I have been getting lots of great emails from people all over the world struggling to get help for their children. I get a lot of questions about PANDAS, PANS and IVIG. IVIG was our choice of treatment for Joshua. One that we feel literally saved his life.
Many physicians elude to the fact that it may not be safe as it is a blood product. IVIG is the pooled antibodies of about 10,000 people. Those antibodies are tested for viruses and then cleaned and spun down into a powder which is then reconstituted and given intravenously. The dosage for PANDAS, PANS with IVIG is high in order to shut down the bodies production of antibodies therefore halting the abnormal PANDAS cycle.
I have asked numerous doctors about the safety and those who are very familiar with the process are comfortable with its safety. I have read arguments against IVIG who feel it is risky due to viruses such as hepatitis. I guess maybe that’s the test. If someone had told me I could have the IVIG and it would heal all of the PANDAS symptoms, but we would likely contract hepatitis, we would have done it….or at least I would have, I can’t speak for my husband. I can treat hepatitis….PANDAS is just a monster that rips children and families to pieces with no end in sight….at least that is where we were.
Anyways, so you have an IV drip for 5-6 hours a day, for two days. The third day you want to see a massive headache…that is a great sign. Unfortunately, it’s like a migraine on steroids for the child. We were given steroids in case it got bad. It seems that the massive headache can also be a sign of IVIG induced meningitis. The headache lasted about 10 hours for us and then took a day or two to feel normal again. We left Joshua on antibiotics after the first IVIG because everytime we tried to decrease it, we had problems. At 12 weeks, he had severe problems, the tics and rage returned (though not near the intensity as before) and we completed a second IVIG. We were much more prepared. It was after this one that we lowered his antibiotic dose and he could tolerate it.
Every doctor seems to have their own number for success. Some say they should be 90% of their pre PANDAS norm. We have no idea what Joshuas baseline is. If he should begin to decline again, we will be right there waiting for our next treatment. Joshua is not a fan of needles, but he knows what will happen if he gets sick and doesn’t have access to this life saving treatment.