Guest guest Posted March 25, 2000 Report Share Posted March 25, 2000 Cheryl, I completely understand both aspects of your problem. I, too, was addicted to sodas so badly that it got to the point where I was drinking a 24 pack a day! That is the absolute truth, my family was going crazy, trying to get me off of them. I went over 3 months without a single glass of water. I, now, am completely soda free. The only way I found that I could do it was to slowly, wean myself off of them and drink lots and lots of water. If you're drinking caffeinated sodas, then this will be the hardest part of the addiction to break. Be very patient with yourself and don't try to go cold turkey, unless you have nothing else to do for a few days. Please, let us know of your progress, that way we can be of support to you. The problem with your legs could easily be a vitamin deficiency. You may need to increase your calcium intake, via a supplement. This has really made remarkable differences for people who suffer from these types of problems. Also, when you do your life lift work out, do your warm up breaths and rub your feet at the same time. I found this more helpful than anything. At night, before you go to bed, do about 10 breaths, rubbing any painful or sore spots on your feet and legs. This should aid in your ability to sleep. I hope these tips will help and if you are still having problems in these areas, please post again, and we will try and work it out further! Sincerely, Tami In a message dated 3/25/00 4:33:39 AM Pacific Standard Time, jcbl@... writes: << From: jcbl@... Do you know of anything i could do to make my legs not hurt so bad at night, i am unable to sleep. I have a house cleaning business and i am on my feet all day. Also how do i get away from drinking so many cokes. I seem to be addicted, i really need help. Cheryl >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2000 Report Share Posted March 25, 2000 Hi Cheryl, There are a few things that I have found that are very helpful for legs or back that hurt. First is bromelain which is a derivative of pineapple, helps shrink the joints so is helpful if this is what is causing your problem. Bromelain helps in digestion and can also be good for weight loss. If you are taking it for aches, it is best taken on an empty stomach. The next would be MSM which is getting a lot of press in the health care community because of it's many benefits, one of these benefits is said to be for those suffering from pain, particularly caused by arthritis. If you are getting leg cramping then potassium is vital. It can stop cramping for some in minutes. In years past the Gatorade was created by a man who worked with the Florida Gator football team. Because his players were getting so many leg cramps because of water loss during exercise, he decided to create a drink that would have potassium for the leg cramps. Potassium also can give an energy boost, so the very popular sports drink was created. Be careful not to overdo potassium, too much can be as bad as not enough. It is best to get potassium from natural sources if possible. Foods high in potassium are baked potatoes, bananas and nuts. The last product is one I have personally used for years to relieve intense backaches caused from a car accident I was in. I have found that it works for any aches and pains I have because it was an herbal formula created originally for those with extreme arthritis. I feel is has been almost miraculous for me. I can usually take one or two doses along with the bromelain and the pain disappears completely. I have carried it in my salon for years because I have so many clients who are as hooked on it as I am. It is only carried in special salons so it is difficult to find, so I decided that I am going to have it put on the website soon along with the other supplements I take. I feel this will make it easier for everyone to just go to one place rather than having to run around trying to find the right brands. If you want to try the muscle and joint formula just e-mail me since it is not on the web site yet. My beautiful web designer is an angel, I don't know how she keeps up with me. As soon as we have the time we will post all of these things to the web site. Meanwhile you are welcome to come to me directly for help. I hope you feel better soon. There is nothing worse than not being able to sleep because of pain. I would be the first to jump in to want to help you here. I know only too well how it feels to suffer. But the good news is I also know how to get rid of the pain. I have remained pain free for years now. Take care, Rashelle Be sure to check out all of the great specials available on my web sites Save $30 on the Large Body Wrap package until Aril 30th.You are welcome to visit us at http://www.angelmagic.com or http://www.lifelift.com These are Rashelle's personal web sites, any others belong to distributors.join our discussion group at LifeLift-subscribeonelist a couple of questions From: jcbl@... Do you know of anything i could do to make my legs not hurt so bad at night, i am unable to sleep. I have a house cleaning business and i am on my feet all day.Also how do i get away from drinking so many cokes. I seem to be addicted, i really need help. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2000 Report Share Posted March 25, 2000 Hi Cheryl, I have had these same difficulties with leg pain in the past, and have found the cause to be potassium deficiencies. You might try a potassium supplement, or even adding a banana a day to your diet, relief is almost immediate! pamela a couple of questions >From: jcbl@... > >Do you know of anything i could do to make my legs not >hurt so bad at night, i am unable to sleep. I have a >house cleaning business and i am on my feet all day. >Also how do i get away from drinking so many cokes. >I seem to be addicted, i really need help. Cheryl > >------------------------------------------------------------------------ >You have a voice mail message waiting for you at iHello.com: >1/2377/1/_/_/_/953987590/ >------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2000 Report Share Posted March 26, 2000 Don't forget to have magnesium in your calcium supplement, it will help the calcium be better assimilated. W from OZ Re: a couple of questions From: Emailtamihere@... Cheryl,I completely understand both aspects of your problem. I, too, was addicted to sodas so badly that it got to the point where I was drinking a 24 pack a day! That is the absolute truth, my family was going crazy, trying to get me off of them. I went over 3 months without a single glass of water. I, now, am completely soda free. The only way I found that I could do it was to slowly, wean myself off of them and drink lots and lots of water. If you're drinking caffeinated sodas, then this will be the hardest part of the addiction to break. Be very patient with yourself and don't try to go cold turkey, unless you have nothing else to do for a few days. Please, let us know of your progress, that way we can be of support to you. The problem with your legs could easily be a vitamin deficiency. You may need to increase your calcium intake, via a supplement. This has really made remarkable differences for people who suffer from these types of problems. Also, when you do your life lift work out, do your warm up breaths and rub your feet at the same time. I found this more helpful than anything. At night, before you go to bed, do about 10 breaths, rubbing any painful or sore spots on your feet and legs. This should aid in your ability to sleep.I hope these tips will help and if you are still having problems in these areas, please post again, and we will try and work it out further!Sincerely,TamiIn a message dated 3/25/00 4:33:39 AM Pacific Standard Time, jcbl@... writes:<< From: jcbl@...Do you know of anything i could do to make my legs not hurt so bad at night, i am unable to sleep. I have a house cleaning business and i am on my feet all day.Also how do i get away from drinking so many cokes. I seem to be addicted, i really need help. Cheryl >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2003 Report Share Posted February 7, 2003 a couple of questions > One ~ The last 2 times I've done cardio (running on my treadmil) I've > had extremely bad stomach cramps. It's on my right side and it's > really bad. I did better this morning but it was really hard. Is > there anything I can do to stop this? I didn't have these before. Are you sure it's stomach cramps. Sounds like it could be a muscle cramp from lactic acid build up? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2003 Report Share Posted February 7, 2003 It does feel like a muscle cramp. What can I do if it is lactic acid? Thanks, Virginia > > a couple of questions > > > > One ~ The last 2 times I've done cardio (running on my treadmil) I've > > had extremely bad stomach cramps. It's on my right side and it's > > really bad. I did better this morning but it was really hard. Is > > there anything I can do to stop this? I didn't have these before. > > Are you sure it's stomach cramps. Sounds like it could be a muscle cramp > from lactic acid build up? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2003 Report Share Posted February 12, 2003 Sorry took so long to respond-breathe deep and let up a liitle on the intensity. Your muscle needs oxygen to function. a couple of questions > > > > > > > One ~ The last 2 times I've done cardio (running on my treadmil) > I've > > > had extremely bad stomach cramps. It's on my right side and it's > > > really bad. I did better this morning but it was really hard. Is > > > there anything I can do to stop this? I didn't have these before. > > > > Are you sure it's stomach cramps. Sounds like it could be a muscle > cramp > > from lactic acid build up? > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2003 Report Share Posted July 13, 2003 You will undoubtedly receive many suggestions but I feel it important for you to know about a simple program that is used by many of us and has been extremely successful for those fortunate enough to find it. The program was developed by Dr. Joanna Budwig and used for many years in her clinic in Germany. Many terminal patients came to her and were healed, as well as many in this country. All the information you need is available on the Web. There is a forum devoted to this program with daily input from people who are using it and questions from newcomers. The major treatment consists of eating 1/2 cup of low-fat cottage cheese blended with flaxseed oil daily and a simple, pure diet. The Forum is at: flaxseedoil2@ If you are interested, the best introduction to this is at: http://www.beckwithfamily.com/Flax1.html I use this protocol myself. Dorothy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2003 Report Share Posted July 13, 2003 Has he tried using a zapper. http://www.mythnlynx.com/zapper.html http://www.worldwithoutparasites.com/ a couple of questions I am looking for some information on what might be the best course of treatment for the following: male in his late 40's has a cancer, it has attached itself to all his organs and not in the organs, it doesn't respond to chemo or radiation (I thought this was great news) because of that the man is doing more alternative treatments, and those are pretty limited, any feedback would be great. He looks like he is pregnant and its all filled with mucus. around the same time this man discovered the symptoms of cancer, his son was diagnosed with diabetes., I can't imagine there isn't some kind of emotional connection or field connection and would love to hear any help you think would be good to pass along. take care thanks Ken, I have seen the light and need a couple of days !! Antonia -- Antonia Breakthrough Coaching http://www.Body-Dynamics.com 1-920-868-9599 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2003 Report Share Posted July 14, 2003 RE: Antonia's question about person with cancer. not a doctor here so research everything: ozone in all forms, gerson diet (do web search) Dr. Rath's suggestions re: l lysine, vit c. etc. (do web search) Move the lymph, move the lymph, move the lymph. A few minutes of rebounding can triple your white cell count which kills cancer. This effect lasts less than an hour, so a few minutes of rebounding every hour has worked for some people. Look for Albert E. book, The Cancer Answer. Beet root juice (search archives) mgn-3 or beta glucan or transfer factor or ip6 (search archives) homozon (search archives) laugh alot. (Norman Cousins) Blessings from Not a Doctor Donna a couple of questions I am looking for some information on what might be the best course of treatment for the following: male in his late 40's has a cancer, it has attached itself to all his organs and not in the organs, it doesn't respond to chemo or radiation (I thought this was great news) because of that the man is doing more alternative treatments, and those are pretty limited, any feedback would be great. He looks like he is pregnant and its all filled with mucus. around the same time this man discovered the symptoms of cancer, his son was diagnosed with diabetes., I can't imagine there isn't some kind of emotional connection or field connection and would love to hear any help you think would be good to pass along. take care thanks Ken, I have seen the light and need a couple of days !! Antonia -- Antonia Breakthrough Coaching http://www.Body-Dynamics.com 1-920-868-9599 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2003 Report Share Posted July 14, 2003 Hi Donna, WOW< thank you for a wealth of information, I am excited to pass it along! really great suggestions from not a doctor, but a DONNA! Antonia -- Antonia Breakthrough Coaching http://www.Body-Dynamics.com 1-920-868-9599 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 Good morning angee, First, congrats on taking the challenge and welcome to the group. A cup of water is 8oz and it does sound like you get enough water, but like you mentioned with the coffee... Second, exercise for the quads without the bench. Boy do I have a good one for you. My trainer liked to torture me with these. They may not sound like much, but if you are doing them correctly, you will feel them the next day. Here goes: I call them the skier squat because they remind me of the position a downhill racer takes. stand with your feet about shoulder width apart, maybe a little wider. Get into a squat position and hold it. I started with 30 second intervals and started adding more and more time as I got stronger. If you are doing them right, even though they sound simple, you will feel a burn. the workout comes from your muscles trying to keep you stablized in that position (think bear squatting in the woods, lol). Now, if you need to start by holding a wall for a little stabilization at first, that is ok. Just make sure you aren't cheating and taking weight off your legs. I needed help to start because I am not that graceful sometimes. Also, a word of caution. This should be a somewhat deep (low) squat so if you have questionable knees, be careful. however, I do have bad knees and once I gained more strenght, I was able to do them fine Hope this helps. If you have more questions or need more clarification,let me know. Happy Squatting, Shauntel > Good morning, > I started my first ever challenge yesterday, and I of course came back with more > questions and a couple of comments. > > 1. A comment really, I had thought my weights may have been too light because > the highest weight I have is 8lbs. I ended up holding the 8 and 2lb weights > together for some things (and even the 8 and 3lb weights as well). I was > pleasantly surprised to find that my back (which I didn't double up on) and > shoulders and even biceps were somewhat sore this morning. > > 2. On the water situation. I am an avid water drinker, I have been for years. I > drink anywhere from 3 to 9 liters of water a day. How much does he mean by a > cup of water. 8oz? 10? 12? I'm not worried that I might not be getting enough, > but I do have a cup of coffee every morning, and I may need to add water. > > 3. Here's what I had yesterday, please let me know if I'm eating correctly: > > Fiber-One Cereal/Skim Milk > 2 Morningstar Breakfast Links > > Cantaloupe > Cottage Cheese > > Santa Fe Chicken Soup (from the eating for life cookbook) > > Zone Bar > > Turkey Meatloaf (also from eating for life) > Mashed Potatoes (also from eating for life) > Asparagus > > 2 slices of low-cal/carb whole wheat bread with 1tbs natural peanut butter. > > 4. And lastly, I have my legs session scheduled for tomorrow, but other than > squats there don't appear to be any other Quadriceps exercises that don't > require a weight bench (which I don't have at home). Is there something else I > could do for this? > > My thanks to everyone here for the help and support I've received already. This > is a great group, I'm so lucky to have stumbled upon it. Ooh, one last thing, I > saw the recipe for Protein Pancakes, are they a complete meal? i.e. > protein/carbs. Thanks again! > > anjee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 2) A cup is 8 oz. Remember that it is possible to drink too much water and throw your electrolytes dangerously out of whack. 9 liters might be a little excessive, but I guess as long as you're not slurring your speech and having seizures that's an okey dokey amount. :-) http://www.jnj.com/news/jnj_news/20031030_105713.htm 3) Meal 1 is a little low on protein. Maybe throw in an extra breakfast link. Technically, the cereal and the milk are considered two carbs but it's ok if you watch the portions. Meals 2, 3, 4 and 5 sound fine. There's no protein in your last meal. The bread is a carb, peanut butter is a fat. Maybe switch to one piece of toast and have a protein shake or some cottage cheese or something with it. Also, try to emphasize a little more fresh, crunchy, leafy, watery foods and less bread and cereal and bars. Like if meal one was the veggie links and a pear, meal 4 was turkey slices and grapes, and if meal 6 was cottage cheese and an apple. Here's the Lean out or Swell Up sample menus: http://www.skwigg.com/wow/id55.html 4) Here's a huge list of dumbbell and barbell exercises for the quads: http://www.exrx.net/Lists/ExList/ThighWt.html#anchor172012 A couple of questions Good morning, I started my first ever challenge yesterday, and I of course came back with more questions and a couple of comments. 1. A comment really, I had thought my weights may have been too light because the highest weight I have is 8lbs. I ended up holding the 8 and 2lb weights together for some things (and even the 8 and 3lb weights as well). I was pleasantly surprised to find that my back (which I didn't double up on) and shoulders and even biceps were somewhat sore this morning. 2. On the water situation. I am an avid water drinker, I have been for years. I drink anywhere from 3 to 9 liters of water a day. How much does he mean by a cup of water. 8oz? 10? 12? I'm not worried that I might not be getting enough, but I do have a cup of coffee every morning, and I may need to add water. 3. Here's what I had yesterday, please let me know if I'm eating correctly: Fiber-One Cereal/Skim Milk 2 Morningstar Breakfast Links Cantaloupe Cottage Cheese Santa Fe Chicken Soup (from the eating for life cookbook) Zone Bar Turkey Meatloaf (also from eating for life) Mashed Potatoes (also from eating for life) Asparagus 2 slices of low-cal/carb whole wheat bread with 1tbs natural peanut butter. 4. And lastly, I have my legs session scheduled for tomorrow, but other than squats there don't appear to be any other Quadriceps exercises that don't require a weight bench (which I don't have at home). Is there something else I could do for this? My thanks to everyone here for the help and support I've received already. This is a great group, I'm so lucky to have stumbled upon it. Ooh, one last thing, I saw the recipe for Protein Pancakes, are they a complete meal? i.e. protein/carbs. Thanks again! anjee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2004 Report Share Posted December 31, 2004 Peggy, I think I can point to number 4 on your list. I had a Heller Myotomy in June 2002 and got pregnant in Dec 2002. By the end of my 1st trimester (about March 2003) I had tremendous trouble swallowing and all through the rest of the pregnancy. (Happy healthy 16 month old was fine though). After that I have noticed that I was having worse bouts of swallowing difficulty at the beginning of my period and on or about ovulation as well. I have had a dilation about 2 weeks ago and am monitoring any minor difficulties but obviously haven’t had enough cycles to see if the cyclic thing is still (or really was) a factor. I am currently limiting my raw vegetable and salad intake to determine if those things are giving me more trouble than others since I have no peristalsis. The 2 days I’ve done this so far have been very good. Of course I have a more advanced case of achalasia. I will certainly let you know if I find that my cycle seems to affect my days in the next few months. Pre-dilation I was having 2-4 hours of problem times where I’d be in the bathroom hoping to not throw up and occasionally actually succeeding. I don’t mean to scare you but just to let you know how much greater my life is since the dilation. The Heller got me just so far but apparently my system needed more. And I got it. My GI called me yesterday to check up on me post-dilation and I’ve set an appointment in a month to see how things are going and see if I will need to make any other diet adjustments to help keep my life as stable as possible with my achalasia. I always seem to rattle on when I reply in here. I guess that’s part of the fun in here is that someone is always listening. And with all that I’ve learned in here from others who have been comfortable enough to rattle on before me I hope my verbose response helps you or someone else. Good luck Peggy. Achalasia is a tough disease to have but with good doctors, proper treatment and support of family, friends, us it doesn’t have to completely control your life. Beverly in southern CA A couple of questions Happy New Year to all of you! I joined this group a couple days before Christmas after learning that I probably have achalasia in early stages. I have been exploring the site and it is a great support and source of information. Thanks to all of you for sharing your experiences. It feels very scarey to be thinking about how this disorder will affect my life in the longer term. I have had swallowing difficulties for about a year and a half -- my symptoms got really bad between Nov 03 and May 04 (lost 40 pounds and felt like I was starving to death) and have been more stable and manageable since going on a calcium channel blocker. I am proceeding to work on getting referred to a specialty center in California and probably face another manometry (the first doctor didn't get the essential reading on the LES pressure). My barium swallow test shows my esophagus is only slightly enlarged at this point. A couple of questions I didn't see the answer to or reference to that I am wondering about: 1. Does anyone else have a history of Irritable Bowel Syndrome (a motility disorder of a different sort) and how does this disorder (especially flare ups) affect problems with the esophagus? 2. How has this disorder -- with nighttime regurg and coughing -- impacted the quality of sleep and how does that impact your life? Any suggestions for managing energy? 3. Did anyone else's onset start with what appeared to be the WORST heartburn ever -- such that it felt like my whole esophagus was injured? That happened to me several times -- very scarey and then swallowing difficulties slowly started developing over the next six months. 4. Do the women who have this disorder notice symptoms seem to get worse just before their menstrual periods and then calm down when flow starts (sorry, gentlemen!) Thanks in advance for any feedback. Peggy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2004 Report Share Posted December 31, 2004 Hi - welcome to the group ! I have irritable bowel syndrome but it is related to a sensitivity to wheat so if I avoid wheat in any form I am OK. I have not seen a correlation to my achalasia. Yes, reflux of acid and contents of the oesophagus does impact on my sleep and I sometimes feel I am going to drown and cough my lungs out ! I take a protein pump inhibitor (Lanzor}(similar to Nexium) and it definitely does help. I also have to sleep with my head elevated. This you can do in several ways and how much elevation you need will depend on your self. Try putting a couple of bricks or blocks of wood under the head of the bed to about 6 " or more. You can also lift your mattress up by putting a bolster, pillows or telephone directories under the head of the mattress or using a wedge pillow. A bed with a head that can lift is also useful but an expensive option. When things are bad some folk sleep in a recliner chair. Some others have reported an increase of symptom during a period. Hope the New Year is a happy swallowing one for you all ! Hugs, Joan A couple of questions > > > Happy New Year to all of you! > > I joined this group a couple days before Christmas after learning that I probably have > achalasia in early stages. I have been exploring the site and it is a great support and > source of information. Thanks to all of you for sharing your experiences. It feels very > scarey to be thinking about how this disorder will affect my life in the longer term. > > I have had swallowing difficulties for about a year and a half -- my symptoms got really > bad between Nov 03 and May 04 (lost 40 pounds and felt like I was starving to death) and > have been more stable and manageable since going on a calcium channel blocker. I am > proceeding to work on getting referred to a specialty center in California and probably > face another manometry (the first doctor didn't get the essential reading on the LES > pressure). My barium swallow test shows my esophagus is only slightly enlarged at this > point. > > A couple of questions I didn't see the answer to or reference to that I am wondering about: > > 1. Does anyone else have a history of Irritable Bowel Syndrome (a motility disorder of a > different sort) and how does this disorder (especially flare ups) affect problems with the > esophagus? > > 2. How has this disorder -- with nighttime regurg and coughing -- impacted the quality > of sleep and how does that impact your life? Any suggestions for managing energy? > > 3. Did anyone else's onset start with what appeared to be the WORST heartburn ever -- > such that it felt like my whole esophagus was injured? That happened to me several times > -- very scarey and then swallowing difficulties slowly started developing over the next six > months. > > 4. Do the women who have this disorder notice symptoms seem to get worse just before > their menstrual periods and then calm down when flow starts (sorry, gentlemen!) > > Thanks in advance for any feedback. > > Peggy > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 marie wrote: The below 5 or below 1 is really the same results. It's too low to be counted is all they are saying. Katy's fluctuated between 8 and 14 and we couldn't ever tell a difference between the clinical picture. So, I don't think it means he's significantly worse -- I think it just means that the laboratory may have better equipment and can test lower levels now. Does anyone know if getting IVIG the day before could > have lowered this? No. It would not have lowered the IgA -- it might slighly increase it, but probably not enough to measure. >Can the IVIG cause this or do What can > cause Vita. A & D deficiency? As far as I know there are no indications that IVIG would cause any sort of vitamin deficiency. It sounds to me like an absorption problem which is common with IgA deficiency. They are probably going to check all his endocrine numbers to see if they can pin point the malabsorption cause, but may refer him to Gastro. I'm so sorry Blake's sick again. Hope the antibiotic gets him on the mend! In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2006 Report Share Posted June 24, 2006 WBC's USUALLY elevate and when they do they can be mildly elevated or extremely elevated. Depends on each child. I know this is not too helpful. Same with SED rate and CRP.which with the values ALL usually return to normal immediately after the episode is over. There is also a shift in the WBC differential so you will see lows and highs in that lab result. NIH does LOTS of testing. from labs to see Immunoglobulin levels and Complement studies which will reflect the child's immune system and see if the child may have disorders such as HIDS etc. They also do genetic studies. Usually initial studies will be for FMF, TRAPS and HIDS. They may do or do at a later date studies for CIAS1 (NOMID/Muckle Wells). They also look at more unusual antibodies etc. They look at basic stuff too. CBC with Diff. chemistry, checking liver functions etc. Hope that helps. NIH also does a very thorough clinical history. since they are SO well informed and since they have identified many of the mutations for the PF disorders they are able to identify more possibilities than other medical professionals. There is a comfort level with the specialists you see.. Because of there knowledge and concern. Fran A Bulone Mom to ph 7 yrs old Waxhaw, NC Owner & Moderator Group <> a couple of questions When a child is having a episode, are their WBC counts high, or normal? If they are high, approximately how high? And secondly, what kind of testing do they do at NIH? Thanks for your time! Mom to ~21 months with recurrent fevers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2006 Report Share Posted June 25, 2006 Fran, Thank you for the info. My daughter,, only had bloodwork done once and that was her first high fever. Her WBC was over 17000. Approximately how many episodes does a child have before it starts to raise flags? has had 4 so far. The first 2 were 35 days apart, and the next 2 were 21 days apart each. The fever always lasts 5 days (except for this last one which was only 3) with temps ranging from 104-105.5. I have to rotate tylenol and motrin every 3 hours to keep it somewhat under control. Each time (I have taken her in for 3 out of 4 of the fevers) she is diagnosed with viral tonsilitis. If she continues her pattern, she will have a fever a week from Monday. I will check her mouth for sores. But, from what I have read, and please tell me if this is not accurate, the mouth ulcers don't have to be there or they can be on the tonsils (which is where she has had them in the past.) I briefly gave up taking her in for the fever because I didn't want to expose her to more germs at the Dr's office. But, since it seems that they are going to continue, I guess it is best to take her in each time so that they have records of her fevers? I went back and charted her health for the last 6 months and every time she got croup (4 times) or fever (4 times), it started on a Monday, except for 2 which were on Sundays. Do you think the croup is just coincidence? Thank you for your input, Mom to ~21 months with recurrent fevers Fran Bulone <fbulone@...> wrote: WBC's USUALLY elevate and when they do they can be mildly elevated or extremely elevated. Depends on each child. I know this is not too helpful. Same with SED rate and CRP.which with the values ALL usually return to normal immediately after the episode is over. There is also a shift in the WBC differential so you will see lows and highs in that lab result. NIH does LOTS of testing. from labs to see Immunoglobulin levels and Complement studies which will reflect the child's immune system and see if the child may have disorders such as HIDS etc. They also do genetic studies. Usually initial studies will be for FMF, TRAPS and HIDS. They may do or do at a later date studies for CIAS1 (NOMID/Muckle Wells). They also look at more unusual antibodies etc. They look at basic stuff too. CBC with Diff. chemistry, checking liver functions etc. Hope that helps. NIH also does a very thorough clinical history. since they are SO well informed and since they have identified many of the mutations for the PF disorders they are able to identify more possibilities than other medical professionals. There is a comfort level with the specialists you see.. Because of there knowledge and concern. Fran A Bulone Mom to ph 7 yrs old Waxhaw, NC Owner & Moderator Group <> a couple of questions When a child is having a episode, are their WBC counts high, or normal? If they are high, approximately how high? And secondly, what kind of testing do they do at NIH? Thanks for your time! Mom to ~21 months with recurrent fevers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2006 Report Share Posted June 25, 2006 Keeping a log showing onset, duration, temp height, how you control the temps and ALL the other symptoms that develop now and add the news ones as they develop is critical. After 4 episodes our doctors in Florida realized something was wrong. I would take her in because you are in the process of getting a diagnosis and fevers like this can be diagnosed differently depending on the clinical picture. Also obtaining labs is important to see the abnormalities. You need an open minded pediatrician who you have a good relationship with.. <smile> Getting a CBC with Diff will show elevated WBCs usually and the differential usually shows a shift in the breakdown. (Some high some low) Make sure you check the neutrophils as cyclic neutropenia and are very very similar in symptoms.. But CN is much more dangerous. A sed rate and QUANTITATIVE CRP should be done. These are inflammatory indicators and will rise during a febrile event and return to normal in between episodes. I doctor who is trying to make an accurate diagnosis for a Periodic Fever Disorder will do these during an episode and usually check all the values about a week AFTER the fevers are gone to see if they have all returned to normal. It is a good diagnostic tool.. Testing for cyclic neutropenia is usually done and this is very invasive as the child needs to be stuck a couple times a week for up to 6 weeks. Once the doctor sees a pattern they usually send you to a specialist. (could be a Pediatric Immunologist, Rheumatologist, Infectious Disease doc. who is familiar with Periodic Fever Disorders). they order Immunology studies, look for strange virus', complement studies and some other tests.. At this point genetic studies SHOULD be ordered.. If I had a child who was NOT diagnosed specifically. I would focus on getting the doctor to see the pattern and bring the child in frequently. Once he/she realizes there is SOMETHING going on with these fevers I would contact the NIH if in the US or Canada. and request a consult. It takes time so I would continue seeing and scheduling appointments with a specialist but I would get my child in the study. They know SO SO much compared to other doctors.. As for croup, it is one of the symptoms not mentioned with nor with many of the other disorders. However my son had croup at least 6 times with his episodes. and he later developed a cough with the fevers. Now ph had a CIAS1 gene isolated which causes NOMID and Muckle Wells so his diagnosis is different at this point. But we have heard of this and many of our surveys we received back stated croup or cold symptoms with the fevers. God Bless Fran Fran A Bulone Mom to ph 7 yrs old Waxhaw, NC Owner & Moderator Group <> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2008 Report Share Posted May 28, 2008 I don't remember much about the constipation but Ben has always had a very high pain tolerance. He is now 15 and still has a high pain tolerance. You don't know something is wrong until it's something major. I remember when Ben got ear tubes the Dr. couldn't believe that he didn't keep me up constantly because he had so much fluid. Any other baby would have been have crying inconsolebly. M. A couple of questions Hi all. I lurk a lot but not as much as I'd like. I don't have much time w/ my 8 1/2 month old (Luke, DS). I wanted to ask about a couple of things. Luke has issues with constipation or infrequent bowel movements. We're going to start with some mineral oil in his food today to see if that can help. He also spits up A LOT so we may start him on some medicine to help with that if the mineral oil doesn't do the trick. Did anyone else have this issue w/ their infants? He's been seen by the Dr a couple of times. They did an xray yesterday to make sure his intestines are ok. Everything was fine. Also, have you noticed that your babies with DS have a high pain tolerance? I keep waiting for him to show signs of being in pain and he just never does. I'm hearing from a couple of friends that it may be a common trait in babies w/ DS. The poor guy went two weeks without a bowel movement and seemed as happy as can be. I'm of course not complaining about having a happy baby. He's a joy... but I just think it's good to be aware of so that I don't wait so long for him to show signs of pain/discomfort. Thanks in advance, Amy -mom to Luke 8.5 months DS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2008 Report Share Posted May 28, 2008 I'd say that has a higher than normal pain tolerance... only once after many ear surgeries did she complain and get Tylenol/codine... otherwise, she had regualr tylenol and was happy. After her T & A surgery, the next day (on only Tylenol) she ate a crunchy rolled taco (taquito) and swallowed just fine (I sat there repeating over and over to myself... the doctor said " let her eat whatever sounds good to her " ) She tears up a bit when getting shots, but gets over it in a heartbeat. A few years ago, she had a UTI that she had apparently had for awhile, based on how bad it was, but didn't complain at all until the day we ended up in the ER with abdominal pain. I worry a bit that she will not tell me important symptoms, but in general, it's a good thing! Now, don't ask about getting her feelings hurt... she's a tween girl, and unfortunately, tolerance and tween girl don't go together, LOL. Her little sister can't even look at her sometimes without driving nuts! , mom to (12), (10 DS), and Sammy (8) CINDY MATTERN wrote: > I don't remember much about the constipation but Ben has always had a > very high pain tolerance. He is now 15 and still has a high pain > tolerance. You don't know something is wrong until it's something > major. I remember when Ben got ear tubes the Dr. couldn't believe that > he didn't keep me up constantly because he had so much fluid. Any > other baby would have been have crying inconsolebly. > M. > A couple of questions > > Hi all. I lurk a lot but not as much as I'd like. I don't have much > time w/ my 8 1/2 month old (Luke, DS). I wanted to ask about a couple > of things. Luke has issues with constipation or infrequent bowel > movements. We're going to start with some mineral oil in his food > today to see if that can help. He also spits up A LOT so we may start > him on some medicine to help with that if the mineral oil doesn't do > the trick. Did anyone else have this issue w/ their infants? He's > been seen by the Dr a couple of times. They did an xray yesterday to > make sure his intestines are ok. Everything was fine. > > Also, have you noticed that your babies with DS have a high pain > tolerance? I keep waiting for him to show signs of being in pain and > he just never does. I'm hearing from a couple of friends that it may > be a common trait in babies w/ DS. The poor guy went two weeks > without a bowel movement and seemed as happy as can be. I'm of course > not complaining about having a happy baby. He's a joy... but I just > think it's good to be aware of so that I don't wait so long for him > to show signs of pain/discomfort. > > Thanks in advance, > Amy -mom to Luke 8.5 months DS > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2008 Report Share Posted May 28, 2008 When Maverick (17, ds) was little he had problems with spitting up. They gave him meds for reflux and it made him sleepy so we didn't give it to him. We lived with the spitting up. We did notice, and it has been mentioned by others, that the red colored drinks.. juices... stuff like that tended to be a for sure that he was going to spit up. He pain threshold is VERY high. Once, when younger, he burnt his palm and didn't even seem to know it. He frequently had ear infections and unless I noticed the extra drainage from his eyes or ears we didn't know it. Logan (six, ds) spits up easily. But not all that he eats. It's very weird. He will eat a tub of yogurt, a PBJ, and then 1/2 of a banana and the only thing that he spits up is the banana and some clear fluid. We have stopped giving him bananas. He supposedly needs to be on a wheat free/ gluten free/ dairy free diet, but we have found no medical information supporting this and slowly added each food to his diet with no issues. It also seems to me that his pain threshold is high... he never appears to be hurt and there are times that he falls or bumps that I would think that he would react to. (46, ds), well, no reflux or spitting up, but the PAIN threshold amazes us! We have taken him to the Dr. monthly since Jan and each time he has an ear infection! Yet, there is no fever and are no signs! Also, he just had two teeth extracted and who knows HOW long they have been infected.. we have no dental records on that. So, yes.. HIS pain threshold is very high. Now my 7 yr old drama queen and the 5 yr old BABY of the family.. they have NO tolerance for pain AT ALL! Thank goodness that a bandaide can fix most! My 7 yr old is in charge of telling me when we need new bandaides.. and whether we need GIRL (hannah montana, barbie,) or BOY (cars, dinosaurs) bandaides. LOL. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2008 Report Share Posted May 28, 2008 Hi Amy, How are you? Chase was a little similar in the constipation area. We began adding Miralax to his diet which seemed to help. He was spitting up a bit more than our older son ever did so we switched his formula from Enfamil Lipil to Enfamil AR (I think it was the AR-it specifically states for babies who spit up). Had neither of those not worked we would've discussed other options with his pediatrician, but they seemed to work for Chase. For the pain tolerance. I have read on another board that most of the kids with Ds do have a higher tolerance to pain, though some moms said that their child cries when a feather hits them (that was a very small population in the discussion thread, though). Chase does seem to have a higher tolerance to pain than is normal, and it makes it difficult sometimes, but it is something I have learned to be more aware of. We had tile in our livingroom up until recently, and he would always roll off his brother while playing or lose his balance while sitting and hit his head. He wouldn't cry though he would have a pretty good sized red mark where he made contact. It was happening so frequently I brought it up to the ped. She said it was " normal " and not be worried. I kiddingly asked if I should get him a helmet so people at the market would not call child services on me for all of the bumps on his head. lol!  At one point Chase was also diagnosed with a sinus infection. If you have had one you know how much they hurt. Well, Chase never gave any indication he was the least bit uncomfortable and I said that to the ped. She said that babies (Ds and non Ds) don't experience ailments the same as they would as an older child/adult, in terms of pain and discomfort. I don't remember her reason why, but I know I left the office feeling comfortable with what I was told or I would've made an appointment with another ped there in the office. lol! So yes (in my opinion and experience), my son with Ds does show signs of having a high pain tolerance. We tried to help his poop along with Miralax and we switched formula to help with his spitting up. I don't really have any experience with reflux, so I am sure you will get better advice and what to do about that from the more experienced and wiser parents on this board. I hope you are able to get Luke back on track.  Sincerely, Wife to Ted, mom to n (5 yrs) and Chase (18 mos), Ds & IS (SF 6.28.07)   A couple of questions Hi all. I lurk a lot but not as much as I'd like. I don't have much time w/ my 8 1/2 month old (Luke, DS). I wanted to ask about a couple of things. Luke has issues with constipation or infrequent bowel movements. We're going to start with some mineral oil in his food today to see if that can help. He also spits up A LOT so we may start him on some medicine to help with that if the mineral oil doesn't do the trick. Did anyone else have this issue w/ their infants? He's been seen by the Dr a couple of times. They did an xray yesterday to make sure his intestines are ok. Everything was fine. Also, have you noticed that your babies with DS have a high pain tolerance? I keep waiting for him to show signs of being in pain and he just never does. I'm hearing from a couple of friends that it may be a common trait in babies w/ DS. The poor guy went two weeks without a bowel movement and seemed as happy as can be. I'm of course not complaining about having a happy baby. He's a joy... but I just think it's good to be aware of so that I don't wait so long for him to show signs of pain/discomfort. Thanks in advance, Amy -mom to Luke 8.5 months DS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2008 Report Share Posted May 28, 2008 Nic never had a constipation problem but he spit up like crazy as an infant! I used receiving blankets as spit up rags and went through many a day. Nic has always had a high tolerance for pain. Another thing I noticed, it seems he doesn't react to bad smelling things. He may play around and say " Ewww, stinky feet " but when riding by a freshly fertilized farm he doesn't react to the foul smell. Di Judge not, and ye shall not be judged. Condemn not, and ye shall not be condemned. Forgive, and ye shall be forgiven. Luke 6:37 A couple of questions > Hi all. I lurk a lot but not as much as I'd like. I don't have much > time w/ my 8 1/2 month old (Luke, DS). I wanted to ask about a couple > of things. Luke has issues with constipation or infrequent bowel > movements. We're going to start with some mineral oil in his food > today to see if that can help. He also spits up A LOT so we may start > him on some medicine to help with that if the mineral oil doesn't do > the trick. Did anyone else have this issue w/ their infants? He's > been seen by the Dr a couple of times. They did an xray yesterday to > make sure his intestines are ok. Everything was fine. > > Also, have you noticed that your babies with DS have a high pain > tolerance? I keep waiting for him to show signs of being in pain and > he just never does. I'm hearing from a couple of friends that it may > be a common trait in babies w/ DS. The poor guy went two weeks > without a bowel movement and seemed as happy as can be. I'm of course > not complaining about having a happy baby. He's a joy... but I just > think it's good to be aware of so that I don't wait so long for him > to show signs of pain/discomfort. > > Thanks in advance, > Amy -mom to Luke 8.5 months DS > > > ------------------------------------ > > Click reply to all for messages to go to the list. Just hit reply for > messages to go to the sender of the message. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2008 Report Share Posted May 28, 2008 Ok – I don’t always post but read most every day. I just had to reply to this one. I don’t believe that my (14ds) smells anything either. Recently we had a problem with a skunk who decided he wanted to share our home – or at least make it smell like his. I think we got sprayed 4 times and it would last for days! I cannot tell you how horrible it was. Got so bad I didn’t want to come home. didn’t even notice. Didn’t wake him up at 2:30 am each time, didn’t seem to phase him in the least. I don’t think the child can smell either. Dawn in New Jersey with my wonderful hubby , 14ds, 27 and his wife Terri and my beautiful granddaughter who is going to be one next week all living here ) Lord help me LOL Re: A couple of questions Nic never had a constipation problem but he spit up like crazy as an infant! I used receiving blankets as spit up rags and went through many a day. Nic has always had a high tolerance for pain. Another thing I noticed, it seems he doesn't react to bad smelling things. He may play around and say " Ewww, stinky feet " but when riding by a freshly fertilized farm he doesn't react to the foul smell. Di Judge not, and ye shall not be judged. Condemn not, and ye shall not be condemned. Forgive, and ye shall be forgiven. Luke 6:37 A couple of questions > Hi all. I lurk a lot but not as much as I'd like. I don't have much > time w/ my 8 1/2 month old (Luke, DS). I wanted to ask about a couple > of things. Luke has issues with constipation or infrequent bowel > movements. We're going to start with some mineral oil in his food > today to see if that can help. He also spits up A LOT so we may start > him on some medicine to help with that if the mineral oil doesn't do > the trick. Did anyone else have this issue w/ their infants? He's > been seen by the Dr a couple of times. They did an xray yesterday to > make sure his intestines are ok. Everything was fine. > > Also, have you noticed that your babies with DS have a high pain > tolerance? I keep waiting for him to show signs of being in pain and > he just never does. I'm hearing from a couple of friends that it may > be a common trait in babies w/ DS. The poor guy went two weeks > without a bowel movement and seemed as happy as can be. I'm of course > not complaining about having a happy baby. He's a joy... but I just > think it's good to be aware of so that I don't wait so long for him > to show signs of pain/discomfort. > > Thanks in advance, > Amy -mom to Luke 8.5 months DS > > > --------------------------------------- > > Click reply to all for messages to go to the list. Just hit reply for > messages to go to the sender of the message. Quote Link to comment Share on other sites More sharing options...
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