Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 Hi Peggie, I am in complete agreement with you here. I have a total of 3 doctors that I consider " good guys " . They represent 3 specialities and where my overall health/wellness is concerned, the 4 of us work TOGETHER! This has been ongoing for about 10 years. The other doctors of my life well, you know, the word " jerks " doesn't do them justice.And the doctors involved in the research I was in were even worse. But I don't mean to doctor-bash here. I do feel it is important that one finds doctors one can work with AS A TEAM. Doctors should never be given " carte blanche " with our bodies to do their thing! One of my doctors told me last summer he likes me alot because I teach him things!!! And I am not done with his " education " yet! (maybe I should send him an invoice?) I too have cut back on meds to see what the least dose is for me to get optimum results. Alot of Drs. just look in the PDR and prescribe the " adult " dose. My experience is that due to CMT and the pheriphial nerves condition, the higher the dose, the worse I am. We can teach our doctors alot - if they are open to that. Gretchen Peggie S. Weston wrote: > > From: " Peggie S. Weston " <malfunct@...> > > Hi . Peggie here. I beg to disagree with you, but the doctors DO NOT > ALWAYS KNOW BEST!!!! If I had done what the doctor told me to do with > elavil - I would be dead now. I was the one that had to cut my own dosage > down, because she wouldn't - and started me on 50mg (this was the MDA Neuro) > (with her own private practice) and wanted me up to 150 mg withing 3 months. > I have had two different doctors give me toxic medication that parallezed me > twice - and they knew I had CMT. I had another doctor do my " ankle fusion " > incorrectly and after 4 months of pain got to have it done again (by a > different doctor!). Like many of us - I have been to MANY doctors, and > could count on one hand any of them I would trust for anything....... Yes, > we must be aware and check our own medications - however, WHO CHECKS ON THE > DOCTORS? I think you are very wrong to say to have you doctor decide your > dosage. We know much better then they do!!! Have a good day > ----- Original Message ----- > From: <harmac1@...> > <onelist> > Sent: Wednesday, January 12, 2000 12:33 PM > Subject: Re: [] memory notes > > > From: harmac1@... > > > > , here - I've been noticing the questions regarding memory loss. I > > am one who believes CMT does not cause memory loss or confusion, but let > > me add a few thoughts to this. Many of us with CMT take a variety of > > perscribed medications. One many of us take is amitriptyline and drugs > > in that group. That is a great drug that contributes to memory loss and > > etc. Also the higher the dosage of that drug, the more likely is it's > > interference with memory. To avoid that problem, I take it at bed time. > > Remember : Every person reacts to any drug differently. With > > amitripyline, some become forgetful (me ) while or whoever next > > door may not One more comment on the amitriptyline is can also be a > > help for those who can't sleep. It's an antidepressent with many uses, > > Last comment, amitriptyline is a drug that must be used with caution. > > It's NOT one that you by yourself can " play " with to find the best > > dosage. Only your doctor can do this. It's a very potent drug. > > Actually, my last sentence is > > true of any drug. My memory is OK when I take it at bedtime and > > weighing the " good " against the " bad " in regard to amitriptyline, it is > > my choice to take it. The choices are always our own. > > Now, more about memory loss. Another warning that involves > > amitriptyline or groups of drugs of it's type is that often other meds > > are used in conjunction with such drugs, drugs such as valium or xanax > > or other types of that group. > > These dugs mixed together will intensify the affects. The doctor > > generally knows this and usually thats OK. Often after a week or two > > that can become less. If you're not a doctor or pharmacist, always > > check first with the doctor, ALWAYS make sure your doctor knows EVERY > > drug you take because many of us with CMT have several doctors. Then > > double check with your pharmacist. Mistakes are made by every human > > being. That's why I check, double check and read what I can, because in > > the end, I'd be the one to suffer, if a mistake were made. > > Lastly, memory disturbances are often a side effect of depression. > > A bad or sad day is not depression. But continued bad/sad days mixed > > with no desire to do the things that usually give you pleasure is. > > Depression is a very real condition and it MUST be taken seriously. You > > need to find a psychiatrist or psychologist. There is no shame in > > getting help, the only " shame " would be to ignore it and thereby, miss > > out on the joys life brings. My theory is : 1st - make sure you well ( > > other than the CMT or that there'd been no advance you'd not been aware > > of ) by checking with your primary care doctor. If you check out well, > > go to a psychiatrist or psychologist. > > What I's saying in this post is memory loss is NOT a direct effect > > of CMT, but your CMT can cause one to experience depression, along with > > a whole lot of other negative thoughts which can cause depression and > > problems with memory. It'd be comforting to say all our problems were > > caused by CMT. That reason would be so comforting, but so untrue. We > > have CMT but, unfortunately we are still subject to any disease any > > others without CMT can get. The flu's bad this year if a friend gets > > it, that awful but if we get it, it's it will be 10 times worse, > > according to my Neurologist. Use caution! Didn't mean to go on so > > long. > > > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2000 Report Share Posted November 12, 2000 In a message dated 11/12/2000 10:07:49 AM Eastern Standard Time, rosesattic1@... writes: .. Still, I noticed immediate changes with the colostrum and essential oils. With the others, I noticed side affects and minor relief. Just thought my story might help someone. Roseanne** Thanks Roseanne. I was going to try the fish oils. maybe I'll look into the colostrum as well. I would rather go the natural route first also. I don't feel comfortable with these heavy duty drugs just yet. Vioxx made me sleepy anyway. Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2000 Report Share Posted November 12, 2000 In a message dated 11/12/2000 11:00:33 AM Eastern Standard Time, PattyDFX1@... writes: But, anti-inflammatories do NOT change the disease process, they only make you more comfortable while the disease is progressing. This is the BIG question for me right now. My doc doesn't think it is necessary to go on the anti -disease drugs yet because I have no visible signs of the disease in my joints, only in my blood test restults. I wonder if damage is still being done anyhow. I hate drugs and don't know how I will feel if a second doc tries to put me on the heavy duty ones. I'm hoping my RA will go into remission. Doc says it could. Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2003 Report Share Posted January 13, 2003 > alot of kids who are autistic actually crave foods that make them sick. I had my daughter tested and she scored +4 on all dairy, soy, cheese, etc. I eliminated these from her diet and she quit having tantrums, saw more eye contact, less stimming. You may want to check out gfcf kids @ , I think you might be surprised by the difference it makes. I've taken out all the things she can't eat and replaced it with things she can, she is almost a typical 3 yr old now. She still has deficits in areas, but I'm now the mother of a totally different kid, you'd be amazed. She was nonverbal, now she has fifty + words, she is actually healthier and stool problems have cleared up, she is gaining weight and growing for the first time. At one point she fell off the charts for her weight and height in age range, now she is steady in the 25%. For us, it made all the difference in the world, it won't hurt to try, you may get the surprise of your life. Try it for a few weeks and then make the decision. Karyn > From: " Mark Sommerfeld " <cmsommerfeld@...> > Date: 2003/01/13 Mon AM 02:05:41 EST > <Autism_in_Girls > > Subject: RE: Re: medications > > Man that would be hard for me.........Hannah hardly eats anything as it > is, and dairy is the one thing she will eat, loves her milk and > cheese..........oh well, Cheryl S > > Re: medications > > > I know several people whose children calmed after eliminated dairy > from their diet. I'm not talking the full-blown gfcf diet, but they > simply took dairy out and said the children all calmed within days. > > HTH, > Debi > > > > Hi Everyone, > > I was hoping someone out there could help shed some light for me. I > > have a daughter Caitlin who just turned 4 in Dec. She is severely > > autistic and extremely hyper! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2003 Report Share Posted January 13, 2003 All sounds good.......but what do i replace the foods with...she is so darn fussy with her food, she is 8, and is so headstrong.......it is a struggle to even get apples and bananas down her at times.................why do foods effect Autistic kids is what i wanna know??? I mean she is growing, her toileting is fine, she isn;t fat, but she isn;t malnutritioned either going to be quite tall like her sister i think.......i just run around in circles trying to work out what is best......thanks for your help, cheryl S -- Re: medications > > > I know several people whose children calmed after eliminated dairy > from their diet. I'm not talking the full-blown gfcf diet, but they > simply took dairy out and said the children all calmed within days. > > HTH, > Debi > > > > Hi Everyone, > > I was hoping someone out there could help shed some light for me. I > > have a daughter Caitlin who just turned 4 in Dec. She is severely > > autistic and extremely hyper! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2003 Report Share Posted January 13, 2003 Karyn yes this to be true of dairy for me too. I to be to avoid it at all cost but there to be times I to allow it and pay price afterwards. I to be to get much hyper, aggressive, and more into self. the whole sensory world seems to rapidly spin out of control for me when consuming dairy. Sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2003 Report Share Posted January 13, 2003 Karyn yes this to be true of dairy for me too. I to be to avoid it at all cost but there to be times I to allow it and pay price afterwards. I to be to get much hyper, aggressive, and more into self. the whole sensory world seems to rapidly spin out of control for me when consuming dairy. Sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2003 Report Share Posted January 13, 2003 ahhh...the diary issue. Seems to be popping up all over the place. Ever tried Houston's Peptizyde for infractions? May be worth looking in to. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2003 Report Share Posted January 13, 2003 ahhh...the diary issue. Seems to be popping up all over the place. Ever tried Houston's Peptizyde for infractions? May be worth looking in to. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2003 Report Share Posted January 13, 2003 Believe it or not, when that child gets hungry enough she will eat what she's given. I know it sounds hard to believe but it's true. I personally think the whole gfcf diet is too invasive and quite frankly, a royal pain in the ass, not to mention it can be costly. We've begun dabbling in digestive enzymes instead. Just a thought. Rhonda Olivia's mom (27 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2003 Report Share Posted January 13, 2003 Believe it or not, when that child gets hungry enough she will eat what she's given. I know it sounds hard to believe but it's true. I personally think the whole gfcf diet is too invasive and quite frankly, a royal pain in the ass, not to mention it can be costly. We've begun dabbling in digestive enzymes instead. Just a thought. Rhonda Olivia's mom (27 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2003 Report Share Posted January 13, 2003 believe it or not my dd eats pancakes, waffles, eggs, toast you name it she can just about eat it. The only difference is the flours and milk type products you use, they have tons of info on the gfcf kids site. after a while of the diet and enzymes she started broadening her diet, it sometimes will take a while but well worth it. If I had known then what I know now, she'd of gone through all this way back. I agree, it's not the easiest thing in the world but you have to think what is best for her. Some kids have lost alot of their autistic behaviors just by being on the diet, some are not as lucky, but there are a ton of things that you can do. We have only been doing the diet, vitamin therapy, Listening program, ABA, ST, OT, play therapy for about 3 months now. She went from a nonverbal head banging hellion to an almost typical 3 yoa in that short time. I'll do it again if necessary. Karyn > > From: " Mark Sommerfeld " <cmsommerfeld@...> > Date: 2003/01/13 Mon PM 01:38:38 EST > <Autism_in_Girls > > Subject: Re: RE: Re: medications > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2003 Report Share Posted January 13, 2003 > As far as foods effecting them, the easiest way to tell you is, the body has been damaged (immune system and other things for various reasons) foods have protiens in them and most autistic children can't break the proteins down. The proteins actually make holes in the stomach (this is called the leaky gut)and get in the blood and go to the brain and cause " the brain fog " . Certain foods are high in phenols, if they have PST (phenlic Saccilycite Transfer) problems then these are issues as well. They tend to cause bad behaviors and things like that. Also bc thier little bodies have been damaged by antibiotics and other things they tend to have yeast overgrowth, you have to take care of that as well. Here is a wonderful site that will explain so much that it will be very overwhelming. She has 4 children 3 of which were on the spectrum, not any longer. IF that's not enough to convince you, ask me more questions my dd is a whole different child an amazing difference. www.autismchannel.net/dana/ Remember this is a mom who has done alot of research, she is on some listserves that I'm on and has a ton of valuable information. Karyn > From: " Mark Sommerfeld " <cmsommerfeld@...> > Date: 2003/01/13 Mon PM 01:38:38 EST > <Autism_in_Girls > > Subject: Re: RE: Re: medications > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2003 Report Share Posted January 13, 2003 > That's her, she goes into the zone looses all speech, eye contact, and basically is a walking zombie. If she never eats dairy again it won't matter, I have a much happier, brighter and fun loving little girl - and beleive me they told me she was hopeless. The most I could hope for is to get her behaviors under control. HAHAHAHA - Can't wait till our next appt with the dev ped!!!!! Karyn > From: " Sondra " <hfa2@...> > Date: 2003/01/13 Mon PM 01:39:54 EST > <Autism_in_Girls > > Subject: Re: RE: Re: medications > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2003 Report Share Posted January 13, 2003 > actually we just started (low and slow) she's gf/cf now, but was hoping that the enzymes would allow us to get off the diet and the enzymes would help heal her gut as well. She's tolerating them ok, a little hyper and some eye contact issues. We seem to have this whenever we start something new so I'm hoping that this will eventually pass. It's not out of hand, but I I have a journal I keep (all foods, behaviors, therapies, vits & supps, bms, etc.) SOOOOO, I'm pretty aware of what her behaviors may or may not mean. I thought that I'd read that alot of kids had some hyperactivity when starting enzymes, am I right? Karyn > From: rhonda m pineau <scottron2@...> > Date: 2003/01/13 Mon PM 02:24:42 EST > Autism_in_Girls > Subject: Re: RE: Re: medications > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2003 Report Share Posted January 13, 2003 I agree, it's by far one of the hardest things that we've ever done. I shove pills down a 2 yoa and that wasn't half as hard as the diet, BUT I saw immediate results, and now that I'm getting familiar with enzymes we are taking this route as well. The one thing that I've learned is that you can't move forward if you haven't gotten to the root of the problem. That's just been from my experience, but hey everyone is entitled to thier own say. Karyn > > From: rhonda m pineau <scottron2@...> > Date: 2003/01/13 Mon PM 02:30:52 EST > Autism_in_Girls > Subject: Re: RE: Re: medications > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2003 Report Share Posted January 13, 2003 > there is. it's a 90 panel IgE/IgG. Your reg ped can do it. Well mine did. Karyn > From: Diane Bond <dianeque@...> > Date: 2003/01/13 Mon PM 03:41:38 EST > Autism_in_Girls > Subject: Re: Re: medications > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2003 Report Share Posted January 13, 2003 > This is true, the IgE/IgG are going to give you food sensitivites and true allergies. Sometimes, it may be easier to just take away milk for 3 weeks or so and see if you see improvement. This test cost about $600, insurance paid for mine, but I don't know your current situation. The diet is hard and actually I started the diet and now am working on enzymes so that we will hopefully be able to ditch the diet. It would be in your best interest to look at both things and compile info and do what is best for your family. You can go the the autism treatment and GFCFKids both of these places will give you excellent information to enable you to make a better decision for your family. I'm not pushing either one. I'm simply stating that these could be a useful option for your current situation. As I stated before I'm currently doing both until I feel her gut has healed and will be more tolerant of the foods she is sensitive to. Karyn > From: rhonda m pineau <scottron2@...> > Date: 2003/01/13 Mon PM 04:02:57 EST > Autism_in_Girls > Subject: Re: Re: medications > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2003 Report Share Posted January 13, 2003 I heard for the first couple weeks they're sort of " off " . Hyper, sleeplessness, that sort of thing. Maybe a little more stimming, also but then you'll notice improvements within 3 weeks or so, generally. I have Zyme Prime by Houston's, I'm going to order their Pep and No Fenol as well but first I'm trying to work on her leaky gut. We're giving Culturelle and Ultra Flora Plus for probiotics and just this evening began aloe vera gel. Are you on the enzymes list? When did you begin the enzymes? Which ones are you giving and how old is your daughter? Rhonda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2003 Report Share Posted January 13, 2003 Ok...........need some info or a site I can look up on this, I have heard bits and pieces before, but the idea of a diet, when I have too other children is just too hard......as that means they would have to go on it as well, as I would not try to separate, that would be asking for trouble. Cheryl S Re: RE: Re: medications Believe it or not, when that child gets hungry enough she will eat what she's given. I know it sounds hard to believe but it's true. I personally think the whole gfcf diet is too invasive and quite frankly, a royal pain in the ass, not to mention it can be costly. We've begun dabbling in digestive enzymes instead. Just a thought. Rhonda Olivia's mom (27 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2003 Report Share Posted January 13, 2003 thanks for that info, will take time to do a bit of reading..when is the problem.......hahaha Cheryl S -- Re: Re: medications > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2003 Report Share Posted January 13, 2003 food allergies. When we had ours done we could only pick 7. All came back normal, even milk which blew my mind because I know she has an intolerance to milk. Other than this testing, the best way to tell if your child has a problem with foods is by doing a trial elimination. You'll usually know within a couple weeks if there's a problem. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2003 Report Share Posted January 14, 2003 > food allergies & sensitivities. > From: Diane Bond <dianeque@...> > Date: 2003/01/13 Mon PM 07:42:12 EST > Autism_in_Girls > Subject: Re: Re: Re: medications > > Quote Link to comment Share on other sites More sharing options...
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