Special Olympics

Asia attends a elementary school that is largely dedicated to the special needs children in the area. Which is really great- because the classrooms contain all that they need to help these children and they have activities catered towards them. I posted yesterday that Asia was going to have the "Special Olympics" at her elementary school today. She came home all smiles with a new t-shirt and a 1st place in "bowling" and a 2nd place in "running". They worked hard and competed while the other students in the school cheered them on. I know she had a lot of fun because when I asked her about it she would "jabber" on and on and on:) Love this!

 

Random Stuff

I am busiest in the Spring and Fall with my job so my posts are lacking but, I wanted to get down just a few things that have been happening...Asia has started additional Speech and PT appointments and I have been taking her out of school for that. Right now "life skills" are more imperative then other areas. She had a speech therapy evaluation and I think right now we are going to work on teaching a little bit in sign language. This should be a adventure for the whole family because we will all have to learn. She surprised me and I think her therapist, when he was showing her pictures to "say" and she busted out with a perfectly clear "Apple"-it was awesome to hear that! Asia wants to use her hands a lot so I think sign may be a good direction to take.

Physical therapy is going well and a lot of that has to do with that special bike they have. She has now added "bike" to her prayers at night:) When Asia says prayers at night it is really just a list of all the things she is "thankful" for- Bus, Elmo, Mall, Gma's house, McDonald's and now Bike-really cute.

A couple of years ago Asia had some "daffo's" ankle/foot braces made because we thought it would help with her balance and to support her ankles that seemed to be pronating. It didn't seem like they were doing much so the PT suggested we had them cut down-now they are just a sole insert and they seem great. We got her some new high tops that fit the insert and support her ankle. A lot of shoes have the option to remove the sole insert which makes a little bit more room for braces. I would never have thought to have them cut. They were so expensive to begin with but, I guess if we weren't using them anyway it doesn't matter.

The title of this blog-chips, cheese and sometimes marshmallows-use to describe her fav's in food but I have to say I have seen a change in that. Which is fine with me:) She doesn't eat cheese or chips very much and not really any desire for marshmallows even as a offered treat. She has been a very picky eater-which makes trying to figure out what is going to be best for her digestion really hard. I am trying to convert her to smoothies and applesauce (instead of her fav yogurt) but this has been really hard. I'll keep at it.

Sleepless nights and less napping are here again. I think Miralax put Asia into such a lethargy that she wanted to sleep all the time. Now that she has been off of it she is up at night again. Not every night and not all night but def a lot more often. Temporarily to get some sleep I will bring her her iPad and she will watch it for hours. This is something else I need to work on but I wouldn't trade this for "Lethargy":)

School is still great-still getting good notes from teachers and I am so pleased with that. In fact, tomorrow is "Special Olympics" day. I hate that Asia can not tell me what she does during the day at school:( I know they do so many great things there and I never know/hear about it-that's a bummer.

**I have had so many people tell me about their Miralax experiences and ask what we are using for Asia that I am going to post about that. It is honestly baffling how many people are struggling with digestive problems! There is def something wrong with our diets. I did receive a return phone call from Asia's pediatrician about the articles I forward to him concerning Miralax and this is what he told me. He actually had the hospital pharmacy along with himself searching for information regarding these side-effects and he didn't come up with much info. He did say -which I have as well- that everyone could have a different reaction to it. He suggested that I write a letter to the FDA regarding my experience with Asia and gave me a couple of ideas I could try with her. I think that writing a letter is a great idea and to all of you who have mentioned problems with your children and Miralax to do the same. Maybe some one will take note and do some testing:) I will let you know that a few of my conversations with others have included their children having seizures while on it-wow, scary. That is just not right.**

I Run

A couple of months ago I realized I needed at least a "little" time to myself, to get out of the house and collect my thoughts and emotions. I signed up for a gym and let me tell you it really helps deal with the daily stress. I bring my iPod with my fav songs and go to work out but, it is actually relaxing (compared to what awaits at home:). It gives me so much more patience with Asia. I am not consistent yet with getting to the gym but it is anywhere from 1-5 times a week and I run. I can not run a marathon but, even if it is only once a week it helps. I actually look forward to it.

After all of that....I posted awhile ago about a Charity run for the Now I Can foundation and I just signed up. It benefits children with disabilities. So far I have got my oldest daughter, Asia and myself running. I am starting a group under "Asia's Team" and we are going to start with the mile to see how Asia can handle it (and me:). There is a mile or a 5k.  I have a feeling she will love it and if she does we will try a longer distance another time. Hopefully I can handle pushing her:) If you want to sign up as part of her team she would love it! You will have to call to get the discount (801-228-1935). They will take a payment over the phone and send you a form. Or check out the info from the link below.  **Register by May 10th for the discounted price**

http://www.nowican.org/runtowalk

Miralax Awareness cont.

I just want to reply to the many messages I have received on my last post about Miralax. It is great. Whether it's good or bad it's getting people talking about it. My intent with that post was just to share "awareness" and caution. To get people talking and asking questions. Nothing is ever done until there is a "fuss". More people need to ask these questions and maybe some research will be done. My main concerns are not for the adults but, mostly for the children. Their growing/developing little bodies react differently to treatments then adults do. Anything given to them (children) should go through a complete testing-who would expect anything less. Especially when it is a substance given for long periods of time. When there are reports out there like these and Dr's are not aware of them I am concerned. I am obviously not in the medical field (even though I feel like I am:). My husband and I have spent countless hours researching medical solutions for Asia over the last 5 years. We have often found ourselves knowing as much or more then some of her Dr.'s-and I am not saying that "proudly" just sayin. We have been focused on one person when Dr's have hundreds of patients. They do their best with what they know and the rest is up to you. When you spend that much time looking at medical research and you come across information that directly affects your own child and you see the negative effects it has caused- I am going to share that information with others that may be searching for those solutions in their own life. The change in Asia is undeniable. Clint and I feel its our duty to share the outcome of our experience and give a "heads-up". Not everyone is going to react the same as Asia has but, everyone needs to be aware of whats going on.

My pediatrician recommended sending in a report to the FDA. Here is a link for FDA report and also report adverse effects to RXing. I have submitted my forms and if you have had problems you should do the same. Here are some links to report to:

This one is to complete a form 3500 online,
https://www.accessdata.fda.gov/scripts/medwatch/medwatch-online.htm
Download a copy of this Voluntary Reporting Form FDA 3500 or the Consumer Voluntary Reporting Form FDA 3500B and either mail it or fax it to us at 1-800-FDA-0178. Forms are available at:
http://www.fda.gov/Safety/MedWatch/HowToReport/DownloadForms/default.htm
Another great link to report at
https://www.rxisk.org/Default.aspx

There is also a Yahoo Miralax group-that has a lot of people who have additional info on Miralax awareness. Just search Yahoo groups Miralax and it comes up.

Side Notes:
~she is still doing awesome! no aggression, rage, lethargy etc.
~no noticeable seizures.
~throws a tantrum here and there when she is not getting what she wants but, tantrums do not include the aggression (hair pulling, kicking, hitting etc.)
~putting more words together
~renal ultrasound came back with normal results-yay!

Miralax WARNING

I am setting aside the cleaning and work right now to post this message. I feel like I received a huge blessing-this post will be a little lengthy but please read the end results:) Someone shared some information with me and I want to spread the word. This is VERY important because it affects so many children. I am almost sick that I did not have this info a few years ago!

Asia has suffered with constipation since she was little. I don't remember her having to many issues before she was 1yr old but, I remember it becoming a problem after that. Not sure why, it may be her low muscle tone or something directly related with the missing info from Chromosome 2. Asia along with other 2q kids have a hard time with potty training and severe constipation problems. We have tried everything-with diet, we tried taking her off of corn, dairy and gluten (didn't see any results). When Asia was small (up until a couple of years ago) she would eat ANYTHING:) At that time she definitely got her daily dose of vegetables and fruit. For constipation we would give her prune juice and additional fiber to try to get her to go and none of it worked. With Asia, it seems as though her constipation problems directly affected how frequent and severe her seizures were so we definitely wanted to get it under control.

We were soon introduced to Miralax. In fact, I remember sitting in a waiting room with a GI doctor and she told us her daughter had constipation issues and she just gave her a dose everyday and it kept her regular. We inquired with Asia's Dr and were given prescriptions to get her Miralax-even though you can buy it over the counter some insurance will cover the cost of it. I can not remember the exact date but it has been at least a few years since she started taking it-maybe longer. It worked great-we were so relieved to have something. If she missed a day she wouldn't go. Along with being miserable, she would have increased seizure activity so it was important she got it everyday. With in the last couple of years Asia's personality has changed. She is extremely aggressive, lethargic, terrible mood swings, her Autistic characteristics seemed to be amplified. You may have read from previous posts about her erratic behavior. At home on the weekends all she wants to do is lay in bed-took several naps a day, just miserable. I recall bringing her in to the Dr.'s office last year because she looked like death-so sick, no energy, limp, pale, lethargic, expecting there to be a ear infection or something and nope, couldn't find anything wrong. I sat there and said to her (Dr.) "look at her, somethings wrong".  I didn't know what to do. Then I got this report on Miralax-and all I can think right now is are you freakin kidding me!! I encourage you to read the full articles for all info-what it is actually made of and all the effects.  Here are just a couple excerpts and my main concerns:
 

In some situations, metabolic acidosis can be a mild, chronic condition; however, it may lead to shock or death in severe cases. Neuropsychiatric adverse events may include seizures, tremors, tics, headache, anxiety, lethargy, sedation, aggression, rages, obsessive-compulsive behaviors including repetitive chewing and sucking, paranoia and mood swings. (this is Asia, I've seen it all except the "tics" & not sure about the "tremors")

 

use in children and warning of potential adverse events associated with PEG 3350 laxative products. Adverse events reported in the FDA Adverse Event Reporting System include, but are not limited to: gastrointestinal, renal, urological, hematological, neurological, neuropsychiatric, dermatological, and at least 3 child fatalities.

Technically, PEG is an osmotic laxative. Because of this property, it blocks the absorption of nutrients in the small intestine. Its extended use may result in severe malnutrition-related disorders, particularly in young children and older adults. Autism is one such disorder. It may take only two weeks of an acute iron or iodine deficiency to cause autism in a child younger than two. (Asia has a  slight iron deficiency right now)

Safety and effectiveness [of PEG] in pediatric patients has not been established.”

Administration back in 1999 only for use by adults, and for no longer than 7 days. In spite of this clear and unambiguous rule, pediatricians routinely prescribe PEG-containing laxatives to children of all ages [8] anyway. Equally disturbing, many doctors encourage adults and children alike to take them indefinitely, even though the label clearly states: “Use no more than 7 days.”

“I’ve had kids on it daily for years,” said Dr. Scott W. Cohen, a pediatrician in Beverly Hills, Calif., adding that he will generally refer them to a specialist in prolonged cases. For children with chronic constipation who are not being helped by dietary changes, “We literally give it like water.”

The problem is-no one knows what this does to children. The research hasn't been done. When you  look at the Miralax label it does say "do not use more then 7 days"-for adults and kids over 17.  Children are being given adult doses of this product indefinitely. I brought this up with Asia's pediatrician and he had not heard anything. In fact, he tried to look it up on the web and couldn't find anything. I did send this info to him and I would be curious to see what he thinks. The following links are full of information-please read them. In the article on the first line it gives you links to many other articles.

http://www.gutsense.org/gutsense/the-role-of-miralax-laxative-in-autism-dementia-alzheimer.html#.UQZ0ySda1Ms.facebook

http://www.elsevierbi.com/~/media/Supporting%20Documents/The%20Tan%20Sheet/20/28/Polyethylene_glycol_citizen_petn_120603.pdf

http://www.nytimes.com/2012/05/26/us/miralax-a-popular-cure-but-never-approved-for-children.html?pagewanted=all&_r=3&

So-after all of that:) I never would have suspected Miralax to be the cause of so many of Asia's issues.  I took Asia off of Miralax almost two weeks ago...I am substituting for now with some digestive enzymes and they are currently doing the trick but, I don't know how long that will last. I hate the thought of having to deal with the pain of constipation again but, I will never give her Miralax again. It feels like I was poisoning her. I don't know how I can completely describe her change but, she is a COMPLETELY different person-and I am getting emotional right now even typing this. If I didn't see it I wouldn't believe it, night & day difference. Two days later I remember telling my husband in bewilderment-Asia just said this or just did this. She is herself again, she teases, she plays, she is bringing back words she used to say, she is eating better, she has more energy, she has a kindness again, a calmness and clarity. This happened with in 2 days-it was like a miracle. I have been holding back on this post because I didn't think it was actually happening. Don't get me wrong-she still has her tired and frustrated "tantrums"-but she doesn't have the rage and aggression that she did. I don't feel abused anymore:) Even when she is extremely frustrated she refrains from hitting and hair pulling like she was. She doesn't want to spend all day in bed! She gets up and makes a mess:) Gets in to stuff:)  Everyone has noticed a difference in her-even before I tell them this story. She has been getting notes from school saying-"She was so happy today!" Her teacher commented that "I got Asia to sit and concentrate on work today?!" and "She ate great".

I just wanted to do my share and "Spread the Word" because so many little ones are in the same situation and we really don't know the long/short term effects. Whats this product going to do to them in another 15yrs? It has never been approved by the FDA for pediatric use. Look at the labels because there are other brands made with the same ingredient -polyethylene glycol. I will be curious to see how this will effect her seizures and I hope that there is no permanent damage....

Asia Turn's 7yrs Old!

Today is Asia's Birthday and she is turning seven!! I seriously can not believe she is seven. Time really does fly by. We have been celebrating her birthday for like a week and a half now:) Because we are on Spring break, she got to bring treats to school before they started the holiday. Last weekend we did a birthday party during our "Easter" party today she gets balloons and a trip to one of her favorite places-the mall:)

 Happy Birthday Sweet Asia!! We love you!

 

 

Asia's First Bike Ride

Something to make note of: We found something that makes Asia smile!! She has been wanting to ride a bike for years but, hasn't had the strength to do so. She has such a short attention span and gives up so easily on things that helping her to try and ride on tricycles was always short lived. Every time she sees a bike though she says, "on" and pats her chest. Today at her physical therapy session she got to ride a bicycle that was "just right". It gave her all the support she needed to feel comfortable and gave her motivation to try and keep trying-yay! She loved it, I wish I had one for her that she could gain strength and confidence on:) It will go on the wish list-look at this face (I am pretty sure mine has looked that way all day because of this ride).

April is Autism Awareness Month

April is Autism Awareness Month and even though Asia is not diagnosed as "Autistic" her disorder is in the Autistic Spectrum. I also have many friends and family members effected by this disorder and I want to share the awareness. I quite often see characteristics between Asia's behavior and that of a Autistic child. I actually brought Asia to a Dr. before we had her diagnoses to have her evaluated for Autism. Even though she is very social, her mannerisms to me felt like they fell in this category and the condition can run from mild to severe. The psychiatrist who evaluated her said she couldn't do anything until her seizures were under control. A real waste of time:) Who knew a couple months later we would have this diagnoses.

Asia's repetitive behavior and Autism: She very much falls into these descriptions.

Stereotypy-is a repetitive movement such as hand flapping, body rocking.
Sameness-resistance to change; for example insisting that the furniture not be moved or refusing to be interrupted
Ritualistic Behavior-involves an unvarying pattern of daily activities, such as an unchanging menu or a dressing ritual
Restricted behavior-is limited in focus, interest, or activity, such as preoccupation with a single television program, toy or game
Self-injury-includes movements that can injure or can injure herself such as hand biting

<sup>Other Symptoms Asia displays:

 Sensory abnormalities are found in over 90% of those with autism, and are considered core features by some,[40] although there is no good evidence that sensory symptoms differentiate autism from other developmental disorders.[41] Differences are greater for under-responsivity (for example, walking into things) than for over-responsivity (for example, distress from loud noises) or for sensation seeking (for example, rhythmic movements).[42] An estimated 60%–80% of autistic people have motor signs that include poor muscle tone, poor motor planning, and toe walking;[40] deficits in motor coordination are pervasive across ASD and are greater in autism proper.[43]
Unusual eating behavior occurs in about three-quarters of children with ASD, to the extent that it was formerly a diagnostic indicator. Selectivity is the most common problem, although eating rituals and food refusal also occur;[29] this does not appear to result in malnutrition. Although some children with autism also have gastrointestinal (GI) symptoms, there is a lack of published rigorous data to support the theory that autistic children have more or different GI symptoms than usual;[44] studies report conflicting results, and the relationship between GI problems and ASD is unclear.[45]</sup>  (sited from wikipedia)
http://en.wikipedia.org/wiki/Autism

I have mentioned before that I thought Asia had difficulty in loud rooms or "situations". Today I had a experience where it was very noticeable that Asia was under distress from loud noise. We thought we would try a movie. She has been SO good (unusually good) that last few days and thought we could handle it. As soon as the previews started she got a very distressed look on her face (almost like she was in pain) and started ripping my hair out. The movie was actually pretty loud and when the character in the movie would blow a horn she would flip out even more. Yes, I had to take her out and spend a hour waiting for the rest of my family but, I just proved my own theory to myself. She was so happy outside of the theatre. I didn't know this until today but, you can get headphones at the theatre and adjust the sound of the movie. They would block out some of the sound and then could be turn down really low. The staff was so great to try and help me out in any way they could. She wouldn't go for the headphones today but, I may try that again someday and introduce them to her before the movie starts.

Wear blue on April 2, 2013 -It is Light it up Blue, World Autism Awareness Day.

Shine a light on Autism.