Second IVIG progress notes

The differences between this IVIG and the first are that I am not expecting a miracle overnight cure or even long lasting results...just results. The lower dose and one day administration definitely resulted in less side effects. The headache, nausea and vomiting was not as bad, but still present. I did continuously treat with ibuprofen for 5 days and benadryl for 3. This obviously helped. If I tried to stop the ibuprofen he would stop improving and start backsliding. The improvements were more sudden across the board. For example, it took 10 days before we saw improvement in all areas, but this time my mom got to see the bump in speech, eye contact, and decreased emotional lability before she even left.

The way that he is able to articulate areas of deficit he experienced even prior to the regression is nothing short of amazing. On the night before Thanksgiving he was able to share how delicious he thought dinner would be the next day. At the dinner table, he sat in his chair, used a fork, talked about how good the food was, and was able to try sparkling cider for the first time. He said "it doesn't zing in my mouth anymore. I can eat lots of foods." He had the biggest smile on his face. He also shared, "I can feed myself. I don't need help anymore." We regularly had to verbally prompt and physically feed Brady bites of food to get him to either try new foods or simply eat enough of each meal prepared for him. In the past I have seen him turn green just at the sight of an objectionable food. On Thanksgiving, he asked for more gravy and even ate stuffing and mashed potatoes without a fight. Of course he wanted more cranberry sauce but we used that to make sure he ate enough turkey, which as it turned out wouldn't be a problem at all. After dinner I crashed hard, surrendering to sleep for a coma-like nap finding for just one moment in time I didn't have to spend worrying whether he would get better or not. It was just a matter of how long he would stay that way.

Of course with awareness comes a down side. Brady was playing in the basement and he started flapping his hands. Another first time behavior. Since he had his seizure he has come to look on the outside more and more like his diagnosis and this is absolutely terrifying. It does nothing but propel me to seek more help for him and shelter him from the outside world until we can get this figured out. My mom talked to him about how his friends don't do things with their hands so he shouldn't do it either. She was trying to teach self-monitoring, so that once the IVIG did start to work anything left behind behaviorally we could teach him to monitor himself and stop himself from doing. He said to her, "I'm not retarded." As horrible as this is to hear, and you could send yourself down a dark path in a nanosecond, this does show amazing self awareness. It serves as a reminder that he is listening and paying attention and completely understanding even when we think he is not or cannot show us at the time.

Day 10 seemed to be the magical number for the first IVIG. We have seen lots of good moments since his second IVIG, but day 11 was definitely the best by far. He was eating a box of raisins, leftovers from the snack we had taken to school. He asked me "are these poisonous?" I told him no, raisins are not poisonous. He said "C said they were poisonous so he wouldn't eat them. You should tell him they aren't poisonous." O K! He talked about something that happened in the past, in a different environment than he was in, about someone else that was there, to me! That is H U G E! Then he went on to have a 20 minute conversation with his therapist when she got here, she counted 113 eye contacts, the most he has ever had since starting this so-called behavioral therapy. The most he has ever had with the other therapist is 65 before the regression and he was much healthier then and "on." Amazing!

When he is healthy and doing well he can show us amazing progress. It is so easy to discount your own beliefs about how well he was doing before the regression, but all you have to do is hear in a friend's voice the fear over his loss of skills, or see the data or have that one awesome day to remember how great he was doing. He was having awesome days every day! Sure, he still had struggles but he was making upward progress and I literally felt like recovery would happen, it was just a matter of time and more rounds of chelation and supporting his other systems and we would get there. With this regression, I lost that hope and all of a sudden my kid became a tough nut biomed kid. Not where you want to be after all these years of struggle and success. You don't want to hear that catch in your friend's voice when she talks about him with worry and angst because she knows how serious it is for a child to lose progress this late in the game. It means we missed something major and it appears we are on the right track to discovering what inflammatory, autoimmune mediated neurological illness we are fighting against. Nonetheless, in January we are flying to Florida to take Brady to see one of the country's top "tough nut kid" docs. As I sit here watching the snow fly outside a trip to Florida in January doesn't sound like such a bad idea, especially since we missed the summer to doctor appointments and worry! A few carefree days on the beach sounds just like what the Dr. ordered.

Oh, and his heart study all came out normal. Aside from sticking a scope down his throat, this EKG and echo pretty much nails the full body scan approach to figuring out why our kid crashed. I know we will still make it to recovery, it is just going to be a different route than anticipated. Hell, Brady's whole life has been a different route. He has taught me so many things that I would have never learned if my hands weren't tied and I was forced to see it.

Last night I went to Brian's holiday party at work. This is the first year he has worked there that spouses were involved and I was a bit nervous about it. Would I find a dress that didn't make me feel like a frumpy housewife? Would I remember what it is like to have a conversation with adults that is not about raising children or developmental delays? As it turns out I did just fine, and probably shouldn't have worried about my dress as I was the only one wearing one amongst all the lawyers and accountants!

I happened to get into a conversation with a very nice man and he out of the blue shared with me that his granddaughter passed away from mitochondrial disease at the age of four. I have no idea the odds of someone being at the party who not only knew about MD, but had first hand experience and then would share it with me! I loved hearing about her spirit while she was alive and how many great gifts she brought out in so many people she touched including the doctors and professionals responsible for her care. I had to cut the conversation off before I started crying in the middle of the party but I was thankful that he shared his story with me and I felt good about being able to help him with the idea of publishing his DIL's blog as a book for a Christmas gift. She may not be able to read it now, but she will put it away and some day read it all in one sitting. It is so important that our stories and their lessons are not lost.

I am not sure why mitochondrial disease was put in front of my face once again. The genetics/metabolic clinic called earlier in the week wanting to know if I wanted Brady to be seen again. I wasn't sure at the time and took the name and phone number down and told them I would check with his neurologist and get back to him. She is still saying "we are treating him as if he has sydenham's chorea." So, while yes we are treating him and he is getting better, everything isn't exactly back where it was yet, and then there is the question of why this all happened in the first place and would it happen again? Until someone has, as Abby puts it, their mystery diagnosis moment, and THE doctor's name on her lapel shows up and a diagnosis scrolls across the screen capitalized and in blue letters, I suppose that we have to keep exploring all possibilities to ensure that we are doing all that we can. In the meantime, I love listening to Brady share how the world is to him and soak up every triumph through my pores no matter how transient. Above all hope upon hope that we find the answer for Brady, and that his answer in turn helps another child and another family. As much fun as I'd like to believe a trip to Florida will be in January, I wouldn't wish this route on my worst enemy.

I believe after a two day IVIG, you need two weeks to recover and after a one day you need less than a week really. So, if we were to go back to chelating right now we could be chelating about twice a month with one day IVIG. I could have done a round this weekend but I didn't as I still don't have Brady back on all the necessary supportive supplements since taking him off for the urine OAT test. I would have never thought he could be holding it together like he is without all the support he has needed for so many years. Now it is just a matter of determining what still makes a difference and what is superfluous. That is the most important lesson of life anyway.