More research
Since EK's initial autism diagnosis in February 2009, I have done tons of research: reading books, reading online articles, asking moms who are ahead of us on this journey. I have researched therapies. I have researched diets and recipes. I have researched alternative treatments, like supplements/vitamins, b-12 shots, hbot, homeopathy, chelation, stem cell therapy and many, MANY others. I have found doctors that understand that autism isn't just a neurological disorder. They understand that there are many components to help EK living a better life (food allergies, GI inflammation, reducing toxic exposure,getting her body to detox all the toxins that are in the world, etc.) I am so thankful to have doctors that are trying to help her, instead of just telling me I have to accept her the way she is. Don't get me wrong, I love EK right now the way she is. If she doesn't improve at all from this day forward, I will still love her. However, when we first received our diagnosis, the doctors were very discouraging. They said there wasn't much hope. As long as the Lord gives us wisdom, I believe we will find things that benefit EK and that leads me to more research.
Last year, I began to look at other things that could be going on with EK. I just wasn't sure she just had autism. The main thing that bothered me was that almost all kids with autism that I know improve some. They learn how to communicate on an ipad if they are non-verbal, they learn social skills, they improve on things like special diets and vitamins/supplements. I rarely meet kids who don't make some progress and it bothered me that EK wasn't making any progress when we were trying so hard to help her. I felt like we were missing something, a BIG piece of her puzzle.
I again read more about Rett's Syndrome. Maybe you remember that I looked into it a few years ago? Rett's Syndrome is more common in girls, but it's not really that common of a disorder. Most girls regress before they turn a year old and are non-verbal. Many have seizures, many aren't able to walk or feed themselves and quite a few even have a g-tube. They all lose the ability to use their hands to some degree. If you google it, the severe cases of Rett's come up. It was hard to group EK with them since she's very high functioning in comparison,but I wondered if this was something we should research. I was about to do a 2nd test (because EK's initial blood work for Rett's said "negative") to rule it out. After talking with my pediatrician, I didn't have the blood work done b/c I didn't see how it would really change our course of action for her.
And I'm still not sure how having a Rett's diagnosis will change what we are doing, but we are going to Houston this coming Wednesday to rule it out. There is a specialty clinic there and the neurologist will be able to give EK a clinical diagnosis, even if genetic blood work doesn't come back with chromosome deletions or mutations.
The Lord brought a mom into my life last year. We've been on an autism board for several years together. Last summer she wrote that her daughter had been recently diagnosed with Rett's syndrome. We messaged back and forth a few times on Facebook and then met in December. She's a very sweet woman and she was so easy to talk to. As we shared about our girls, we found out they were 2 months apart in age and had many similiarities. After speaking with Jennifer, I told Keith that I wanted to get EK evaluated. I made an appointment back in January and it's now almost here.
My main reason to go this route is to find out why she isn't making progress. Maybe it's a mom's intuition, but it's been very frustrating to not see any progress when so many kids with autism do. I mean, even kids who only go to school are making more progress than EK. (That means no extra therapies, no special diet, no other biomedical interventions.) Another reason to get this diagnosis is that it can prepare us for things to look for in the future. Like I said above, Rett's girls are usually pretty severe. (Although I have to wonder if the Lord led us down the autism route first so that making dietary changes and addresses GI issues and adding in supplements/vitamins that she's lacking have allowed her to not regress as much physically. I have no evidence to back this up, except that Avery and EK are similar and we've done a lot of the same things over the years.) Most have a team of doctors they have to see regularly: neurologist to control seizures, GI doctor, cardiologist (b/c apparently there can be heart issues with Rett's), nutritionist (b/c most girls can't keep weight on and then have to have a g-tube), etc.
While I really don't want EK to have Rett's (b/c it's more serious), I also am to a point where I just want some answers. We'd love for you to join us in prayer for this coming week. Here are a few things that I've been asking of the Lord: that it would be clear whether she has Rett's or not, that EK wouldn't be too upset during the appointment, that we'd get some direction on what to do next and what to be prepared for in the future, for safe travels there and a good night's sleep in the hotel the night before.
I will update after we get back.
Last year, I began to look at other things that could be going on with EK. I just wasn't sure she just had autism. The main thing that bothered me was that almost all kids with autism that I know improve some. They learn how to communicate on an ipad if they are non-verbal, they learn social skills, they improve on things like special diets and vitamins/supplements. I rarely meet kids who don't make some progress and it bothered me that EK wasn't making any progress when we were trying so hard to help her. I felt like we were missing something, a BIG piece of her puzzle.
I again read more about Rett's Syndrome. Maybe you remember that I looked into it a few years ago? Rett's Syndrome is more common in girls, but it's not really that common of a disorder. Most girls regress before they turn a year old and are non-verbal. Many have seizures, many aren't able to walk or feed themselves and quite a few even have a g-tube. They all lose the ability to use their hands to some degree. If you google it, the severe cases of Rett's come up. It was hard to group EK with them since she's very high functioning in comparison,but I wondered if this was something we should research. I was about to do a 2nd test (because EK's initial blood work for Rett's said "negative") to rule it out. After talking with my pediatrician, I didn't have the blood work done b/c I didn't see how it would really change our course of action for her.
And I'm still not sure how having a Rett's diagnosis will change what we are doing, but we are going to Houston this coming Wednesday to rule it out. There is a specialty clinic there and the neurologist will be able to give EK a clinical diagnosis, even if genetic blood work doesn't come back with chromosome deletions or mutations.
The Lord brought a mom into my life last year. We've been on an autism board for several years together. Last summer she wrote that her daughter had been recently diagnosed with Rett's syndrome. We messaged back and forth a few times on Facebook and then met in December. She's a very sweet woman and she was so easy to talk to. As we shared about our girls, we found out they were 2 months apart in age and had many similiarities. After speaking with Jennifer, I told Keith that I wanted to get EK evaluated. I made an appointment back in January and it's now almost here.
My main reason to go this route is to find out why she isn't making progress. Maybe it's a mom's intuition, but it's been very frustrating to not see any progress when so many kids with autism do. I mean, even kids who only go to school are making more progress than EK. (That means no extra therapies, no special diet, no other biomedical interventions.) Another reason to get this diagnosis is that it can prepare us for things to look for in the future. Like I said above, Rett's girls are usually pretty severe. (Although I have to wonder if the Lord led us down the autism route first so that making dietary changes and addresses GI issues and adding in supplements/vitamins that she's lacking have allowed her to not regress as much physically. I have no evidence to back this up, except that Avery and EK are similar and we've done a lot of the same things over the years.) Most have a team of doctors they have to see regularly: neurologist to control seizures, GI doctor, cardiologist (b/c apparently there can be heart issues with Rett's), nutritionist (b/c most girls can't keep weight on and then have to have a g-tube), etc.
While I really don't want EK to have Rett's (b/c it's more serious), I also am to a point where I just want some answers. We'd love for you to join us in prayer for this coming week. Here are a few things that I've been asking of the Lord: that it would be clear whether she has Rett's or not, that EK wouldn't be too upset during the appointment, that we'd get some direction on what to do next and what to be prepared for in the future, for safe travels there and a good night's sleep in the hotel the night before.
I will update after we get back.
Melissa, I am just reading this now ... I am praying for you and Keith and beautiful EK.
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