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Everything posted by 1tiredmama

  1. The doctor gave 14 days of doxy. Have any of you had Dr. T. prescribe doxy for early Lyme? I'm hoping he'll prescribe the rest. BTW, I didn't even need to answer any questions about seeing the tick or about other sx of Lyme being present or not. Their office is seeing a lot of bullseyes. He said the rash was enough.
  2. tiredmama- I really like Klaire therbiotic detox probiotic. We use it along with Culturelle and Florastor daily. philamom, where do you get that? Thanks!
  3. Dd has a rash that seems to change by the hour. Two days ago, she showed it to me, and I thought it could be a mosquito bite with more redness than usual. I thought she'd been scratching at it too much. Today, I was alarmed because it looked like a bullseye (4.5cm.) A few hours later it looked bruised, now it looks faded. She said it looked bruised yesterday. She has had it for at least a week. There appears to be one puncture wound in the raised, red center. I'll take her to the Urgent Care tomorrow, but I'm afraid to trust any local doc. What if he says it's a spider bite? Isn't his guess as good as mine? I can't trust the standard tests. I've done some research, but there is SO much conflicting info! One site says assume lyme, another says watch for flu-like sx. One site says the rash should be >10cm, but some people get no rash--is there no in between? Some sources say no itching, some say it can itch. Oh, and one site said the bullseye can be a non-lyme reaction to a tick bite--wait, WHAT? How am I supposed to make an informed treatment decision? How can the doctor??? Dd has been relatively stable, and now she is reporting a rise in general anxiety. Any infection triggers anxiety in her. I suppose even a spider bite could. Lyme scares the heck out of me, but I don't want to jump the gun here. I need advice!!
  4. Get tested. I carried the infection around for nearly two months thinking it was something I was eating. I felt fine, just gassy with one loose stool per day. Then, it gradually got worse. All this weeks after I had taken an abx. It turned into 4-10 loose to watery stools per day. Dh and ds came down with it at that point. They presented with an acute onset. Dh was extremely ill, but I managed to keep going to work. We tested positive. Oh, and I was using Florastor at the time. And... After treatment, I took Culterelle and Florastor, but relapsed anyway. Do not take this bug lightly.
  5. My ds18 went through PEX and gained absolutely nothing from it. Huge disappointment for us. He is 8 months out, and no improvement. Now, I can say that you need to be very careful with the psych drugs. Ds handles them well, but dd does not. Even small doses can throw her. Good luck sorting things out. It is so hard.
  6. Is anyone here dealing with dysautonomia? Two doctors have suggested it, we see a specialist in two weeks. My teen is having trouble regulating pulse, bp, and temp--during one appt, his temp was 96.7! Blood pools in his hands and feet. And, he's lost 55lbs in a year. Lots of other sx, too. Could this have been caused by PANDAS? What is the treatment for it?
  7. Oh, no! I'm so sorry! You and your son have already been through so much. You are both in my thoughts. ~ HUGS ~
  8. How are you all getting appts? Months ago, I called and sent an e-mail. No one replied. I gave up.
  9. My ds had PEX at Georgetown in October. Dr. L. ordered it. Cigna paid for it-- after hours and hours of work and stress on our part over a 3 month time period. The total bill before insurance negotiation was $42,000. Unfortunately, our ds, who went undx'd for 14 years, experienced no improvement-- nothing at all. And, I must give you this heads- up, we got no help from the doctor's office to make it happen. Once the doctor ordered it, we found that we had to coordinate everything between the doctor's office, the hospital, and the insurance company. Each seemed to get in the way of the other, if we could get cooperation at all. Our dd was also supposed to get it. Again, no one is doing anything to get it on the books. We are not up for the fight again. Dd won't be getting PEX. That being said, I think if you are willing to pay out- of- pocket, it is much easier to get a date.
  10. Thank you all so much for the information! I am definitely going to pursue this. I am currently playing phone tag with them. Dd wants to know one thing: How long is each daily session, and are sessions a Monday-Friday? I'd like to know if we will have to make a trip there prior to the beginning of treatment. Thanks again!
  11. I understand that USF has an excellent intensive OCD program. I am wondering if they treat other disabling anxiety issues as well, and with the same high success rate. Dd12 has some kind of intense fear related to learning--performance anxiety maybe. She has missed a year of school, and at times, has hidden from the homebound teacher. She is currently melting down over instruction because of the anxiety it triggers. Just the mere mention of schooling causes a visible tightening of her body. I see no improvement on abx. Not a single med has been able to touch the anxiety-- tried them all! I am desperate-- she needs an education, and I see no end in sight. Do you think someone there can help us? Do they accept insurance?
  12. I cannot answer your question, Peggy, but I can say that it makes sense to me to try an immunosuppresant for young adults with treatment-resistant PANDAS. Our next stop is a rheumatologist. I take Imuran with success and zero side- effects. I want my son to try it. Please keep us posted on your dd's progress. Kids like yours and mine will most definitely be trailblazers.
  13. Ds 18 has been too nauseated to take two doses of his meds. He is often only awake for 12 hours on any given day. It takes about 6 hours before he can eat or drink. For weeks, he is only getting one of two doses of the Augmentin. I'm wondering if I should stop the abx all together at this time. Is 50% of the prescribed dose of any benefit? I'm also afraid to contribute to the growing issue of drug-resistent bugs. What do you think? I can't look to the prescribing doctor with my question because I will not get a response, and his next appt isn't until February.
  14. My ds suddenly started acting just the way you describe. At the pediatrician's office he kept falling asleep. Turned out, it was mono. There were no other symptoms. I'd get him tested if I were you.
  15. Ds18 and I saw his PANDAS doctor today. It was noted that he is malnourished and lacking muscle. The doctor believes the chronic nausea stems from the brain. We've already done PEX, and we were told that because he went 13 years undx'd, any sign of improvement in any area will take months. In the meantime, my job is to stop the weight loss, refeed, and get him into physical therapy to address his muscles. The doctor suggested behavior-modification, but my son is nauseated. He LOVES food! A year ago, he was quite overweight! This is definitely a physical problem. There is no OCD or distorted body image. I am 100% sure of this. He simply has lost his appetite, and he either feels nauseated or too full to eat much. In addition, he has always been a picky eater due to sensory issues. I'm supposed to increase his caloric intake, but honestly, he is eating as much as he can. I'm supposed to weigh him everyday, but I am wary of putting too much focus on food, weight, and eating. I know how easily our kids can slip into an eating disorder. After only a week, ds is no longer interested in drinking Boost. I suppose, that's behavioral, and I could give him incentives to drink one a day. We will definitely do physical therapy. And, I can try offering him small healthy snacks while he is gaming. I'd love to hear some input on helping a kid who has chronic nausea. Thank you!
  16. If there has been no improvement in the first 7 weeks, does that mean PEX did not work? We did not, and will not, be following up with IVIG because our insurance does not cover it. Ds does not have any immune deficiencies. Is there anyone out there who saw positive results from PEX later, rather than sooner?
  17. Your son sounds underweight to me. I agree that a visit to the doctor is in order. I have a teen who is losing weight. I started him on Ensure and Boost. I have used it in the past to get some calories and protein into him.
  18. Thank you for sharing your story. I really needed to here it just now. May your ds continue to improve and spread his wings.
  19. Ughh...did anybody read the comments (only 4 online). Not talking about Malia O.'s...the others. Here's the link http://www.boston.com/lifestyle/health/2012/10/27/the-pandas-puzzle-can-common-infection-cause-ocd-kids/F5NHpuY8KYELolBOxQil4O/story.html?comments=all#readerComm stupid person #1 Lessismore 10/28/2012 09:51 AM This article is too funny. People reading this a century from now will get a chuckle from it. Kind of like us reading about phrenology. and stupid person #2 LitChic 10/28/2012 04:11 PM That's right parents, keep dosing your kids with various antibiotics of varying strenghts instead of admitting all of their behavioral issues point to a BEHAVIORAL diagnosis. That way, you can sleep better at night, instead of admitting that your precious child may have deep emotional issues that need to be addressed. Hopefully, your child will not develop an ACTUAL confirmed infection and require antibiotics, as they will likely be antibiotic resistant by that time. QUACK QUACK QUACK We just canNOT get a break! Parents of kids with psychitric symptoms are harshly critisized for putting their kids on pschotropic drugs. Now, when a portion of us stand up and say that antibiotics are the firstline treatment, we are criticized for that! I sure hope Karma catches up with all those nasty, rude, judgemental folks!
  20. My dd is 12. We have the 2mg tabs for use on an "as needed" basis to get her to the orthodontist. It barely took the edge off, but the doctor has since told me that I could use 4mg, or even 6mg, if needed.
  21. Wow!!! That's quite a story! I'm so happy for you. Thanks for sharing. It really is important to share our good news.
  22. Hi, Motherbear. I'm so sorry that your ds, you, and your family are going through this nightmare. The sad truth is that there just aren't enough knowledgable doctors out there to treat our kids. Most of us wait months to see a specialist, and it's an agonizing wait. We waited 3 months to see ours, then it took another 5 months to get my ds the plasmapheresis that his specialist prescribed during our first visit. We felt so helpless. Is it possible for you to show your pediatrician some research that indicates the use of long-term antibiotics for PANDAS? Your son needs more than a 10-day course. Maybe that could get your ds through until you can meet with a specialist. Just yesterday, while my son was in Georgetown University Hosp. being prepared for discharge after a plasmapheresis, I had the opportunity to speak with two young residents who told me that they had not heard of PANDAS until they met us. I asked them to consider specializing in the care of PANDAS patients. Why not, right? I'll talk about PANDAS to anyone who will listen. The current state of affairs is unacceptable. Keep posting. We'll be here to help you get through this.
  23. Silver?!! That was a fascinating read! Thanks, Jim. I'm going to ask the ped about it tomorrow. My dh has had MRSA. He needed inpatient care. It is a scary bug. It is good to know that there may be another option when abx do not work. Fortunately ds does not have MRSA--just straight up staph. Thanks for responding.
  24. Ds is leaving the hospital with a staph infection from an ingrown toenail that we've been fighting for nearly 2 weeks. Today, I noticed it was worse--purple and warm. Believe it or not, the infectious doctor the hematologist consulted recommended that I take him to the ER or to his ped for a culture--it was cultured 2 weeks ago. I can't believe that in a hospital full of doctors, no one can take care of this! I am nervous about finishing a PEX with a trigger in his system. Ped office just called and will see him tomorrow--they recognize and treat simple PANDAS. Any advice. I don't want to do the wrong thing. Thanks!
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