omega-6 fatty acids ( specifically arachidonic acid). Leukemia is a symptom of pyroluria, caused by zinc deficiency.[4][not in citation given] However, other studies have either failed to detect hemopyrrole and kryptopyrrole in the urine of either normal controls or schizophrenics,[5] or found no correlation between these chemicals and mental illness.[6]
The pyroluria hypothesis was promoted by Carl Pfeiffer of the Pfeiffer Treatment Center.[7] According to Pfeiffer, pyroluria is a form of schizophrenic porphyria, similar to acute intermittent porphyria where both pyrroles and porphyrins are excreted in the human urine to an excessive degree.[8] The Center claims an 85% success rate for treating ADHD, autism, and schizophrenia, but other scientists say their methods have not been rigorously tested and compare them to "snake oil".[9]
Pyroluria is sometimes claimed to affect people with ADHD, schizophrenia, autism, alcoholism, manic-depression and depression.[citation needed] However, pyroluria is not related to schizophrenia.[10][11]
Individuals who test strongly for pyroluria may be diagnosed with coeliac disease, epilepsy, or psychosis; proponents say these may be mis-diagnoses, actually representing symptoms of the underlying pyroluria.[12] Pyroluria is believed to have a high degree of genetic origin, with proponents saying the condition known to run in families.[citation needed] Severity usually waxes and wanes with the level of stress being experienced by the sufferer.[citation needed] Some individuals with pyroluric tendencies may test within the normal range when their pyrolurism has ebbed.[citation needed |
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| Debra |
| | July 04, 2007 at 09:54 PM | Reply with quote | #19 |
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Shawn,
I did a lot of searches on Pfeiffer and Pfeiffer, and found some very good comments on boards from parents. Now there were usually related to other disorders, but still they were happy with the results. Try doing many searches to see what comes up.
Pfeiffer seems to be very well respected and recieves a lot of good comments from the research I did online.
Debra
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| Debra |
| | July 04, 2007 at 10:17 PM | Reply with quote | #20 |
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Quote: Originally Posted by Debra
Shawn,
I did a lot of searches on Pfeiffer and Pfeiffer,
Debra
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| valerie |
| | July 05, 2007 at 12:12 AM | Reply with quote | #21 |
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Hmmm.... Do they have a website to look at, or better still, do you know of a similar treatment in Ontario , Canada?
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| Chocolate |
| | July 05, 2007 at 07:35 AM | Reply with quote | #22 |
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Valerie,
This is the site, I don't think they have a center in Canada. I don't know where in Ontario you are, but they have a center in Michigan, which probably would be the closer to you.
http://www.hriptc.org/
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| M |
| | July 05, 2007 at 02:01 PM | Reply with quote | #23 |
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Hi Shawn--
I, too, have seen the Wikipedia article on pyroluria. But since there are a couple of glaring errors that I recognized immediately, I went on to look elsewhere for information that I felt I could rely on. There's quite a bit of information out there from reputable, and not particularly controversial, sources.
As I understand it, pyroluria (sometimes automatically extrapolated as pyrrole disorder) is simply the name of a metabolic error that occurs in hemoglobin synthesis. Pyrroles are byproducts of hemoglobin synthesis and the body gets rid of them by excreting them in urine. Because of their molecular structure, pyrroles bind readily with both B6 and zinc. People with pyrrole disorder produce too many pyrroles and end up excreting more than the usual amount of B6 and zinc before it can be used by the body. If this situation is such that it leads to an out-and-out deficiency, you will begin to see symptoms related to not having enough B6 and zinc. I'd imagine this could cause all manner of systemic difficulties if the imbalance goes on long enough, depending on one's internal environment.
For what it's worth, no one at Pfeiffer presented polyuria as a catch-all diagnosis or even a smoking gun, but rather it was a piece of the biochemical puzzle. I don't even think they automatically test everyone for pyroluria, because they told us, based on our health history, that they wanted to test for it.
One of the things that interested me in a biochemical approach in the first place was researching the cascade of problems stemming from zinc deficiency. (I had never heard of pyroluria before going to Pfeiffer.) After reading some of the research that indicated low zinc was a common issue for anorexics, even many of those at a year or more in recovery, I started looking into that. It's fascinating, really. Zinc is a real workhorse among the micronutrients. Many sources report that zinc is a necessary factor in 300 known metabolic processes. Some nutritional sources credit zinc with even more than that. It is known to be crucial in reproductive functions, and the need for zinc goes up pretty sharply as kids approach puberty and their reproductive organs and functionality are maturing. Also, because of its importance to so many different brain functions, some scientists regard zinc as a neurotransmitter itself.
There's much, much more that could be said here, of course. One of the other things I found out about zinc is how, when zinc is too low, copper tends to get too high. I'm not an expert in anything, and certainly not biochemistry, so I will stop here. But if you have a minute, plug "copper overload psychological symptoms" into Google, and see if you don't recognize some of the psychological symptoms of AN.
I'll throw this out there too, since it's become a pet interest of mine. When you look at many of the foods that are decent sources of zinc, these are the very ones that so many anorexics start cutting out when they start eating "healthy" even before the onset of the "disease" itself. (Pesonally, I'd rather call it a "syndrome".) Meats, whole dairy products, eggs, cheeses--all animal proteins, really--and many nuts, etc. . . And other things that have been tarred by the high-fat brush. It's plausible that these kids are making themselves deficient by eating "healthy" in the face of increased requirements, and if they are already predisposed to shed zinc, you're looking at a real problem, fast. (There also exists the issue of many of us not getting enough of the useful and needed fats to metabollize effectively what's going in in the first place.)
Now dietary zinc deficiency in the US is controversial. Some sources says it's rare because of the wide variety in the typical American diet. Other sources say it's alarmingly common thanks to highly processed foods, current dietary recommendations, and a number of other reasons. Admittedly, I hold with the latter after all the reading I've done, all that I hear the media recommending, and what I see the people in my life trying to do to be "healthy". I'd love to discuss this further off-list with anyone who is interested.
I don't think zinc alone is the whole story by any means, it's more complicated than that. (See Debra's comments about high-histamine function which realtes to the inability to tolerate stress.) After all, if you don't eat enough, you are missing a lot of necessary nutrients all the time. But I DO think that low zinc--whether genetically-induced, environmentally created, or a combo of both--is heavily involved.
Let me also say this: I think that individuals who develop AN get there via any of a number of paths. I suspect that some have an inborn metabolic malfunction that can put them on the slippery slope quickly--especially, but not necessarily--in conjunction with stress, either physical or psychological. I think even regular adolescent stress (again, either physical or psychological or a combo) can be the trigger as the nutritional needs of puberty spike. I think someone can get there through simple, but accidental, malnourishment for their age, metabolic type, or a higher than average level of physical activity. I think that some get there as the result of an infection like strep that can have a metabolic impact. I certainly think you can starve yourself into it. Any combination of these might get you there, too. I also think the contributing metabolic problems--whether impetus or result--occur in degrees. Recovery also comes in degrees, but does not have to, I suspect. For some (many, apparently) refeeding the full range of foods over time is enough to get the patient back into a safe and viable nutritional status and effects the cure. For some, whether through genetics or environment, refeeding is not enough to render them "totally well" for the long term. If they are too imbalanced, extra nutritional intervention may well be needed. Further, if an imbalance is genetically supported, diligence will be required forever. BUT, if you know what the genetic tendancy IS, you know how to head it off at the pass.
Estrogen/progesterone balance plays a role here, too. I'm not sure how this works, yet, but I know it's there.
M
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| Susan S |
| | July 05, 2007 at 03:36 PM | Reply with quote | #24 |
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I must say I am very confused about how to react to all of this. I am very happy that people have had such positive results and much of what has been said makes sense. I am also aware that the medical establishment has a dismal record with eating disorders and can't always be trusted. What troubles me I guess is a lack of feedback on the nutritional supplement treatment from some of the more forward thinking and enlightened specialists in this area that are often mentioned on this site (Dr.s Lock, LeGrange, Walter Kay, etc.) Has anyone discussed any of this with any well regarded eating disorder specialists?
I send good wishes for the continued success of the people who have tried this and wish you all the best. |
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| Jane |
| | July 05, 2007 at 04:46 PM | Reply with quote | #25 |
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Interesting point Susan. Parents may want to look at the medical literature for research studies so they can discuss options with their treatment providers. There have been a few on zinc and AN. Some on omega-3s and B vitamins and mood too. Here's a link to pubmed
http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed |
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| Debra |
| | July 05, 2007 at 05:34 PM | Reply with quote | #26 |
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I just want to make sure that it is clear that my d is still a LONG way from recovery. She became weight restored in Janaury, but mentally did not get better. One reason is because she didn't tolerate the meds (and had terrible reactions to them--that is a whole other story).
I am just saying that after two weeks, I am finally seeing my daughter's mental state improve, and things are much calmer here.
M's d has been using the treatment plan for a much longer time, and we are hoping to see the same results that they have seen; but I can not say that my d is recovered yet. She still has many issues to deal with; but before the Pfeiffer treatment, there was no reasoning with her, "talk" therapy had no impact on her (and she has been in therapy for a year).
We have a long road ahead, but we are feeling much more optimistic.....and my d is making "progress" for the first time since we took her off of all the meds.
Debra
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| Shawn |
| | July 05, 2007 at 06:27 PM | Reply with quote | #27 |
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This is all fascinating stuff. Susan S., I too wonder what folks like Le Grange and Lock think of Pfeiffer. Since my daughter is currently under treatment at the U Chicago, I will ask.
I intend to look into this seriously.
Shawn |
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| Marie #2 |
| | July 05, 2007 at 10:56 PM | Reply with quote | #28 |
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M and Debra,
I'm so glad that you have found what seems to be the missing link for your d's. If you don't mind me asking, can you give some additional details on what improvements you have seen in your d's? I know from reading Debra's posts that her d seemed to suffer from rather extreme OCD. Does this seem to be abating?
I am very interested in this. Since so many teenagers fall victim to this, it has always seemed likely to me that chemical imbalances were at least a partial cause. With my d weight restored but still suffering from ED thoughts, I too would like to know if this is something that would help, or if my d just needs more time to recover.
Thanks for sharing your stories. Hopefully others will be able to get help with this method.
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| Susan S |
| | July 05, 2007 at 11:02 PM | Reply with quote | #29 |
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Shawn:
I am so glad you can ask Lock and Le Grange about this. Will you post something about their response?
Thanks,
Susan S |
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| M |
| | July 06, 2007 at 02:38 AM | Reply with quote | #30 |
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Hi Marie2--
I'm happy to answer your question, but let me qualify that I don't think everyone with anorexia is exactly the same, and I can only report what has happened with our daughter and the timeframe in which it occurred. Our story is pretty remarkable, I think, and our results may not be typical. I just don't know. (And as usual from me, this may be longer than anyone really wants to read.)
I'm giving a thumbnail for reference, skip if you want, but I think it's useful for perspective:
Our child was 15 at onset. A ballet dancer taking 4 or 5 2+-hour-classes per week, more during rehersal for twice yearly performances, but in a remarkably laid-back atmosphere. Onset of menses was normal at around 13.5 yrs, but when she began to put on hips and breasts, she also started trying to eat "more healthfully." We don't encourage this exactly, but we don't worry either, as it begins as a salad for a snack rather than, say, a quesadilla or a PB & J. Big deal. From the time we realized there was a problem, which, by the way, was before she had lost a clinically significant amount of weight, things went downhilll rapidly. Let me also say that by the time when we realized there was problem she was trying to live on about 300 calories per day, and had been doing so for about three weeks, and had begun purging that. Uggh.
From there two months go by while we wrangle through the treatment options. We manage to nix purging. We also nix ballet, but still have weightloss all the while. Vitals and other physical symptoms are getting worse. We get calories up to around 1500 or so, but decide this is nowhere near enough, and begin refeeding in earnest, by the hardest. Psychological symptoms are called "severe" by more than one therapist. We manage to do 3500+ of magic plate. Huge variety of mostly home-cooked foods. We see the AN demon in technicolor--rages, head-banging, hyper-verbalization, OCD stuff (new with the AN), the works.
With weight restoration, this becomes more manageable, but AN thoughts and outbursts are still present and wearing us all down. We never really give up the magic plate--our daughter's anxiety was still too high to make appropriate choices. She's still raging fairly regularly. She's covered all the mirrors upstairs with towels. She refuses to eat anywhere but the dining room table--with no one but family present, of course--we have this huge OCD routine I have to do anytime she's to eat anything. Another OCD routine whenever she gets dressed to leave the house. She is better enough to play a role in a school play and do some social things, but is unable to eat anywhere near enough without our insistance. She actually eats nothing away from home, as best we can tell. She freaks out if her little sister's friends are in the house at eating times, even if they are not anywhere nearby. Things at our house are often still really awful, and we are just hoping we can get her functional someday, but we literally are beginning to doubt even that.
At four months weight-restored we find Pfeiffer. We go, and after all the waiting for results, etc. . . we begin the prescription program. The week before we started I ask what we can reasonably expect in terms of improvement. They assure us they can help her and are confidant and fairly specific about the route the recovery will take. ("After a few weeks the anxiety will lessen. Once anxiety lessens, the obsessionality will stop, and then so will the AN episodes. Self confidence will likely return pretty quickly at this point, and most eveything ought to get a lot better from there. She still probably won't be able to handle much stress normally for a while, so if she has, say, finals, or something, give her this and that additionally, but for no more than two weeks at a time".)
At this point we are about six months weight-restored, and things are still mostly as described above. After about three weeks on Pfeiffer's medication things are much, much different--somewhat like flipping a switch--and continue to be so. For example:
She comes to me, a tad sheepishly, and tells me that she wants the whole shebang Easter basket this year and wants to make sure the "Easter Bunny" isn't holding last year against her. When Easter baskets arrive, she happily engages in trading for favorites with her little sister and eating the reconfigured contents. She thanks the "Easter Bunny" later that morning. The Easter Bunny's jaw drops.
We had had horrible clothing issues. Suddenly, she puts on absolutely anything without worrying and heads out of the house like a normal teenager. This is a kid who had not worn shorts in a year, and would not have donned a bathing suit at all for any reason. Bikini: "I didn't go to the pool at all, last summer, did I? Hmmm. Can I have your card so we can order lunch poolside? I think it's cool that they deliver it to you on a tray and all. Please? I'll pay for it when the bill comes in." Miniskirt: "My god, it's just too hot for jeans!" Shirts she insisted were too small (they weren't) even a few months ago: "I really like this shirt, I'd like to have a couple more like this." Both parents' jaws drop.
She comes in from a date and might eat a big bowl of ice cream without any prompting or counting. She might even put a handful of granola or something on top, or not, depending on hunger, I guess. Or leftovers if she was out for dinner: "It smells like fried chicken in here, is there any left? Are you saving it for anything? Can I have some? Oh! Did you make gravy? Is there a good way to nuke gravy without messing it up?" Mom is beginning to get the picture. Dad has to follow with some encouragement.
She can sit down and watch TV. For a year she would not do this AT ALL--"I can't just sit still, that's what fat people do." Well, now she can and does whenever she wants, and she does not think this is a "fat people" activity.
She eats out in restaurants with no hesitation whatsoever.
She eats whatever she wants at the time, period, with no hesitation whatsoever. Snack, meal, whenever. We have no binging behavior, real or imagined. (For a while, any bite or swallow outside of parent-insisted-upon eating was a "binge." This is no more.)
She is choosing appropriate foods for a sterotypical teenager all the time. I'm back to having to remind her that if she finishes off the milk or something, she needs to add it to the grocery list.
She thinks nothing of others being in the house at mealtimes or any other time. She eats anyway. ("Oh, whatever!")
Her weight has bumped itself up about four pounds, and is holding steady there, no matter what she eats. No complaints. (I still weigh her backwards, so she doesn't know her weight still, but weigh-ins cause no blip at all unless they are fouling up her social schedule. Four pounds on your basic size 4 is noticeable to the clothes-wearer, though. She's grown out of a few things . . . but she just thinks she's grown out of a few things. "If we go shopping, will you buy me new jeans? I've grown out of some of mine and the rest are ratty." Just information, no emotion to speak of.)
We have had nothing that even resembled a rage, higher-than-normal anxiety, and certainly not self-harm since about a week after starting her medication.
She doesn't seem particularly anxious at all, although her emotions are what would normally be expected from anyone. By that I mean she's not overly anxious, but definitely not "flat".
The psychiatrist was pretty wide-eyed at the difference in her. He's started the patient release protocol.
Our friends have commented on it repeatedly. These comments usually start out, "My god, she is sooooooo much better. . ." or, "She looks great. . ."
We are starting to breathe regularly again, because she's normal.
OK, that was a very thorough and honest answer. But I would still like to point out that I suspect everyone would react to any treatment as the individual chemical factory that they are at any given point in time, which is to say, differently.
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| Chocolate |
| | July 06, 2007 at 07:54 AM | Reply with quote | #31 |
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Thanks M for sharing your story, it makes me realize that we are not alone fitting this demon. We also have a big issue with clothing but it seems to be getting better. I am really happy to see that your d. is doing so well and that your family is going back to normal, Please keep us posted I will be following your progresses to see if we will jump in the wagon. |
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| Debra |
| | July 06, 2007 at 09:41 AM | Reply with quote | #32 |
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M, wasn't it more like at 9 or 10 weeks with the Easter Basket thing? I was thinking it took more like that for the "switch to flip" (we have been talking off line for some time now).
I just want to be clear for us as well as anyone else considering this. Pfeiffer told us 2-4 months for the obsessive thinking to clear (which would be at around 9 or 10 weeks).
For us, our d would not eat out at restauants. Also freaks when her sister has friends over a meal times. My d is obsessively counting calories and will only eat prepackaged foods.
At 2+ weeks, what we have seen (without any "pushing" on our part):
- She decided to eat dinner with the family last night.
- She has gone out for frozen yogurt twice (but it is still the sugar free fat free kind)
- She is planning to go to Olive Garden, she wants to, it is her idea, but she wants to go next week (again, right now we aren't pushing, we are letting the Pfeiffer treatment do its thing).
- She is nicer......MUCH nicer to be around. There is no more yelling and screaming in our house.
-She is smiling more
-Her sister will hang out with her WITHOUT me paying her to do so (before, even money wouldn't get her to do that---I tried).
-She is trying new foods (still prepackaged with calories on it though)
-She no longer asks if she HAS to eat! That was before EVERY meal or snack
-She will eat if I am not around now (before I had to be with her, now she gets up in the morning before me and has her breakfast and takes her Pfeiffer treatment pills all on her own before I get up---I like to sleep in, but haven't been able to in a long time because of her needing me).
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This may not seem like much. Isn't nearly as impressive as the changes in M's d......but considering two weeks ago, I was crying practically every day, and my h and I were barely talking because we were both too exhausted, and my other d was always trying to find friend's houses to go to just to be away from our home and my AN was angry and screaming and yelling all the time.......well.......this is a BIG change for us.
Now we are just hoping things continue, but we have it in our minds that it will be 2-4 months for things to click in....sooner would be better, but now there is at least a light at the end of the tunnel for us.
BTW, for anyone considering this, keep in mind time involved:
-First you apply to be a patient at Pfeiffer
-It took us 2 weeks to get accepted (M's time frame was less, I think it depends on how many applications you have to review and what is going on there).
-Once accepted, our appointment was 2 weeks later (so there went a month).
-The appointment took us about 3 hours, when they are done, they give you a primer based on what they suspect the problem is for the child to take until the actually nutrient plan is designed for them.
-Waited 2 months for the results (a very LONG 2 months--M can tell you, I was stressing that whole time, but she was such a sweetie and kept me motivated and gave me encouragement the whole time).
-Once the results are in, you make an appointment to go over results (this is on the phone, so you don't have to travel again for this).
-Order supplements (took us 6 days to get them).
-Then start taking them---the first week, we saw very little difference, more in mood, she was happier, but still anxious.
-For us, at around 8-9 days, we noticed she started doing better. Seemed more relaxed.
-Now....here we are....at 16 days...I need to sign off because my AN D and I are off to the store to buy her some new food........
Still a LONG way to go....but finally...FINALLY....we are seeing progress....before, things were at a stand still, and we were ALL discouraged.
Debra
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| M |
| | July 06, 2007 at 11:48 AM | Reply with quote | #33 |
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Wow, Debra, it sounds like at only 2.5 weeks you are seeing some real improvement. I think that all sounds pretty significant.
In my post above I did not mean to imply that all of the examples given occurred right at three weeks. These are actually examples from all along, some earlier, some later. I'm sorry for any confusion.
And when we asked about what to expect, our nurse told us that by the end of two months, she thought we would have seen dramatic improvements. That turned out to be right in our case. I'm assuming any difference in information is based on the individual's specific imbalances and the degree. I know some issues take longer to correct than others. I do regard our D's improvement as rapid--possibly better than average due to the supplements we already had in place.
We did feel that someone had flipped a switch at about three weeks, though. The anxiety and inner tension in our daughter just vanished. Our anxiety and inner tension has taken longer to resolve. We kept waiting for the other shoe to drop, but so far it hasn't. We continue having "firsts": first time making cookies and eating them with her little sister, first comment about her thighs that has nothing to do with her hating them, etc. . .We still marvel at these, but are beginning to take them in stride just like she now does.
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| Marie #2 |
| | July 06, 2007 at 06:56 PM | Reply with quote | #34 |
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M and Debra,
Thank you for sharing your experiences with us. It is so great to hear the improvements in your d's.
M, I had to laugh about the TV thing, because my d will not watch TV either. She has never said it is something that fat people do, but I suspect that is what she thinks!
Debra, please keep us updated. I'm very excited to hear what the next few weeks bring for you!
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| Debra |
| | July 06, 2007 at 07:14 PM | Reply with quote | #35 |
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Quote: Originally Posted by Marie #2
M, I had to laugh about the TV thing, because my d will not watch TV either. She has never said it is something that fat people do, but I suspect that is what she thinks!
My d would say that about TV and computers AND she still won't go to a movie theater (again, fat people do that). It is probably a common thought with these girls.
I will keep you updated. We have a trip to Disney World in 3 weeks and we are hoping that will be a turning point for her (and yes, those of you who followed our story, we did go back in March, we tend to go a couple times a year because we are Disney Vacation Club members which is like a time share at Disney--and my d loves it there and she does try very hard to do well while she is there--I didn't want to go again until she was better, but she begged us to go, and it does force her to eat out for a week, so we decided to take her again in hopes that it helps).
Debra
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| Bridget |
| | July 07, 2007 at 12:11 AM | Reply with quote | #36 |
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Hi M - both my husband and I have found all this absolutley fascinating. We have always felt that chemical imbalance was the cause of our d's illness - both the way she fell into it and came out of it seemed to us to be evidence of some sort of physiological problem - even though the symptoms seemed so psychological. I'm so glad that you were able to find this answer to your d's ongoing problems. And I hope Debra see a similar pattern for her d.
I have a couple of questions if you don't mind - more just out of curiosity than anything else. Is this going to life long treatment or do the Drs expect you d's brainchemistry to continue to improve on its own with time? Do they do follow up assessments and readjust the formula? Do you know if Pfieffer (sp?) are doing any research into the effects of their treatments on weight recovered people with AN?
Thanks so much for letting us know about this.
cheers
Bridget
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| sue |
| | July 07, 2007 at 01:35 AM | Reply with quote | #37 |
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hi everyone - again, following this with much interest. Debra, have checked out the biobalance website in Australia and will be getting in touch with one of their doctors on Monday to make further inquiries about this type of treatment in Australia.
I have read through all the research articles on the Biobalance website and find the whole idea of this type of treatment fascinating, for a wide range of mental health and behavioural problems particularly (anyone interested should give it a look). Given that we have exhausted so many other avenues of medical investigation over a good number of years I think we might just give this a go and see what happens. It doesn't seem it can do any harm, however I will be thoroughly investigating that before we present ourselves there. I'll be very happy to report on our experience here at initial contact and, thereafter.
Bridget, I know you are in Australia, but if you have a look at the biobalance website they have practitioners in every state, and in fact, the first guy that was trained in this research by the founding Doctor from Pfieffer is in fact located near to sunny Qld (Dr Richard Stuckey - some of the reserach articles and submissions are authored by him). Unlike the Chicago clinic, there seems to be a series of Pfieffer trained Doctors around the country who can order the tests required and then have the prescription filled at the Biobalance compounding chemist, where you can order further online. I'll let you know how I go with my inquiries next week.
M and Debra, please keep us posted with your news and developments.
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| M |
| | July 07, 2007 at 12:27 PM | Reply with quote | #38 |
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Quote: Originally Posted by Bridget
I have a couple of questions if you don't mind - more just out of curiosity than anything else. Is this going to life long treatment or do the Drs expect you d's brainchemistry to continue to improve on its own with time? Do they do follow up assessments and readjust the formula? Do you know if Pfieffer (sp?) are doing any research into the effects of their treatments on weight recovered people with AN?
I'll try to answer you questions in terms of my D, which is all I can really speak to: They haven't told me anything definitive at this point--it's still early, I guess. The goal of treatment is to get her back to a good balance where she has no symptoms, and they are confident they can do this. Some of what they are giving her are doses designed to restore balance, so the forumula will probably need to be adjusted as she comes back into balance. No doubt some of the imbalance was made worse by the starvation, and once back in balance would tend to remain so. But some of what she has going on is genetic. It is possible, then, that she will always need to supplement some things, and to be aware of the symptoms of deficiency. My hope for my child is that they can get her back where she should be and teach her how to maintain it. Yes, they do follow-ups and adjust as needed for all patients.
None of the research studies listed on the website is geared to eating disorders, and they do not specifically list eating disorders as something they treat. Actually they told me that they do not treat anorexia, but when I told them that our D had been weight-restored for some months and that our concerns were that the psychological and behavioral symptoms were still severe, they readily agreed to see her. And they do see other ED patients as well.
For any one interested: I got a postcard from them in yesterday's mail. They will in Annapolis, Maryland August 7, 8 and 9. They are taking appointments now. Call either 866-504-6076 or 630-505-0300.
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| Debra |
| | July 07, 2007 at 02:18 PM | Reply with quote | #39 |
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I asked if this would be a life long thing, and they basically said they couldn't tell yet (which I guess I already knew). They did say that some people, once they get in their mid 20s (totally past puberty and growing and such) will balance out and they may not need supplements. BUT things like stress and injury could throw her out of balance again.
I am looking at it as I would if my child had diabetes. She may need to be on this forever, she may be able to control it with less over time, but basically I am just grateful there is something that can help her. We just have to take it a step at a time.
We already have her follow up appointment scheduled for October (when we will have our other d tested too just to see if everything is fine with her--we don't expect any large out of balances, but we just want to see what comes up for her). Then I think through the main part of puberty she will have to go every 6-9 months. Later, I believe it is once a year.
We live close enough to Chicago that we can just drive there and back during a day, so we are going to the clinic for all of her follow ups. I believe M is having her d's done locally and then only going back occassionally to the clinic to see the doctor in person. So if you are far away, they try to make it easy for you to work with them long distance.
Debra
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| Bridget |
| | July 08, 2007 at 07:12 PM | Reply with quote | #40 |
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Hi all - thanks for the info. I will be following your prograss with this with great interest.
cheers
Bridget
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| Marie #2 |
| | July 11, 2007 at 01:40 PM | Reply with quote | #41 |
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M,
How did you get your insurance to pay help pay for this? Did you do anything before the appointment, or did you simpy file a claim after you had already been to the appointment?
I think we are going to give this approach a try. So, if we can get the insurance to pay for any of it, that would be great!
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| Debra |
| | July 11, 2007 at 05:34 PM | Reply with quote | #42 |
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We paid with a credit card and then they give you paperwork you can submit to your insurance. Ours paid about 60% of the cost.
You may want to look at this page:
http://www.hriptc.org/fees.html
It has a lot of information regarding fees and insurance.
Debra
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| Shawn |
| | July 11, 2007 at 09:39 PM | Reply with quote | #43 |
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Debra and M,
When you say your daughters were weight-restored before they were seen at Pfeiffer, what did that mean? What were their heights and weights, and for how long had they been there? Has their weight stayed pretty much the same after treatment started at Pfeiffer?
I am probably going to start the process at Pfeiffer but think we won't actually take my daughter in until she gains a bit more weight. She is 15, 5'4 1/2 inches and 108.4 pounds, and hopefully will continue to gain a pound or two a week for the next couple of months.
Shawn |
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| M |
| | July 11, 2007 at 11:36 PM | Reply with quote | #44 |
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Quote: Originally Posted by Marie #2
M,
How did you get your insurance to pay help pay for this? Did you do anything before the appointment, or did you simpy file a claim after you had already been to the appointment?
I think we are going to give this approach a try. So, if we can get the insurance to pay for any of it, that would be great!
We had called our insurance carrier months earlier about other AN stuff, and managed to get an individual case manager. Our case manger was an RN who could approve things that were not necessarily in our insurance contract. You may have this option, too. (In reality, our case manager wasn't much help, but in theory, she was great.)
We don't have referral restrictions on our policy, but we do have a deal where they only pay 50% of what they would have covered if you go "out of area." From Alabama to Chicago was definitely out of area. In the end they paid about 25% of our bill.
M
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| M |
| | July 11, 2007 at 11:53 PM | Reply with quote | #45 |
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Quote: Originally Posted by Shawn
Debra and M,
When you say your daughters were weight-restored before they were seen at Pfeiffer, what did that mean? What were their heights and weights, and for how long had they been there? Has their weight stayed pretty much the same after treatment started at Pfeiffer?
I am probably going to start the process at Pfeiffer but think we won't actually take my daughter in until she gains a bit more weight. She is 15, 5'4 1/2 inches and 108.4 pounds, and hopefully will continue to gain a pound or two a week for the next couple of months.
Shawn
Hi Shawn--
My daughter is 5' 4.5". When I called Pfeiffer she was 121-123 pounds and had been there for three and a half months. During the first six weeks of Pfeiffer treatment, her weight popped up to 126-127 while eating at a steady maintainence level, and has remained steady ever since. I don't count anymore, but it's not anywhere near refeeding levels and varies day-to-day. If I had to guess, I'd guess she's averaging maybe 2500 or so per day, or a little more. And that's with no exercise to speak of, just regular teenage activity--i.e., driving my car all over two counties, talking on the phone constantly, rolling her eyes, splashing in the pool a couple of times per week, sleeping until 10 am.
M
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| Debra |
| | July 12, 2007 at 08:03 AM | Reply with quote | #46 |
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My d is 5'3" and weighs between 105-108 (it varies). The thing is, she is only 13 and in the middle of puberty (with very little "curves"), so the whole BMI thing doesn't work for her. Around 15 or 16 girls fill out more, but we are comfortable with this since it is more than she ever weighed before, she weighs more than her twin sister for the first time in her life (but she doesn't know this) and most of her friends are right in that same area. Also her doctor (who has her records from the age of 4 months on) thinks she is at a good weight.
Personally, I wouldn't wait for full weight restoration as long as she is within a safe/healthy range (like above an 18 BMI). I wonder what it might have been like if we could have started on this right away instead of using all of those meds (that caused so many problems because from her tests they could tell she would have problems with the meds--has something to do with the malabsorption problem I believe). But we didn't know about Pfeiffer then.
I did have my d up to 110 at one time (a little over a 19 BMI) and it didn't make any difference for her. Mentally she was still just as messed up. BMI didn't make a difference in her case, but now we know why---she has a biochemical imbalance and food was not enough to get her back in balance. In her case, she couldn't have eaten enough to get herself back in balance.
Debra
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| Debra |
| | July 13, 2007 at 05:04 AM | Reply with quote | #47 |
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I just wanted to mention that if you are interested in learning more about the treatment they do at Pfeiffer and live close enough to attend, they are having an educational seminar next week. Here is their schedule:
http://www.hriptc.org/wednesday_seminars.html
I did not attend one of these, but it may be helpful in answering questions if you are able to do so.
Debra
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| Shawn |
| | July 13, 2007 at 09:15 AM | Reply with quote | #48 |
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Thanks Debra. Next week won't work but I plan to look into it further in August, hoping that maybe my daughter can start treatment(if they deem it appropriate) in fall.
Shawn |
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| Linn |
| | July 19, 2007 at 10:59 AM | Reply with quote | #49 |
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I went to the introductory lecture last night and was so intrigued and impressed. I've always known that each of us has a unique biochemical profile and I've looked forward to the day when treatment could be customized to address imbalances.
For me, something strange happens when I'm pregnant. I'm overweight and normally have trouble knowing when I'm really hungry, vs. thirsty, tired, stressed etc. and knowing when to stop eating. When I'm pregnant all those problems go away and I get all the right cues which have nothing to do with being bloated or uncomfortable due to the pregnancy. Each of my three pregnancies has been more dramatic, and during my last pregnancy, I actually went into the delivery room 10 pounds lighter despite the fact that I had a full term child in me - and the baby was normal weight - 7 lbs. This was without making a conscious choice to eat differently.
Pfeiffer is a "public charity" - not sure what that means exactly and they are non profit, so any qualms you may have about it being a scam should be put to rest. These are not airy fairy practioners who make well meaning guesses at how you are out of balance. They are biochemists who study the individuals chemistry and compare it to normal specimens. They gather data on large groups of people with similar conditions, searching for commonalities - like detectives. They have solid results in making people with serious disorders better, sometimes JUST with micronutrients and sometimes as adjuct therapy (as in the case of ED).
What I don't understand is why this approach is not more widely adopted and known about. My only nagging concern is that if it's so compelling why isn't every one doing it and why haven't mainstream practioners jumped on board.
Linn
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| Marie #2 |
| | July 19, 2007 at 01:10 PM | Reply with quote | #50 |
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Debra,
Any new developments? I'm so excited about this treatment that I just want to keep hearing how your d is progressing.
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