Chemo wasn't showing us hopeful signs. I am not sure chemo shows any hopeful signs for anyone physically or emotionally, but everyone hopes to see it effect the disease it is supposed to annihilate. Chemo was supposed to suppress Emersyn's immune system, but incidentally two new spots of inflammation reappeared. I say reappeared, because they were not new lesions with inflammation (thank God). So back I went into "research mode", trying to figure out what options out there are better for ADEM or auto-immune encephalitis, which is what she is mirroring right now.
**Just an FYI about us doing the research. It is commonly well-known that when children or adults are diagnosed with rare diseases, the parent (or adult) usually has more time to research than the doctor does. Of course, the doctor has past experiences and trial and error to work with, but autoimmune encephalitis is rare, especially the kind that doesn't show up in the spinal fluid or blood work. So most doctors take the suggestion of the parents, realizing that they have read more recent studies and asked others in the same situation.**
After reading the testimonies of many, many encephalitis sufferers, I saw that many of them were on chemo, but the rest were on a monthly infusion of IVIG. Of course, these people were diagnosed with a different (or so we think) auto-immune encephalitis, but at this point we just need something to kill those bad antibodies that seem to keep inflaming her brain! So when the doctor called me last week about stopping chemo all together, I asked him if he considered IVIG treatment. He said he felt comfortable with proceeding with that for 3 months and scheduled her to go in Tuesday, March 3rd. Of course, he will also send Emmy in monthly to do an MRI to make sure it is working.
Now, let me tell you how LONG we have been asking questions to 2nd and 3rd parties on how to handle Emersyn's case. Our doctor has also showed outside sources her labs and MRIs, but everyone comes back with the same diagnosis, ADEM. ADEM is supposed to be short lived and once it is stopped with high dose steroids, it shouldn't come back (ugh is what I say to that...). But I contacted the director of a British encephalitis organization called Encephalitis in Children. She cited a book source to me of a highly regarded ADEM specialist in South America named Sylvia Tenembaum. This specialist noted that as ADEM is clearing up and recurrence of inflammation occur, IVIG is very effective. To explain what IVIG does is hard because every source is different. Some say it dilutes the total number of antibodies in the body, making the bad antibodies ineffective. Other sources say the IVIG attaches to the proteins which are made by the bad antibodies and yet other sources say something about how the IVIG attaches to the receptor sites on cells, prohibiting the bad antibodies from attacking. Whatever it does, I am going with Sylvia and that is why I mentioned it to Emmy's doctor.
Our schedule will be a little crazy for the upcoming months... We are still weaning Emmy off of prednisone. Now, weaning is important, not because of relapse, but because prednisone stops the adrenal glands from working. I am diligently using essential oils that help activate the adrenal glands and also giving her about 500mg Omega 3s daily. So while we are weaning, she will be having another MRI in 3 weeks, followed by her second dose of IVIG. Each month will be an MRI followed by IVIG for 3 months. The neurologist feels that 3 months of this will be a good sign if this treatment plan is working. I just feel HORRIBLE that she has to be given an IV each time she goes in. Her hands and forearms look so bad sometimes from the bruising, but she handles it so well for a 7 year old! Once again, I thank God for Emmy's determination, small rebellious streak and personality every time we go in for these procedures.
***So as I was writing this, I forgot to mention what a terrible side effect IVIG had on Ms. Emmy's head and stomach. Three hours after the IVIG infusion she started having a headache, followed by the next day of vomiting and migraines. We took her into the ER that afternoon because she couldn't keep anything down and her symptoms were the exact mirror of a relapse. Praise God, it wasn't and we found out that IVIG can be harsh on the body for a few days after, but she was only sick for the day after and has been doing great since!
Thanks for keeping up with Emmy and her treatment plan and continuously praying without ceasing! She needs it and so do the rest of us!!!
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