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Everything posted by JenniferG

  1. Unfortunately, my provider will only prescribe to the a certain infusion company. (He owns it). Not my preferred scenario, but kids are healing.
  2. They would, at any dose, but my physician is not in network. So I have to meet my out-of-pocket and out of network deductible. Which is $16,000 for the year.
  3. We started IVG and did the 3 month set of labs. Trough IGG levels are good but IGA went down. Does that make sense. They went below normal.
  4. We did 3 doses of LD and stopped. It only made things worse. We just did our 4th HD and are doing very well!! Getting less sick, less anxiety, less OCD. I have twin boys and they are about 3lbs difference. And the dose is 5 grams different. I am planning on asking to bring up the lesser one. I see a big difference with just the 5 grams. They are supposed to be on 1g/kg. Ends up being 1.1 and .9 with their current weight. Their LD dose was .6g/kg. It is amazing what such a small difference makes. They do flare though with each infusion for about 3-5 days. With LD it was 3 weeks.
  5. Thank you. How do you treat viruses? My boys have chronic Herpes. If they are not on Acyclovir 200mg 3xday all breaks loose. They break out in cold sores and have behavior flares. They also have yeast too. Which we have tried to treat for years with several different things. As of right now, the consensus is that their immune system is so screwed up they react to all treatments. The hope is that IVIG calms things and the other issues can be treated. OR, once the IVIG calms things will everything else subside??
  6. I was wondering if anyone has multiple diagnosis of CVID and PANS and noticed that once the PANS was healed or not in a flare if the their IGG levels rise and actually don't have CVID?
  7. If my boys had LD IVIG on July 10, when can they get serotypes drawn that will be accurate?
  8. Once you received IVIG did the chronic sinusitis clear? Was it HD or LD? How long did you continue? Thank you!!
  9. So we just did our first and they flared. It was .5. Do you think it was the HD or LD that did it for your kiddos?
  10. So we did .6g/kg a week ago yesterday. It put both boys in a flare. I left a message for Dr. B, but he hasn't returned the call. I am waiting to hear back from ID (that is who we did it through). Any suggestions? i put them on Motrin in the meantime. Would I continue with the LD in 4 weeks? Will things get better as it wears off and then get worse with next infusion?? Thanks,
  11. We had our first LD IVIG (.6g/kg). We had difficulty deciding between HD and LD. Our PANDAS MD suggested HD 1g/kg) and said LD would put them in a flare. The Infectious Disease MD said LD for the CVID. Insurance covered the LD not the HD. Monday was the first treatment and as the days go by they are becoming more and more in a flare. I was wondering if there is anyone with a similar situation and if the flare lasted until the next treatment....5 weeks. And, did they stay with LD or switch to HD. So discouraging. Thank you.
  12. Wow!! Could you tell me what gene? Did you do 23andme?
  13. My boys recently saw Immunology and they did a slew of bloodworm for Immune Deficiency. Of course, I have the results and our appointment isn't for another week. Has anyone had Mitogen Lymph testing (T cell function)? I was wondering exactly what it means when it is low to specific antigens. Theirs were low to Candida, Turberculosis and Tetanus Also had low IGG, IGA, CD3 & 4 and Natural Killer Cells
  14. Bumping for updates. I am am very curious about this as we are deciding between high dose and low-dose I VIG. And I am wondering if doing the CBD oil along with a low-dose IVIG would be beneficial for my soN. I have two different doctors suggesting I VIG but one at high dose and one at low-dose. We have an immune deficiency and pandas. I went to the bluebird website to order but there are too many different options. What are you starting at?
  15. How low does low have to be to considered an immune deficiency? Just below normal? Can PANS screw with these numbers and there really be a deficiency? We are being tested because ion on going ear and sinus infections (10-15 a year since 6 months old, with little or no resolve).
  16. Anyone dealing with a diagnosed Immune Deficiency and PANS/PANDAS? What are you doing for treatment? Thanks.
  17. In a way, it's relieving to know why they are always sick. But, now, to make the decision as to which IVIG route to take is making us crazy.
  18. So it's not monthly....forever? Even though they have CVID?
  19. Have you since stopped LD? Or, do you do 6 months on and 3 months off? Did you notice they were sick less often?
  20. We recently saw Infectious Disease and Dr. B. ID says to do LD IVIG to help the CVID which will decrease infections therefore less flares. Dr. B says HD IVIG for the "PANS Protocol" and the LD will put them in a flare. Experiences? Thanks.
  21. Has anyone seen or heard of Dr.Nick Bennett at CCMC Immunology?
  22. Thank you. Would you mind telling me what dosing and frequency you used? Was it daily or just with flares? Thank you!!
  23. Thank you. Would you mind telling me what dosing and frequency you used? Was it daily or just with flares? Thank you!!
  24. I have tried to empty my mailbox. Must I empty it totally???
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