Thursday, July 30, 2009

Betty Crocker Gluten-Free Mixes Coupon!

I just got an email about Betty Crocker's new Gluten-Free mixes. They are giving away free coupons, all you have to do is call a number, answer a few simple questions and then they send you on one in the mail. Wanted to share!

Be Free For Me Blog

Monday, July 27, 2009

Tweaking the Diet: Phenol Removal

A couple of months ago I stumbled across a website that talked about phenol intolerances. I couldn't believe how much of it described Brian to a tee. Here is the list of symptoms they said an individual would have if they couldn't tolerate phenols:

Some typical symptoms indicating your child may have a phenol problem are [not all of these need be present]: dark circles under the eyes, red face/ears, diarrhea, hyperactivity, aggression, headache, head banging or other self-injury, inappropriate laughter, difficulty falling asleep at night, and night waking for several hours.

I've taken the liberty to underline the symptoms that Brian shows. Not only does he show a lot of the symptoms but he also craves, really craves, a lot of high-phenol foods, especially apples. In fact Brian has always had a sordid affair with apples- giving him diarrhea, throwing up, red cheeks, cranky. We've had to remove them from his diet on several occcasions and then slowly add them back into it. I said when I found this site that I was going to test it out and remove phenols from Brian's diet. Well I didn't. It's always a big step to, yet again, remove more from your child's diet. Especially when they are usually very limited to what they'll actually eat.



Then I checked out yet another gluten-free cookbook from the library- always trying to find new ones for new recipe ideas. This one was The Kid Friendly ADHD & Autism Cookbook by Pamela J. Compart, M.D. and Dana Laake, R.D.H., M.S., L.D.N. Yet again I found another little segment in this book describing Brian and lo and behold, it was titled, "Phenol Intolerance- Phenol Sulfotransferase (PST) Deficiency".

This book was able to describe the science to me in better terms for me to understand it. As a lot of scientists, and certainly a lot of parents, believe most children with ADHD and autism have many inefficiencies in metabolic enzyme function and deficiencies in nutrients. Enzymes depend on nutrients to function properly in our bodies. When the enzymes are "lazy" a sort of traffic jam happens in their bodies. Metabolites that result from normal metabolic pathways get backed up. The "traffic" starts causing problems on other enzyme pathways. In the body, the only way to solve this gridlock is to reduce substances that must use certain enzymes and providing the nutrients to make the enzymes work better.

Phenols are naturally occuring compounds found in a lot of foods that are good for us. Fruits, vegetables, some grains and nuts- as well as flavorings and spices. Phenols have antioxidant qualities and protective functions- so they are mostly beneficial and good to consume.

The enzyme, PST, is an important part of the detoxification pathways. When that enzyme is deficient phenols are not well-tolerated and the traffic jam starts up. So the phenols are not bad, they are beneficial, it is the PST deficiency that is the problem.

The book also gives a list of symptoms- the same as I mentioned before as well as adding night sweating, wetting the bed, anger, and also large variations in functioning ability. All symptoms that Brian shows- especially after eating a whole bunch of apples in one day.

So long story short, we are going to be starting this change in the diet this Wednesday. To fix phenol sensitivity we need to remove the culprits. The biggest load on a PST Deficient child is, you guessed it, artificial colors and flavors. Also sulfites, nitrites, nitrates, MSG, HVP, and corn syrup. He doesn't get much of these- but he does occasionally. Everything on that list is now going to be an absolute zero tolerance at our house. The second biggest culprit are high-salicylate foods- which are apples, tomatoes, oranges, cocoa, red grapes, and milk. We will be making sure Brian starts back up on some vitamins we slacked on a while ago- including magnesium, B6, Vitamins C & E, and glutathione. We'll also be using Phenol Assist from Kirkmans Lab. These are all proven to help improve PST function.

I'm hoping to see some positive changes! Keep your fingers crossed!

For more information check out these sites:
* Studies on Phenol
* Behavior & Diet Studies
* Improving Detoxification Pathways

Friday, July 24, 2009

Echolalic Conversation

Brian has been displaying a LOT of echolalia now that he is talking more- that and a lot of scripted responses. Everything that is a positive answer is "Yes I do" not yeah, or sure, or okay just "yes I do!"

This morning I was tickling him and giving him hugs before I left for work. Our conversation went something like this:

Me: "Bye bye Brian"
Brian: "Bye Brian"
Me: "I love you!"
Brian: "Love you!"
Me: "See you later!"
Brian: "Later"
Me: "Are you just copying me?"
Brian: "Yes I do!!"

LOL, as much as I know echolalia and scripts could be a huge problem in the future I still enjoy it at the moment because I'm still just getting use to hearing his voice! And for him to answer that last question with a "Yes I do!" was really very very cute!

Wednesday, July 22, 2009

blurbs

So a few blips in our lives to report on, I haven't been making myself have the discipline to sit down and write whenever anything happens- so then everything piles up in my brain and I try to remember what I wanted to share on here- so a little bit of everything:

* The boys decided a few weeks ago to put both of their beds in one bedroom and make the other bedroom into a joined playroom. Had thought about doing it a long time ago but was worried that Brian's frequent night-wakings would be a problem for Corbin but Corbin has proved that he can sleep through anything so I agreed. It's worked out wonderfully. Of course I find it ironic that just a few months ago I spent all that money to give each bedroom it's own personality to fit it's occupants and now we just have a jumbled sports/trains theme in each room.

* Window guards have gone up in both rooms. I'm not sure if you remember but a while ago I found Brian had opened his window and was standing on the window sill, leaning against the screen in his second-floor bedroom. So glad to have these finally installed!

* Brian went to get his eyes checked. He did wonderfully and completed the exam completely awake!! I was so positive we'd have to go back for a sedated evaluation- such a relief to not have to!

* At the doctor's office Brian saw a huge mural of an undersea theme and said "Octopus" as clear as day. A week ago he said "Ratatouille" and today he looked at me and said "popsicle". All of a sudden these multiple-syllable words coming out of nowhere.

* At the retreat this past weekend Corbin was suppose to keep an eye on Brian while we were packing up. Corbin has been VERY bossy towards his little brother as of late and Brian started crying when Corbin started his authority routine and I turned around and said, "What's wrong Brian?" and he answered, "Cor-Cor!!" I think that was the first time he's ever answered a question like that.

*Today at riding lessons Brian only had one sidewalker, graduating from two, and trotted for a good fourth of the lesson. I can't believe how far he has come in only four lessons!

* Every day Corbin is riding further & further distances on his bike with NO training wheels- I'm so proud of him for conquering his fear! Now if only he'd get over this new fear of the upstairs and being ANYWHERE in the house by himself!

Monday, July 20, 2009

ASM Family Retreat Weekend

We got home yesterday from the most wonderful weekend ever. We attended our first family retreat- which is actually an annual event put on by the Autism Society of Maine. I went, not really knowing what to expect, even a bit apprehensive but left empowered, refreshed, and just genuinely happy.

It was so nice to get to know other parents- it's always nice to reconnect and know that you really aren't alone even though often it can feel that way. It was great for Corbin to be around other individuals with ASD- as well as myself, I was very happy to meet adults with ASD- as I really don't know any personally. The "theme" of the weekend was actually adults w/ASD and I learned a lot at the lectures about what "to look forward to"- what there is for Brian and what I can do now to make sure he has what he needs when I'm gone. I loved the respite providers who were there to help me, and all the other parents, whenever we needed- no task too small or too big- they really truly went out of their way to make sure everyone was having a wonderful time.

I enjoyed just spending time with the boys, with no worries, just really enjoying every single moment with them. It couldn't have been better.

I think I can sum up the whole weekend in that last hour we were there, walking around campus with a friend we had met and his 11 year old son with aspergers, Devon. We were just walking aimlessly, Corbin running ahead being loud, Brian on his bike, freaking out every time we turned but yet we were all just quiet and watched him figure it out on his own, and Devon picking up all these little rocks, pieces of garbage, and flowers and putting them in my cupped hands. It was really just perfect, no judgment anywhere, and myself & Chad (Devon's dad) just seeing it as completely normal- we didn't have to pause and stop them from doing their individual things so they could "fit in" or so others would stop staring.

I just loved the whole weekend- wish it could've been a whole week or longer- could've just disapeared from reality and stayed there forever.

Wednesday, July 15, 2009

A Hard Day's Night

*Phew* I don't want to move from a sitting position for hours. I want to do nothing- not even think.

Brian has had a hard two days. Both days he has come home from therapy and throws himself onto the floor- though Amber said he was fine at school. He then retreats upstairs and puts a movie on in my bedroom and snuggles in the blankets. He is completely quiet and content as long as he is in that bed with a movie on.

Yesterday we had errands to run- he cried when he heard it was time to leave. He cried getting into the car. First to the courthouse where the boys waited in the car with Josh. He cried the entire time. Secondly, to the library. Thought this would be a fun excursion- but no he went to the train table and laid underneath it crying. He didn't even choose a movie like he usually does. We had to go to the grocery store. I told Josh to run in really quick as at this point I knew it was pointless to try to bring him into another location. Again he cried the entire time. We got home- he ran into the house crying, threw himself on the floor, picked himself up and went back upstairs to where he proceeded to watch movies. An hour or so later I told him we were going to go for a visit and he cried again during the transition, cried for the first ten minutes of the car ride and then was fine. He really did quite well at the new house we were at and new distantly-related cousins he didn't know. I thought maybe that would be the end of it.

Today, he arrives home from school- same routine. He just wants to be alone upstairs. It's time for Freedom Riders. He needs to change out of shorts into pants for his riding lessons. Big BIG deal. After that I ask him to get his riding boots- he comes back with sneakers on. Again HUGE HUGE deal. He runs all the way to the car running and throws himself into the side of the van. He cries the ENTIRE 20 minutes it takes to get to riding lessons. He cries as we walk in, he cries when we have to wait, he cries getting his helmet on. He is just overwhelmed. The helmet is too tight (though it's the same one he always wears), the other kids are too noisy (even though in reality he's the loudest kid at the moment), he wants to watch the horses getting ready, but when I hold him up to the windows he kicks away screaming, I put him down, and he wants up again. He wants to be on my back (a very calming position for him), I do it for a while and then he's too heavy so he screams that I want to sit with him on my lap. He's flapping his hands at full speed and doing it next to the wall so his fingers are purposely hitting against the wall.

Then it's his turn.

He grabs his side-walker's hand, walks in, gets on Xanadu and is instantly smiling. He smiled the ENTIRE 45 minutes of his lesson. He was talking. He would look for me when he rode past the waiting area- when I waved to him he yelled out "HI!". It was awesome. He left, came home, answered Josh's question- "Did you have fun with the horses?" "YES!"

But then again he wanted to go upstairs and watch a movie- I told him no, he's had enough movies for the day. He's mad, he's just kind of wandering the house aimlessly, crying. And that's the rest of the night for the most part. He was happy in the shower and happy when he went to bed.

I completely hate when he has regressions like this. I don't know why he's so upset. I just want him to tell me. I want to know if his stomach hurts or if he is overtired. I want to make it better.

So, I'm off- not to relax like I really want to do- but to clean my house as I really didn't get anything done today.

Tuesday, July 7, 2009

Watching Movies

Just a video of Brian watching a movie- I think everyone in the world should be able to enjoy this- so many of my family & my friends have told me over and over again that when they watch a movie with Brian, he is much more interesting than the movie itself. When it's a movie he LOVES (like Horton Hears a Who) he'll laugh, run, and a lot of times act out parts of the movie seconds before they happen on the screen- he'll do this even if he hasn't seen the movie in months & months- he has an amazing memory when it comes to movies. Enjoy :)
video

Wednesday, July 1, 2009

Adult with Autism Speaks Out

I found this article over at Age of Autism and found it really moving so I wanted to share- it was a letter written by an adult with autism.


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By Roger Kulp

Kim,

I have been interested in trying to contact you for quite a while. If you want to publish this email at AoA I give you permission to do so.Actually this is more of a cry for help than anything else.

There is a lot that I don't like about AoA,but what bugs me the most is the fact you concentrate exclusively on children.There is this whole mindset that there were no autistic children who ever had severe biomedical issues, mitochondrial disease, inflammatory disease,what have you before there was thimerosol,or the current vaccine schedule in the late 1980s.When there were always autistics who had these problems, we just didn't recognize them.

As we have discovered that these diseases exist alongside autism,and may even cause it,the response should have been "Yes,let's take care of the children,but let's try to find out how many AUTISTIC ADULTS are out there,who have been suffering with these diseases for years,but have never been diagnosed."

Especially ,since we now know,that in many cases,it isn't so much what is in the vaccines,but what the shock of receiving so many vaccines so early does to the children,and that the same sort of shock can occur in unvaccinated children,who have suffered acute infection,as infants or toddlers.

This is vaccines,but it is a universe removed from mercury and thimerosol.Babies were always getting acute infections,and a lot of those who did not die developed autism.Only now do we know this.

I had acute bacterial meningitis with pulmonary complications,at five months of age.

According to my mother,I came out a different baby than when I went into the hospital. My autism has always been difficult to pin down (Sound familiar ?),but basically it was/is like severe autistic disorder but without MR/intellectual disability.Although I did not officially get diagnosed with autism until fairly recently,I am not like some neurodiversity ideologues I could name.I was diagnosed early with multiple learning disabilities,had developmental delay noted by teachers,as well as the old standby "childhood schizophrenia", a diagnosis that stuck into my early 20s.

Infection has always led to regression,and flareups of medical problems make my autism worse.My last major regression was in 2007,during another acute bout of meningitis.This period of regression lasted a year and a half.By regression,I mean the severity of my autism reverted to where it was when I was about six years old,and my adult intelligence remained intact.After this meningitis,and regression,I developed electrical seizures and stroke like episodes.

In addition to autism,I have lifelong failure to thrive,with hypermetabolism.and bowel disease,as well as a long history of idiopathic lung disease,a cardiomyopathy,conduction defect, and "myocardial angina".All of my heart and lung problems began as a teenager, none of which any of my doctors thought they were anything important,in spite of nearly dying of acute heart failure in my 20s.

I have had mysterious recurring high fevers since I was about six,and severe non-degenerative joint pain since age ten.I have been tested for cystic fibrosis,alpha1 antitrypsin deficiency,every type of autoimmune disease,and primary immune deficiency.I don't have any of them.

I did not complete puberty,in spite of "normal" hormone levels.I also have a lack of muscle development in the upper half of my body,and was born with no abdominal muscles at all.

My last primary physician agreed I probably do have mitochondrial disease,but refused to go ahead with a workup for it.saying I ought to worry about "stuff I could control,like making sure I don't develop high cholesterol."Personally,I think I have mixed mitochondrial and autoinflammatory disease,something that you could well understand.

I walked out on my doctor after he told me this.I have a guarantee that Dr.Bruce Cohen, in Cleveland wants to see me.What I don't have is another primary physician.I have spent months trying to locate another one.Every doctor that is recommended to me has turned me down because they say they only see children.If you could help find me one here in Albuquerque,I would be forever grateful.

I belong to the Noah Greenberg/"Refrigerator Mother" generation of autistics.As children,we were untreated,warehoused,or if we were verbal,dumped in mainstream classrooms to fend for ourselves.The time has long overdue for a formal public apology, to admit we were wrong on how we saw and treated autism.What's more,now that we know causes like mitochondrial disease,that these autistics could not have been tested for as children,those who have serious medical problems should be tested for it.

There are also enough purely neurodevelopmental reasons to autism delisted as a mental illness.AoA needs to take this up as a serious cause..

For far too long nondisabled (Yes I'll say it people with Aspergers are NOT truly disabled.) neurodiversity types have been the only voice of autistic adults out there. Neurodiversity ideologues like Laurent Mottron are hijacking serious autism research and threaten to take it over.The neurodiversity movement represents the single greatest threat to the well being of all autistics,just as Bruno Bettelheim and his followers did when I was a child.Both are based on a dangerously unrealistic and limited picture of what autism is.

I AM a puzzle.

Neurodiversity does not speak for me.