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Everything posted by Jtsmama

  1. Amazing to think this could work! Jt says he will volunteer! But he is deathly afraid of bugs!!
  2. Thanks for all the support! unfortunately, son is immune to Augmentin, Bactrim, Omnicef. He was on Zithro for 2mos. Then we switched to Biaxin x 5 mos, I think. Hoping to get things going soon, poor boy is hating life!
  3. Thanks for all the support! unfortunately, son is immune to Augmentin, Bactrim, Omnicef. He was on Zithro for 2mos. Then we switched to Biaxin x 5 mos, I think. Hoping to get things going soon, poor boy is hating life!
  4. Jt has been failure to thrive until starting IVIG. Started at age 8, at 35 lbs. In Jan was 80 lbs, had been for 2 yrs, taller but really skinny. In April has dropped to 67lbs. I fought for a tube, the docs were doing the "watch and see" game, as he was wasting away! At that time Immuno was managing Pandas, in March we returned to our amazing Neuro, who recommended G tube not Ng cuz he prefers crunchy foods and would have even more swallow issues. He prob wld have pulled it out! And its a long ride, less infection wish with a MicKey, tho he is OCD about the drainage. MBS showed normal just did it a few weeks ago. No deform, but we didn't get the complete workup due to sensory/meltdown. He tried his best! He eats very fast, drinks very fast. She thinks maybe some poor muscle when it comes to consistent swallowing. Told him to east/drink slower, that's all we can do.
  5. @ Jill, my support is my Mom, and my God for sure! He its co morbid with Functional Antibody Deficiency, Townes Brocks Syndrine. We have almost every specialty on board, appt with Endo next week, a new doc for us. Inf Dis has done nothing as far as abx, talked about diff abx on 2 wk cycle, never did. He did provide his IVIG for 6mos when we had Immuno issues to which I am forever grateful!
  6. A few months ago. Periactin made him evil! In the past we used Omnicef for years, no longer works. We tried Zithro when his tube was placed, no change, but he did have a tube infection from the start, prob why no response. Minor changes with Biaxin, when off he is def worse. Neuro does not believe in abx long term, so I am fighting to keep him on this! A few times after Low Ivig he had a 12 hr break of symptoms. Scig we are not seeing that. But he no longer uses steroids unless we have to! NSAIDS are not am option, he developed a severe reaction to them for 6 mos, was hospitalized with sores. But his PANDAS was a lot better then!
  7. My son has all the Anorexic thoughts..he's fat, he cries, freaks out to sit at the table. so I let him east whatever, wherever I can get anything in him. Whether its nachos, yogurt, dry cereal, I don't care at this point. He is at this point, eating sometimes if I fight with him, not willing to on his own initiative. Complains of no hunger, and his belly hurts. He was prescribed Periactin for years, switched to Marinol
  8. Pm me.. We went to Rothman. If u would like...
  9. Over the years, so I pushed for IVIG. Truly life changing for him! After 3.5 yrs, we very rarely get admitted into hospital, unless its GI, cuz of dehydration. If its multiple things missing, I felice the term is CVID. Check out the IDF website, great site! Have your PANDAS doc contact Dr B, I believe I read he is an Immuno, and Agressive PANDAS!! Praying for you!!
  10. My son also had a Primary Immune Deficiency, specifically low Pneumicoccal titers. Even after the Vax to boost it. Always has something he is sick with, mostly sinus, uri, gut issues. His is called Functional Antibody Deficiency. He fails to respond to the polysaccharide, immunizations, another name is Specific Antibody Deficiency. I think typical treatment is abx, but my son was becom ing Inmune to abx I've the years
  11. 11yo PANDAS son presented with Anorexia after switching from IVIG to SCIG in Jan/11. Gtube placed in April after losing too much weight. Currently on feeds day/night. Eats some by mouth, severe OCD with food. Participating in Feeding therapy x 3 months. Have any of your kids gotten to the extreme that they have a Gtube place? Contacted Dr T, just completed labs yesterday, awaiting results. His recommendation is PEX and HD IVIG. What can I expect to happen, over what time period (treatment wise)? Currently on Biaxin 5ml Bid, Hizentra for Functional Antibody Deficiency weekly and 24 other meds. My son has it all: severe tics, OCD, ADHD, insomnia, severe anxiety, suicidal thoughts (has attempted), intrusive thoughts. I think we have experienced it all! He is in a really bad place right now, and I am praying everyday that something gives...soon!
  12. You would not have to increase the drip rate for higher dose- just the amount of time it takes for the procedure. Lower dose IVIG is pro inflammatory, higher dose is anti-inflammatory. What abx is not working for him? Have you tried higher doses of either zith or augmentin XR? What helped my daughter alot when she had exacerbations while on full strength (treatment dose) zith, was to switch to a 2 week course of rifampin+augmentin to clean out intracellular bacteria, then go back to the full strength zith. He has built up a tolerance to Augmentin, and Zith from using for years. Was on Augmentin 14 days for an ear infection, and didn't touch it. We have used Omnicef for the PANDAS for the last 3 years. He was on low dose Omnicef then taking off after a few months. Then put on a high dose of Omnicef, but was on Abilify at the time and that med seemed to make the PANDAS worse. I asked Dr Murphy about using Pcn, Zith or Augm but she said they are not as broad spectrum and build up a tolerance quicker. The issue with the infusion is he would have to be admitted into the hospital for the high dose IVIG if he were to get it. I did ask the Inf Dis specialist about doing 2 weeks on one abx then switch to another then back. I have read that the kids get the High Dose, then what? they go back to their normal dose of IVIG if being treated for a PID, or what is the next step?
  13. My 10 yo son started IVIG 2 yrs ago for a PIDD, functional antibody deficiency in his case. Has helped alot with the immune problems. No hospitalizations other than belly bugs for dehydration. Has grown alot! We saw Dr Murphy today and am trying to get her to order the high dose ivig recommended by Dr K via email. He only receives 10g/mo Gamunex for the PIDD. We had the issues of getting sick when infusions were 4wks apart, then tried 3wks, better but not great, now he does them every 2 wks. He has had drip rate/headache problems from the first time, so have not been able to increase his dosage. I would love to talk to any parents that have tried the IVIG for PANDAS. The abx are not working at this point, so don't really know what to do with him. The Immuno doesn't know where to start, and the Neuro is not treating him for the PANDAS any longer.
  14. My son, age 9, gets IVIG, every other week. Small doses due to headaches/vomiting/aseptic meningitis reaction. We have found lots of fluids, gatorade for him, before, during, after. Lots of rest. And make sure they pre and post medicate. The pre and post meds make all the difference for him. Have tried to wean him off the meds, and all the headaches and issues reappeared. We pre-med with Solumedrol, Benadryl, and Vicodin (NSAID allergy). He is post-med with Prednisone, Vicodin, and Atarax. They also started giving him Bolus fluids before and after each infusion, has helped tremendously. Good luck with your infusion...hoping you get great results!!
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