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DebC

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Posts posted by DebC

  1. I agree with having titers drawn. We had our daughter's drawn and her varicella titers were through the roof and much higher than they would have been on a healthy child. She developed shingles on her ear two weeks to the day of receiving her varicella booster. We have a religious exemption in Texas and have those exemptions for both kids. I am hoping that we will continue to be able to keep that exemption with vaccines being a hot topic right now.

  2. I would definitely run the IGeneX test for Lyme. After 5 years with our daughter waxing and waning and our son developing symptoms for 2 years, I finally threw in the towel a year ago and had both kids tested (as well as myself). All of us ended up having Lyme -- I never would have guessed it. We have been in treatment since October and I feel better than I have in 10 years (I had gotten sick so gradually that I thought I was just aging until I had strep and myco that I couldn't get rid of). Our daughter now has no symptoms (age 14), and our son (almost 11) is progressing to no symptoms (he just has a stubborn mycoplasma coinfection that we are battling and has a lingering throat clearing tic).

  3. Our son did a little over 6 months of Azith followed by nearly a year of Biaxin and his titers barely budged. At that point, I finally tested for Lyme and he was positive. We have been on a Lyme protocol and his titers are still slow to drop. They are switching him from his current protocol back to a protocol that includes Azith. We will take a wait and see approach for the next several months and will draw blood then to see if he is moving in the right direction or if we need to change again. We are hopeful that as we address bartonella and mycoplasma with our new protocol, titers will fall.

  4. Our son did 9 months on azithromycin for mycoplasma. During that time, we saw brief improvement before his titers started rising. He switched to Biaxin this past January 250 mg a.m. and 250 mg p.m. He seemed to improve but his blood work this fall showed that his numbers were going up again and his tic was returning. Therefore, our doctor increased the dosage to 250 mg a.m. and 500 mg p.m. The tic seems to be gone so I am hoping that we are heading in the right direction. Next blood work to check on things will be in November and we see our LLMD for the first time in October. I will be curious to see if the LLMD adds something to bust through the biofilm so that the antibiotic will be more effective.

  5. I'm pretty sure that we are a congenital Lyme as well. My kids are at least second generation if not third or more. Both are PANDAS kids as well. I was diagnosed in June through IGeneX (CDC positive) and once I came back positive, I had the kids tested (daughter IGeneX positive and son had many + and IND bands). I had two known tick bites back in my early teens in the 1980's and may have contracted Lyme then. However, I suspect I am probably congenital Lyme as well. My father has Behcet's Syndrome, afib, sore knees, blood clots, multiple myeloma, and shaky hands when he writes. My sister has Sjogren's syndrome which leads me to believe it was passed on to her. Neither my father nor sister has been tested. The kids and I will be seeing an LLMD in October.

  6. Our daughter also had the Genova and Pharmesan tests done here in TX. Once we started supplementing for her deficiencies along with the antibiotic she'd been on for over a year, we saw improvment quite rapidly. We have had our whole family tested through our daughter's doctor for mycoplasma and strep. My husband and I both had high mycoplasma titers and were on antibiotic for 30 days in June of this past year. Our son developed PANDAS symptoms this fall after we had strep and what we thought was a cold that my husband came home with and gave to me as well. It turns out that it was a mycoplasma infection and once we both started on another 30 days of antibiotics, we have seen improvement in our son who had extremely elevated titers. In our experience, getting the whole family tested is important in ending the cycle in the family. I have battled strep over the last couple of years but my titers remain low and our doctor does not think that I'm in a carrier state.

  7. Our daughter has been on azithromycin for several years. She was initially on 250 mg every other day. This every other day dose started 2 years ago and lasted for the duration of a year. However, she had elevated mycoplasma titers that were not responding to this dose last April. Therefore, In May of last year, her dose was upped to 250 mg of azithromycin daily and she continues to take that dose as we monitor blood work and watch her titers gradually decrease. She also had additional testing a year ago on neurotransmitters and other minerals. A few over supplies and deficiencies were found so we have also been supplementing those. With a combination of supplements and azith, we have seen remarkable improvement. She managed to have a break through case of strep in March of this year and stopped the azith for 10 days and switched to augmentin, and even with that, her exacerbation of PANDAS symptoms was not awful and only lasted for a few days before she was back at base line. After augmentin was completed, she returned to her daily azith dose. She takes the azith at night after dinner and takes a Theralac probiotic every morning and we have seen no adverse side effects whatsoever. Rheumatic fever patients are on antibiotics to manage their condition until some time between the ages of 18 and 21. PANDAS is very similar except instead of affecting the heart, it affects the brain.

  8. I'm the Dallas Area Support Group Leader. Our daughter just started seeing Dr. Rao in May and we have seen significant improvement! He ran quite a few tests. Our daughter was diagnosed 3 1/2 years ago and had improved until last fall when her anxiety and OCD increased once again even with a prophylactic dose of azithromycin provided by our wonderful ENT who also sees PANDAS patients. Since so many area support group members had a good experience with Dr. Rao, we decided to add him to our team of doctors. He ran a set of tests from Pharmesan Labs which checked our daughter's neurotransmitters (serotonin, GABA, taurine, glycine, glutamate, histamine, PEA, dopamine, norepinephrine, epinephrine)and found that our daughter's glutamate was high so she is currently taking GABA to lower the glutamate. He ran a NutrEval test which checked her antioxidants, B-vitamins, and minerals. This test showed that her CoQ10 enzyme was very low so we are supplementing that as well. He ran basic blood work that checked all sorts of things (lymphs, immunoglobulins A/G/M, Chlamydia pneumoniae (IgG/M), mycoplasma pneumonia (IgG/IgM Abs), immunoglobulin E, rubella antibodies, cytomegalovirus, all of her vaccine titers (to make sure she was covered as we've discontinued vaccinating for now and all was good). This test showed that although her titers were okay a year ago, her mycoplasma titer was now at 727 and should have been between 0 and 90. He put her on GABA, Zinc, CoQ10, and azithromycin 250 mg daily. She began the higher dose of azith the end of May and the other supplements mid June. Some of the tests were done with blood work. Others were urine tests. He also tested her yeast levels and those were fine.

     

    We have seen quite an improvement. For the last year, her concentration in dance and school has been off. I was talking to her instructor about a week into taking the supplements and was just asking a general scheduling question. The instructor had no idea that we had changed anything but out of the blue said, "I just wanted to tell you what a change I've seen in your daughter the last few lessons. Her focus is back and she is picking up combinations with no problems." I nearly cried and told her what we were doing. In our case, adding Dr. Rao to our team of doctors has made quite a difference. We are only 2 months in and are hoping that this progress continues and that our daughter maintains what we have gained. She is at camp this week and we sent all four of her pill bottles along and I gave them to the nurse. I will be interested to see if it is easier for her to concentrate in school this year as well.

     

    In seeing Dr. Rao, expect to wait for about an hour past your appointment time before you are seen. However, also expect that Dr. Rao will be with you for anywhere from 30 minutes to an hour. He is thorough and takes his time with his patients.

     

    There is another family in our group that has had IVIG with Dr. Rao. This family convinced Dr. Rao to follow Dr. K's (Chicago PANDAS doctor) PANDAS IVIG protocol here locally. Please let me know if you have any additional questions!

  9. Our daughter was on a prophylactic dose of azith and when we had bloodwork run in May, her mycoplasma titer was 727 (normal should be 0 to 90). Our doctor increased her azithromycin to 250 mg every day and we are seeing improvements. She has been on this dose since mid May and will be on it indefinitely. She is scheduled for bloodwork to follow up on the titers in September. That bloodwork will probably determine how much longer we are on the full dose before going back to the maintenance prophylactic dose. She was completely asymptomatic for mycoplasma. She had no cough, no cold symptoms, absolutely nothing so I was amazed when her titers were high for it. She had been battling a return of mild to medium PANDAS symptoms for 5 months and we couldn't figure out why. Once we started the azith at a higher dose and added GABA (to battle her extremely high glutamate levels), CoQ10 (as she was extremely low on this enzyme), and zinc (as she was also deficient there), we have seen great improvements. She still has some residual anxiety, but it is gradually getting better. I don't believe that augmentin is effective in treating mycoplasma. I also believe that a course of antibiotics longer than 10 days is needed in PANDAS kids and should be followed up with bloodwork to determine i the infection has truly cleared.

  10. The scarey part about mycoplasma (as with strep) is that kids can be totally asymptomatic and have it. Our daughter had symptoms all spring and we couldn't figure out why they weren't going away. We had another blood draw done in May and her mycoplastma titers were 727 (the normal range is between 0 and 90). She is on her third month of azithromycin and we go back in for follow-up bloodwork the beginning of September. In our extensive testing in May, we also discovered that her glutamate level was high, zinc was low, and CoQ10 was low. She's on GABA to reduce the glutamate, zinc, and CoQ10. We've seen amazing improvement since adding all of the supplements to the azith.

  11. We also throw out tooth paste tubes since the toothbrush comes into contact with the tip. We throw away chap stick also. When we had strep repeatedly this spring with myself and our non PANDAS son, I even went so far as to wash our feather pillows and dry them on high heat. Since I also had it, I threw out most of my makeup and started over since my first round of clindamycin didn't get rid of it (allergic to penicillin and cephalosporins).

  12. We've seen two pediatric neurologists in Ft. Worth. One not a PANDAS person, the other open to it but not willing to do much at ths point.

     

     

    I really think I need someone who will be active and on board with her PANDAS dx since that is the major hurdle we are dealing with right now. She has 4 other serious dxs yet PANDAS is really the only one causing an issue right now. Thanks

     

    The group is just parents at this point. I will add you to the distribution list so that you can stay up to date on when we are meeting. I just e-mailed the list of local doctors to you!

  13. We're in Dallas.

     

    We are in Plano. I lead the Dallas area PANDAS support group. I have a list of doctors that families from our group have found helpful. Our daughter currently sees and ENT and an immunologist, both on the list, who have been amazing! If you would like me to e-mail the list, message me your address. If you would like to attend a meeting, you are welcome at any time. Our next meeting is the coming Monday. Let me know if you'd like additional information!

  14. This is our third full year of school since our daughter's PANDAS diagnosis. She is currently in the 5th grade and was diagnosed in January of 2nd grade. Now that we have three full years of MAP testing under out belts, I can definitely see a pattern. The MAP tests are tests that our school district uses to determine our children's knowledge and progress in various subjects. They are computerized tests and are given three times a year (fall, winter, spring). When I sit down and look at the line graph of her math MAP test results over the last three years, there is definitely a pattern. Scores are displayed on a line graph. Anytime that she has been in an exacerbation of symptoms during testing, the line drops dramatically. Anytime, she is symptom free, it shoots almost straight upward. They use these tests in our school as one of the determining pieces for honors math in middle school. Due to her test scores in the fall (taken when she was reacting to her classmates who had received flumist), she was denied honors math for 6th grade next year. Her score dipped to the bottom of the "river" where the majority of kids are. She received a 209. Her winter score during a time of no exacerbation jumped to 229 and her spring score during mild exacerbation jumped to 240 which would qualify her for honors as you must have 234 for entry. I have filed an appeal with the middle school in hope of admittance to honors as the teachers there are better and she needs a math teacher with good teaching skills. I find myself often reteaching what was taught in school. As you mentioned, memorizing basic facts is difficult for them. We'll be drilling multiplication facts over the summer along with basic skills so that she doesn't lose ground without review. These kids are capable of so much, it amazes me! They are resilient and wise beyond their years!

  15. I am confused as to why this is not posted under the Lyme forum??? Zith is generally used at much higher doses for treating Lyme.

     

     

    Our daughter is currently being treated with azithromycin. She has been on a prophylactic dose every M/W/F during the school year for the last couple of years. We noticed a return of mild symptoms this spring and had titers run again. Her mycoplasma titer should be between 0 and 99. It was 727. Therefore, she is being treated for a chronic mycoplasma infection which requires, in her case, azithromycin daily for 60 days. Azithromycin can be a drug used for our PANDAS kids. There are quite a few PANDAS kids in our support group who are on a prophylactic dose of azith. I'm hoping that it does not become hard to get due to this study.

  16. Here is the letter that I e-mail to our teachers each year. It could be tailored and changed a bit to go home to parents:

     

     

    Before the year starts, I wanted to take a moment to send some information out about an autoimmune disorder which Lillian has. This disorder is called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep). When a child has PANDAS, an autoimmune reaction occurs as a result of a strep infection. Instead of the child's antibodies attacking the strep bacteria, they breach the basal brain barrier and attack the basal ganglia causing swelling of the brain. The reaction varies child to child but may cause tics, OCD, separation anxiety, sensory issues, ODD (oppositional defiance disorder), change in handwriting and math skills, ADHD, and more. Also, if you notice a change in her behavior at school, please let me know.

     

    When Lillian was affected by PANDAS in January of 2009, her symptoms were OCD, which caused extreme anxiety, and separation anxiety. These symptoms appeared literally overnight. She went to bed one evening with no symptoms and awoke the next morning a different child, consumed with fears. After treatment with antibiotics and time to heal, she is now symptom free. She will begin taking azithromycin during the school year beginning Monday three times a week as a prophylactic antibiotic to prevent strep.

     

    I would ask that you inform me if anyone in your class or the 5th grade level calls in sick with strep so that we can take preventative measures and also watch her more closely for symptoms. Strep is the trigger for Lillian and needs to be avoided at all costs. PANDAS has been referred to as RF (Rheumatic Fever) of the brain. Lillian does not have typical symptoms of strep -- no sore throat, no fever. If she is directly exposed to strep, we need to increase her prophylactic antibiotic for several days. I ask, if you should ever be diagnosed with strep during the school year, that you inform me as well.

     

    I have personally been battling strep off and on all summer myself so Lillian has shown some mild OCD symptoms. She is starting Augmentin full strength today which should prevent her from having a major reaction and will hopefully make all symptoms disappear before Monday. At this time, my ENT and I are trying to decide if tonsillectomy is my only option since I am allergic to all penicillin drugs. Our major goal is to get rid of all strep in our household.

     

    If you have any questions regarding this condition, please feel free to ask as it has become my mission to raise public awareness so that children with PANDAS are not misdiagnosed and put on unnecessary psychiatric medications when a simple antibiotic may be all that is necessary to provide healing. Lillian is like any other child. She loves excelling in her work, spending time with her friends, and taking dance lessons.

     

    Here is a link to the WFAA story we participated in to raise awareness in May of 2010. This story includes a basic description of PANDAS:

     

    http://www.wfaa.com/news/local/A-side-effect-of-strep-93004404.html

     

    Here is a link to a fact sheet on PANDAS:

     

    http://www.pandasresourcenetwork.org/about-pandas/symptoms.html

     

    If you come into contact with any other PANDAS families, please feel free to share my e-mail address with them as I have started a PANDAS parent support group that meets once a month.

     

    Thank you so much for investing your time and energy in our children! We truly appreciate your efforts with them!

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