TWINS and Other Mega Big-Time Changes

We are having twins! I know, it's crazy. It's still so weird for me to even say those words. We found out on April Fools Day, and I almost didn't believe the ultrasound technician...although when she showed me the other baby's heart beating, I couldn't really deny it! We are so excited now (it took a few days for the shock/fear/"I-can't-have-twins,-I-have-a-21-month-old-with-epilepsy" feelings to elapse, but I can definitely say that excitement is my overriding emotion now!) Ed was excited from the start (He's a man and I don't think men think as much about how much work it's going to be having twins; I'm pretty sure he was thinking "We're getting close to a basketball team a lot faster than I expected to!") We are due in November, but the babies could come in October. (I'm hoping they stay in there as long as possible though.)

So....that's big change coming up #1. Big change coming up #2 deals with our sweet little Eddy. We finally switched neurologists from Buffalo to Rochester. After months of waiting to get into our new neurologist, we had our appointment on April 22. It was a three and a half hour appointment, and we made sure to be very open and upfront about our goals and desires with Eddy, as well as all the natural/alternative things we are doing for him (because we didn't want a repeat of our last neurologist experience and we are more comfortable with our medical/parenting knowledge and are way past thinking doctors know everything. I think it's a good idea to have a team mentality with your physician, and make sure they are aware that everything is a discussion, and you aren't going to listen to every word they say just because they're a doctor. I still have a lot of respect for doctors (well, the good ones at least :) ), but I have just learned too much over the past couple of months to fully trust that doctors have all the answers, like I used to.)

Right now, we are taking Eddy to: a chiropractor once a week; a chiropractor/cranial sacral therapist/vojta therapist once a week; an acupuncturist once a week; a naturalistic doctor (ND) who specializes in autism and biomedical therapies once a month; a homeopathic practioner once a month; and his neurologist every so often, whenever he has an appointment. We also have Eddy taking lots of vitamin/mineral supplements, digestive enzymes, probiotics, fish oil, and a few other supplements. We have tweaked his diet even further from gluten free, casein free, to still GFCF, but now he really doesn't eat carbs or sugar at all, and his diet consists of 80% organic, cooked vegetables (this kid eats a TON of veggies!), and 20% organic proteins (egg whites, lamb, beef, bison, chicken, turkey, etc.) I also put organic coconut oil or organic olive oil on all of his food to give him the fat he needs. He drinks unsweetened flax milk and coconut milk and a lot of water. This kid is a healthy eater. We are extremely blessed that he will eat anything.

Another reason it is so important and helpful that Eddy will eat anything is because we are instituting another HUGE diet change at the end of the month. Eddy will be in the hospital in Rochester for about a week starting an intense diet called the ketogenic diet (Go to www.charliefoundation.org. if you'd like to learn a little bit more about the diet.) It's basically a very high fat, low carb diet (think Atkins on steroids.) Eddy will be eating 80% fats, and the idea is that his body will start metabolizing fats and will, in turn, produce ketones. When one's body is in ketosis, for whatever reason, it can help to control seizures. About 50-60% of people respond well to the ketogenic diet for epilepsy, and we are really hoping Eddy is one of them. I will have to weigh all of his food to the tenth of a gram, and it will be very important that he eats everything on his plate. It's a difficult, very stringent diet for anyone to follow, but I've slowly been preparing myself for this change, which is why I've taken out all carbs and sugar from his diet and started giving him the coconut oil. (A lot of the ketogenic diet revolves around heavy cream and butter, which Eddy can't eat because he's dairy free, so coconut oil and the fatty, canned, coconut milk will be a very important part of his diet!) I am going to continue feeding him all organic foods and nothing processed or artificial because his little body needs all the nutrients it can get. When the ketogenic diet really works, all seizure activity ceases, the child is able to get off of all seizure meds, brain waves normalize, and after two years, they are able to stop the diet and introduce a more well-balanced diet, and seizures stay away. That's the best-case scenario, and it's one we're really hoping for, but even if the mostly stops his seizures and improves his development, we will be very happy.


While in the hospital, Eddy will have a 3-day EEG (so the poor kid won't be able to even leave the room for 3 days!), and they will be mostly-weaning his phenobarbital. We have been waiting a long time to wean phenobarbital, and we are very happy it's finally happening, but we are also really scared because a normal phenobarbital wean is about 6 to 12 months long (it's a barbituate, and the body becomes addicted to it and goes through severe withdrawal if it is weaned too quickly.) Ed and I suggested weaning him down from 7 ml twice a day to about 3 ml twice a day while in the hospital, then we will slowly wean the rest over the next couple of months. The last bit of medicine is always the most difficult to wean, so I would feel more comfortable with this, even though we really want him off of the phenobarbital.

Eddy's new neurologist also said (and I've read this many times) that she would never prescribe phenobarbital to a baby older than 12 months because it delays development so much (which is the biggest reason we've been pushing to get Eddy off of it.) Eddy started phenobarbital at 14 months and will be on it until he's almost two. This year of Eddy's life is so crucial to development, and I'm so angry that his development has been stunted so much by the phenobarbital. I just hope that we see a lot of improvement when he's on the ketogenic diet and off the phenobarb.

Another change is that we are currently weaning his Keppra. He was at 3.5 ml twice a day, and now he's down to 2 ml twice a day. So far, the wean has been smooth and he hasn't had seizures (knock on wood!) I know it's been over two months since I've updated this last, so you're probably wondering about how his seizures have been. In the last entry, I wrote that he had seizures the last week of January/first week in February after going eight weeks without any. Well, Eddy went another eight weeks without any and had ten tonic seizures in one week towards the end of March. I'm really hoping the eight-week cycle doesn't continue, because he'd be due to have seizures the week before he's in the hospital, and that will be the week that we are finished weaning the Keppra. I'm hoping that all the prayers I've prayed and all the supplements/therapies/appointments Eddy has had are helping with his seizures and by God's grace, we won't have any that week. (I'd appreciate any prayers you could lift up for us about this!)

Eddy's development is finally starting to show signs of improvement, but for awhile there, we weren't feeling very encouraged. Because we're doing so many changes right now, it's hard to say what is helping, but something definitely is. In the past month, Eddy has been more attentive, more aware of his surroundings, more alert, has better eye contact, and his fine motor is starting to improve. He's still not talking, but he's starting to make more sounds. He's still very delayed (and the phenobarbital, as long as he's on it, will continue to delay him, I fear), but seeing progress is definitely encouraging. I'm not going to lie, it's hard for me to see toddlers that are around the same age as Eddy running around and talking and doing all the things toddlers are supposed to do; but I have to remind myself that Eddy is special, and he's coming along, albeit at his own, very slow rate. Eddy has had so many setbacks and barriers to his development, but he is working hard, and he inspires me all the time. He's such a sweet, special boy, and I love him more every day.

We aren't sure if Eddy is on the autism spectrum now, and a lot of his therapists and other professionals who have seen him don't really know either. Eddy is definitely not a clear-cut case. He has many symptoms of autism (not babbling, not pointing, a global delay, GI problems, especially constipation, a weak immune system), but he also has many very not-austistic qualities (he has a strong bond with me and Ed and my parents, he has a great social smile, his eye contact is good, especially lately.) One doctor last week said that she doesn't know if Eddy is on the spectrum, but she thinks he definitely has something going on with his central nervous system. The hardest part right now is not knowing what his diagnose is, whether we can heal him, what the best approach to healing is, etc. All that we know is we are going to keep striving, day by day, to do everything that we can to help Eddy, and we will continue to have faith that God is with us and is guiding us through this journey.