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Everything posted by cobbiemommy

  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 for IVIg? We are still trying to get the insurance company to pay for the Moleculera testing and have our follow-up appointment on January 5th. Your thoughts???
  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 every financial resource and leaped a few times into unknown financial peril. We are actively seeking a different PANDAs doc, but working with our wonderful pediatrician, and a therapist. I will probably not explain this correctly, but sometimes we have had to just play the game the way the medical community wants it played, until we could get to that next level of care. I don't view our children's health as a game, but I felt like I would do whatever it took and look under every rock to get more answers. Keep putting one foot in front of the other and make sure not to neglect your own physical health. Cobbie
  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 referred us to crisis phone number. Feel like they washed their hands of him. Called Dr. K in Chicago and he could see us tomorrow but is 10 hour drive, otherwise nexxt week. I made the appt. for next week. Called regular immunologist, but he is out until Wednesday. Husband is against drive to Chicago, tonight. I'm in favor of it. I'm worried this is going to spiral out of control like it has in the past. Only thing that made it better was steroids and IVIG. Just gave son 800 mg of ibuprofen and sandwich. He seems better but he is at home with me, so there you are... Brain is swirling and not sure what to do. Any advice???????????
  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 I ask for more ABX, steroids (which usually help) or some combination? Cobbie PS. When my son was four, he would hug me all the time, all day long. I knew it wasn't right at the time,but I didn't know anything about OCD or PANDAs. It is sad to think his OCD is popping up in such a heartbreakingly sweet way.
  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 preventative abx. He has very few antibodies for strep, despite receiving the Pneumovax. He has some, just enough to be denied by insurance for IVIg. We are doing round the clock Advil and headed back to the immunologist on Monday.
  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 like he is giving you the "death stare", but he seems genuinely surprised when you call him on it. He also has vocal tics and some echolalia. All of those would be minor things, but his personality is mean, crabby, irritable, snappish, etc. Soooo, if anyone tries to help him, he bites their head off. He thinks everyone is a jerk and out to get him. Needless to say, he has no friends. His dad is a funny guy but extremely driven and hardworking. Those traits do not mesh with my son's current personality. I feel like we are all having to change our personalities and actions, so as not to provoke a response from my son. Our current Dr understands PANDAs and treats with IVIg or steroids and prophylactic antibiotics. He has prescribed oral steroid tapers for DS, but the steroid dose has never started above 40 mg and the benefits quickly wear off. Under a previous doctor's care, he received IVIg and IV steroids with very good effects. Dr. says he is doing well in school, doings sports, that this might just be a residual thing. My mother's intuition says there is still something wrong. He flares after any illness, had a horrible response to Intuniv, and quite honestly he is not doing as well as I know he has in the past (which this doctor has never seen). Also, he still has loads of anxiety. Thanks for letting me rant/vent. I know the parents here will give me a reality check.
  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 the doc and they said to start him on steroids, luckily we had some in the house. Now I am hoping to rearrange his dr's appt again to get him in asap. We have submitted all of our paperwork to Duke, but have heard nothing back, yet. We have been dealing with this nightmare for over 12 years and have had four ivig infusions over the last five years. Steroids have helped in the past. He just came to me and told me he had horrible thoughts about his sister and that he is a bad person. So much more that I cannot type or put into words. We need a healing miracle. Sigh
  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 been a problem for my son. Like you, we try to guide him and correct him but with little success. I feel like a failure many times. Hang in there, we will get to healing.
  16. DS, 15, came home from Wrestling tonight and he is like another person (not a good thing). He is exhausted, emotional, screaming and crying. He always works really hard at practice and this is not the first time this has happened. I looked up exercise-induced brain swelling and the description comes up for hyponatremia. Anyone have any experience with this concept?
  17. This sounds like Post Traumatic Stress. Many parents on this board can relate, including myself. I think it is the idea that we are always waiting for the "other shoe to drop" and thinking that things are going to go bad very, very quickly. We clench up in anticipation of that incident that may or may not happen. Therapy can be very helpful, as can a supportive spouse, a new or rediscovered hobby/passion. I still struggle with this, but I am trying to take better care of myself. Talk to your personal physician and make sure that all of your health needs are being met as well. My being in better health and sleeping better has been a huge bonus for my kids and spouse.
  18. Fatigue has always been one of DS main symptoms/concerns. Interestingly, since he has went out for sports and started weight lifting, his stamina has improved at least in terms of being able to practice. Fatigue at other times is still a problem... He also lies in bed for several hours before he can get to sleep and awakens frequently throughout the night.
  19. Oh my gosh... he is in the middle of a horrible eczema flare right now... Any suggestions on what to do for it??? Advil?
  20. Ds, 15, has been dealing off an on with PANDAs for a long time. He was also previously diagnosed with Lyme/Bartonella and took some heavy duty antibiotics. Whether a herx, a symptom of Lyme, or a reaction to the abx, he developed tinnitus which lasted about a year. It has since resolved, but he talks EXTREMELY loudly. He is not aware how loud he is and gets very upset when we tell him to talk softly. Has anyone else had a similar experience? Is there anything that can be done? He has never had a hearing test other than the basic tests in school.
  21. Need some advice here. My brother's great niece has recently been hospitalized for extreme depression at the age of 7. She has severe rages, fight or flight and separation anxiety. I talked to her grandmother this evening and she said that Sweetie Pie was being treated for a urinary tract infection. My brain immediately went into PANDAs mode and I told her about PANDAs symptoms, etc. UTI can be a cause of PANDAs, right??? I sent them some links to the work of NIMH, OCDFoundation, Saving Sammy and Dr. Cunningham. I need the name of an excellent practitioner in the Oklahoma City area. I would love to be able to give them a name by tomorrow, Monday, if possible. I cannot bear the thought of one more child going through what we went through. I want to get her help ASAP. Cobbie
  22. DS, 15, was on three months of iv abx after two years of oral meds for bartonella/lyme. I don't think it did much to improve his condition, but it sure was expensive. We were not able to use Rocephin because of gall bladder sludge, but the medicine was still almost $3,000 a month including home health care after the first month because the insurance would not pay for it. Like PowPow, Steroids, Oral abs. and IVIG have been the biggest asset for my son. He is now diagnosed with Specific Antibody Deficiency and we are waiting to get approved for IVIg, again. We did the Pneumovax challenge and he failed (big time) and has had strep four times since the IV abx. Please make sure your child is evaluated by a highly skilled immunologist. You may find resources at the Immune Deficiency Foundation website. www.idf.org My son is now 15, looking at playing football, wrestling, driving, and being in the marching band. He still has fatigue, but life is so much better and will hopefully continue on this trajectory. Best to you, Cobbie
  23. Ds, 15, has impetigo again on his back. Back to the regular pediatrician again. This makes the third case this year. Hopefully, this will help make the case for IVIg because his streptococcal antibodies are so low.
  24. I agree with everything Laure has told you. One other thing that you can do is an ice pack on the neck area, especially the first couple of days. Cold liquids and liquid medications are key. DS had to stay out of any physical activity for two weeks. He cheated and went to athletic practice a couple days early and had some bleeding, so I would definitely not recommend that for anyone. Absolutely wake them up to give them pain meds before the pain gets too bad. No sense in your child being miserable. My son wanted Dr. to take a pic of his tonsils when they were removed. We asked in advance and we had to sign a release, but he got his pic. They took the phone right into the operating room! Too funny.
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