melanie Posted October 3, 2009 Report Posted October 3, 2009 Its been 3 weeks since the IVIG treatment and Ive got to say things are pretty darn great around here. Sure hes still ticking a bit remember Danny's tic are mostly cursing.He has a foot twisting tick but were trying to get him to tap instead of twist. Its funny ,,that twisting is exactly like Sammy's twisting on the video.Any way we are sooo happy and sooo blessed to have had the treatment .Now I know the issues he was having has to do with the brain the Basil ganglia to be exact.Or thats what i am to assume because thats what the IVIG targets Right?/??My new question is how long does the IVIG last ??Please all of my smart IVIG PANDAS friends that have saved our son and our family and who I will be grateful to forever..Is there an answer?Or do I just wait and see Melanie and Danny
bronxmom2 Posted October 3, 2009 Report Posted October 3, 2009 Melanie, I don't know the answer to your question, but I'm so glad Danny's doing well!
ShaesMom Posted October 3, 2009 Report Posted October 3, 2009 Its been 3 weeks since the IVIG treatment and Ive got to say things are pretty darn great around here. Sure hes still ticking a bit remember Danny's tic are mostly cursing.He has a foot twisting tick but were trying to get him to tap instead of twist. Its funny ,,that twisting is exactly like Sammy's twisting on the video.Any way we are sooo happy and sooo blessed to have had the treatment .Now I know the issues he was having has to do with the brain the Basil ganglia to be exact.Or thats what i am to assume because thats what the IVIG targets Right?/??My new question is how long does the IVIG last ??Please all of my smart IVIG PANDAS friends that have saved our son and our family and who I will be grateful to forever..Is there an answer?Or do I just wait and see Melanie and Danny Hi Melanie, Glad to hear things are going so well. The actual "life" of the immunoglobulins that he received through IVIG is approximately 3-4 weeks before they start dieing off naturally. However, this doesn't mean that he will slide backwards. I believe Dr. K thinks it takes approx 3 months to see the most benefit from IVIG and it may take a full year for "complete" recovery. If he starts to slide backwards you should consider having the immunological blood work done to see if he has an underlying immune issue. We just finished round four of IVIG and the improvements are amazing!
chrisw Posted October 3, 2009 Report Posted October 3, 2009 Hi Melanie, I'm SO glad to hear that you are seeing improvement! Were you able to secure prophylactic antibiotics for Danny? Without them, he WILL be vulnerable to strep and if infected, he will likely regress. The antibiotics are part of the IVIG equation for success. I hope I'm not preaching, but IVIG is so expensive and such a big deal to not give it every opportunity for success. My son had IVIG in April of this year and continues to do well. Overall he continues to be about 85-90% better than before IVIG, but I can STILL see MILD behaviors (usually just one at a time and manageable) return occasionally and then fade away. I believe this occurs from being exposed to germs at school everyday. His overall health continues to be good and the few times he has acted as if he is going to come down with something, his immune system seems to fight it off quickly. I would say that the IVIG was a successful treatment for him, but I really believe he would be back to where he started or close to it without the protection of the abx. The abx. gives the IVIG an opportunity to work and possibly time for the immune system to "learn how to behave" properly. I have NO regrets about doing the IVIG and would do it again if neccessary. I am SO happy for you and Danny and I pray for continued improvement. Christie
KeithandElizabeth Posted October 3, 2009 Report Posted October 3, 2009 Melanie: I have been thinking about you since we both did IVIG around the same time. I am soooo happy that things are going well for you. YEAH!!!! We are improving as well, but we hope to do more IVIG treatments (once a month for 6 months) because our son failed the pneumo titers on his immunological blood work. The doses will be significantly smaller than the original dose. I agree with the previous responses about doing the immunological blood work up as well as a year of antibiotics. If your doctor emails Dr. K, Dr. K will give his recommendation of 1 year of augmentin. Most doctors just need this recommendation to feel secure in prescribing the antibiotics. Dr. K did say that we would slide right back to where we were if our son got strep during the first year of healing post IVIG! He did say the after 1 year, if the body is healed, then we would not need antibiotics anymore. Once again, I am thrilled that Danny is doing better! Elizabeth
faith Posted October 3, 2009 Report Posted October 3, 2009 Could I ask who does the immunological bloodwork? Is that part of the work up when you are moving on to IVIG? or you had to go to an immunologist? thanks, Faith
ShaesMom Posted October 3, 2009 Report Posted October 3, 2009 Could I ask who does the immunological bloodwork? Is that part of the work up when you are moving on to IVIG? or you had to go to an immunologist? thanks, Faith Hi Faith, Our Ped started the blood work by running Igg, Igm, Iga, and the Igg subclasses. We then had our allergy doctor order the additional blood work for the Pneumococcal Titers, Diptheria & Tetanus Titers, and some additional ones as well. We then took all of those results to the Immunologist who practices in our allergy doc's office. I think anyone can order the blood work but I'm assuming most Ped's might be know what the results mean (ours didn't).
faith Posted October 3, 2009 Report Posted October 3, 2009 Shae's mom, thank you. So this is all after you go thru with the IVIG to give to your doctor at home to prescribe longterm antibiotics? Would this be needed first if one wants to persue Dr. Latimer? or is that done later. sorry, I'm in the real beginning stages here, and I feel really clueless. I'm going to do the test kit from Dr. Cunninghams study. So just trying to get my ducks in a row to present my case, if you will. Did most of you here just call Dr. Latimer or Dr. K. on the phone and ask for an appt., or do you have to try to convince them of anything? thanks again, Faith
ShaesMom Posted October 3, 2009 Report Posted October 3, 2009 Shae's mom,thank you. So this is all after you go thru with the IVIG to give to your doctor at home to prescribe longterm antibiotics? NO. Would this be needed first if one wants to persue Dr. Latimer? I have not personnally contacted Dr. Latimer because we are in Nebraska. I believe from other posts I have read that she does like to see the results from Dr. cunninghams blood work or is that done later. sorry, I'm in the real beginning stages here, and I feel really clueless. I'm going to do the test kit from Dr. Cunninghams study. So just trying to get my ducks in a row to present my case, if you will. Did most of you here just call Dr. Latimer or Dr. K. on the phone and ask for an appt., or do you have to try to convince them of anything? We had a phone consultation with Dr. K in June but did not have IVIG with him thanks again, Faith My daughter was tested for the immune issues back in June based on one of those "mommy gut instincts". Her results came back showing that she had normal levels of the immunoglobulins (antibodies is another name) of Igg, Igm, Iga, and Igg subclasses. This means that her body makes normal levels of the antibodies needed to fight infection. Our allergy doctor told us that even though her body makes a normal level it does not necessarily mean that these antibodies actually work properly. We did another blood test on her (one amoung many) called the Pneumococcal Titers Test. This test shows how her body responds to infections caused by Streptococcus Pneumonae (Group A strep is not in this group). The results came back showing that she failed 12 of the 14 serotypes which means that her antibodies do not go to work to fight these types of infection. Because of these results she was dx'd with a Primary Immune Deficiency Disease called Selective Antibody Deficiency (it is often lumped with another PIDD called Common Variable Immune Deficiency-CVID). Since her diagnosis-several other families have also done the Immunological blood work. I believe most of the children have come back having a deficiency in one of the subclasses or other Ig's and almost ALL of them have failed the Pneumococcal Titer test. Our Immuno recommended monthly IVIG for our daughter based on her blood results. Because CVID is a recognized disease for both insurance purposes and throughout the medical community her IVIG is paid for by insurance. There are a few other families on the board who have had the doctor's recommend monthly IVIG on a trial basis. Rather than going into a lot of detail-I will look through the past posts and PM the links to you. Sam
dee45 Posted October 3, 2009 Report Posted October 3, 2009 Hey Melanie, what great news, so glad Danny is doing well and from the sounds of your posts so are you and your family I am very happy for you and I hope you continue to see more and more improvement. any plans for future IVIG?? Deanna
sf_mom Posted October 3, 2009 Report Posted October 3, 2009 Faith: With Dr. K I e-mailed a brief history of our son first and then followed up with phone consultation, steroid burst, our son's response and scheduling of IVIG. I don't know how it works with Dr. Latimer but I understand from other posts she'll want the Cunningham results plus medical history.
melanie Posted October 3, 2009 Author Report Posted October 3, 2009 Hey Melanie,what great news, so glad Danny is doing well and from the sounds of your posts so are you and your family I am very happy for you and I hope you continue to see more and more improvement. any plans for future IVIG?? Deanna .His neuro kindof doesnt do the same xact protocol as the mds you see on this board,and I dont know why.Dannys not on antibiotics now and I keep asking for them.Im going to see a DR.Bal hes friends with Sultan and he is into the Pandas dx too. Hes a infectious disease md.He uses penicillin thats what dr.sultan wants us to do Dr.Bal is also in the neptune area I never met him our app is oct 13th. I just had his titers done again this week Sultan did say if his #s were high he would use antibiotics Im calling monday Melanie
sf_mom Posted October 3, 2009 Report Posted October 3, 2009 Melanie: I'm so happy for you. Another success!!!!!!!!!!!!!!!!!!!!!!!!!!! Dr.'s need to start listening. By the way, we are experiencing similar two weeks post IVIG. He is tic free so far today..... usually crops up early evening when he is tired, no OCD, no restlessness, etc. Still some mood liability when he is tired but I can reason with him.......... so, improvement all the way around. He is on 250 m.g. of Azithromycin daily. Our plan is to investigate underlying immune issues further. We've already tested his Pneumococcal Titers and he failed 10 of 14 serotypes. Still waiting for the results of the IgG subclasses but blood was drawn prior to IVIG. If he shows a deficiency I'll request monthly IVIG for at least six months. If the immunologist won't work with us and he has a set back does not fully recovered in six months we'll go back to Chicago.
bubbasmom Posted October 3, 2009 Report Posted October 3, 2009 What TYPE of doctor did the IVIG treatment? We can't find this out anywhere. Its been 3 weeks since the IVIG treatment and Ive got to say things are pretty darn great around here. Sure hes still ticking a bit remember Danny's tic are mostly cursing.He has a foot twisting tick but were trying to get him to tap instead of twist. Its funny ,,that twisting is exactly like Sammy's twisting on the video.Any way we are sooo happy and sooo blessed to have had the treatment .Now I know the issues he was having has to do with the brain the Basil ganglia to be exact.Or thats what i am to assume because thats what the IVIG targets Right?/??My new question is how long does the IVIG last ??Please all of my smart IVIG PANDAS friends that have saved our son and our family and who I will be grateful to forever..Is there an answer?Or do I just wait and see Melanie and Danny
melanie Posted October 3, 2009 Author Report Posted October 3, 2009 What TYPE of doctor did the IVIG treatment? We can't find this out anywhere. Its been 3 weeks since the IVIG treatment and Ive got to say things are pretty darn great around here. Sure hes still ticking a bit remember Danny's tic are mostly cursing.He has a foot twisting tick but were trying to get him to tap instead of twist. Its funny ,,that twisting is exactly like Sammy's twisting on the video.Any way we are sooo happy and sooo blessed to have had the treatment .Now I know the issues he was having has to do with the brain the Basil ganglia to be exact.Or thats what i am to assume because thats what the IVIG targets Right?/??My new question is how long does the IVIG last ??Please all of my smart IVIG PANDAS friends that have saved our son and our family and who I will be grateful to forever..Is there an answer?Or do I just wait and see Melanie and Danny Hi Bubbasmom Our sons neurologist did his IVIG others used different mds Melanie
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