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cobbiemommy

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cobbiemommy last won the day on August 30 2013

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About cobbiemommy

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  1. We recently completed an appeal for Moleculera testing for our DS, 17. The results came back that they would approve certain CPT codes, but not others. How does that work? Does that mean that insurance will pay for part of the testing, but not all? I am confused, but I know that I am at the point where I would pay for the whole thing, because I want some answers.
  2. DS, 17, is currently taking Naproxen, 550 mgs, twice a day, for three weeks on and one week off. While taking the medicine, his mood is improved, although nowhere near as good as after IVIg. Every fourth week, he is supposed to be off of the medication. We have never made it to seven days of the fourth week, because his mood is so foul. He is mean, aggressive (especially with his Dad), and just plain difficult to live with. He also cries quite a bit during that fourth week. I think that means that there is inflammation going on somewhere in the brain. Would this be a good indicator f
  3. I'm sorry that I can't answer your exact question, but here was our experience. Our son is a wrestler and had small red spots on every hair follicle around his abdomen, groin and low back. We tried antibacterial creams, antifungal creams, and antimicrobial soap. Nothing helped. Finally, he took treatment dose of Keflex for sinus infection and the skin infection went away! I think the common bacteria that is ever present on our skin can cause some of the skin infections. I think this was making him flare for months.
  4. I understand exactly what you are saying about your child. This illness takes a lot from our child, our family, our marriages, and sometimes even our trust. I know my trust in the insurance industry, the medical profession and the appeal process has been beaten severely. While my family is profoundly changed, we are still functioning and sometimes excelling at being human beings. I am still advocating for my son, but not to everyone I meet. Some people just don't need all of the information and I don't have the energy to give it to everyone. Like many here, we have dug deep into ev
  5. If you do not have a follow up appointment with your child's physician, get one ASAP. Generally, high ammonia levels result from the liver's inability to metabolize and excrete the ammonia into a waste product. My mother contracted Hepatitis C from a blood transfusion in the 70's and the ammonia in her blood from having a diseased liver was one of the worst side effects. Do not be afraid to follow up with a hepatologist. They specialize in disorders of the liver.
  6. DS, 16, had a major paranoid anxiety attack at school. He called me and was all freaked out that something was not right. He did not feel right. He felt like someone was watching over his shoulder (paranoid?). I convinced him to go to the nurses office. He did and his blood pressure was sky high. 190/85 and 155/85. He had been crying and was curled up on nurses cot. He has been on downward trend since getting flu shot five weeks ago. I brought him home and he has been resting ever since. No electronics, no TV. Called regular doctor's office that is familar with pandas, they refer
  7. DS, 16, started Vistaril and after one day he seemed agitated. Well, after two days, it was a full on melt down. I thought this medication was supposed to help with anxiety, instead it ramped it up. Anyone else have this experience? Needless to say, he will not be taking any more of that.
  8. DS has a raging sinus infections with the biggest green balls of snot that I have ever seen. On top of that he got into a scuffle at school and got three days of In school suspension. Sigh. Every time he gets an infection, he flares and has trouble controlling his temper. When the abx kick in he usually calms down. Tired of the roller coaster.
  9. DS, has been given a steroid burst of 45 mg, divided into three daily doses, for five days. I notice the picking has gone way down...
  10. DS, 15, has recently had a sinus infection. He took 10 days of treatment dose Augmentin XR and then 10 days of Keflex as well as an antibiotic nasal spray. Currently, he is on the prophylactic rotating dose of Keflex, but the symptoms of OCD have started up again. He is picking his toenails till they bleed and is very clingy and tired. He tells me he loves me at least 8-10 times a night and wants to hug me each time. While I don't mind, I now know it is not his typical behavior. Symptoms started three days after returning to prophylactic dose. I have a call into the immunologist. Do
  11. DS, 15, had a major meltdown in math class today at school. It was bad enough that the school counselor called me and the teacher emailed me (what joy). He just finished a round of Augmentin XR for a sinus infection. Sound familiar??? He previously flared about a month ago after a viral infection, which is what later led to the bacterial sinus infection... Anyway, DS, was treated for two years for Bartonella. He received three months of IV abx for Lyme. He is currently on rotating prophylactic abx of Ceftin and Amoxicillin. Like many other children here, he got an infection while on
  12. DS, 15, is maintaining at this point, going to school, getting pretty good grades with the help of a study hall session during the day. He competed in two sports this year and while he was on the team, I would not say he was part of the team. He has trouble focusing and remembering math concepts. He can't put names with faces and he can't figure out the bigger picture (strategy, field positions, etc) in his chosen sports that he practices really hard at. He does not want to go anywhere after school or practice, he just wants to play video games, etc. He makes facial gestures and it looks
  13. High dose tapers have worked wonders in the past, while bursts have only produced so-so results.
  14. Ds, 15, had an epic meltdown this afternoon? He is so big and strong and when he has that meltdown he scares me. He has picked up the cold virus that everyone else in our house and community has had. He has had a major snot and drainage problem for a few days, but the behavioral stuff just started. His thought processes are not rational and he thinks that everyone is after him and it is survival of the fittest. He goes from irrational to semi-rational. He scared my college age daughter who went to pick him up and tried to help him. Our house is just a cesspool of stress. We called th
  15. From a purely selfish point of view (my own), this was the perfect post to see first thing this morning. I think all of us can relate at one time or another. DS, 15, has a cold with severe stuffy nose (no green, all clear), but he is really hard to deal with right now. On the one hand he wants to bury his face in video games or iphone. On the other hand, if you try to engage him, he is so crabby that you wondered why you even tried. I cried for most of the drive into work, today. Ugh... It does get better, we are light years away from where we started, but mood issues have always
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