Debbie1 Posted November 23, 2010 Report Share Posted November 23, 2010 I know every kid is different, but I do want to get a sense of what others have experienced. For those of you who have had exacerbations post IVIG, how long did they last before symptoms started to calm down? ds9 is 4.5 weeks post IVIG # 3 and we have not had this severe of an excaerbation before. Previously, by the 3 week mark, there was noticeable improvement. This time his behaviors clearly intensified post IVIG and he developed two tics that he never had before. I am waiting for things to calm down, but it is tough to watch. We know he had a mycoplasma infection before IVIG and his strep titers were very high again (antiDNAse of 1360). I don't know if that is why our experience this time around has been rougher. Any thoughts? Link to comment Share on other sites More sharing options...
sf_mom Posted November 24, 2010 Report Share Posted November 24, 2010 (edited) Debbie, Did you ever test for LD/co-infections? Since he is worse post IVIG treatment further investigation of an underlying chronic infection is warranted. This seems very similar to the response my friend's son was having about 8 weeks out from each hdIVIG treatment. He also had three treatments in total. They finally tested for Lyme/co-infections and he was positive for Bartonella and Ehrlichiosis with indications of LD. Once they unraveled those co-infections he has made a complete turn around. His last hdIVIG was the end of May, they started treating for co-infections in June of 500 m.g. Biaxin and 300 m.g. Rifampin per day at 50 pounds. He no longer has any OCD, rages, panic attacks, etc. and only has a handful of remaining issues. I know Dr. B would be happy to help with appropriate preliminary testing via Igenex basic WB for $260.00 Was your son ever tested for Immune Complexes? If so, does he have any? A couple of things that might helps in the interim.... Kids with Lyme or several co-infections often have high histamine levels so nightly children's benadryl can help tremendously but it takes two weeks to have effect. Also for some reason magnesium gets strip from the body as well when several infections are at play. Kids Calm nightly can help with magnesium levels. -Wendy Edited November 24, 2010 by SF Mom Link to comment Share on other sites More sharing options...
Debbie1 Posted November 24, 2010 Author Report Share Posted November 24, 2010 Wendy, Thanks for the tips. He was tested for lyme and was negative. Immune complexes were in the normal range. The only things that did come up on bloodwork were a new mycoplasma infection and elevated strep titers again. He was switched from augmentin to azith to treat the mycoplasma. He stayed on the azith for 5 weeks. We switched him back to augmentin last week because we have azith resistant strains of strep here. Debbie Link to comment Share on other sites More sharing options...
sf_mom Posted November 24, 2010 Report Share Posted November 24, 2010 Debbie, I had posted an article about treating Mycoplasma and it can take 9 to 24 months to treat chronic infection. Most LLMDs would treat with multiple antibiotics until symptom resolution. How did you test for Lyme? Many standardized tests have a high rate of false negatives. If you tested via Igenex did he have any bands present? Sometimes it can take provocation testing to find out if its really there. Additionally, all my children's and my friend's child's results were negative for Lyme but they found co-infections and eventually DNA of Lyme via provocation. Mycoplasma/strep could be his 'only' underlying issue but would still recommend seeing an LLMD to help with appropriate treatment. They are very versed at eradicating the bug that can be difficult. Plus you would get the benefit of testing for additional co-infections. I know it means another Dr. but I think they can help tremendously at going at the current infection. I can put you in touch with many that have had success with 'Lyme Like' protocol for perspective. http://www.drgregemerson.com/fact-file/mycoplasma Anyway, happy to help. I think he would benefit from the Benadryl/Calm in the interim. -Wendy Link to comment Share on other sites More sharing options...
Mary M Posted November 25, 2010 Report Share Posted November 25, 2010 I know every kid is different, but I do want to get a sense of what others have experienced. For those of you who have had exacerbations post IVIG, how long did they last before symptoms started to calm down? Any thoughts? Our dd12 was in extreme exacerbation for 5 weeks post IVIg. Only then did things begin to improve, very slowly. She has had only 1 IVIg. She is now 5 months and 10 days post IVIg. Mary from Michigan Link to comment Share on other sites More sharing options...
Debbie1 Posted November 26, 2010 Author Report Share Posted November 26, 2010 Mary, Thanks for the reply. How is your daughter doing now? Yesterday and today were noticeably better for my son. Maybe we are turning the corner. Debbie Link to comment Share on other sites More sharing options...
texascatholic Posted November 26, 2010 Report Share Posted November 26, 2010 We are now 9 days post IVIG (her first one) and not having the greatest of times. Lots of anger, rages, stimming, tics, OCD...hoping things will calm down in time for Christmas. Just sent in blood for Igenex testing this week: Lymes and co-infections. God bless! Link to comment Share on other sites More sharing options...
Guest pandas16 Posted March 11, 2011 Report Share Posted March 11, 2011 What dosage of IVIG did you have? Link to comment Share on other sites More sharing options...
kimballot Posted March 11, 2011 Report Share Posted March 11, 2011 We are now 9 days post IVIG (her first one) and not having the greatest of times. Lots of anger, rages, stimming, tics, OCD...hoping things will calm down in time for Christmas. Just sent in blood for Igenex testing this week: Lymes and co-infections. God bless! Texas Mom - I am wondering about your Igenex Test - was the blood drawn after IVIG? You may want to call igenex to make sure they can test it that close to IVIG. If not - then perhaps you can get your money back before they run the tests. Link to comment Share on other sites More sharing options...
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