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Everything posted by crowebirds

  1. It sounds like she does have it. She fits the model being an A student, a competitive athlete, in addition to having a mother with the condition. She has signs of Tachycardia, MCAD and susceptibility to infections. Yes, being susceptible to infections is a big part of it. Being that you are already a patient of Dr. Grubbs, I would consult with him next. Too few doctors have an understanding of POTS. My daughter has POTS as part of her DYS and has a lot of infections (only of a different variety). I agree with Anna that she may have had a dormant condition that woke up after the flu. Hope you find the answers that you need quickly. Robin
  2. I have a niece that is just the same. She has severe anger and emotional issues. I have recently noticed that it revolves around her blood sugar being low. If we can get her to sit down and eat a full meal, she improves significantly. My daughter is not as severe as she is, but her issues also are affected by low blood sugar. She has to eat some fruit two hours in between each meal to remain stable. She can also be set off -- on a much milder note-- when she is around a lot of activity, loud noise, or watching a show on TV that displays a lot of anger / aggression. This has come under better control since adding her back to an antihistamine that previously was removed from the market. My prayers are with you and him for relief and understanding. Robin
  3. Hi KC, I am sorry that I can't answer the question about the best type of stockings. My daughter just started wearing them. We started with the medium strength, 18-33mmhg (not sure if that is right). She has been so happy since she started wearing them, they are helping a little bit, not a lot. She can stand up a couple more minutes without pain. We will move her up to a stronger strength here soon to see if it helps any more. She is using the full stockings, with panty. They do help to keep her from getting cold so quickly as well. Robin
  4. Hi flower, {{{Hugs}}} I hate that anyone has to go through this condition. There is one silver lining. Your daughter is blessed that she has a mother that will understand what she is going through and will be able to help her to adjust to her environment and her symptoms. Yes, children can have this condition, my daughter does. TLC has had this condition since she was born. Blue legs was the first sign. Every time someone held her upright her legs would turn very blue. It wasn't until she was eight that we realized something else was going on, unfortunately it was Urticaria (hives)that became the squeaky wheal. It wasn't until this last year, at 12 years old, that we found out she had pots. Unfortunately, at your daughters age, her high pulse rate is quite normal for a child her age. This is one thing that kept my daughter from being diagnosed early on. I would talk to your doctor and see if (s)/he has any recommendations for a physician for your daughter or a facility for testing. Robin
  5. Julie - I really don't know what to say, I just want you to know that I have been praying for you all afternoon, for peace and wisdom. If it helps at all, my husband has atrial fibrillation (for three years now). We do not know what is causing his, but I saw in some research that it can be a result of diastolic dysfunction. Even though he has a bad case, he is well managed and has very few spells that come up during the year. He has been able to work with no change in his duties. Don't let fear and the mullygrubs take you down. Many blessings to you, Robin
  6. I would not stop taking the meds unless specifically asked to prior to your visit. Also, I would ask all the doctors about MCAD. The one doctor that you expect to research it may be the very one to blow it off as unimportant. Sorry, but my experience has left me a little jaded. All three of the medications you have taken for MCAD act on Acetylcholine receptors. I believe it slows the production of Acetylcholine. Not everyone with MCAD/Urticaria responds to the same meds. My daughter responds well to Singulair, Brompheniramine and Hydroxizine. She uses only the first two during the summer and all three during the winter, the colder it gets, the worse it is for her. The last two act on Acetylcholine, just in a different way. I am trying to figure out in what way as it may help find a definitive diagnosis. I will have to get involved with Chemistry again. Not only do the meds help her urticaria, but also some of her DYS symptoms. Go figure, Acetylcholine stimulates issues with both MCAD and DYS, no wonder so many DYS folks also have MCAD issues. Now we need a researcher to help figure this one out. I am so glad you have found some relief. Robin
  7. Unfortunately, dysautonomia is not a logical condition. This is in part what makes it so difficult to diagnose. For my daughter, her heart rate increases upon standing, which is due to the blood pooling. Having the blood pool away from your upper extremities is in her case what makes her weak and her heart working so hard what makes her tired. She does get an increased heart rate from sitting, but not nearly as bad as standing. She has chosen to use not only her arms to self propel, but for the majority of the time, she uses her legs as well. This is a good concept which helps to prevent blood clots from the lack of use. If she is every in a situation where she needs assistance (going up a steep grade), she does not hesitate to ask. Weakness can come from a variety of sources with DYS, but this is her situation.
  8. I think of each of you this morning, saying a prayer for relief, for internal peace. May you know the blessings of Christmas. Psalm 34:19 Tells us, "Many are the afflictions of the righteous: but the LORD delivereth us from them all." Hope and deliverance is for each one of us. Blessings and Merry Christmas! Robin
  9. I truly hate that you had to travel so far and end up being frustrated by one of the doctors on the trip. This is my greatest fear. Our current doctor has been a classic example of one who has his good days and his bad days. He is the best in our state, but on one of his bad days, it is just best to have not been there. We live in Alabama. All our travel would be by car. We just would not be able to make a second trip. Do you have any tips or suggestions of what we would need to do while waiting on the waiting list for our appointment? Is there anything that would benefit us to bring for the appointments that they do not tell you about? Thank you and Merry Christmas! Robin
  10. This is a terrible condition in that nothing is "normal." It is one thing to help an adult to go through it, but quite another for a child to have to go through it. Even though my daughter had a lot of problems as a baby, we did not realize she had DYS until just this year. We found out in 2006 that she another condition called Cold Urticaria. Without her medication she would break out in hives (wheels and welts) 24/7. She has been on three antihistamines for the Urticaria. Her symptoms and response to antihistamines did not fit the criteria for Cold Urticaria and she would developed new symptoms every time we went to the doctor in Birmingham, AL (every 4-6 months). We took her off one of her meds for 30 days and she digressed very quickly. After being reassured by the doctor that the med was safe, we put her back on it and she returned to good health. Over a year ago another one of her meds was removed from the market. She went from May until October of this year without it. Once again, she digressed very quickly. She has not fully recovered despite being able to return to the same med just in the adult version. In part, it was because of this that we were able to figure out that she had DYS. We have only known for 4 months now, and have only just found a doctor willing to work with her. In researching the condition and symptoms we were able to realize how all her symptoms as a baby were part of the DYS. Our daughter is completely intolerant to cold temps. We too are held hostage to our home in attempts to keep her warm. TLC, my daughter, goes to school, goes to church and goes home. She has problems even at school and church. I spend a lot of time picking her up from school when she gets too cold and taking her home. Church is more of a problem with over stimulation which triggers migraines and anxiety. She has been put on an inhaler and Propranolol for the DYS (heart & migraine) symptoms and we are waiting for her next appt, in April, where she will have a bunch of tests read. Well our daughter doesn't do too well getting hot either. We have a fine line of control it keeping her at a constant temp. Though her antihistamines are not for the DYS, they have definitely helped. The meds she takes help to suppress Acetylcholine which can be a problem in both urticaria and DYS. I find it curious that your husband and daughter were diagnosed within three years of each other. Is this something new for your husband, or did he have it for a long time without a diagnosis? I believe that I read you came from Nashville, TN to Florida in another post. Did you move this year? Was it following the floods? If it was, I would have your daughter tested for parasites if it has not already been done. Our daughter had contracted shigella (sp?) as a preschooler in daycare. The doctor still checks her for parasites. Our daughter is now 12 years old, she has two separate rare conditions. We have had to accept a "new normal" for our lives. We have adjusted. She is still adjusting as she wants to be able to do everything in middle school. We remind her that she is normal like everyone, just a different normal. You are a great wife and great mother. You are doing a great job. Your are always welcome to contact me to vent and/or talk. My prayers are with you. Many blessings and Merry Christmas! Robin
  11. Although my daughter had Dysautonomia since she was born, we didn't find out about it until much later. Based on her age, I am not sure what you mean by "homeschooling" and being behind. But I can encourage you to not "school" her every day. At the age of four we were working with our daughter on learning of ABC's and counting. She was very smart and learned very quickly; however, we worked with her in small spurts. If she was in the mood and focused we would spend time working with her, but if she was not in the mood or totally distracted, we didn't. You can also use opportunities that arise for training. For example, when our daughter was in time out, we would have her count to five. When she was done counting, she was able to get out of the time out chair. As she progressed in skill and age, we would increase the numbers 1-10, counting by 10's, by 5's, by 2's, then counting to 100, you get the picture. When we went on long trips, we would sing songs that involved numbers and abc's. Keep it fun, on her timing, and don't expect too much, too soon. If you live in the US, have her tested by the school by the time she is five to see if she needs an IEP or a 504 plan. The sooner she gets assistance (if needed) the better off it will be for her in school. Blessings and Merry Christmas! Robin
  12. It could be DYS, but it could related to another condition as well. My daughter has not passed out, but she has always had problems with beig cold just started having severe migraines in September. She also gains weight though she doesn't/can't eat much. I have heard from some ladies on this forum where they can have DYS symptoms while sitting and/or laying down, not just standing. My daughter has just been diagnosed so we are still in the midst of tests being done. Before going to your doctor, start keeping a log of her temperature, bp and heart rate. Start when she first wakes up in the morning, before moving about, after the first one, have her stand and retake the tests at 1,3 and 5 minute intervals. You can do the same thing with her by having her sit down and repeating the intervals. Do it again in the evening. The temp only has to be taken twice, once in the a.m. and once in the p.m. This will be a good start in determining if DYS is involved. If the results are not indicative of DYS, ask to have her checked for a venous malformation in the neck. Attending college is very tough on the body especially when there may be a dormant condition. Hopefully she can get plenty of rest during Christmas break. My prayers are with you and your daughter. Robin
  13. She drinks 48oz of fluid every day. It spans through out the day because she has a problem with not being able to consume too much at a given time. Now that it is winter, she breaks out in severe hives nearly every day. Her skin retains a lot of fluid when she has these reactions. She usually will have one or two cups of sweet tea (a southern thing), milk for lunch and gatorade the rest of the time. We are trying to increase her consumption, but it is difficult with early satiety.
  14. My daughter just completed two 24-hour urine tests for Heavy Metals and Porphyrins. The amount collected was quite telling. She only had about 8 - 10 ounces of output for the entire day on both days. Low blood volume has a connection to dehydration. She breaks out everyday in addition to her DYS and this leads to Hypovolemia.
  15. My daughters is between 100 - 130. When she stands up it has been clocked as high as the 190's, but has been too fast to count. It is like a galloping horse.
  16. I contacted Vandy for my daughter and found out that the specialty clinic does not see anyone under 18 years old.
  17. Flower- I know exactly what you are going through. My daughter is currently 12 y/o. She has had the blue legs every since she was born. We kind of lost track of it, thinking it was nothing, for a few years. When she was 8, she began have symptoms of another disorder, however, the blue legs returned, or at least we started realizing that they were there again. Every since TLC could stand and walk she complained of pain in her legs when she stood up. She too was very athletic (top of height chart and bottom of weight chart), surprisingly the pain did not affect her as much when she danced. She started dancing at 2 1/2 and because of the symptoms you describe she had to stop nine years later, mid year. During this time we found that she had a condition that caused her to break out and go into shock when she was too cold. Finding out the source of this condition became our main priority. The research I did was for GP's doing their own research. It told them to let the parents know that there was no known cause and nothing that could be done. Go home, avoid the cold, and move on. This one statement infuriated me. In other bits of research I found that some causes could be identified. I was determined to have every known cause tested and either rule them out or know the cause and begin treatment. Well, everything has been tested and to date, no known cause. But, our research led us to find out that she had Dysautonomia. Most of my daughter's Autonomic Nervous System is affected. We told the doctors for years about her pain when standing. We told them about her high heart rate and low blood pressure. It wasn't until this last year when we reminded him for the umpteenth time that she did not sweat that he finally decided that she had two conditions, not just one. It was confirmed earlier this month and we are waiting on further testing. After he said that it could be Dysautonomia he sent us home with no further testing. I researched the name of the condition and decided to do my own "poor man's" Tilt Table Test. I was completly floored when her heart rate went through the roof upon standing. Her blood pressure is always low, but it did have fluctuations. We had to do her heart rate manually because it was too weak for the machines to record it. We were also able to connect the blue legs with her standing up and when she got cold, but they were not there for the same reason. When standing, she would have blood pooling. Her heart could not keep the blood flowing up hill efficiently. This increased her heart rate. We also found that she had problems with breathing. She was put on inhalers which helped. We found out that she does not have asthma, but she did have problems with her lungs not being able to oxygenate the blood fast enough because of the blood pooling. The inhaler helped improve the body's ability to get oxygen direct to where it was needed. Every time she went to physical education class, especially outside, she would get bad headaches and would complain about the leg pain. We were able to get an excuse from her doctor to keep her out of PE classes. She was smart so they put her into the lower grades to help tutor other kids during those time. Despite this, we still had a lot of problems from the PE teacher and other teachers harassing her about being lazy and not wanting to do anything. She is now in 7th grade, in a wheelchair, which she loves, and has a school full of teachers that are supportive. The wheelchair, that it embarrasses her a little bit, she is much happier because she does not have to deal with the leg pain and she is able to be involved with her class mates in various activities. Her PE class allows her to do her own exercises and stretching. She gets to work out on the floor and for short periods of time. It was a very difficult decision to accept our daughter as being handicapped and needing a wheelchair, but we now wish that we would have done it years ago. She would not have missed out on so much. Go ahead and get her the appointments she needs. Don't let anyone convince you that your daughter has nothing wrong with her. When one doctor can't give you the answers you need, move on and find another one. Her daughter has what is labeled as a rare condition, but I am finding that is not so rare. Educate the administrators of her school, the teachers, and help her learn to communicate with others her age that don't understand what she is going through. Ask the school to help your daughter in what ever way she needs it. We have programs in the US where the schools have to help our children. I am assuming that you are from Australia. There are others on the board here from Australia who may be able to help you in that department. My prayers are with you and your daughter as you take this journey in life.
  18. I agree fully with Julie, Mack's mom. We have not had the opportunity as of yet to go to Mayo or do any of the TTT/Sweat testing. However, my 12 y/o daughter does have the blood pooling, pain in legs, tachycardia when standing. TLC goes in the opposite direction where she does not sweat and she does not get the chills despite her body trying to warm up from being very cold. Despite this difference it is all DYS related. This is our journey in life and prayers are with you and your son.
  19. My 12 year old was told to drink no less than 100 ounces per day.
  20. Thank you, Julie. Your response was just what I was looking for. I am glad you listed what to eat, it seems as though TLC has gravitated towards the "right" things. Although she does not know why, her brain is guiding her to what she needs and away from what she does not need food wise. p.s. I tried to send you a pm a couple of days ago and it bounced back. I would really like to send you a link to my facebook with pictures of TLC's reactions especially of the acrocyanosis for comparative sake. Would you mind PMing me your private email address? Thanks and many blessings!
  21. I know that in a lot of cases, more so with food, that TLC has an issue with textures, temps and tastes of what she doesn't want to consume. However, her problem is more of an issue that she gets full after only a few bites, or a couple sips of liquid. Because she can consume so little, she has to eat more often during the day to keep from getting low blood sugar. So often she will eat a meal and within just a few minutes later will complain of being hungry again. We do have to be careful with her getting too much in that she will vomit everything if she takes in too much too quickly. Does anyone have issues like something like this? Do you have any tips on improving the whole situation? Thanks, Robin
  22. TLC has acrocyanosis instead of Raynauds. They are very similar in their mechanisms. My husband's mother had a lot of issues with blood clots. My husband and and his mother and grandmother all had heart issues that involve the autonomic functions. She has so much trouble with her heart rate being at varying speeds and pressures. I have been concerned with the potential of her having clots because of all these factors. Quite frequently when she deals with the acrocyanosis, her feet and/or hands (including arms/legs) get tingly (like having a foot waking up from being asleep, painful and ice cold. She has lost all sensation during these episodes. I usually massage her legs to help improve blood flow and get her feet warm again. Quite frequently she will mention that her feet are cold all the time. We keep our home at 76 degrees all the time for her and to keep her warm because of the mast cell issues. It is very hot in our house, but she is freezing (seriously icy) cold. Two cardiologist have refused to see her because her symptoms were too "complicated." Her heart and blood pressure are all over the place. Her resting heart rate is usually 100 - 120. When she stands, her heart rate has increased so much that you cannot even count the beats, but have been recorded as high as 194 bpm. She normally has a low blood pressure, but as her heart rate goes up, her blood pressure goes down. It is very difficult to do a manual pulse because the pressure is so weak and she has beats on top of beats. I have asked intake nurses to take her pulse and pressure both sitting and standing. They tell me that it is normal, but I see them struggle maintaining a pulse when she stands. Her Immunologist put her on Propranolol for her heart, which gives her a little more energy, so I know it helps, but she still struggles with those numbers. Seeing your story means that I have to be just that much more careful in watching her.
  23. Oh, my goodness, this scares me. You are describing a part of TLC's condition. I am praying for you. Keep us updated.
  24. Kexia - Visit this website-- www.iaccheart.com/dr_davis.aspx --for Dr. Davis. He treats new patients and he is close to you. I don't know about the insurance issue, but I can tell you that he treats a woman with one of the worst cases of Dysautonomia and he is one who cares. Blessings, Robin
  25. My daughter, TLC, has had early satiety all her life. Even as a baby, she could not consume very much. She has gotten better now as an adolescent, but still can't consume too much. Consumption includes both food and drink. If she gets full, she will throw up. She had Pyloric Stenosis as a baby. So I don't know if this is still the same issue. Her doctor wants her to drink between 13 and 20 cups (8oz each) of water a day. She is 12 years old, still a small body. So far, the most we can get down her is 7 cups per day. Does anyone have experience with this and/or have any ideas how to improve her consumption without making her sick? Thanks, Robin
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