Pudgeo Posted June 10, 2008 Report Share Posted June 10, 2008 Help, my son is such a wreck and I am not feeling optimistic that one IVIG can undo all has symptoms..I really would love to hear from anyone or a link to any old posts that were successful..I appreciate any help! Sarah Link to comment Share on other sites More sharing options...
P_Mom Posted June 10, 2008 Report Share Posted June 10, 2008 I know several PANDAS kids who benifited greatly from IVIG...I also know that it can take weeks, even a month, for improvement...hang in there!! By the way..how was the process and how did your son handle it? Link to comment Share on other sites More sharing options...
Pudgeo Posted June 10, 2008 Author Report Share Posted June 10, 2008 WE arrived at hospital around noon and they had IV started by 3pm..they gave him benedryl in case of a reaction and that made him fall asleep. IV lasted until around 8pm and then he woke up & was up all night! My son is used to needles etc so the IV was no big deal for him. Kaiser is saying they may only do one IVIG if we don't see improvement in the next 2 weeks..sigh SO like I said..I am not feeling very optimistic right now because he is a different kid from before all this..I wonder if he's still in there?? Sarah Link to comment Share on other sites More sharing options...
bmom Posted June 10, 2008 Report Share Posted June 10, 2008 Please keep us updated. I know that it can take a little time to work. Hope he improves!!! I was just reading a study the other day of IVIG that stated that IVIG improvement was usually not seen until at least the third week after treatment. Link to comment Share on other sites More sharing options...
bmom Posted June 11, 2008 Report Share Posted June 11, 2008 The study was the one that Pmom posted a little while ago. She had the link and then go down to IVIG and Pex document. It states that improvement wasn't seen for over three weeks. The good news is that is seemed like most kids only needed one treatment. I also spoke with Dr. K as a phone consult and he does IVIG. He said 80% of kids only need one treatment while others may need another. Anyway, I underlined in my doc. where it says improvement with IVIG took at least 3 weeks to see improvement. Link to comment Share on other sites More sharing options...
Pudgeo Posted June 11, 2008 Author Report Share Posted June 11, 2008 Thanks for the encouragement...just when I think he can't get worse he does.. So I'll try to be patient and wait..also I will try to find that old post.. Sarah If anyone has gone through this please email me PUDGEO@aol.com Link to comment Share on other sites More sharing options...
evie Posted June 17, 2008 Report Share Posted June 17, 2008 I am strongly considering IVIG for my son, however I would like to speak with a few doctors who have experience with this for PANDAS before I go ahead with it. I had a phone conference with Dr. K in the Chicago area, but I am searching for other doctors that have had positive results with the IVIG. Would you mind sharing with me who your doctor was that ordered the IVIG? Were you successful in getting your insurance company to pay for the procedure? I am currently going in circles with BCBS - I can't get any clear cut answers. Thanks, Evie Link to comment Share on other sites More sharing options...
Pudgeo Posted June 17, 2008 Author Report Share Posted June 17, 2008 Hi Evie, I went around and around with Kaiser my HMO for a year..my son was a mystery..none of the Dr could figure out what was wrong..we were on every kind of med you can think of and nothing helped..I had mentioned PANDAS to my pedi a long time ago and he said NO..so when I did get my sons PANDAS test back and it was abnormal..my pedi fianally started to take me seriously. I saw Dr Gupta at Univ of Irvine and he said Yes my son would probably need 4-5 IVIG's to get better. My pedi then agreed to do the first one for me(I think because he felt bad for mis-diagnosing my son). So Iwas really lucky to have Kiaser do IVIG for me! Alot of the Dr have no idea what they are doing with IVIG for PANDAS. My pedi called Dr K in Chicago to find out what to do! Unfortunately my son get worse & worse. It has been 17 months now that he has not been the same. It has been a week since the IVIG and I see no improvment at all. He is a zombie with OCD right now. I had a porphyrins test done and he has a tom of metals in him so I am going to chelate him next week. I am convinced that the metals are what messed up his immune system..He never had any problems before a 3 day fever he had ..and now I am wondering if the fever triggered something that was started by metals in him... I am supposed to see pedi on Friday and I know he is hoping for good news and I don't have any right now..If Kaiser won''t do another IVIG for me I will go to Gupta and pay to have it done..Sarah P.S. another Mom I know did IVIG through Gupta and she submitted the bill to her insurance and they reimbursed her for half! She was totally surprised! Link to comment Share on other sites More sharing options...
michele Posted June 17, 2008 Report Share Posted June 17, 2008 Have you tried Nystatin or Dyflucan for the metals detox? It helped us alot. Also compounded amino acids help to put his system back into balance. Did you try any traditional medications for the ocd? We are now on 2mg abilify and it is helping. Some have suggested cortico pulse steroids have helped in severe case. My son's PANDAS came on after a very high fever and a positive strep culture. The finger movements and eye blinking came on with the fevers. I also thought fevers had something to do with it. One of the Dr's laughed at me and said fevers don't cause that! I could still strangle her for laughing at such a serious matter. She said the twitching movements were just an indicator he was getting sick. We had given shots right before all this came out. He was high in heavy metals also. My Dr. calls this an immune issue also. I just wish we could find a cure. My son is medicated which helps but does not take it away. Please keep us posted on the IVIG progress. What about the plasma tranfusions? Any research you find please let us know. Has Dr. Gupta helped fix someone with PANDAS? That is reassuring if he did. Please keep the success stories coming. Michele Hi Evie,I went around and around with Kaiser my HMO for a year..my son was a mystery..none of the Dr could figure out what was wrong..we were on every kind of med you can think of and nothing helped..I had mentioned PANDAS to my pedi a long time ago and he said NO..so when I did get my sons PANDAS test back and it was abnormal..my pedi fianally started to take me seriously. I saw Dr Gupta at Univ of Irvine and he said Yes my son would probably need 4-5 IVIG's to get better. My pedi then agreed to do the first one for me(I think because he felt bad for mis-diagnosing my son). So Iwas really lucky to have Kiaser do IVIG for me! Alot of the Dr have no idea what they are doing with IVIG for PANDAS. My pedi called Dr K in Chicago to find out what to do! Unfortunately my son get worse & worse. It has been 17 months now that he has not been the same. It has been a week since the IVIG and I see no improvment at all. He is a zombie with OCD right now. I had a porphyrins test done and he has a tom of metals in him so I am going to chelate him next week. I am convinced that the metals are what messed up his immune system..He never had any problems before a 3 day fever he had ..and now I am wondering if the fever triggered something that was started by metals in him... I am supposed to see pedi on Friday and I know he is hoping for good news and I don't have any right now..If Kaiser won''t do another IVIG for me I will go to Gupta and pay to have it done..Sarah P.S. another Mom I know did IVIG through Gupta and she submitted the bill to her insurance and they reimbursed her for half! She was totally surprised! Link to comment Share on other sites More sharing options...
Pudgeo Posted June 18, 2008 Author Report Share Posted June 18, 2008 Hi all.. Still no improvement..worse than ever.. OCD is off the charts.. Hoping for a miracle! Sarah Link to comment Share on other sites More sharing options...
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