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Today I've been making multiple phone calls to help work out some of our 'medical' issues. A lot of it is regarding my eldest two daughters' medical condition of Growth Hormone Deficiency. This, to put it shortly, means they cannot grow without help since they do not produce enough of their own growth hormone. They take nightly injections (given by myself) of synthetic growth hormone so they can grow normally like other children. I too, along with my twin, had this problem as a child. So we have found that this disorder is in fact genetic in my family, which is rare. It controls many other things besides just linear growth, but that is the main concern as a child patient with this condition. Earlier this year, starting in November, we started having problems with our specialty pharmacy that delivers the girls' medication to our home. We went back and forth with phone calls from them promising to deliver their meds and that they were having issues with our insurance company, but they promised it would be worked out shortly. After two long months of my daughters going without their medication, we were turned to a different pharmacy. Ugh. This other pharmacy then provided our girls with another month and a half of medication at no expense, pending our insurance would pick it up as they are supposed to. Medicaid (our secondary) usually picks up the copay since it can get VERY expensive. Well, our insurance will not bill Medicaid for the copay, so we are left trying to find out where to get the money for that. We have contacted several different places for help and are presently awaiting to hear back from them. However, so far my eldest two have gone without their meds for a month now and are starting to show the signs....increased fatigue,lack of concentration, weight gain, easily overheated,etc. We just had their latest endo appt on Wednesday and their growth has already dipped again from the 3 total months this year without their medication. I am so worried. Our doc says they have another month before it can become a serious problem that they will have trouble bouncing back from, as far as their height is concerned. This also delays puberty as well. Hopefully, we will hear back within the next week on help for payments. Otherwise, our only option is to switch to a much older, less used medication. If so, I am hoping it's efficacy is the same as what they are presently on. I will also have to undergo training to mix the solutions properly, as it is in jars instead of the vial/pen device they use now. On other medical issues...I too am still Growth Hormone Deficient. Since having it as a child, I had to be retested as an adult to see if I am in fact still GHD. I flopped the test big time and still am ghd. Since having that testing though, I have had a difficult time finding endos that treat Adult GHD, are caring, or have adequate knowledge on it. I thought I had found that doc last year. He prescribed my gh but for only 3 months. I have been off it over a year now, due to not getting back to his office til this week and lack of money for meds. During this time fatigue has overcome me on a grand scale...almost as bad as before I was diagnosed as an adult in 2002, at age 27. I had taken my eldest two to see my old pediatric endo for ghd concerns, and he mentioned that I could have it as an adult too, since I had it as a child. He had me tested and then put on gh. At that time, I was sleeping 16 hrs a day, losing my memory (having to write even just one item down on paper to go to the store so I wouldn't forget), lost concentration, gaining weight, no stamina for even climbing our stairs. It was terrible. All that reversed once I went on gh again...I slept normal hours, lost weight, slowly regained memory, could concentrate again, and could play with my kids! I was so happy! All this year and a little of last summer though, fatigue has been attacking me since not having my gh. I am 'functional' with 10 hours of sleep, but usually require a nap by mid-afternoon. I hate it. If I am not able to nap a little (which often happens), I feel lethargic the rest of the evening, almost like I've been drugged. I also haven't had the energy to play with my girls that much. I take them to the park, but I don't run around much, else I get very winded and overheated. 'Mental fog' has also been a HUGE problem, as I can't seem to concentrate or gather my thoughts together like I used to...just like before. Well, I saw my own endo this week, as well. It went badly. He basically refused to put me back on my gh. I was stunned, as most 'normal' adults produce their own gh well into their senior years. It controls weight, metabolism, heart muscle function, cholesterol, other hormones throughout the body,etc. (http://www.magicfoundation.org/www/docs/105) He said adults dont need it, the way he sees it, though my test results showed just the opposite. I was mad and hurt at the same time. So, I am in a search of a new doc. I have really lost faith in docs in the last couple of years over all this. Also in insurance companies...who sometimes refuse to pay for gh for both AGHD patients and kids due to its over-prescribing by docs to athletes and older people seeking an anti-aging miracle. Please pray that I find a knoweldgeable and caring doc for my treatment and also our insurance/copayment mess gets worked out for our girls' treatment ....soon. |
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