Guest guest Posted April 5, 1999 Report Share Posted April 5, 1999 > > What's the point of having a birth plan if you're going to use the phrase > " unless medically contraindicated " ? Doesn't this put every decision right back > into the hands of the medical facility, physician, etc.? My experience with > physicians is that their perception is such that every procedure regularly > performed has medical significance, making any deviation from their normal > practices fall into this category. For instance, we refused the IV for several > reasons, and had I used this phrase in my birth plan I feel certain that the > doctor would have taken the opportunity to tell me that because my blood > pressure was elevated when I was admitted to Labor and Delivery, that there was > a medical contraindication for not having the IV, and I would have been > immediately plugged up. Anyone else have any thoughts on this? > Tammy > Aloha Tammy, In the hospital where I am a L & D R.N. some MD'd have standiing orders for I.V.'s and some do not. If some has an MD that has standiing orders for an I.V. and the women does not want one I tell her that basically the MD wants it as a " just in case " and that she can just say no. If she should have a complication such as hemmorrage or seizure, or changes her mind and wants pain medication, then we would need to start one, unless they want to refuse one under all circumstances. Naturally, my personal thoughts are not to start one unless really needed. Does that sound resonable enough? Marcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 1999 Report Share Posted April 5, 1999 > > Date: Sat, 03 Apr 1999 11:13:31 -0500 > From: Reiss <lisa@...> > Subject: Re: birth plan > > I did not change doctors because of a medical history from when I was > born. I was afraid of having my baby be born outside a hospital. My > daughter was born in a hospital with a neonatal unit, just in case. > Unfortunately, it was my first child and I did not fully understand all > the aspects of birth (ie. right to refuse treatment, vaccines, vit K, > eyedrops, etc etc,). nor what really happened at my birth until it was > almost time for my daughter to be born. As someone said, Knowledge is > power and as I said before the next child/dr/pediatrician/birth > experience will be different. > > In regard to saying unless it is " medically contraindicated " I'd like to > share a recent experience. As many of you know I have been desperately > looking for a MD. One of the pediatrician's I spoke with recently said > he had never had parents who completely refused vaccines. He said he > wanted her to get HiB. I explained she is not in daycare, almost 15 > months old, it is now spring, blah, blah. He agreed. Then he said she > needed the measles shot. I briefly explained that there is a family > history of allergies to eggs, (my husband, myself, my mom, my sister, > and my grandmother all allergic) and that as far as I understood that an > allergy to eggs was a contraindication to getting the measles > shot.....Get this...this was his response....Well, that is true but I > have spoken with many allergists across the US (yeah right) and > according to them this contraindication is not really warranted because > it is such a small amount. I then explained my daughter's family > history re: eggs. Guess what his response was....Well, she can always > receive the measles vaccine in a hospital just in case she has a > reaction! > > Am I the only one that had a brain in that conversation? I told him she > was not getting the vaccine and that we are not going to risk my > daughter's life. That if she got measles then she would pull through > just fine. > > My suggestion is simply write that every procedure must get prior > approval from the parent. Of course, they will find some way around > it... > > Aloha , Actually, every procedure that is invasive like vaccines etc does require approval from the parents. When you enter the hospital you are often give a ton of paperwork to sign. Usually no one reads it because they are in labor! This is something that really bothers me as this is supposted to be informed consent! I suggest EVERYONE who plans to deliver in a hospital insist that both your MD and the hospital give you copies of those forms ahead of time so you can really read them. Otherwise you are usually signing under duress, which is a far cry from informed consent! Marcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 1999 Report Share Posted April 5, 1999 > > Message: 6 > Date: Sun, 4 Apr 1999 08:19:39 +1200 > From: " jenick " <jenick@...> > Subject: Re: birth plan > > I am still gettign used to this one list thing and I wrote to 'Kerin' > thinking it was her. Sorry to single you out. > the birth plan thing is Tricky. In the States I htnk it is an important > communication tool for the woman/ family and care givers. I am not sure > how it works in the States ( been here four years) but research has proven > that knowing your caregiver the same caregiver for the whole experience has > better outcomes. My suggestion ( and excuse ignorance if I don't get > somethings right) is if you are plannig a hosptial birth then research the > hospital take tours, ask about 'protocols' and routine procedures and your > right to refuse. The routine pocedures should be medicly indicated.i.e > IV., walking aroung in labour useing the spa, shoower, and the 'monitor' > is it continuous or intermittent. ASk WHY if you are unsure. Continuous > has replaced human monitoring. I stay with a women the entire labor > checking her baby through out no matter what position and where she is. I > we need a monitor then it is because her babe needs to be watched closely. > Like I said I am not sure how it works 'back home' but it is really hard > if you have different 'caregivers' throughout. There is miscommunnication > and bullying. Labor is not the time to negotiate. Woman are vulnerable and > the the babies 'saftety' is sometimes used as a tool to bully women. Make > sure your caregiver has your best interest in mind. YOu are the > consumer..literally. IN New ZEaland maternity care is paid for except if > you choose a specialist. If you need a specialist that too is free and > you always have a midwife. Ideally the same one through out. I only saw > the one women up till my six week check. Even her the system is not ideal > and the politics are are hairy but women have a choice. > > Ask about all aspects of the birth. Freedom to choose your birthingpositon > etc. What are there episiotomy rates. There is no way to tell if a women > needs an episotomy before the actual birth. if they say 'ALL FIRST MOMS GET > THEM' or IF YOU HAD ONE BEFORE.... then you need to ask why and maybe > think of birthig somewhere else. Ask about > the care after the babe is born cord cutting? That is all part of third > stage. If they activly manage third stage or let it happen naturaly. I > tgets really tricky. I wish all women had midiwves and or carers who > trusted womens bodies adn wanted to empower the women. I hope this helped. > From a cargivers perspective Birthplans can be a pain' if the women says > I DON " T WANT THIS AND THIS AND THIS!!! It is impossible to know how things > will be. Use it as a tool to understand protocols and practice procedures > and gt to know you caregiver. If its your OB then get to know them and ask > why if you don't understand. Blah blah. I actulayy wrote an 2000 word > essay on the subject when i was getting my degree. it can complicated but > it is used diffferntly in this part of the world. > > Lots of litigation in the states. > Your perception is correct Jenick. I also agree with your ideas. In the US most hospitals have L & D nurses that basically do most of the care. Teaching hospitals may leave things more to the residents. I have worked were the staffing was 5 R.N.s to whatever we got! Many times we might have 20 or 30 women in a night. So you see it just was not possible to monitor by hand or to stay with one person. In that situation you need a good coach or else hire a doula to come with you to the hospital. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 1999 Report Share Posted April 5, 1999 Marcy Koltun-Crilley wrote: > From: Marcy Koltun-Crilley <marcy@...> > > > > > What's the point of having a birth plan if you're going to use the phrase > > " unless medically contraindicated " ? Doesn't this put every decision right back > > into the hands of the medical facility, physician, etc.? My experience with > > physicians is that their perception is such that every procedure regularly > > performed has medical significance, making any deviation from their normal > > practices fall into this category. For instance, we refused the IV for several > > reasons, and had I used this phrase in my birth plan I feel certain that the > > doctor would have taken the opportunity to tell me that because my blood > > pressure was elevated when I was admitted to Labor and Delivery, that there was > > a medical contraindication for not having the IV, and I would have been > > immediately plugged up. Anyone else have any thoughts on this? > > Tammy > > > > Aloha Tammy, > > In the hospital where I am a L & D R.N. some MD'd have standiing orders for I.V.'s and some do not. If some has an MD that has standiing orders for an I.V. and the women does not want one > I tell her that basically the MD wants it as a " just in case " and that she can just say no. > If she should have a complication such as hemmorrage or seizure, or changes her mind and wants pain medication, then we would need to start one, unless they want to refuse one under all circumstances. > Naturally, my personal thoughts are not to start one unless really needed. > Does that sound resonable enough? > > Marcy > > ------------------------------------------------------------------------ > If you like orange and blue, then you will love our new web site! > > Onelist: ing connections and information exchange Hi Marcy, Too bad I couldn't have delivered in you hsopital! Sounds more than reasonable to me. Even though I refused the IV they would not let me go without a Heparin Lock, which was removed right after delivery. Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 1999 Report Share Posted August 2, 1999 Hi Gail: I hope you are seeing from your comrades on-line how it is OK, reasonable, valid, to be expected to feel sad. Right now you may want to see this experience as a wash. When you are ready, you can see the good in it- your daughter's (and your) conviction, desire to have a regular life are just some of the strengths that are going to maintain your foothold against OCD. It is not fair; that's for sure- but it would be good for both of you to write out a list of what was good about camp as well as what " stinks " about it. Keeping a balance in thinking will also take your daughter a long way. Best, Tamar Chansky, Ph.D. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2000 Report Share Posted March 3, 2000 Hi, Does anyone know if T3 is dangerous to take if you have an adrenal disorder? If so, why? Thanks. Shari Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2000 Report Share Posted March 13, 2000 I love the recipe that you can find at makestuff for the gel smellies never had a problem with them, but had recently came across this that you might find interesting as well * Exported from MasterCook * Potpourri Gel Jars Recipe By : Real Food for Real People Serving Size : 4 Preparation Time :0:00 Categories : Non-Food OAMC Amount Measure Ingredient -- Preparation Method -------- ------------ -------------------------------- 2 cups Distilled Water 4 packages Un-flavored Gelatin 50 drops Essential Oil -- (for fragrance) Food Coloring -- as desired Heat one cup water in medium sized saucepan. Add gelatin, stirring to dissolve. Remove from heat and add remaining 1 cup of liquid as well as food coloring, and stir until dissolved. Put drops of essential oil into jars then add gelatin mixture. Place in fridge for approximately 2 hours. Remove, cover with plastic wrap or lid if you have one, and store at room temperature. To release the scent simply remove the lid... and when you are finished make sure you re-cover the jar so all the scent doesn't evaporate. This recipe makes four gel jars/ aprox. 4 oz each. To decorate for gifts, tie ribbon or lace around the neck of the jar or add silk/dried flowers to the bow. It works very well to cut a circle of lace which can be reapplied after removing lid, by screwing the band on over the lace. This will allow the scent to be enjoyed as well as keeping the jar decorative while it is being used. Kaylin, Here's another method of making these cute little jars. They really make nice gifts. You will need: Clear glycerin soap Essential Oil Coloring if desired-to compliment the fragrance you choose. Grate or chop soap and place in glass measuring cup. Heat in microwave until thoroughly melted. Stir in your essential oil and coloring. Pour into jars and decorate as desired. This will also be a thick enough mixture that you can suspend things like lemon slices or orange slices in them. I have also made these gel jars this way: You will need: 4 envelopes plain gelatin 16 oz. bottle potpourri oil In heat proof 4 cup glass cup place 8 oz. of potpourri oil. Heat in microwave until really hot. This will give off a VERY STRONG fragrance so you may want to open a window. Stir in gelatin until completely dissolved. Add the remaining 8 oz. potpourri oil. Pour into jars and decorate. The potpourri oil is available in most WalMart stores and craft stores. It has coloring added to it so you don't need to add any additional coloring. Herbal & Floral Dream Pillows Love and GOD Bless, Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2000 Report Share Posted March 13, 2000 I love the recipe that you can find at makestuff for the gel smellies never had a problem with them, but had recently came across this that you might find interesting as well * Exported from MasterCook * Potpourri Gel Jars Recipe By : Real Food for Real People Serving Size : 4 Preparation Time :0:00 Categories : Non-Food OAMC Amount Measure Ingredient -- Preparation Method -------- ------------ -------------------------------- 2 cups Distilled Water 4 packages Un-flavored Gelatin 50 drops Essential Oil -- (for fragrance) Food Coloring -- as desired Heat one cup water in medium sized saucepan. Add gelatin, stirring to dissolve. Remove from heat and add remaining 1 cup of liquid as well as food coloring, and stir until dissolved. Put drops of essential oil into jars then add gelatin mixture. Place in fridge for approximately 2 hours. Remove, cover with plastic wrap or lid if you have one, and store at room temperature. To release the scent simply remove the lid... and when you are finished make sure you re-cover the jar so all the scent doesn't evaporate. This recipe makes four gel jars/ aprox. 4 oz each. To decorate for gifts, tie ribbon or lace around the neck of the jar or add silk/dried flowers to the bow. It works very well to cut a circle of lace which can be reapplied after removing lid, by screwing the band on over the lace. This will allow the scent to be enjoyed as well as keeping the jar decorative while it is being used. Kaylin, Here's another method of making these cute little jars. They really make nice gifts. You will need: Clear glycerin soap Essential Oil Coloring if desired-to compliment the fragrance you choose. Grate or chop soap and place in glass measuring cup. Heat in microwave until thoroughly melted. Stir in your essential oil and coloring. Pour into jars and decorate as desired. This will also be a thick enough mixture that you can suspend things like lemon slices or orange slices in them. I have also made these gel jars this way: You will need: 4 envelopes plain gelatin 16 oz. bottle potpourri oil In heat proof 4 cup glass cup place 8 oz. of potpourri oil. Heat in microwave until really hot. This will give off a VERY STRONG fragrance so you may want to open a window. Stir in gelatin until completely dissolved. Add the remaining 8 oz. potpourri oil. Pour into jars and decorate. The potpourri oil is available in most WalMart stores and craft stores. It has coloring added to it so you don't need to add any additional coloring. Herbal & Floral Dream Pillows Love and GOD Bless, Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2000 Report Share Posted June 13, 2000 This is for Gail, I don't know if your post was meant for me or not, but if it was, I was just trying to tell some people who may not have know about the thing that I was talking about, and if it was meant for me 7 people died from the West Nile Virus last summer, no I do not believe that HIV or HEP C can be transmitted this way, but better safe than sorry, if you were talking about someone else, than sorry, It is the researchers who are coming out with this news, but like I said before, they are only testing in a lab, not with humans. One more thing, the mosquitos are back, and they have found 5 dead birds already. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2000 Report Share Posted June 13, 2000 This is for Gail, I don't know if your post was meant for me or not, but if it was, I was just trying to tell some people who may not have know about the thing that I was talking about, and if it was meant for me 7 people died from the West Nile Virus last summer, no I do not believe that HIV or HEP C can be transmitted this way, but better safe than sorry, if you were talking about someone else, than sorry, It is the researchers who are coming out with this news, but like I said before, they are only testing in a lab, not with humans. One more thing, the mosquitos are back, and they have found 5 dead birds already. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2000 Report Share Posted June 13, 2000 This is for Gail, I don't know if your post was meant for me or not, but if it was, I was just trying to tell some people who may not have know about the thing that I was talking about, and if it was meant for me 7 people died from the West Nile Virus last summer, no I do not believe that HIV or HEP C can be transmitted this way, but better safe than sorry, if you were talking about someone else, than sorry, It is the researchers who are coming out with this news, but like I said before, they are only testing in a lab, not with humans. One more thing, the mosquitos are back, and they have found 5 dead birds already. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2000 Report Share Posted June 13, 2000 This is for Gail, I don't know if your post was meant for me or not, but if it was, I was just trying to tell some people who may not have know about the thing that I was talking about, and if it was meant for me 7 people died from the West Nile Virus last summer, no I do not believe that HIV or HEP C can be transmitted this way, but better safe than sorry, if you were talking about someone else, than sorry, It is the researchers who are coming out with this news, but like I said before, they are only testing in a lab, not with humans. One more thing, the mosquitos are back, and they have found 5 dead birds already. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2000 Report Share Posted June 14, 2000 Hi Gail, I am with you 100%, but just a thought, do you think if the mosquitos could and do carry HIV or even Hep C, do you think the government would let us know, I truly don't think so. See how quite they are about this Hep C. They were supposed to start putting on T.V. commercials last June, have you see one? Not me. What are they hiding, I cannot for the life of me understand why they would not want to educate the people of the United States? I got my information from my doctor, who in turn got it from a monlthy news letter, from BLUE CROSS, to educate all people, I am just very lucky, he copies everything he has to do with hep, and gives them to me. It is something we should all start to think about, WHY????? No hard feelings, anytime you want to write, please do, you can even e-mail me if you want to, we all have to stick together, CCAMPB3234@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2000 Report Share Posted June 14, 2000 Hi Gail, I am with you 100%, but just a thought, do you think if the mosquitos could and do carry HIV or even Hep C, do you think the government would let us know, I truly don't think so. See how quite they are about this Hep C. They were supposed to start putting on T.V. commercials last June, have you see one? Not me. What are they hiding, I cannot for the life of me understand why they would not want to educate the people of the United States? I got my information from my doctor, who in turn got it from a monlthy news letter, from BLUE CROSS, to educate all people, I am just very lucky, he copies everything he has to do with hep, and gives them to me. It is something we should all start to think about, WHY????? No hard feelings, anytime you want to write, please do, you can even e-mail me if you want to, we all have to stick together, CCAMPB3234@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2000 Report Share Posted June 14, 2000 Hi Gail, I am with you 100%, but just a thought, do you think if the mosquitos could and do carry HIV or even Hep C, do you think the government would let us know, I truly don't think so. See how quite they are about this Hep C. They were supposed to start putting on T.V. commercials last June, have you see one? Not me. What are they hiding, I cannot for the life of me understand why they would not want to educate the people of the United States? I got my information from my doctor, who in turn got it from a monlthy news letter, from BLUE CROSS, to educate all people, I am just very lucky, he copies everything he has to do with hep, and gives them to me. It is something we should all start to think about, WHY????? No hard feelings, anytime you want to write, please do, you can even e-mail me if you want to, we all have to stick together, CCAMPB3234@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2000 Report Share Posted June 14, 2000 Hi Gail, I am with you 100%, but just a thought, do you think if the mosquitos could and do carry HIV or even Hep C, do you think the government would let us know, I truly don't think so. See how quite they are about this Hep C. They were supposed to start putting on T.V. commercials last June, have you see one? Not me. What are they hiding, I cannot for the life of me understand why they would not want to educate the people of the United States? I got my information from my doctor, who in turn got it from a monlthy news letter, from BLUE CROSS, to educate all people, I am just very lucky, he copies everything he has to do with hep, and gives them to me. It is something we should all start to think about, WHY????? No hard feelings, anytime you want to write, please do, you can even e-mail me if you want to, we all have to stick together, CCAMPB3234@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2000 Report Share Posted June 14, 2000 To cindy they do have tv commercials on hep.c here in philadelphia charley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2000 Report Share Posted June 14, 2000 To cindy they do have tv commercials on hep.c here in philadelphia charley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2000 Report Share Posted June 14, 2000 To cindy they do have tv commercials on hep.c here in philadelphia charley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2000 Report Share Posted June 14, 2000 To cindy they do have tv commercials on hep.c here in philadelphia charley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2000 Report Share Posted September 15, 2000 Your daughter appears to have almost the Exact same symptoms I had. See my post on how B Complex Vitamins CURED my epilepsy. I'll try to post it below If not successful I will send another Email. [This message contained attachments] ________________________________________________________________________ ________________________________________________________________________ Message: 2 Date: Thu, 14 Sep 2000 07:29:49 EDT From: kingconndb@... Subject: One personal story posted for comparison One personal story posted for comparison. My 27 year old daughter has Epilepsy. She has had it for 12 years and averages one grand mal per year. She takes Depakote. The first seizure occurred when she was a teenager. My wife and I tie it to a virus she got while we were on vacation out West. Doctors have dismissed our suggestions. There are obvious relationships we observe when the episodes occur. All of her seizures have occurred in the morning, first thing. Once in the shower. (Tip: I have since removed the drain stopper that closed when she fell.) Most of her seizures, perhaps all, have been tied to her menstrual cycle. Many of her seizures have been tied to too little sleep and often to alcohol consumption. She knows she shouldn't drink but finds herself in denial about many aspects of epilepsy, trying to live her idea of a normal life. She has a very minor problem with acne or something like it and also athlete's foot. (Something I read recently tied Epilepsy and skin problems.) I am convinced the Depakote has changed her personality and her sense of reason on specific isolated subjects. It has clearly increased her need for sleep. I would love to see her off the Depakote. I continue to monitor this page for any new information that would help. One suggestion was for EEG Biofeedback (Neurofeedback.) I have a Focal Dystonia I have been curious about so we both went. SMR or low level Beta is the frequency range for most activities. Lower frequencies like Theta are associated with meditation and even lower Delta with sleep. My Theta was 2-3 times the SMR, somewhat unusual, not uncommon for musicians, artists etc. Hers was 8! Definitely Epilepsy related. My wife went in for a reading but not treatment because the therapist was curious. Her Theta was 4 times SMR but she could hyper-focus and suppress it at will. The treatments did not seem to have any affect on her epilepsy or my focal dystonia. (It was fascinating and useful and seemed to improve my golf game.) The therapist concluded that genetics played a major role in the Epilepsy. She has tried a macro-biotic diet and is 90% vegetarian. No apparent influence on Seizures. I am intrigued by the recent posts about Carnitine. I will look into it more. Anyone have any experience? ________________________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2000 Report Share Posted September 15, 2000 The Carnitine Deficiency stotry is one of the most moving presentations I have ever read and it only reinforces how barbaric and truly " experimental " are the army of invasive procedures that sound to me like unreal torture chambers for intimidated victims of medical hi technology run amok. Arnold Gore Consumers Health Freedom Coalition ---- Original Message ----- From: " Zoe Langley " <Zoe@...> < egroups> Sent: Tuesday, September 12, 2000 5:09 PM Subject: Fw: VERY IMP.--Carnitine deficiency!!! > > Re: VERY IMP.--Carnitine deficiency!!! > > > > I had read about this young woman and hoped to interview her. She died > last > > year before we could get connected. All parents whose children develop > > seizures at a young age can take heed of what happened to , and why > > her life was so short. The drugs can exacerbate some conditions, like > > carnitine deficiency, and there's no reason to ignore that possibilty, as > > did her specialist, when there are symptoms. > > Zoe > > There Is Hope > > From: Baccus Luker > > Email: pluker@... > > Date: 30 Dec 1998 > > Time: 15:26:43 > > Remote Name: bar-ns-1-43.jvlnet.com > > Remote User: > > > > Comments > > THERE IS HOPE > > By Baccus Luker > > 800-377-6226 ext. 242 > > > > My daughter, , is an alert, bubbly young woman who recently started > a > > vocational training program at Oakland Community College. But not too many > > years ago we had to help her walk across the hall from her bedroom to the > > bathroom. Often she used a wheelchair for distances because she was so > weak. > > Her recovery sounds like a miracle, and to us, her family, it has been. > > > > had her first seizure at 11 months old. She since has had > thousands. > > met her developmental milestones until she was four, but her > > seizures continued. In elementary school 's cognitive development > > slowed and her seizures increased. We tried the ketogenic diet. Her > > condition got worse. We tried one " new " drug after another. Most worked > only > > for a few months. took valproic acid. The drug reduced her > seizures > > but over time caused hyper-ammonium toxicity. She stopped taking it. > Another > > medication, Mogadon, showed great promise, but when was > hospitalized > > for other medical needs the Mogadon was stopped. When she got out Mogadon > > was no longer available. The testing period had ended. She could have > stayed > > on the drug had she not been hospitalized. > > > > As entered her teens her seizures became more frequent and > intense. > > She was constantly tired and sometimes disoriented. She vomited almost > daily > > and lost weight. The light I saw in her eyes was dimming. > > > > I took to numerous neurologists and clinics, always with her > younger > > sisters, Missy and Lara, in tow. No one could tell me why she had > seizures. > > We'd tried all the medications and the ketogenic diet. Nothing made any > long > > term difference. Her doctors suggested surgery. > > > > When was 14 we saw a Missouri neurologist to see if a surgical > > procedure - a corpus callosotomy - would help. The surgery cuts the tissue > > connecting the brain's two hemispheres, possibly stopping the seizures. He > > described the invasive EEG test would need to identify from where > in > > the brain the seizures originated. They would shave her head, drill 32 > holes > > in her skull and implant electrical leads into her brain. She would " wear " > > the leads for six weeks. She could only take pain medicine for the first > two > > days. If she didn't have enough seizures on her own, they would induce > them > > electronically. It sounded like horror movie material to me. > > > > already had endured so much in her short life. I thought she could > > be dying. I just couldn't put her through this test and radical brain > > surgery. deserved some peace. I told the doctor to forget the EEG, > > snatched up on my hip, and we drove back home feeling that we had > > failed. > > > > got worse in the next months. I logged 32 straight days of > vomiting. > > She was having up to eight grand mal seizures a day. I had to reconsider > the > > corpus callosotomy. We were referred to the University of Pittsburgh > > Epilepsy Center, where , Missy, Lara and I went for a two week > > evaluation in May, 1990. The Center thought that the surgery might help > > but the invasive EEG would have to be done first. > > > > We left Pittsburgh after the lowest two weeks of our lives, knowing we had > > to return six weeks later for 's EEG. We sadly began to prepare > her. > > Every day I brushed her waist-length hair. Inch by day by inch, I cut her > > hair, hoping to minimize the shock to her - and to us - when she was > shaved > > bald for the EEG. I was resigned to the testing and surgery but hope still > > lived in my heart. By watching fight for life itself, I learned > how > > to battle and fight for those things she needed, and how not to give up > even > > when all seemed lost. > > > > 's lessons prepared me well. The day after we got back from > > Pittsburgh I was browsing the magazines at the pharmacy while her > > prescriptions were filled. The Saturday Evening Post caught my eye because > > of an article on Thailand, where my husband, Craig, had been stationed in > > the Air Force. I took it home. While leafing through it before giving it > to > > him I found an article describing symptoms of something called carnitine > > deficiency. The symptoms matched 's exactly! My heart raced and I > > talked to her doctor the next day. > > > > 's doctor was lukewarm at best. He knew of carnitine deficiency but > > had no idea how to test for it. He seemed very skeptical. He told me to > > accept her condition and stop grasping for miracles. Still, he said he'd > > find out what the test is and call me back. I waited a week with no word. > > The EEG was five weeks away. When I called to ask what he had learned his > > office told me he was gone for the week. My heart sank. I'd have only four > > weeks before the EEG if I waited for his return. > > > > In my desperation I thumbed through my address book looking for anyone who > > could tell me about the test. Sue, a nurse, rescued me. Sue had helped > > when, at 12 years old, she had been admitted to the hospital after > > experiencing Reyes Symptom features. Sue knew about the test - a simple > > blood test! - that Mott could do, but I needed a doctor's prescription. > > > > Well, because the neurologist was out of town I asked 's > pediatrician > > to order the test. She declined, saying she thought it would do no good > and > > she couldn't read the test even if it was done. I had to dig deep, and > time > > was ticking away. > > > > I was down to my last doctor - my gynecologist - the man who had delivered > > , and a sucker for my brownies. I baked the most priceless pan of > > brownies I'd ever made and took them, still hot, to his office. He > couldn't > > resist them and in the five minutes it took to sample them I told him I > > needed a prescription for 's test. He wrote it on the spot and > > and I were at Mott within hours so the blood could be drawn. Then > we > > went home to wait, and to pray the results would come before we had to go > > back to Pittsburgh for the invasive EEG. > > > > During this period hit her lowest point and was admitted to Mott. > > She was dehydrated, lethargic and was having what seemed to be " absence " > > seizures. Mott planned to stabilize her condition and then to send her > home. > > I was afraid that if she was discharged and came home she might die. I > > frantically educated myself on carnitine deficiencies and was referred to > > Sigma Tau, the pharmaceutical company who manufactures Carnitor®. Sigma > Tau > > representatives met with the Mott staff and started on the > > Carnitor®. In 48 hours her condition improved so dramatically we took her > > home. Still, we had no test results, and every day I trimmed another inch > > off of 's hair. > > > > The test results confirming 's carnitine deficiency came just three > > days before the EEG was scheduled. We also learned that her recent > " absence " > > seizures really were altered levels of consciousness caused by the > > deficiency rather than by seizures. We canceled the EEG and never had to > > return to Pittsburgh. > > > > The Carnitor® has changed 's life and probably saved her. The > > vomiting stopped and she long ago regained her lost weight. Her enthusiasm > > and energy are back. She still has tough months but her seizures have > > remained reduced both in number and intensity. And now she's in vocational > > education at our local community college. Her shoulder-length hair looks > > beautiful and her eyes still sparkle. Had it not been for magazine article > > and that simple blood test I have no idea what condition she'd be in. Now > > she's living the best life possible for her. > > > > 's story has been my life. Because of her on the job training of me > I > > have been able to share our experiences with other parents - and treating > > professionals - both formally and informally. I now work full time for the > > Michigan Protection and Advocacy Service, Inc. [MPAS] as the coordinator > of > > the ASSET Network Program [Advocates Supporting Solutions in Education > > Together]. MPAS belongs to the National Association of Protection and > > Advocacy Systems [NAPAS], and together the agencies advocate for the > rights > > and needs of people and families of people with disabilities. > > > > We all are students and teachers. has been an exceptional teacher > > and I have been a better student than I thought I could be. I share this > > story with you because supporting each other is vital to our struggle to > > meet our children's special needs. We have to believe in miracles because > > together our hope creates miracles. > > > > Copyright © 1998 Baccus Luker. All rights reserved. > > > > > > > > > > -------------------------------------------------------------------------- > -- > > -------------------------------------------------------------------- > > http://www.tell-us-your-story.com/_disc280/00000019.htm > > > > > > > > > ________________________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2001 Report Share Posted May 22, 2001 Dear Francesca et al. Last time I was Stateside I bought the revised 120 yr Diet and have enjoyed reading it immensely for its wealth of information and documentation. I am very slowly reducing calories while tinkering with the calculator to get even more nurtients (I am already normal/thin) but have a question about setpoint. In my teens and early 20's I smoked passionately. I think this kept me abnormally thin as I just couldn't gain weight no matter how much I ate. Pencil thin. I lived in Italy and astounded everyone with the amounts of Pasta I could indulge in.... and still be very thin. I kicked the cigarettes eventually and the weight just poured on. I left it on for one year while adjusting to my cigaretless and pudgier self and then took a lot of it off with the extremely ketogenic Scarsdale diet. Fine, it's stayed down ever since. I now think that my setpoint was absurdly low due to the nicotine. I certainly don't wish to return to that emaciated state, or even consider going 30% below that! I wonder if I should think of my set point as the cigaretless version of myself, or the smoky one. If the former, then I am already CRing for many years!! All comments most welcome and best wishes to all, MM _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2002 Report Share Posted September 7, 2002 Bev, Congratulations on your surgery date! The tome will fly by and before you know it you'll be on a plane heading for Monterey. Best of luck, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2002 Report Share Posted October 31, 2002 All the best , for your Scripps visit. I was scared of the desens process at first - mostly because I didn't know what was going to happen. At the clinic in Adelaide (Sth Aust) where I went they look for a reaction - a reaction, mild but still disturbing - is an essential aspect of the desens process. I didn't know this and was really worried when it happened last thing on the first day, especially when they didn't seem to make a fuss! It wasn't a huge reaction - some chest tightening, skin redness and itching and a bit of wheezing. My lung function deteriorated too. I had nebs for half and hour and was okay. Plus an antihistamine (which they gave me before starting the desens on both days.) The desens was done in intensive care - with patients from day surgery being wheeled in and revived and cared for all day! - so I felt like I was in good hands. Other desens patients were there - a bee sting guy and another samters. all the best, Beverley Author of " The Chimaera Conspiracy " , new Australian YA action-packed sci-fi mystery novel. http://chimaera.topcities.com available from http://greaterglider.com and " Getting Started with Homeschooling " and " Learning in the Absence of Education " available from http://members.ozemail.com.au/~beverleypaine/homeschool Unschool~Kidz! http://exeat.com/education/unschoolkidz Quote Link to comment Share on other sites More sharing options...
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