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Everything posted by nojo

  1. I was telling my family over dinner last night about what I had read about the conference, especially the commentary about the mice from this thread. I was so excited about some of this research and the implications. My pandas daughter looked at me and said she can't believe they are torturing mice! Interesting perspective...
  2. Our family has been helped so much by finding this message board. We have seen many of the Doctors in our area and out of our area already on the suggested Dr. list. We have been helped greatly by Dr. L, Dr. B and the Cunningham test. The information on the both the Pandas Network and Pandas Resource network has given us help and hope. Many parents have offered us guidance. There are so many smart, caring resourceful Doctors, researchers and parents that have become involved in this crazy journey. My hope is that they can all come together to figure this out so we can heal our children.
  3. Hi, just wanted to add a bit about my daughter. She is very petite, always has been. We did a series of 7 hd ivig 2 years ago. She did very well until she got sick about a year ago. We restarted ivig this past August. She had not gained any weight since stopping, after the first ivig she gained 5 pounds that month and kept it on! She only weighed 50 lbs, so that is quite the gain for her. She also has CVID. I think that her body was so busy fighting the germs that she could not take the energy to put toward growing. She looks great, and relatives that have not seen her in a few months
  4. Thanks for the insight, it is so hard to know the right path. We are in Richmond, Virginia, so I will look for therapists around here. I feel like she is about as good as she is going to get right now, on this path, but I want to make sure it is not just my not wanting to pack up to CT for the whole transfusion. It is hard to know too, if some of these quirky things are just habit now, and that is why therapy would be beneficial. For example, she has real issues about emptying the dishwasher. If her sister puts a cup in the wrong spot it is very upsetting to her. This is so minor compare
  5. Hello All, I haven't posted in awhile, but we are still dealing with PANDAS, and I need treatment advice. Brief history: DD 11 has been dealing with PANDAS for a number of years. She has low igg levels (CVID), tested positive for lyme in addition to PANDAS. We saw Dr. L, she said because of low immune levels immunologist would be a better fit. We currently see Dr. B. Daughter did a series of 7 hd ivig every 8 weeks for a year. We stopped for 10 months since she was doing well. Last February she got sick, and fought it off. This was definitely different than how she would respond in th
  6. For what it is worth, we saw Dr. L about 2 years ago. My daughter has pandas, and she is one with low igg numbers. When we saw her she told us we should see an immunologist because of the low igg numbers. We asked her about the flu mist since it was being administered in the elementary school to all students. She felt strongly enough to write a note exempting my daughter AND her sister out of school for the WHOLE WEEK. We ended up pulling both children out of school to homeschool because of problems with the school directly contradicting medical advice. I do not know if she made th
  7. We have used zofran to help with nausea.
  8. Thank you both for the information. I am going to forward it to my husband ( he pores over all the medical articles), this has been bugging us for awhile. I think many never culture a positive rapid test. Our pediatrician started culturing all rapid tests because of the frequency that we had strep. I just got out my records, and we have never cultured positive. We started culturing in September 2009 and I have at least 4 dated examples of positive rapid, negative cultures. In between, she would show that she was clear on both the rapid and culture. Every time we took her for a te
  9. Hi, that was our family, and no we never got that figured out. I kind of gave up on this issue, and I did consider us positive. The read on I considered my daughter positive is that she would sometimes test negative, so I do not consider her a carrier. We started culturing every positive rapid, and the culture was always negative. Most people do not culture positive rapid tests, so I've wondered if there are more with this problem. Currently, we finished our 3rd ivig, and will be back for number 4 in about 2 weeks. She has not had a positive tests since we started in November, but I
  10. Good Luck Stephanie. I first did a blood test, which was positive. I was scheduled for a colonoscopy b/c of my issues. When the blood test was positive, luckily I had asked about the blood work first. For a definitive diagnosis, they had to do an upper endoscopy to biopsy the small intestine. My biopsy was ok, but the doctor said he almost didn't send it out because I looked so bad. The whole gluten issue runs on a scale from intolerance to celiac. Even though the biopsy was ok, he considers me celiac, and thinks he didn't pick a good enough spot to send for the labs since damage can be
  11. Hi Stephanie. Your story sounds alot like mine. I had terrible pregnancies, I threw up both times until the day of my emergency c-sections. I was hospitalized repeatedly for dehydration from the vomiting. I was put on bedrest in the hospital at 28 weeks with my first pregnancy. I had always been a happy person, and I was crippled by depression. I ended up seeing a counselor to deal with the trauma of the first delivery, my daughter was only 3 pounds 15 oz, and I was too sick to even see her in the NICU for 2 days. I had my second daughter 14 months later, and since her birth almost 8 ye
  12. Thanks for the replies so far. We are struggling so much right now. We just tried to eat dinner, she won't eat, won't drink, are keeps running to the bathroom. Needless to say, the stress of the company that is arriving tonight for the holiday in addition to the ramping up is not making for nice night at all.
  13. I need some advice. We just did our first IVIG almost 3 weeks ago. My daughter is on full strength antibiotics since the beginning of September (zithromax). She has cvid and is also positive foe Lyme (whew!). Since we have been home, she has definitely had a sawtooth pattern recovery , but I can see improvements. In the last few days the urinary frequency has shot through the roof. She is leaving the bathroom, and then turning around to go back in. She knows there is nothing left to pee, and is getting so frustrated, but she has the urge. I know there is a physical component, it is not
  14. All of this crazy autoimmune stuff with dd led me to be diagnosed with celiac 6 weeks ago. I went to a GI doctor because I thought the stress of a chronically I'll child was getting to me. I had read about celiac how it is often mis-diagnosed as IBS. I asked for the test to rule it out since the diet is so hard, and I was positive. Both children have tested negative, but the difference in my body has been tremendous. I could see a big difference in only 3 days. I am still healing, but the daily headaches, bathroom problems, and crazy brain fog are gone. I'm getting off anti- depressants.
  15. My daughter is immune deficient. Low IGG levels, Failed subclass 1 and 2. Failed Pneumo titers, were revaxed, made a response to the revax. She scored 174 on Cunningham, just found out her other parts were normal except for anti-tubulin was 3x normal. Does anyone know what that means? We saw Dr. L. last year, got our diagnosis, but later in fall also got bitten by a tick. Currently, I think she is positive also for lyme. I think we started as a clear pandas case, but she gets everything she is ever exposed to. I think because her immune system is so poor, she doesn't really have a
  16. I want to second the thanks, it always helps to know what to expect. One last question I have would be about Zofran for the nausea. Did anyone think that would be necessary? Is the nausea mostly due to a the headache?
  17. But if you are comfortable, I would like to know also what to expect. We had our first visit also with Dr. B. We are awaiting some further testing, and it looks like we are headed down that path too (especially after the call I received yesterday from the office). I know that we also have low igg levels, and that is why we are also sick often. From what I have read on the boards, the dosage of ivig is lower for immune deficiency, but higher dose for pandas, so how does that work if you have both? Sorry, I'm not trying to hijack your thread, I have so many questions before our next appoint
  18. We have our first appointment with Dr. B next week. We will have all the labwork except the igenex complete before our visit. As it is a 7 - 8 hour trip for us, would you recommend completing all the testing before coming to see him, or going up with part of the labwork and seeing what he suggests? We want to make the most of our visit. For a little background info, we have done most of the labs before (we have low igg levels, failed pneumo titers, 174 cunningham test) and had seen Dr. L last year. We had decided to make the trip to see Dr. B as most of our main issues are more immunolog
  19. We have had a hard time. We have an appointment with Dr. B coming up and he wants this done. Make sure to call to have a kit sent, not just the paperwork. We were told we just needed paperwork, and any lab could draw. This doesn't appear to be true, at least in VA. We had the paperwork signed by our Dr. and went to Lab corp, they can only ship to lab's on an approved list per OSHA regulations, so they would not do the draw. The hospital then said they would, but refused without a kit. We spent lots of time yesterday on this. Still not done.
  20. What type of antibiotic seems to work best in this instance?
  21. Thanks for the link to the other post, somehow I missed that. I have our records in front of me. We are making the trip to see Dr. B. I know this has been a recurrent problem for us because for the past year we have done both the rapid and the culture. Here is what I am seeing with the labwork in front of me: I have at least 5 times where the rapid was positive, the culture was negative. In fact, as I look through my records, I never have a positive culture. Even when she got scarlett fever this summer. She had classic rash, 101 fever, and even her hands and feet peeled a few weeks la
  22. Does anyone bother to send a culture for a positive rapid test? We have tested positive so often on the rapid, that the Dr. requires the culture. Occasionally we are negative on a rapid (and then always rapid on a culture). Most times though, (95%) when we are positive on a rapid test, the culture comes back negative, we are told we cannot have strep. How can this be? I have been told this is could be picking up dead cells from a previous infection, but if a previous test (rapid and culture were negative) this should not be true. Could this mean we are just colonized, not infected? (and
  23. Wendy, when I read your post, and then looked up Uveitis, it refers to the eyes. My daughters has this pattern on her cheeks not on her eyes. Her eyes are clear, but rimmed with the dark, allergy like shiners with the lacy rash below. Am I interpreting Uveitis as only affecting the eye and not the surrounding areas? If not I may be answering my own question about if we need to delve further into the Lyme issue. Thanks for taking the time to answer, before I had posted I did read your other post, I still wasn't clear about what the signs of a co-infection are. Noelle
  24. I've posted a few times before, We been somewhat immersed in our own issues so I haven't followed all the board as regularly, and I hope someone doesn't mind clarifying a few things for me. A brief history: DD7 pulled out of school last Thanksgiving to homeschool. She has severe asthma, always sick, we saw Dr. Latimer, pretty much confirmed PANDAS, Cunningham test 174. Initially our daughter did well at home, seemed to improve, started healing, eating food not always sick. We were hoping that by giving her body a chance to heal she would become stronger to fight off constant germs (IGG le
  25. Thanks for the link Vickie. I have it printed. We are plum worn out.
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