So this article is LONG overdue! As you can read from my previous blog posts, we have had great success with recovering our daughter who has Angelman Syndrome from seizures, terrible chronic yeast infection that caused horrifice rashing and scaring on her bottom, eczema, many allergies (both food and environment), sleep disfunction and with all of this "recovery" came GLOBAL COGNITIVE IMPROVEMENT! We accomplished this by implementing a GFCF diet that was extremely low glycemic, made up mostly of meat, fat, nuts and the lowest of glycemic vegetables. Since she has recovered her health and her autistic symptoms; such as, lack of eye contact and hand flapping, we have been able to loosen up on the severity of the low glycemic or "protein type" side of things. Krista's diet is still relatively low glycemic but I just want to stress that the only reason we have been able to loosen up and let her eat things like bananas and gluten free whole grains like brown rice and quinoa again is because she has recovered; especially from the seizures. If your child is not recovered from seizures and you want to implement the LGIT diet, you have to follow your neurologist's or other health professional's guidlines closely in order to truly reap the benefits of the diet and recover your child from seizures; however, if you want my two cents, even the medical LGIT NEEDS to be GFCF and it currently includes dairy but it can be modified to exclude dairy and gluten if you let your health professional know that this is your intention.
Ok, now all that being said, let's talk about this doggone issue of my daughter having a UPD diagnosis vs. your kid having a deletion or whatever. Regardless of the variance on genetic type, it is still ANGELMAN! My struggle with my daughter in accepting that she was not a "typical kid", dealing with seizures and health problems is the same as yours and trust me the UPD diagnosis did not ease my pain when I read that UPD kids might speak up to 10 words while others with AS might speak 3! The extra words are nice and all; but, a 7 word difference does not a viable means of communication make! I hear that UPD kids do not tend to have as severe of seizures as do kids with deletions; but let me tell ya, I still don't like seizures and I don't want them to be a part of my daughter's life whether they are so-called "mild" or otherwise.
What causes Angelman sydrome and why is it that no matter which genetic sub-type that our kids have, is it still called Angelman sydrome anyway? I will speak with NO authority on this subject as my interest has never been problem oriented, I like to think of myself as more solution oriented. I understand that we need to know what the problem is and I'll leave the discovery of problems to the scientists and I'll continue to focus on the solutions. Fair enough? So, here's AS as I understand it, there is AS caused by a small deletion on chromosome 15 or a large one, there is UPD caused by inheriting two copies of chromosome 15 paternally, there are mutations, there is this newer cause that I know nothing about, I believe it's called ICD (feel free to correct me) and there are clinical cases and maybe even more reasons that a person becomes symptomatic of Angelman syndrome that I'm not even aware of. So why is it all called Angelman syndrome? As I understand it; it's because in all of these cases the 15th chromosome is affected (except clinical cases which may or may not have a chromosomal abnormality on 15; but our science hasn't figured it out yet; however, they are symptomatic) and this has affected the genetic expression of UBE3a. So no matter which subtype our kids have, they all have this problem with that gene. And as with every neuro genetic disorder, there will be a broad spectrum of health and abilities.
I do not say this to dismiss the fact that research shows that people with non deletion cases of Angelman syndrome tend to fair better cognitively and probably have a better chance of being able to ambulate successfully etc... But I have to tell you that everything that I have ever learned to do to improve the health and cognition of my daughter has come from the Autsim community. Mostly from my all time favorite website www.tacanow.org and I used to have insane thoughts; like, ahhh... if it were ONLY autism or ONLY ADD/ADHD. Until a universal wisdom spoke directly into my ear and said, their pain is NO less than yours! They expected typical children just like you did! Whoa! And here I was ignoring the pain of these families, thinking about how they had it easier than me because their kids were "verbal"; but some of those kids although verbal, will never refer to thier parents as mom and dad and will never hug thier parents or tell them that they love them! When a kid has ADD/ADHD; here you have this pretty typical looking kid but his behavior could be completely out of control making it almost impossible for the child to make and sustain friendships, they're typically brilliant kids but often times do very poorly in school because they can't focus on boring school work and are not given appropriate educational opportunities that would encourage the best of who they are to shine through! These parents are heart broken!
If I had never had this apiphany, I may have turned my back to the dietary therapies that have helped these kids to recover from illness and improve in cognition. Think about it; if you peel away the Angelman syndrome, you might have some autism, if you peel away the autism, you might have some ADD/ADHD... Right? Our children embody all of these things and while treatment for Angelman syndrome is in it's infancy; treatments for these other disorders are fairly well developed and I believe that a diagnosis of AS does not "trump" a diagnosis of autism or ADHD! If you look a little deeper your kid might even show signs of dyslexia. We have some idea of how to treat these things both with therapeutic diets and with therapies like those used for sensory integration problems. My point is, that although I am a huge supporter of all things that are aimed at curing Angelman syndrome, I know that we have to take a wait and see approach to find out if the new drug therapies will be proven both safe and effective. And I feel like healing is meant to happen for our angels TODAY! Right now! Right where we sit at our computers we can learn about the ways that nutrition heals all of these conditions and we can get out of our seats and into our kitchens and whip us something that will start our child's healing process today! And once that drug therapy is proven both safe and effective we will have children with immaculate health who will benefit from that drug therapy beyond expectations! Think about it, the drug therapy might do a very good job of improving cognitive function, but can it heal years of poor bowel function? Probably not, you can do that now and your child will benefit today.
For recovery stories of kids who have deletions and other Angelman sub-types, check out the blogs that I follow section and click on Liz Sordia's blog, Meet The Families of AS. I am grateful that these parents have chosen to share thier road to recovery for our benefit!
I want to share with all of you that it is my belief that any genetic advantage that Krista had was wiped completly out by a medical mistake when she was a newborn that led her to contract meningitis, then she was vaccine injured at 3 and began having seizures, illness and symptoms of autism and she was also diagnosed with a disorder that is not well understood called PANDAS; which occurs when a person is exposed to strep and has a psychotic reaction to the exposure due to brain inflammation. And yes, she has recovered and yes she speaks over one hundred words. We are exceedingly proud of her! But there is more work to be done; because a one hundred word vocabulary will not allow my daughter to come home from school today and tell me about all of the wonderful and exciting things that happend on the field trip that they are taking to the theater today.
But am I bummed out that my kid has only a hundred words? Not at all! I am happy for every bit of success and health that my daughter is allowed to benefit from because of what I learned about dietary therapy. I know there is more out there that will help her to have an independent adulthood; I haven't discoverd that holy grail just yet. That's because the Holy grail is not just one thing! It's not just diet, it's not just supplementation, it's not just the right therapy, it's a combination of many things that I currently know about and those that are to be discovered but I'm hot on it's trail and I would never give up on any of my other 3 "typical" kids, and there's no way in hell I will EVER give up on my Angel!
I share all of this with you to hopes that I am able to somehow foster an understanding that we are all in the Angelman boat together and we should all depend each other for support. And when I say support, I mean vent your frustrations if you must, but then align yourself with fellow AS parents who are positive that there is better life waiting for thier angel and for yours. Align yourself with parents who are SOLUTION oriented and who have experienced success and want to share it with you!
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