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Thesuzie

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About Thesuzie

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Profile Information

  • Gender
    Female
  • Location
    Long Isalnd Ny
  • Interests
    DD12
    Chronic sinusitis since 12 months.
    Chronic night cough from 3 months through age 8.
    GERD from birth to age 8
    Frequent strep
    Mild tics -head throw, throat clearing age 9
    Onset of PANDAS 1/12. DX of PANDAS 4/13. DX of PANS 12/13.
    CVID
    Chronic symptoms since 9/13.
    Treatment abx, ivig
    GF diet
  1. My DD14 uses immitrex after ivig for the migraine and it works.
  2. DD13 is scheduled at Georgetown next week. We really have not gotten too much info regarding the process, side effects, supplements during the week, what to expect after? After so many disappointments, i am finding it difficult to be hopeful. I would appreciate any feedback. Thanks!
  3. We have seen all of these dr.'s mentioned and have pulled what we could from each one. However, as mentioned, also have experienced roadblocks along the way. If you are seeking a "responsive" pandas doctor, I agree, Dr. Tom Moorcroft is exceptional. You will get a call back and you will also get a follow up call a few days later. He is very knowledgable and thorough. His staff are all very kind.
  4. My DD12 has been homebound since last November. She has been unable to attend school and has received home tutoring. I have to admit that I have not been too concerned about school because we have been so wrapped up in her symptoms, school has been an afterthought. Now, looking forward to 7th grade, I have hired an educational advocate who pointed out that the hours she was granted through the 504 for tutoring were insufficient. (she couldn't complete them anyway because she was too sick) When I met with the principal in June, she told me that my DD would just be placed in 7th grade and n
  5. Thank you all for these responses. I am not home now to review her test results but I know she has had negative ANA, sed rate, cpk but +mycoplasma in the past. When she developed the rash, we took her to the walk in ped center and the Dr said it looks like lupus. I googled pic's and that was exactly it. The integrative md said he will focus on treating her inflammation, but did not explain how? I have also been to a local LLMD (supposibly) who wasn't too helpful, he actually ordered the ingenex but when we went back with the plan for ivig, he seemed put off. In addition, she did se
  6. Hoping for some feedback. This story is too long, so I will try to only hit the highlights. DD 12 has gotten progressively worse for the past 2 1/2 yrs. Diagnosed with PANDAS April 2013 (only bc I couldn't find a dr) and PANS Dec 2013. Over the past year, she has been on Cefzil, augmentin, azithro, bactrim and now doxy. ASO has fluctuated over time. Currently normal. AntiDNAse have been very high, most recent test was 1070 (normal 170). While on antibiotics, her tics subside, but her other symptoms are severe. She no longer has repetitive strep or chronic sinus infections. However, o
  7. Dd12 just had ivig ordered by dr T on Monday and Tuesday. We also live in NY and used a local infusion company. I have to admit, it took daily phone calls to get all of the orders completed and corrected and it was pushed back a few days. However, from what I have read on this forum, he covered all bases with the dosing and medication and the whole experience ran smoothly. The nurses at coram infusion were great. On weds, she had a killer headache, I had read about prednisone and had some left over from a recent respiratory illness. I called dr t and he approved the same dose. So, my only
  8. What is the orange on teeth from? My dd has had this and the dentist said bacteria. It was before Things got bad and I did not make the connection.
  9. In response to the post regarding tremors, my dd11 started with hand shaking and a feeling of jitteriness throughout her body 3 weeks ago. She relates it to having an albuterol treatment. It has not gone away but is lessened when she is rested. Her heart rate is normal. The first dr recommended Motrin which did not help. The 2nd dr took her off bactim ( she was on for approx 8 weeks) And added valtrex. Her overall symptoms have slightly improved as she has had 3 days out of 12 in which she could get out of bed. He redid all her bloodwork, 24 hr urine and courtagen (?). Now, over the past
  10. Hello. My union rep has requested verification that IVIG is the necessary treatment for Pediatric Autoimmune Encephalopathy. She requested documentation that is not too involved or complicated that can be easily cited. I have a letter from the Dr, but need to back it up with documentation. DD is also dianosed with CVID. She has been on augmentin, Azith, and bactrim for 6 months with no improvement. Newest symptom are tremors, we are desperate. Apparently, as a government employee we are self insured and with approval of our board, I do not have to wait for BCBS to review. Thank you!
  11. I just received results from immunologist yesterday, dd11 had 0 of the 14. She has low overall igg serum and low igm. Dr said the diagnosis is cvid. Ivig approval should be a "slam dunk". My fingers are crossed, it's been so long since she was well. I know basically nothing about immune deficiencies so any input or info is appreciated.
  12. This is interesting. My dd11 has experienced terrible joint pain. Although she has so many pandas symptoms, the joint pain is consistently the most severe. When she has a flare, we can not touch her. She also has rls occasionally. Any suggestions for joint pain? She's on augmentum and azith, waiting for ivig.
  13. My dd11 flares every time she has interaction with my dd25. Thankfully dd25 does not live with us, but she visits every weekend and hates to be away from her little sister. Dd11 was diagnosed with pandas in April and started Duricef 500mg 2x's daily and prozac. Tics decreased significantly but severe joint pain, chest pain, ocd and self hatred have only slowly decreased. After dd25 visits, dd11 complains of sore throat, debilitating joint pain, chest pain, and makes statements of self hatred. Dd11 had the initial appt with Dr. B in July and he said that he would not be surprised if dd
  14. My 11 yo daughter has complex and vocal tics, OCD, extreme fatigue, joint pain, episodically for 2 years. Symptoms are brought on by illnesses such as strep, upper respiratory infections and viruses. Each episode appears to be more severe, it now includes chest pain. She is sick very frequently and each time her behavior worsens and she becomes more dependent and regressed. The pediatrician tells me she has Tourette's and dismisses the other symptoms. I have brought her to a neurologist, immunologist, infectious disease, cardiologist, nuero psychiatrist, psychologist and homeopathic. When m
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