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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 not to worry about the work. I was put off by her dismissive attitude and decided that I have to be more pro-active. Therefore, I have requested a CSE to seek a classification of Other Help Impaired. The Dr. wrote the letter as Auto Immune Encephalopathy and stated it was medical illness, not a psychiatric illness. We are also requesting an inservice from a Pandas knowledgable medical professional for the teachers and staff. Hopefully, she will be able to attend a truncated day with her core classes midday and specials on either ends.
  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 see a well known pediatric rhuematologist in NYC who said she had CFS and must learn to live in pain. I will definitely pursue Dr. O, I saw her at a recent conference and really liked her.
  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, often complains of sore throat. Symptoms from worst to least are; joint pain, fatigue, OCD, chest pain (previous), inability to concentrate, irritability, light sensitivity, dilated pupils, skin sensitivity (rashes and nighttime itchiness), tics, jerks in her sleep, drooped eye lid. OCD includes perfectionism, compulsions with even #'s, separation anxiety, and a belief that the floor is unsafe. She has not put her feet on the floor in months. There are other ocd symptoms but these are consistent. We started CBT 2 months ago. IGG, IGM and subsets were first tested in July 2013 and low. Ivig was recommended but never coordinated by the treating dr. Her levels decreased over this past year and the request was approved by BCBS in Dec. We did HD in Jan and March and next one is scheduled for May. She had 10 great days after the first infusion, but Dr. T said it may have been the steroids. No improvement after the 2nd. DD also had bad headaches, increased tics and horrendous restless legs after infusions. We initially started our journey with a neuropsychiatrist in NYC, we then went to Dr. B and are now with Dr. T. I also see an integrative MD. The integrative MD said he is treating her for PANS, CVID, viruses (coxsackie, hsv, hhv, myco, and candida) and believes she has parasites. We have not yet done stool testing. She recently broke out with a rash on her arm which I thought was eczema. It was long a narrow. At the same time, she also had the butterfly shaped rash on her face that looked like hives and a sunburn kind of rash on her hands. This all happened after about 10 mins in the sun, so I thought it was a reaction, Integrative MD did not agree. He said his next step is to do an MRI, thinks her inflammation is out of control. He also wants to focus on parasites? Igenex IGM results ** 23-25, **31 IND, **34 -, **39 IND, **41 IND. IGG results are same (bands and **) with 39 + and 41+++. These results have been read by above dr.'s and I have been told they are negative. However, I live on Long Island, NY, so lyme is common. Dr. B prescribed bactrim due to clinical presentation. DD took this for approx 60 days and developed tremors. Hand shaking, internal tremors and a drooped eye lid. Dr. T stopped the bactrim in Dec 2013. Tremors have improved, but are not gone. 23 and me results came back with MTHFR A1298C hetero. MAO and MTRR are homo. VDR, MTR, BHMT, AHCY and CBS are hetero. She has high ammonia, glycine, 3met histidine, lactate. Low VitD, pyruvate and copper. Integrative MD ordered weekly IV leukovorin, b6, mb12, glutathione, lysine, VitC, calcium & magnesium, NAC and solumedrol. Prior to this, she was on 2mg daily of valtrex for the past 5 months (this helped her chest pain enormously). She has only had 4 infusions so far. We have not seen any improvement but she is not worse. The only new symptoms was jaw pain today. Her oral supplements are IGG 2000 df, ProDHA 1000 2 caps daily, VitD 5000 and Alpha Ketoglutaric 300mg. Probiotic (ortho molecular products) 225 billion - 1/2 sleeve daily and klaire sacch B 3 billion daily. Current meds are doxy (200 daily), celebrex (200 daily), fluconazole 200 daily. She is on a yeast free diet with no dairy, but its hard to stick to it! DD has been homebound since Thanksgiving. She lives in pain, but her symptoms do fluctuate. On a good day, she can do school work and go on the trampoline for a little while. On a bad day, she can not walk and will tell me that I hate her 1000 times. She also has some superficial self injurious behaviors which we are addressing with the psychologist. Sorry about all this info, just so overwhelmed. Not sure if I am going in the right direction or what else I can do? Any input would be greatly appreciated. I also sent a packet into Dr. O in ct to schedule a 2nd opinion appointment.
  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 suggestions would be to follow up with phone calls to him until you have what you need and to request an rx for prednisone in advance. Also, I have bcbs and it was covered. I called my employer (union) and was connected to a bcbs rep who contacted dr t. The claim was submitted by coram with a dx of immunodeficiency. My dd is 74lbs, they quoted me $8282, as I had planned to pay and not wait any longer. You also mentioned waiting for dr. B. I was very frustrated by the experience. Although he expressed his plan for her care, nothing happened and over a 6 month period, her health declined rapidly. I really don't want to project any negativity, my mistake was my ignorance because it took me way too long to realize I needed another plan. When I contacted dr t, I was desperate. But that was a good decision, within 4 weeks of our initial appt, we have significant progress!
  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 week she is having hot flashes a few times a day which include sweating and a cold clammy feeling. She drinks a lot of water w her meds but I will try to hydrate her all day. Any suggestions? Our appt is tues to review results.
  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 dd25 also needs treatment, as she has suffered from chronic sinusitis, strep, upper resp infections, OCD, depression, anxiety, ADHD since age 5. By that point, I had already asked dd25's primary md to order blood tests, so Dr B requested to have the results sent to him. Unfortunately, they were not received in time for our 2nd appt with Dr. B (we saw his assistant) but I have since emailed them. I tried to schedule a phone conference, but none were available and must wait until our next appt in late September (for both of my girls). DD25's results were Anti-Dnase 258 ( 0-120) Aso 340 (0-200). She currently has no symptoms but has had a few sinus infections this summer. No strep tests were done. I am hoping to have some questions answered so things can continue to move in the right direction. It has been an overwhelming long and painful pandas journey and I truly can find no further patience. I scheduled an appt with dd25's primary md, but he has no experience with pandas. Do these results indicate that she is a strep carrier? Any suggestions regarding antibiotics? Dd11 is now on Augmentin and Azithromycin. If dd25 is a carrier, when is it safe for her to see her sister? dd11 is immune def and Dr. B's office is requesting approval for IVIG. She has had a rough summer and starts middle school next week. Any suggestions or info would be appreciated.
  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 mentioning pandas, all providers shrugged and said its controversial. The best she's done is on a yeast free diet. Then, her heels became inflamed , called sever's disease, adding an orthopedist. She has been on crutches since 1/12/13 with little progress. I have appts with 2 pediartricians hopIng pandas will be an available topic to explore. I also scheduled a rhuemotolgist for next week. I called Dr T in NJ who will see us, however, I am looking for a provider who will accept insurance and who may be closer. I am open to any suggestions or referrals. Thank you.
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