Cassi
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Everything posted by Cassi
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What Texas conference?
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Laure, How Awesome, I am so excited for you. My dd9 was doing great for 6 months, but has now regressed. What is ART and do you mind me asking the name of your Doctor?
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My daughter sees Dr. Jones in Connecticut and I have recently discovered I have lyme as well. I live in Texas and there are no lyme docs in the state. I thought that since I already fly to Connecticut for my daughter, I would schedule an appointment for myself in the area. Can anyone refer a doctor in the Connecticut or New York area?
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I talked with Dr. Schaller yesterday and he said he could see my dd9 next week. Does anyone have him as a Doctor or have heard anything about him?
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Has anyone tried homeopathy, functional medicine, or gfcfsf diets to treat PANDAS? If so, was it successul?
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IVIG infusion in Houston, TX area?
Cassi replied to GraceUnderPressure's topic in PANS / PANDAS (Lyme included)
I live in Houston also and I'm currently looking to try to find a place for my dd9 to get IVIG done as well. Someone mentioned to me trying to do the IVIG at home. With a doctors order, you would receive your medications delivered to your door and have a home health nurse administer your medications and stay through the entire infusion to watch for possible side effects. Amerita is one infusion company that offers IVIG for in home therapy. Has anyone done this before, and if so, was it succeful? -
Did she have rages prior to getting the IVIG?
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Hi Texascatholic, I live in houston and am thinking about getting the IGENEX test done for my dd8 as well. There are no doctors that I know of either in Texas. As it looks like we do have to travel, can anyone recommend a good lyme doctor - even in another state.
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We live in Houston and my daughter's doc is Dr. T, treated via the phone. He is recommending finding a place in Texas to do the IVIG instead of flying to New York to get it done. Has anyone done this before? I'm not sure how to go about doing this. Any suggestions? Thanks, Cassi
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My dd8 has myco p and I've read a lot of parents talking about getting the lyme testing from Igenex. She had the western blot done by quest and it came back negative. I went to the Igenex web site and was so confused on what test to order. There was the basic lyme panel, complete lyme panel, Initial lyme Panel & complete Co-Infection Panel. Which one do I order? I also couldn't find the pricing of the test either. Can anyone lead me into the right direction? Thanks, Cassi
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How is she doing today?
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DOES THIS SOUND LIKE A PANDA CASE? HELP!
Cassi replied to swarmie's topic in PANS / PANDAS (Lyme included)
My daughter had low titers and we did the cunningham study anyways. Her scores came back really high. I called Dr. Trifelitti and he put her on abx and ordered some other blood work - one of the labs was mycoplasma infection. It came back really high and Dr. T said this what was causing her symptoms and not strep. So my dd had PITANDS. Other things like mycoplasma and lyme can cause the same symptoms as strep. Doctors usually test for strep first because it's the most common. See if you can get the blood work for mycoplasma and the lyme western blot -
How is your dd behavior post IVIG? Has there been any improvement after the IVIG?
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My dd8 lab results for mycoplasma just came back and it showed her IgG was 3.27. Her Cam Kinase level is 181 & her ASO & Anti-DNAseB levels show in the normal range. What does it mean if she has a mycoplasma infection? Can mycoplasma also cause PANDAS? She did the lab work after being on 250 mg of zithromax for 7 days. Does it mean that she currently has pneumonia or does it mean she had pneumonia at some point? If anyone knows more details about mycoplasma and could share the information with me, I would greatly appreciate it.
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Hi Saidie, I saw your post about Dr. Infante. I live in Houston & just received my daughters Cam Kinase score of 181. I'm now trying to decide whether to fly to one of the more experienced Doctors, or see Dr. Infante or Dr. Rao in Dallas. What was your experience like with Infante? One of Infante's requirements was for my dd8 to see a neurologist to view eye blinking-did you do ...
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My daughter's dad is a skeptic on PANDAS. It would be very helpful/important for me to know why you went from Rao to Infante? I guess what I'm asking is why did you choose Infante or Rao? Can you please respond ASAP with that information and I appreciate all of your help.
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I just received my dd cunningham results & her CamKinase is 181. I talked with Scott yesterday to see if I could make an app't with Dr. Infante. He asked me if my dd has seen a neurologist yet - she hasn't. Did your child see a neurologist prior to seeing Dr. Infante? What was your first appt like? What was his recommendation for treatment for your child? How long did it take ...
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Has anyone seen Dr. Anthony Infante in San Antonio? If so, what are your thoughts? Does anyone have any other suggestions on Texas Drs?
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I sent an email to pandas-research@ouhsc.edu and they sent me a reply the following day. If you haven't heard back from them, Kathy Alverez' email is kathy-alvarez@ouhsc.edu.
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It is amazing and a blessing to see so many parents that are overwhelmed with their own struggles, still take the time to help other children and parents as well. Thank you all so much for your suggestions. DD8 has calmed down, she had a good evening and morning. I gave her risperdal last night and we will slowly start taking her off the zoloft. I am still looking into antibiotics. Thank you again!!!!
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Thank you everyone for your thoughts and suggestions!!! Several people suggested trying an antibiotic; however, I don't know how to make that happen. Her pshyciatrist doesn't think she has pandas so she won't prescribe it. Her pediatrician doesn't know anything about pandas so she won't prescibe it. The pandas doctor that is closest is in San Antonio and they won't see her until the cunningham study comes back and she sees a neurologist. She just had her titers tested last Friday and they came back fine, so she doesn't currently have strep to give her antibiotics for. Momcap, when you put your ds on risperal, did it help him even though he had pandas at the time? I guess my thought is, right now I don't have a prescription for antibiotics and I don't have a way to get one. I do; however, have a prescription for risperdal - .25 mg. Should I at least try this first along with motrin to see if this helps? Also, if I go this route, should I wait to admit her after I give the risperdal a try for a few days?
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I am currently waiting to get the results back from the cunningham study to see if my dd8 has pandas. She is currently on 50 mg of zoloft and her doctor is wanting to put her on risperdal. I wanted to wait and see what the results of the cunningham study came back with before I put her on risperdal. However, my dd8 is getting uncontrollable. She put a knife to her throat this morning and threatend to kill herself, last night she threatened to kill me. Her doctor told me I can't wait for the pandas results to come back that she really needs to be admitted and that she start taking the risperdal. HELP. She is uncontrollable right now. Do I continue to wait for the results to come back and not put her on the risp. Do I put her on the risp now and then when the pandas results come back if she has it then take her off the risp? Do I admit her to a hospital?
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ASO & Anti-DNAse B results interpreted
Cassi replied to Cassi's topic in PANS / PANDAS (Lyme included)
Wow, thank you for the encouragement Kara! And the chart your sent EAMom was fascinating and very helpful. She had a hard time getting clothes on this morning and it turned into a tantrum and then in the school parking lot she pulled my hair, hit me & threw her shoes at me (for everyone to see). I'm having a hard time deciding if I punish her or if this is the disease that's causing this. Thank you again for all your help -
I had my DD8 pediatrician, who is not a pandas doctor, perform the ASO, Anti-DNAse B & platelet labs. The results stated: ASO: 16.3 Anti-DNAse B: <1.6 platelets: 352 The pediatrician's nurse called me with the results and said they were fine. Does anyone know how to interpret these results because it is all foreign to me. I am currently waiting for the Cunningham results to come back, so until then I am waiting to see a pandas doctor - trying to get all the pieces together first.
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Have you looked into doctor Infante in San Antonio for pandas - his number is 210-704-2187. In regards to the food sensitivies, I have a friend who went this route for her daughter and she is a totally different child (for the better) - She used Dr. McManus at the Woodlands Institue for Health & Wellness, they do all the bloodwork, get you started on the diet help you through the process, etc. They are located at: 26110 Oakridge Drive, The Woodlands, TX 77380 Ph (281) 298-6742 Fax (281)419-1373 www.TWIHW.com As far as the support group meeting, "3BoysMom" started it on this message board. I sent her a personal message through the forum and she replied letting me know that it was Thursday, September 30th 2010 6:00 PM - 7:30 PM Montgomery County South Regional Library - Children's Room 2101 Lake Robbins Drive The Woodlands, Texas, 77380 Hope this may be of some help and maybe I might see you at the support group meeting next thursday