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  1. Also we just learned that EDS is Excessive Daytime Sleepiness in the Narcolepsy world. So make sure what EDS you are referring to when speaking with Dr's.
  2. Thanks I haven't been diagnosed with it "yet" though my Sleep neurologist says I maybe in the future. The one thing that my body didn't do was go into REM during my day time sleep study which is the only thing that is keeping me from the diagnosis. For now it's just hypersomnia. Anyway I'm sorry your son is going through all of this. Just an FYI you might want to ask about if Nuvigil is something your son could take. It's the second version of Provigil. I had to try the Provigil first and it didn't do much for me at all. Well It might have if my insurance company would approve 2 tablets instead of one. Also I think the side effects are worse with it. Just thought I'd mention it. Hope this helps your son! Pam Thanks Pam, Mason at one point was on Nuvigil as part of one of his treatment protocols. He had no improvement and suffered from all the side effects and was pulled off of it. So, we are going with the Dr's recommendation here at Provigil with Xyrem (which is near impossible to get!) Masons sleep study he went into REM sleep during the nap sessions very fast, hence the diagnosis of Narcolepsy. Just hate the though of putting him on these Narcotics long term.
  3. My son, Mason has been dealing with Dysautonomia now for almost 6 years with virtually no progress made since his diagnosis. He was Diagnosed at the age of 10 with Dysautonomia POTS and has been on every drug therapy and protocol since, with no positive results along the way. We recently moved across the country and started all over again with a new team of Doctors. New treatments, new rounds of testing along the way with no real changes in his condition. One of the Dr's recommended a sleep study. So reluctantly we agreed, other than insomnia we didn't really see what a sleep study would do. It turns out Mason is now diagnosed with a severe case of Narcolepsy. This came as a total surprise to us. Mason never takes naps, is up half the night in many cases and doesn't exhibit what I thought were the symptoms of Narcolepsy...ie falling asleep all the time. He never complains of sleepiness, to me he exhibits more insomnia symptoms. However, from what we are learning, many of the symptoms he has show for years; brain fog, fatigue, muscle weakness; dizziness, loss of vision, low BP, etc. etc are also symptoms of Narcolepsy. Very similar symptoms to Dysautonomia. Just wondering if anyone else out there is diagnosed with Narcolepsy. We are wondering if we have been mis-diagnosed all along and fighting the wrong battle or if this is just another thing on top of Dysautonomia. The recommend treatment protocol is Provigil in the AM and Xyrem at night, but before we go off on another approach we are trying to learn as much as possible.
  4. Hi All, Our son was diagnosed several months back with Dysautonomia and POTS. It sure has been a rough ride as we have worked our way through the medical system. Some good news is that we are seeing improvement with his latest meds, but I do not see how he could attend school. Last year our school provided a tutor that came to our house a few days a week. They accomplished very little and he fell way behind what other students were doing. He did however have enough curriculum built up that he passed all his courses (7th grade) with good grades. So this year on to 8th grade. However with the constant ups and downs of where he is right now, I cannot see how he can attend a normal brick and mortar school. One day he is fine, the next he is down. One hour he is good the next he is not, one minute good and the next not. I'm sure many can relate to this. We are heavily leaning towards the idea of home schooling or cyber schooling for him. Anyone go down this path and care to share the good and bad of making this choice?
  5. Mason sleeps much better. Before Melatonin, he was up every 30-60 minutes. Now he sleeps several hours and may only wake once or twice during the night to go to the bathroom. Restful? I'm not sure as he still feels awful every morning upon waking, but on the surface he is sleeping more which has to be a good thing.
  6. Our son Mason's has really struggled with sleep since being diagnosed. Most days, he would be up to 2-3 in the AM then only sleep to 8:00-8:30 every day. It was taking a very heavy toll on him and my wife. Our Dr recommended that we try Melatonin tablets at night. They have been a blessing for us and the only thing that has worked in his treatment so far. He takes one tab each night and is asleep within an hour of taking it. He sleeps most of the night through other than getting up to go to the bathroom from all the fluid intake. This has him on a somewhat normal schedule of bed between 10-11 and getting up around 7:00. I understand that Melatonin is not for everyone, but in our case it has helped tremendously!
  7. We have been extremely fortunate with our son (Mason) to date. Before he became home bound, he made the honor roll the first two semesters with pretty much all A's across the board. After getting sick we were able to get him signed up for home-bound instruction. We were informed early on that he had completed enough academics to pass and we need not be concerned with this year. These days Mason cannot do much school work; lack of focus, inability to sit upright and all the other symptoms that he gets make it very difficult. So to attempt to keep structure the teacher shows up once a day and they do oral work. Mason laying on the couch and the teacher and him reading and interacting together. They are going at a "work at your own pace" and it is good for now. The teacher and principal are OK with this method. The only thing we have continually supply is monthly notes / excuses from the Dr to the school. If his condition progresses past this school year and into next, I think we will be in for a much different scenario.
  8. My son has lots of vision problems with his Dysautonomia / POTS. Tunnel, blurry, jittery, blackouts, high sensitivity to light/dark, and total loss of vision. The symptoms come and go and we usually experience a few of these per day, with the severe ones lasting a few minutes and the more annoying lasting several hours. I have seen his pupils fully dilated and very constricted during his episodes.
  9. To answer a few questions, Mason's case is pretty severe. He has not been able to attend school for 3+ months. He spends less than an hour total per day moving around, the rest he is lying down. We have home bound schooling and most days we struggle to get 15 minutes of teaching done. Mason lays on the couch as the teacher works with him. Some days he literally crawls to the bathroom, so malnutrition, atrophy and severe POTS are all taking there toll. He has had vision problems of varying levels for about 6 months. He describes the following vision problems "shaky, blurry, fuzzy, lack of focus, dark spots, light spots, tunnel vision, sensitive to dark, sensitive to light, and just about total loss of vision. He has had a multitude of tests in regards to vision and it has been attributed to POTS. I will also second the opinion that taking BP and temperatures at home are a must. When he is feeling the worst, BP is usually in the 75/50 range and we see an elevated pulse rate. We have been tracking BP, pulse, temp for months and can spot how they are related to how he feels. We do understand that we are in for the long, rough road on this, but just feel that we are learning much of this on the fly. Some positive news is that our Dr's admin called over the weekend and expressed that the Dr was very concerned with Mason and wants to see him on Tuesday. Again, I appreciate everyone's thoughts, prayers and advice!
  10. Thanks for all the replies. We ask our son on a scale of 1-5 how he feels. We have been hitting 4-5 on a regular basis, although by the time we would get him into the car and to the local hospital I'm sure it would come back down to a 2-3 which is what he feels during his best times. Our Dr only recommended to go to ER if symptoms are life threatening. As a parent, at times it all seems life threatening. So far we have not made the journey to the ER and we are giving most things an hour policy of wait and see. If he has severe symptoms for 60 minutes, we will be taking him in. The severe symptoms last 15-20 minutes in most cases and then he drops back down the the major category. The long time between specialist visits and the wait and see game of treatments are frustrating to say the least.
  11. I started a thread some time ago in regards to my son and his diagnosis of Dysautonomia with POTS. We are about 4 weeks into his treatment and we have see no changes for the better. We have had some real bad days and were close to taking him to the ER. We haven't so far and not really sure what good it would do. The hospital that is treating him is over an hour away and our local hospital has no expertise in the disease. However, we have had some really bad days with low BP, severe pains, vision problems and a whole host of other issues. At what point does it make sense to visit the ER and what if any good outcomes can be expected from it? Seems like many are treated like mental patients, given an IV and sent home.
  12. Just an update but Mason's Dr. has now prescribed Florinef as the next step in his treatment. Most likely start tomorrow, blood work in three days and then re-evaluation in 7-10 to determine how he is responding. Thanks again to all those that are following and responding to this thread. It has been a great help!
  13. Thanks everyone for all the responses. The information is very helpful. To answer a few questions, Mason's worst symptoms are dizziness, jittery feeling, vision problems, headache, weakness (he calls it marathon legs), cramps/joint pain and the inability to stand or sit. He has a lot of other come and go symptoms, but the ones listed are here all the time and do not go away. As to the Milk, he has always (like everyone in our family) consumed only milk. He has about doubled his daily intake per our Dr's recommendations, but has not had issues in the past with Milk. For now we are not going to change his diet, until either the Dr recommends too or his treatment continues to be ineffective. I'd rather be a little conservative here than change a bunch of things at once and not know which one of them really effected him. We hope to get some more information from his Dr by the end of the week on what his recommendation is for next steps.
  14. We have read Friedmans info when our problems initially started to happen. We have three doctors that all diagnosed it as a Rathke's Cleft Cyst. We traveled to Pittsburgh to see one of the nations leading Neuro surgeons and she along with the two other physicians that have seen my son all indicate it is an incidental finding. Since the pituitary, endocrinology and dysautonomia are all intertwined and related, I personally have about a 90% confidence factor that is incidental for now. One other interesting thing to note is that 5 years ago my son had a 1 in million complication to a toncilectomy. The complication was Grisel's syndrome which in simple terms is an infection of the spinal joints. Treated like Menangitus it may have played a part in all this, hard to tell as there are very few physicians that know what Grisel's syndrome is.
  15. Hi Mack's Mom, Dr Rowe is who my wife spoke with at Hopkins. We were blown away that he picked up the phone from an email my wife sent and called us directly! He spent about 45 minutes on the phone with my wife. He did know the Dr that is treating my son at Children's Hospital of Philadelphia and recommend that we continue with him. He gave us a lot of information and a reality check of just how difficult this disease is. As for treatment, Early into this he was placed on a low dose of amitriptyline by a Neurologist. It had no effect and he was taken off of it. 12 days ago he started taking sodium tablets with increased fluid intake. He has had no response to this and seems to be a little worse each day. The plan is to re-evaluate him at 14 days and determine where to go. Mason is drinking 1.5 gallons of Skim milk and we try to buy the 100% natural steroid free kind. He drinks some water but does not like anything else to drink so milk is the choice.
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