Friday, January 9, 2009

A New Year

Well, I'll start by apologizing for not blogging more...unfortunately, we've been on "hold" for the last month! Talk about holding your breath! We actually FINALLY got into a new pediatrician (truly, you wouldn't believe how many are not taking new patients or...are not taking patients with Noah's condition)...anyhow, we meet with her first time this up coming Monday. Trey and I are very excited because she's supposed to be incredible and very progressive.....

Over the holidays, we took Noah completely off of dairy products. I noticed such a change, that it was almost unbelievable! It's hard to keep his diet steady and Trey and I will need to be more consistant in the long run, but I think we are onto something. His current daycare is adhearing to the "no dairy" thing.... I saw a total difference in his articulation and behavior over the holiday, but unforutunately, Trey and Noah's Daycare haven't seem the same results this week.... (kind-of bummed, but that just means that there was something else working that I didn't realize that I will figure out! Let me know if any of you think of anything!!...

The article below is from a dear friend and college roomie of mine. She's been an undying support for me over the years. This article was VERY impressive and very helpful. ... Carol is one of a kind. Everyone should have a friend like her. I fully plan on trying this supplement for Noah ASAP!! :)



The "First" Apraxia Conference Initiated and Hosted by Cherab Foundation?...
How did this Apraxia Conference Come About?
Ms. Lisa Geng, President and founder of the Cherab Foundation, has been supplementing the regular diet of her son, Tanner, diagnosed with verbal apraxia, with a nutritional supplement containing a mixture of essential fatty acids (EFAs) containing omega-3 and omega-6 fatty acids. The results of the supplementation have been remarkable in that Tanner started to talk and his speech improved rapidly. After sharing her experience with hundreds of parents through the Cherab Foundation, many have adopted the EFA supplementation approach and reported improvements in their child's speech. Positive results led to The First Scientific Apraxia Conference You may also want to explore the archives of our grouplist.
What is ProEFA, EFA, LCP, and DHA? Are all "fish oils" the same? And could they possibly help your child? We all had those questions at one time. Over time and as a group, Cherab found answers. No, not all fish oils were the same. Name brand didn't matter, but for whatever reasons children with communication impairments appeared to benefit from the right formula and dosage of fish oil. Recent small studies prove our many anecdotal feedback studies from years ago were correct. Pure Omega 3 (DHA and EPA alone) will not provide the same dramatic results as those who supplement with an Omega 3/6 formula. In fact pure Omega 3 may not produce any results at all. Could be due to the blood brain barrier so don't expect blood analysis alone to provide the answers to this question.
Essential Fatty Acid Treatment StudyJ.B. Adams, J. Romdalvik, X. Liu
Summary: Double-blind, placebo-controlled study of effect of essential fatty acids (omega 3 from fish oil) on children and adults with autism. Results: Possible minor improvement in group who received ProDHA, primarily due to small improvement in social interactions. ProOmega group did slightly worse than placebo. Improvement tended to be greater in those consuming less seafood (0-1 servings/month)
Recommendation: ProDHA (from Nordic Naturals, www.nordicnaturals.com) may have small benefit.Additional note: A recent open-label study in Tucson* suggests that ProEFA (which also has a small amount of omega-6) produced more positive results than our study, so ProEFA may be better than ProDHA, but further research is needed.
*Side note on the ProEFA study. It was done for autism -but it was inspired by a child with apraxia who has a parent that learned about the importance of the right formula, dosage and quality of oils through Cherab. Too bad that was not mentioned in history of the trial. But can't change history.
Below is an archive from 2002 about how the 2001 First Scientific Apraxia Conference
happened.
From the Cherab online group
Date: Thu, 16 May 2002 02:59:14 -0000From: "kiddietalk" Subject: Re: Answers about ProEFA/ and history of how it came to be known Nordic Natural's ProEFA is the same thing as their Complete Omega Ultimate Omega with Borage Oil (it has to be that name -there are other Complete Omega's that are not the Ultimate Omega) ProEFA is the professional line which only used to be for sale to health care professionals -not parents direct. The Ultimate Omega line is the commercial line for parents, health food stores, etc. and the only difference between the two is the price. When my son Tanner responded so amazingly well to Efalex just weeks after he was diagnosed with apraxia yet months after therapy with no results as you can read in The LCP Solution book or read under apraxia online, I had just started the Children's Apraxia Network (August of 1999) and wanted to organize a feedback with our new group. Our first meeting in August I spoke with Nordic Naturals who offered to send us free samples of DHA Jr. (cod liver oil) for us to try -and I was crushed when nobody including Tanner had positive results with them. At that time I had thought all fish oil was the same.
After hearing more and more that it appeared to be only Efalex that worked for most ofus with apraxic children, I had long discussions with Michele, the owner of Nordic Naturals and kept saying "There has to be something in Efalex that you don't have in your DHA Jr. because Efalex works and DHA Jr. isn't for some reasons for most of us.
I would have probably organized something with Efalex but they were in the UK at that time through Efamol and my phone bill was already starting to pile up with running the Children's Apraxia Network -also I liked the Nordic Naturals company because I thought they were the only ones that were trying to make fish oil more appealing to children by making them into smaller strawberry flavored capsules that I wish worked. One day Michele called me and said "Lisa I have our version of Efalex which we think is better" So I again offered to do a feedback -but this time, after switching Tanner unsuccessfully from Efalex time after time I really didn't want him to be part of it -but then I did try it for him because I was curious and within a week Tanner had a surge and got the letter K sound that we were working on for over a year -and within a month he started to tell stories for the first time -and on only one capsule a day as you can hear online!! (I have to update that page!!) We arranged for Nordic Naturals to ship product to do the same feedback through the nonprofit ECHO of Canada with Rhonda, the President -(actually at that point I did it through the first nonprofit I founded -Children's Apraxia Network) Both groups found the exact same results -little to no change with cod liver oil (we used DHA Jr.) and then for the same children -moderate to unbelievable dramatic changes within days to just one to three weeks in most cases -and this wasn't a grouplist thing where people can post what they want without knowing each other. This was done through in Cherab's case a support group where we all knew each other -and each other's kids. We anecdotally found out two things -that children with diagnosed and undiagnosed apraxia had almost immediate changes on the ProEFA formula -and even more importantly we discovered that the formula is very important -and that fish oil alone doesn't appear to be successful for our children for some reason, and that our children also required the small amount of Omega 6 -such as found in the ProEFA -or the Efalex or Eye Q formula's for some reason -maybe due to the anti -inflammatory properties, perhaps they enable the Omega 3 to get to the smallvessels of the brain somehow where they are needed? Why is ProEFA now available to the parents? I don't know if they really want it to be, however when Cherab did the feedback and due to the success we all wanted to keep using it. Because after the feedback the ProEFA supply was cut off to the parents and I said "You can't do this to us!! You have to let us keep getting the ProEFA" Nordic Naturals let me distribute it through the Shop-in-Service, which at that time was the only way to get ProEFA if you were a parent outside of getting it from your doctor. Even though we from the beginning got various media attention like Inside Edition TV, etc., we were this small grass roots support group/nonprofit yet wanted the world to know something that we knew would seem "fishy" to anyone on the outside. So I was put in touch with Robert Katz PhD, formally of the NIH who runs the Omega 3 Institute who offered to assist us organizing a professional anecdotal feedback -which he did for the few months he was with us. The reports were reviewed together by Robert Katz PhD and Andrew Zimmerman MD from Kennedy Krieger. Problem was we had asked for reports from pediatricians which is what Dr. Katz wanted -which is what most people sent in, and unfortunately most were promptly discarded when they were reviewed and the pediatricians were questioned over the phone, since the MD's in most cases did not witness first hand the before and after -they filled in the reports based on the parent's testimony. So therefore the only reports that were OK'd for the professional anecdotal feedback were those from the speech pathologists that worked with the children on a daily or almost daily basis -which were only 19 of the reports. So in our attempt to make a more credible report -which it was -we had a measly amount of patients which is so sad since as we know there are literally hundreds and hundreds of testimonies (as we had on our quilt of hope that we had at the First Apraxia Conference) Well soon after the media noticed these 19 professional anecdotal reports as you can read online -which together with the continuing overwhelming amounts of parent testimonies-people all over that heard about it with any type of late talker child not just apraxic wanted to know -how do we get this fish oil? What is it? What is the dosage? Is there side effects? Does fish oil cause diarrhea, constipation or does it make a child regular if they are prone to constipation? (Once again a child prone to constipation can get constipation anytime -and I've asked experts in this area who say that fish oil will not constipate people, just the opposite -in most cases the addition of oil to a child's diet may cause mild looser stools for a few days in a handful -not all, and it does appear to make children prone to constipation more regular -and without having to give them medications or reducing amounts -check with MD's) Anyway parents that were optimists and just knew it would work, and parents that were pessimists and didn't think it would work, and those that weren't sure -didn't matter, almost all found that their late talker children when supplemented had the same positive results that you read about here. It took time for word to spread because it really does seem so simple and easy and cheap and hard to believe and so why doesn't everyone know and just do this (I don't know) and it gradually made it's way to other grouplists, and into other disorders outside of apraxia. So the demand for ProEFA vs the Ultimate Omega Complete Omega with Borage Oil really grew since that's the name everyone hears but they are the same except for ProEFA being a better price per capsule which most people don't know. So Nordic Naturals began selling ProEFA direct to parents -and they also started lettingother companies sell ProEFA to parents. You can still ask your local drug store to purchase the Complete Omega Ultimate Omega with Borage Oil -and you can also make up the formula yourself by checking the amounts of DHA, EPA and GLA -I know parents that have done that successfully too -just make sure you use fish oil from reputable companies.

Saturday, December 27, 2008

Journy Learning Center Open House 12/6/08

Today was the Journey Learning Center's open house. I brought Noah and Trey met us there - it was pretty amazing. One of the OT's, took Trey, Noah and me to their Sensory Gym. It was absolutely amazing. She spent over an hour with us and observed Noah. The first thing she noticed was that Noah had flat feet and needed orthodics. She showed Trey, Noah's pronation. She explained that orthotics could help help Noah's balance and gross motor skills immensly. Trey fortunately works with a lot of podietrist and feels that he can get one of them to help fit Noah.

She explained that there are two different "types" of Sensory Integration disorder. One in which the child needs help stimulating their senses, the other is which the child can't control the level of stimulation of their senses. Noah has trouble controling his. It's almost like he's on a sensory "high" and the more he is in a stimulating environment the more out of control he is.... and this works with his speaking, behavior, mood... everything.

She is a big advocate of skin brushing and a listening technique. She said that the listening technique (which is basically a headset with a very specific rythmatic CD), is used to help control the over or under stimulation of a child with Noah's disorder. What's really cool about it, is that you can continue to use the CD's well into the childs upbringing. ...

Definitely more to come!...

Wednesday, December 10, 2008

11/27/08

Thanks Giving.

Man... I'm not sure Noah could have been cuter with my Papa today. He was so 'lovey' with him. You can't help but have your heart melt when your child loves on your own Grandparent. I can't even imagine the joy my Grandfather must have felt. I hope that I can experience that some day with Noah's children's children.... (strange when you put it that way!)

Anyhow, he seems to do very well at my parents. As you ALL know, they have a very clean and organized home. I know you'll all find this surprising, but my Mom let's the grand kids go pretty much nuts with the toys so long as they pick them up at the end of the night. (Go Mary!!) Anyhow, between the 1 hour baths with Jacob and Amanda and playing with blocks on the stairs, Noah was in Heaven. I do think that he likes the calmness of their home...

He did show have a hard time when Jacob would pull out his toy power drill...Noah HATED the sound it made and would scream at the top of his lungs for Jacob to turn it off. I notice the same thing with my hairdryer and with the coffee grinder ... Noah literally comes into the bathroom to tell me to turn off my hairdryer. The vacuum used to bother him, but I used to put him on my shoulders while I vacuumed and he seems to have adjusted to the sound now. (and Mama got QUITE the workout - ha!).

11/28/08

Noah mowed through some "nut-thins" crackers. They are gluten-free... I didn't even realize that when I gave them to him. The next day, he had to huge poops that were not as hard for him 'to go' as usual. I'm very intrigued by this nutrition thing and am reading into it as much as possible. I want to get Noah's blood work done so that I can see if he has any food allergies.

11/23/08

We (Dad, Stephen, Teresa, Jacob and Amanda) and Noah all went to the Cowboys game today. It was fun and Noah was fascinated, but it was VERY stimulating for him. I had to pretty much be over the top, on my toes all day because he couldn't seem to find a "content" zone bc there was so much energy everywhere. He can't seem to relax when he gets set-off. .... He wouldn't really go to anyone accept me (which isn't normal with Jacob around). He would occasionally sit on Stephen's lap and my Dad's, but like I said above, normally, you can't get him away from Jacob. He wouldn't hardly be with him at all?? Today kind-of went back to my Halloween observations.. fun day, but exhausting.

Sunday, December 7, 2008

11/21/08

Went to JLC this morning....absolutely amazing! Mary read Noah's entire eval and definitely thought he'd be a good candidate for the OT program. Also, since we are catching his condition early, she feels that he would probably progress quickly through the program.... she even said the he could potentially graduate in a year. (She noted that that assumption was based off his current efforts to immulate my behavior leads... like hugging, etc.) Noah will hug complete strangers if he sees me hug someone. I'm definitely a "safe zone" for him. He sees my behavior as a safe and "ok" if he immitates. I walked through the OT gym and was VERY impressed. Mary discussed how each station worked on different sensory needs. The swings are what I found the most fascinating. The different rocking/swinging motions help center his mind. I can't wait to try the swinging on Noah. I really think he will take to it. Not only does JLC offer OT, but they offer 2 hours of speech a week and also half day school (I personally think Noah is too advanced for the school though). I left there with high hopes. I took Noah to see his peditrician this afternoon. I REALLY do not like her. She sucks. She hadn't read Noah's eval before she walked in the room and after 5 minutes in the room with him said that his diagnosis was apraxia (which we already know a year ago) and ADHT?? I do NOT agree with her, but whatever. Her bedside manner was horrible. Sh didn't even touch Noah.... she only "shoed" him away. She told me I needed to discipline him differently, but I pretty much don't want her opinion on anything. I really needed Trey there tonight because I think what "good" she may have to offer Noah, she would have been more likely to show if Trey challenged her with his medical background and knowledge. He had a case and couldn't get there unfortunately :(. Trey and I went to dinner tonight. He's not sold on the nutrition thing, but did agree that we need to get Noah a new Ped. She did say she would refer Noah to a Neuro & Pyschological Doc. I don't have their names nor the referral yet because I didn't have my new insurance card with me and they wouldn't refer w/o proof of insurance. Man! Ugh! I'm really stressed about how much Noah's care is going to cost, but I have the utmost faith that it will all work out. The Big Man has a plan for us.

11/20/08

Took Noah to Speech today and spoke at length with Annette. They recommended two different Neuro/Behavioral Ped Docs. One isn't taking any more patients and the other hasn't called me back yet. They also recommeded the Journey Learning Center (JLC). I called the JLC this afternoon and spoke with the founder, Mary, who's an OT. She has over 25 years of Ped experience who are On the Spectrum (Autistic) and/or that have Sensory Integration disorders. I meet with her tomorrow morning.