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Posted By A Son-Rise Message Board Participant on May 20, 2000 at 14:08:57:
For some reason this is a difficult post fo me to start. I guess I had high hopes for IVIG and when they did not arrive, I became dissappointed. Since Brenen has MBP antibodies as well as had/has GI problems, I felt this treatment could really be a "big" hitter for him. All is not "bad" however, as I will explain now. This may be a long post so now would be a good time to use the bathroom!
For those of you who don't know what IVIG is I will explain. Intravenous Immuno Globulin Therapy is a treatment used for immune system problems. It is not FDA approved for the treatment of autism (which I beleive is an immune system problem among others). Donors (over 100 per treatment) give blood and the antibodies from blood is spun out from the plasma. These antibodies are pooled together and intravenously given to a patient. Two autistic children that I know of had been cured/remission from this treatment. One child is in complete remission and the other unfortunately had to stop treatment and reverted back. The latter child lost all of his autistic symptoms according to the research, before his parents were killed in a car accident. Then he slowly regressed back once he was unable to continue his treatment.
A patient is infused once every 28-30 days with a certain dose of immunoglobulins. The "standard" dose is/was 400 IU (International Units) per KG. When reading one study in which the latter child was helped I found some very intersting information. Since IVIG is very expensive, the researchers used a "preload" vial that had a set number of grams in it. To split the vials and "waste" some IG would be too costly. Therefore, the average dose that the kids got was in the range of about 300-350 units/kg. The child that was in remission weighted the least so he ended up getting more per kg. He got the 400 dose. The researcher (whom I saw speak at a CAN confernece) stated he did not recommend this treatment because it only helped 10% (1 out of ten) of the patients. Did he not understand that just because one advil doesn't help get rid of my tooth ache that means two couldn't? As a paramedic I give a dose that may be too small and it dose nothing. A little more and wow, no more pain/better heart rythm ect.
We found a Dr. in our area that was starting to try this treatment. By the way, this infusion takes about 2-3 hours. At first I thought we were not going to be able to do it but Brenen was ok as long as his hand was covered up with a sheet so he could not see it. He pulled the first IV out within minutes until we found out the sheet trick. We were told that the immunoglobins take about 10-14 days to "saturate" the cells and we could hope to see something at that time. The time came and went with no changes. The second infusion was different. His stool which has been pretty good since all the other measure we have taken became even better. Perfectly brown colored and solid. At day 14 he began to actually pay attention and started to learn his abc's. His focus was NEVER better. In four days he learned all his upper case letters. He was also asking more questions. It was great, but it faded away. Month 3 he has sick with the croup and we saw no results. At about this time another Dr. stated he was having better results with higher doses (1000 units)so we decided to try that. Months 4 and 5 he seemed worse in the fact that he was very irritable most of the time. Stool still great, but now constipated a little. He only goes every other day. Perhaps we had gone too high? Why did 400 work on month 2 but not on month 1 and 3? Month 3 was the croup and I'm sure that did somehting, but why no change month 1? Did we pray the best during month 2?Did a different brand work better than another? I drove myself nuts. He kept all of his learning, but still does not have the focus he had. He still is improving in all areas, but I think much of this would be occuring with our Son_Rise program alone. He learned how to zip his coat a few weeks ago and is playing more with his sister. The four days we had was kinda like the movie "Awakenings" except he is still learning. It is just that "clearness"/focus is not like it was. It is not worse prior to the treatment. I believe he knows what he had and may be frustrated by this now. Perhaps that is why he has been more irritable lately? He knows a lot more than he is able to get out right now. The past few days however, his irritablity seems to be fading.
We have delayed month 6 for a bit for various reasons. While we did not get the results we were hoping for, I am still very hopefull. This treatment just proved again to me that even though it was short lived, somehow the immune system still needs "help" or to be adjusted so that our kids can function easier. We have not done any blood work yet to see if Brenen's MBP antibody and measles titer levels have decreased. We will at some point in the future. Dr. Gupta should (I hope) be coming out soon with the largest study on IVIG ever done with autism. Perhaps he will report in the California confernce the first week in June. By the way, our insurance DID cover almost all of the treatment(about 20K). Coding is VERY important and if any of you decide to try this feel free to E-mail me for what we did. While I do not regret trying this treatment, I am still feeling a little disappointed. I hate the pain Brenen had to feel and there are concerns about any blood product as well. If you would like more details about this feel free to E-mail or call me at 847 891-1969. I will reply back as soon as I am able. Bram
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