Guest guest Posted July 29, 2006 Report Share Posted July 29, 2006 In Mercola's newsletter today there was an article about cod liver oil being very effective. It even had a study with Lipitor versus cod liver oil. I have refused to start the statin drugs as well. From what I understand Armour is supposed to help the cholesterol come down. I'm still new to all this as well. Kim From: Texas_Thyroid_Groups [mailto:Texas_Thyroid_Groups ] On Behalf Of Judy PSent: Saturday, July 29, 2006 2:38 PMTo: Texas_Thyroid_Groups Subject: Re: new member Welcome Marti. I think you'll really like this group. I've learned so much in such a short period of time. I'm in Plano.I'm 53 years old and was diagnosed hypothyroid at the age of 18. I've been suffering on and off on synthetic thyroid replacement until just one week ago when I switched to Armour. I'm going back and forth a little while I work up to the correct dosage, but I must say that I already feel better than I have in the past 10 years. My cholesterol is high too. Do you think the Armour will help me with that? I've also started exercising again now that I have a little energy and that should help too. I won't take lipitor or any of those drugs so I've got to find a natural way to get the numbers down.Glad to have you here... Judy new memberJan tells me I am to introduce myself.I am 60, from Houston, been in menopause for ten years and was diagnosed hypothyroid in 1997. After a long time on Synthroid and Prempro, I am trying Armour and compounded hormones in an attempt to feel better.I have already found that my cholesterol (which was 327 when I started on Mevacor in 1987) has finally greatly improved on Armour. For the first time this last lab, it was well below 200, even though I cut my dose of Lipitor (which I've been on for nine years) from 80 to 40 mg.My energy is better, but I still have hot flashes, which were pretty well controlled with Prempro.I am looking for any info, suggestions and support that can help me.Marti __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2006 Report Share Posted July 29, 2006 I am on estrogen, progesterone, testosterone and cortisol. No DHEA - it was discussed and decided that I didn't need it. Marti > Are you also on testosterone and DHEA? > Â > 17-beta estradiol (Estrace) is bio-identical. (It is also more > expensive than the compounds that I get from WI.) > > Martha Lovejoy wrote: >> I have just upped my estrogen. You are right - he upped the >> progesterone first. When that did not work, we are starting a gradual >> increase in the estrogen to achieve the proper level. I am giving the >> place til the end of this year to make a difference. If I'm still >> symptomatic at that point, I think I'll go back to female drugs that >> are covered by insurance! I will never go back toi Synthroid, however. >> >> Marti >> >> >> >> > Which hormones is he prescribing for you and at what doses? He is >> > known for prescribing progesterone instead of estrogen, thinking >> that >> > it will convert to estrogen. Unfortunately, with hypos, many of >> those >> > conversions do not take place the way they are expected to. >> > >> > Martha Lovejoy wrote: Hotze Health and Wellness >> > Clinic - very expensive, however. >> >> >> >> Marti >> >> >> >> >> >> >> >> > Hi Marti!! Which doctor in Houston prescribed >> >> > compounded hormones and Armour? I am in Houston on the >> >> > west side. >> >> > >> >> > --- Martha Lovejoy wrote: >> >> > >> >> >> Jan tells me I am to introduce myself. >> >> >> >> >> >> I am 60, from Houston, been in menopause for ten >> >> >> years and was >> >> >> diagnosed hypothyroid in 1997. After a long time on >> >> >> Synthroid and >> >> >> Prempro, I am trying Armour and compounded hormones >> >> >> in an attempt to >> >> >> feel better. >> >> >> >> >> >> I have already found that my cholesterol (which was >> >> >> 327 when I started >> >> >> on Mevacor in 1987) has finally greatly improved on >> >> >> Armour. For the >> >> >> first time this last lab, it was well below 200, >> >> >> even though I cut my >> >> >> dose of Lipitor (which I've been on for nine years) >> >> >> from 80 to 40 mg. >> >> >> >> >> >> My energy is better, but I still have hot flashes, >> >> >> which were pretty >> >> >> well controlled with Prempro. >> >> >> >> >> >> I am looking for any info, suggestions and support >> >> >> that can help me. >> >> >> >> >> >> Marti __________________________________________________ >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2006 Report Share Posted July 30, 2006 Thanks for the information Kim, I'll definitely read more about the cod liver oil... Judy In Mercola's newsletter today there was an article about cod liver oil being very effective. It even had a study with Lipitor versus cod liver oil.I have refused to start the statin drugs as well. From what I understand Armour is supposed to help the cholesterol come down. I'm still new to all this as well.KimJudy Wrote:My cholesterol is high too. Do you think the Armour will help me with that? I've also started exercising again now that I have a little energy and that should help too. I won't take lipitor or any of those drugs so I've got to find a natural way to get the numbers down. Groups are talking. We´re listening. Check out the handy changes to Yahoo! Groups. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2006 Report Share Posted October 11, 2006 I do not recommend that thyroid patients see an endo at all unless they are hyper or thyca patients, and then only when absolutely necessary, as when they need RAI. If you will check out our list of Doctors, we have noted which ones will test and treat adrenal insufficiency. And all of them prescribe Armour or Cytomel. I don't bother to list docs who prescribe on synthetic T4. . . . . wrote: Thanks Judy, I'd be interested to hear how things go. I saw my 5th endo last week and she told me that she prescribes only Synthroid, no Armour. She said Armour is "unstable" and oftentimes "unsafe". Huh? She also said adrenals work, or they don't...there is no such thing as "adrenal fatigue". As the old saying goes, I'm so sick and tired of being sick and tired I'm ready to spit nails. And cry. Or both. I am going to order an adrenal saliva test and see what turns up. Anyway, let me know how things turn out :)Chris __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2007 Report Share Posted April 15, 2007 >Hi Tina, I was denied the first time as well. I have a lawyer this time, the hearing should be coming up soon, it's been 19 months since I filed. Will the judge be asking me questions at the hearing, if so what? Thanks. , > My Cfs lawyer told me that hardly anyone evers wins a Cfs case the first > time round so I just want to warn you it's a very frustrating process. I > did not win the first time round but I did win a year later, the 2nd > time round. Both times it took me about 6-8 weeks to receive a letter > and hear from them though. Good luck! > Tina > > cindy post wrote: > Hi : > I live in New York. I had to quit work a year ago this month. Do you know > when your disability hearing is coming up? I just had mine in March and am > still waiting on the letter with the decision from the ALJ. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2007 Report Share Posted May 8, 2007 It is not unusual for docs to miss secondary hypo due to testing TSH only. I do not think stopping meds will cause a goiter to shrink. That may cause it to grow. A suppressive dose of thyroid hormone gives you about a 50% chance of shrinking small nodules. You may actually be undermedicated and need an increase. If you would like to post your recent labs together with the reference ranges and the exact name of each test, we may be able to comment. Folks with secondary hypo often have other hormonal deficiencies. If you have not had the following tested, you may wish to do so: estrogens, cortisol, ACTH, DHEA, testosterone, progesterone, FSH. Have you been tested to determine whether your problem is at the pituitary level or if there is a defect in the hypothalamus? (central or tertiary hypothyroidism) The only Houston endo that we recommend is Vivian . Dawne Baumann wrote: Hi to everyone! My name is Dawne and I am new to this site. I was diagnosed with secondary hypothyroidism 4 years ago and have been taking armour thyroid. Before I was diagnosed I had seen an endo doc that tested a nodule that I had on my right lobe. the tests came out normal and he of course told me I was fine despite all the symptoms of hypo. he had told me I was hyper but not enough for meds and I needed to take rogaine for the tremendous hair loss I had. well I found another doc who then diagnosed me correctly. I have been doing well up until 2 weeks ago when overnight my right thyroid lobe enlarged to the size of a ping pong ball. Now I have the sensation of someone pressing against my throat around the adams apple area. I also periodically have the sensation of my thyroid throbbing and the sides of my neck feel like my pulse is racing on overdrive, even though the rest of my body does not feel that way. At this time my doc wants me to stop the armour and see if it shrinks. One week without and no relief. He says that I may have to see an endo to test for cancer or to order surgery. I am a little perplexed right now and not sure what to do. I am afraid to find an endo after what I went thru with the first one yet I am afraid to wait in case it is cancer. Any help or suggestions of Doctor? I live in the Houston area thanks, Dawne Expecting? Get great news right away with email Auto-Check.Try the Yahoo! Mail Beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2007 Report Share Posted May 8, 2007 I was also diagnosed with cortisol def and progesterone def. estrogen dominant. I am taking bio-identical hormones for those. these are the test results I was given over the phone: cholesteral-162 HDL- 48 (greater than 50) LDL - 102 (less than 99) TRIG -62 (greater than 149) FREE T4 - 2.55 (0.9-2.0) WBC,RBC-normal VIT D-29 (50-100) This was all I was told. I am expecting a call from the doc today and I am going to ask for TSH and free T3.Jan wrote: It is not unusual for docs to miss secondary hypo due to testing TSH only. I do not think stopping meds will cause a goiter to shrink. That may cause it to grow. A suppressive dose of thyroid hormone gives you about a 50% chance of shrinking small nodules. You may actually be undermedicated and need an increase. If you would like to post your recent labs together with the reference ranges and the exact name of each test, we may be able to comment. Folks with secondary hypo often have other hormonal deficiencies. If you have not had the following tested, you may wish to do so: estrogens, cortisol, ACTH, DHEA, testosterone, progesterone, FSH. Have you been tested to determine whether your problem is at the pituitary level or if there is a defect in the hypothalamus? (central or tertiary hypothyroidism) The only Houston endo that we recommend is Vivian . Dawne Baumann <wopmom1963> wrote: Hi to everyone! My name is Dawne and I am new to this site. I was diagnosed with secondary hypothyroidism 4 years ago and have been taking armour thyroid. Before I was diagnosed I had seen an endo doc that tested a nodule that I had on my right lobe. the tests came out normal and he of course told me I was fine despite all the symptoms of hypo. he had told me I was hyper but not enough for meds and I needed to take rogaine for the tremendous hair loss I had. well I found another doc who then diagnosed me correctly. I have been doing well up until 2 weeks ago when overnight my right thyroid lobe enlarged to the size of a ping pong ball. Now I have the sensation of someone pressing against my throat around the adams apple area. I also periodically have the sensation of my thyroid throbbing and the sides of my neck feel like my pulse is racing on overdrive, even though the rest of my body does not feel that way. At this time my doc wants me to stop the armour and see if it shrinks. One week without and no relief. He says that I may have to see an endo to test for cancer or to order surgery. I am a little perplexed right now and not sure what to do. I am afraid to find an endo after what I went thru with the first one yet I am afraid to wait in case it is cancer. Any help or suggestions of Doctor? I live in the Houston area thanks, Dawne Expecting? Get great news right away with email Auto-Check.Try the Yahoo! Mail Beta. The fish are biting. Get more visitors on your site using Yahoo! Search Marketing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2007 Report Share Posted May 8, 2007 Hi Dawne, Did the doctor say anything at all about your Vitamin D level? That is very low and vitamin D is really important as my understanding is that low levels can affect other hormones. Here's a good overview of the importance of vitamin D and discusses that low levels have been associated with thryoiditis: http://www.mercola.com/2002/feb/23/vitamin_d.htm It also mentions that if you take steroids that it can interfere with vitamin D metabolism, thus you might need to supplement and should ask your doctor about that. I have found that by taking cod liver oil (Carlson brand lemon is what I have found to be able to tolerate the best), I have been able to raise my vitamin D level to the normal range. Be Well, B > > I was also diagnosed with cortisol def and progesterone def. estrogen dominant. I am taking bio-identical hormones for those. these are the test results I was given over the phone: > > cholesteral-162 > HDL- 48 (greater than 50) > LDL - 102 (less than 99) > TRIG -62 (greater than 149) > FREE T4 - 2.55 (0.9-2.0) > WBC,RBC-normal > VIT D-29 (50-100) > > This was all I was told. I am expecting a call from the doc today and I am going to ask for TSH and free T3. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2007 Report Share Posted May 8, 2007 Your Free T4 is quite high. Did you take your Armour before the blood draw? If so, how long before? You do not need a TSH. TSH is irrelevant for secondary hypo folks. Dawne Baumann wrote: I was also diagnosed with cortisol def and progesterone def. estrogen dominant. I am taking bio-identical hormones for those. these are the test results I was given over the phone: cholesteral-162 HDL- 48 (greater than 50) LDL - 102 (less than 99) TRIG -62 (greater than 149) FREE T4 - 2.55 (0.9-2.0) WBC,RBC-normal VIT D-29 (50-100) This was all I was told. I am expecting a call from the doc today and I am going to ask for TSH and free T3.Jan wrote: It is not unusual for docs to miss secondary hypo due to testing TSH only. I do not think stopping meds will cause a goiter to shrink. That may cause it to grow. A suppressive dose of thyroid hormone gives you about a 50% chance of shrinking small nodules. You may actually be undermedicated and need an increase. If you would like to post your recent labs together with the reference ranges and the exact name of each test, we may be able to comment. Folks with secondary hypo often have other hormonal deficiencies. If you have not had the following tested, you may wish to do so: estrogens, cortisol, ACTH, DHEA, testosterone, progesterone, FSH. Have you been tested to determine whether your problem is at the pituitary level or if there is a defect in the hypothalamus? (central or tertiary hypothyroidism) The only Houston endo that we recommend is Vivian . Dawne Baumann <wopmom1963> wrote: Hi to everyone! My name is Dawne and I am new to this site. I was diagnosed with secondary hypothyroidism 4 years ago and have been taking armour thyroid. Before I was diagnosed I had seen an endo doc that tested a nodule that I had on my right lobe. the tests came out normal and he of course told me I was fine despite all the symptoms of hypo. he had told me I was hyper but not enough for meds and I needed to take rogaine for the tremendous hair loss I had. well I found another doc who then diagnosed me correctly. I have been doing well up until 2 weeks ago when overnight my right thyroid lobe enlarged to the size of a ping pong ball. Now I have the sensation of someone pressing against my throat around the adams apple area. I also periodically have the sensation of my thyroid throbbing and the sides of my neck feel like my pulse is racing on overdrive, even though the rest of my body does not feel that way. At this time my doc wants me to stop the armour and see if it shrinks. One week without and no relief. He says that I may have to see an endo to test for cancer or to order surgery. I am a little perplexed right now and not sure what to do. I am afraid to find an endo after what I went thru with the first one yet I am afraid to wait in case it is cancer. Any help or suggestions of Doctor? I live in the Houston area thanks, Dawne Ahhh...imagining that irresistible "new car" smell? Check out new cars at Yahoo! Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2007 Report Share Posted May 8, 2007 I was taking the armour 2grains in morning, but I had not taken the armour 3 days before the test. the doc said that I needed to only take 1 grain in am and 1 in pm from now on , then he said to stop for nowJan wrote: Your Free T4 is quite high. Did you take your Armour before the blood draw? If so, how long before? You do not need a TSH. TSH is irrelevant for secondary hypo folks. Dawne Baumann <wopmom1963> wrote: I was also diagnosed with cortisol def and progesterone def. estrogen dominant. I am taking bio-identical hormones for those. these are the test results I was given over the phone: cholesteral-162 HDL- 48 (greater than 50) LDL - 102 (less than 99) TRIG -62 (greater than 149) FREE T4 - 2.55 (0.9-2.0) WBC,RBC-normal VIT D-29 (50-100) This was all I was told. I am expecting a call from the doc today and I am going to ask for TSH and free T3.Jan <texasthyroid> wrote: It is not unusual for docs to miss secondary hypo due to testing TSH only. I do not think stopping meds will cause a goiter to shrink. That may cause it to grow. A suppressive dose of thyroid hormone gives you about a 50% chance of shrinking small nodules. You may actually be undermedicated and need an increase. If you would like to post your recent labs together with the reference ranges and the exact name of each test, we may be able to comment. Folks with secondary hypo often have other hormonal deficiencies. If you have not had the following tested, you may wish to do so: estrogens, cortisol, ACTH, DHEA, testosterone, progesterone, FSH. Have you been tested to determine whether your problem is at the pituitary level or if there is a defect in the hypothalamus? (central or tertiary hypothyroidism) The only Houston endo that we recommend is Vivian . Dawne Baumann <wopmom1963> wrote: Hi to everyone! My name is Dawne and I am new to this site. I was diagnosed with secondary hypothyroidism 4 years ago and have been taking armour thyroid. Before I was diagnosed I had seen an endo doc that tested a nodule that I had on my right lobe. the tests came out normal and he of course told me I was fine despite all the symptoms of hypo. he had told me I was hyper but not enough for meds and I needed to take rogaine for the tremendous hair loss I had. well I found another doc who then diagnosed me correctly. I have been doing well up until 2 weeks ago when overnight my right thyroid lobe enlarged to the size of a ping pong ball. Now I have the sensation of someone pressing against my throat around the adams apple area. I also periodically have the sensation of my thyroid throbbing and the sides of my neck feel like my pulse is racing on overdrive, even though the rest of my body does not feel that way. At this time my doc wants me to stop the armour and see if it shrinks. One week without and no relief. He says that I may have to see an endo to test for cancer or to order surgery. I am a little perplexed right now and not sure what to do. I am afraid to find an endo after what I went thru with the first one yet I am afraid to wait in case it is cancer. Any help or suggestions of Doctor? I live in the Houston area thanks, Dawne Ahhh...imagining that irresistible "new car" smell?Check out new cars at Yahoo! Autos. Ahhh...imagining that irresistible "new car" smell? Check out new cars at Yahoo! Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2007 Report Share Posted May 8, 2007 You may have an autonomous hot nodule, which spits out thyroid hormone from time to time, or you could be going hyper by some other mechanism. With your numbers, I would be more suspicious of that than of cancer, although having one does not exclude the other. How are you feeling without any thyroid meds? Dawne Baumann wrote: I was taking the armour 2grains in morning, but I had not taken the armour 3 days before the test. the doc said that I needed to only take 1 grain in am and 1 in pm from now on , then he said to stop for nowJan wrote: Your Free T4 is quite high. Did you take your Armour before the blood draw? If so, how long before? You do not need a TSH. TSH is irrelevant for secondary hypo folks. Dawne Baumann <wopmom1963> wrote: I was also diagnosed with cortisol def and progesterone def. estrogen dominant. I am taking bio-identical hormones for those. these are the test results I was given over the phone: cholesteral-162 HDL- 48 (greater than 50) LDL - 102 (less than 99) TRIG -62 (greater than 149) FREE T4 - 2.55 (0.9-2.0) WBC,RBC-normal VIT D-29 (50-100) This was all I was told. I am expecting a call from the doc today and I am going to ask for TSH and free T3.Jan <texasthyroid> wrote: It is not unusual for docs to miss secondary hypo due to testing TSH only. I do not think stopping meds will cause a goiter to shrink. That may cause it to grow. A suppressive dose of thyroid hormone gives you about a 50% chance of shrinking small nodules. You may actually be undermedicated and need an increase. If you would like to post your recent labs together with the reference ranges and the exact name of each test, we may be able to comment. Folks with secondary hypo often have other hormonal deficiencies. If you have not had the following tested, you may wish to do so: estrogens, cortisol, ACTH, DHEA, testosterone, progesterone, FSH. Have you been tested to determine whether your problem is at the pituitary level or if there is a defect in the hypothalamus? (central or tertiary hypothyroidism) The only Houston endo that we recommend is Vivian . Dawne Baumann <wopmom1963> wrote: Hi to everyone! My name is Dawne and I am new to this site. I was diagnosed with secondary hypothyroidism 4 years ago and have been taking armour thyroid. Before I was diagnosed I had seen an endo doc that tested a nodule that I had on my right lobe. the tests came out normal and he of course told me I was fine despite all the symptoms of hypo. he had told me I was hyper but not enough for meds and I needed to take rogaine for the tremendous hair loss I had. well I found another doc who then diagnosed me correctly. I have been doing well up until 2 weeks ago when overnight my right thyroid lobe enlarged to the size of a ping pong ball. Now I have the sensation of someone pressing against my throat around the adams apple area. I also periodically have the sensation of my thyroid throbbing and the sides of my neck feel like my pulse is racing on overdrive, even though the rest of my body does not feel that way. At this time my doc wants me to stop the armour and see if it shrinks. One week without and no relief. He says that I may have to see an endo to test for cancer or to order surgery. I am a little perplexed right now and not sure what to do. I am afraid to find an endo after what I went thru with the first one yet I am afraid to wait in case it is cancer. Any help or suggestions of Doctor? I live in the Houston area thanks, Dawne Ahhh...imagining that irresistible "new car" smell? Check out new cars at Yahoo! Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2007 Report Share Posted May 16, 2007 I did not have either of those tests. My blood was drawn at 2 pm- that is the time they handle existing patients. I am surprised when I looked at my labs that there were no tests to check the adrenals or progesterone when I am on the bioidentical hormones for them. I finally got him to write an order for a thyroid ultrasound. I have that tomorrow am. I can't seem to get him to order any more tests. It took me 2 weeks to get this order. I do have an appt. with the only endo recommended by this site, but my appt is in late July. This thing is still growing and now has moved. It is not only on my right side but also directly in the middle of my throat. It is so uncomfortable with this thing bulgeing out of my neck. I am at odds as what to do. I can't get the tests without an order. I feel like just going to my GP and seeing if she will order other tests for me. wrote: Have you had an 8 a.m. blood draw for the adrenals or an ACTH stimulation test? Without one of these, there is no determining this secondary hypo. As mentioned, a pituitary tumor is expected, sometimes, and a picture of the head would hopefully determine this cause of it. To me, this is very important, to determine whether this condition exists because, if you don't have autoimmune thyroid disease, there are other ways to approach this, not the same thing. Re: new member I saw Dr. sheridan with Hotze. He took blood and I guess looking at my symptoms deteremined the diagnosis. I also have adrenal fatigue and estrogen dominant and am taking bio-identical hormones for it. I fasted and they drew blood in the pm 2 weeks ago and got these latest lab results. I don't know what my TSH was the first time for diagnosis it was 4 years ago. Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2007 Report Share Posted May 16, 2007 Do go to your GP. The fact that the goiter is uncomfortable is a red flag. Ask for a referral to a surgeon asap. Dawne Baumann wrote: I did not have either of those tests. My blood was drawn at 2 pm- that is the time they handle existing patients. I am surprised when I looked at my labs that there were no tests to check the adrenals or progesterone when I am on the bioidentical hormones for them. I finally got him to write an order for a thyroid ultrasound. I have that tomorrow am. I can't seem to get him to order any more tests. It took me 2 weeks to get this order. I do have an appt. with the only endo recommended by this site, but my appt is in late July. This thing is still growing and now has moved. It is not only on my right side but also directly in the middle of my throat. It is so uncomfortable with this thing bulgeing out of my neck. I am at odds as what to do. I can't get the tests without an order. I feel like just going to my GP and seeing if she will order other tests for me. wrote: Have you had an 8 a.m. blood draw for the adrenals or an ACTH stimulation test? Without one of these, there is no determining this secondary hypo. As mentioned, a pituitary tumor is expected, sometimes, and a picture of the head would hopefully determine this cause of it. To me, this is very important, to determine whether this condition exists because, if you don't have autoimmune thyroid disease, there are other ways to approach this, not the same thing. Re: new member I saw Dr. sheridan with Hotze. He took blood and I guess looking at my symptoms deteremined the diagnosis. I also have adrenal fatigue and estrogen dominant and am taking bio-identical hormones for it. I fasted and they drew blood in the pm 2 weeks ago and got these latest lab results. I don't know what my TSH was the first time for diagnosis it was 4 years ago. Be a PS3 game guru.Get your game face on with the latest PS3 news and previews at Yahoo! Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2007 Report Share Posted August 29, 2007 said: " I have for as long as I can remember, desired to always help others and expect nothing in return. I still am that person but I am now unable to give my physical energy (which was what it took most times) to another in need. For me it's sad because that is where my joy of life was but at the same time I think, Why doesn't anyone else feel that way? Where are they when I need a visit or a warm dish brought over because I cannot cook most of the time etc. Nowhere. " Yes, exactly for me too. I know we didn't help out of desire for reciprocation, but it would be nice, now that we are the ones in need. Aylwin xox Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2007 Report Share Posted August 30, 2007 Welcome Lee! Take care of you. Big gentle huggles. Love ya, Di Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2009 Report Share Posted July 28, 2009 Hello all, My 2 1/2 year old grandson was re-diagnosed with bilateral diffuse PMG at the Microcephaly convention last month. His dx for the past 2 years has been Lissencephaly, so it was disheartening to get a new dx with a less optimistic outcome probability than what he had before. He is a cheerful, hard working little guy, so we know he will develop more than Dr. Dobyns predicted. His advice was to " keep him comfortable " . is about 6 months developmentally, and continues to learn new skills. He has PT, OT, Speech and a vision therapist, so he gets a lot of stimulation. While we were in California, he absolutely loved the beach and the feel of the sand on his feet! His speech therapist has been working with feeding and stimulating his tongue to work correctly. He was tongue tied for the first 6 months of his life, so we are still working on exercises in hopes that he can eat more solid foods than purees. He enjoys cause and effect toys, and has learned to hold himself up with one arm while pushing buttons on the toys with the other hand. He also gets where he wants to go by rolling, and a military crawl. We have hopes that he will walk, and be potty trained one day, even though those skills are a long way off. The odds may be against him, but he has a lot of motivation. Judy, grammy to born 2/7/07 and has a very infectious laugh and irrestible smile. Quote Link to comment Share on other sites More sharing options...
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