"Is He High Functioning?"

Managing Edtor's Note: I met Jennifer Larson at Autism One. She was the winning bidder for a post on AoA and an autism flag signed by everyone from Dr. Wakefield to Jenny McCarthy.  (Please don't tell her, but we'd have run this post even if she hadn't won the bid.)  Thank you, Jennifer.

By Jennifer Larson

“Is he high functioning?”

I can’t tell you how many times I’ve been asked this in reference to my autistic child.  I assume they ask because I’m knowledgeable and have tried so many things to help him.   The answer is a solid “no”. 

I categorize my son as a “non responder”.  My 1st DAN! Conference was when he was 21 months.  I was on this immediately.  We’ve tried “everything”.  A few things have helped along the way, Seizure medication, Fibroblast Growth factor (Dr. Aguilar) and Yasko’s program.  Otherwise, most things seem to make him worse.  It seems there is always a reason from physicians for a regression, but at some point you just want your child to feel good and move forward. 

About a year ago, I’d pretty much given up.  Acceptance wasn’t a place I’d gone.  I wasn’t in denial, but I was in denial that this was lifelong.  I kept thinking…  We caught it so early, why isn’t my son recovered?

Cade is 8 years old (almost 9).  He was diagnosed at 19 months following a severe and very distinct regression at his 15 month vaccinations.  He received the MMR, Chicken pox and Flu.  Little did I know that it wasn’t a very good idea to do all those at one time.  Following his shots, he slept 14 hours and awoke a different kid. 

Last fall 2008 after years of seizure medication, Cade’s seizures had disappeared.  He hadn’t shown seizure activity on his EEG’s for over a year.   My gut told me I needed to do Hyperbarics. 

I told my husband we needed to buy a chamber.  I wanted to do the hard chamber at the higher pressure and 100% oxygen.  I purchased the chamber, hired and sent an EMT to training and got Cade in there.  He didn’t love the hood, but quickly became acclimated to it.  It was obvious he liked it because he doesn’t do anything he doesn’t like.  He’s diving at 1.5ata for 1 hour a day with 100% O2.

I am pleased to say, my hope has been renewed!  He might never be “recovered”, but we are making gains in time frames that I could never have imagined.  We saw improvements in just the initial 20 dives, observing very clear fine motor and articulation gains first. 
Here is a direct quote from my Facebook group (Holland Center Pediatric Autism Treatment Ctr): “Cade has started to spontaneously write his whole alphabet and even spontaneously write words. This evening he spontaneously started to spell out his colors and write the letters! His interest in letters, writing and reading has grown unbelievably. His speech articulation is so much clearer and his hand eye coordination continues to amaze me. His writing is so good when he has lined paper that I can't believe it's his. HBOT is the only thing that we've changed. It's almost hard to believe he's doing these things.”

Honestly, everything has improved!  He’s happier, trying new foods, sleeping better, speaking longer phrases/sentences, articulating better, hand eye has improved and his receptive/cognitive understanding has improved.  He finished 80 dives about a month ago and is starting up again soon. 

All of us are looking for the magic piece to helping our kids.   Reality is that there might not be one.  Some of us with less affected kids might get true recovery.  Some might get high functioning.  Others like me are hoping for a certain level of life skills and a certain level of independence for them someday.  I’ve never been quite as passionate about anything as I am about HBOT.  

Even if we don’t continue to make the gains we’ve seen so far, this has pushed our son to a new level.  Good luck to all of you…..

Jennifer Larson of The Holland Center in Excelsior, Minnesota, and Mom to Cade, 8, vaccine injured with autism.

Comments

[Kathy Blanco]

Non responder? Yeppers on that one, however, I found a key, that may help you, LYME DISEASE. Please visit, www.liafoundation.org, get the book order the DVD's, I promise you will be shocked!

[Lynn]

I have one child who has improved so much she has been on the honor roll 8 quarters.
Went from where she bounced toys all day and tuned people out to become high functioning.
My other child has not recovered like that.
She is still very disabled and still in a autism class.
They had all their shots & I regret that.
Wish I new back then what I know now.
They have been on BrainChild Nutritionals and other supplements for years.
Plus chelation therapy and have used the hyperabaric chamber.
Started treatment when they were older in elementry school as before that we believe education was the key.
They went to the local college for speech therapy for 4 quarters when very young.
Had long term home based behavior therapy.
They started school at four.
I still have so many regrets wish I did this much sooner..
But I just didn't know.
My still severe/mod daughter may have brunner syndrome.
From the genetic testing we had done its a possibilty and sounds so much like her what I read up on it.
The situation is not good in that way.
But we are lucky we have her.

[Camilla]

Sometimes the hardest thing is when you don't fit into a mold. What is Autism anyways. It is a word that has framed this "disease" into a controversy and when should health be a controversy? This is the most ridiclous notion. What if heart disease was a controversy. What if we said no heart intervention for people who have smoked and caused severe heart attacks. The argument would be ridiculous and laughed out. How is this related to the notion of being on the "severe" end of the spectrum. Because the word Autism is just a meme and a nasty word that in of itself conveys the lack of hope. All these great people on this website indeed gather inspite of this word. But remember life itself is a spectrum of disorders. There is no true prognosis and every brain recovers from an injury differently. Look to the case of the california girl who until 13 was noncommunicative, in diapers, barely eating, barely seeming to be there...but less than a decade later was going to a California College (I think it was pomona?) with an aid and her communication device. Your child's soul is full and out there. Just trying to get the body right so that the two can do the dance fully. I know a child who at 10 years old was still in diapers, and now is graduated from highschool. And was non-verbal until that time as well. THe mom did not have the benefits of a huge autism community behind her, no Dan conferences etc.. her son is indistinguishable from his peers, other than that he is an exemplary human being and on full scholoarship to a 4 year college for academics! And this was a child who at 10 no one thought was present, completely non verbal and still not potty trained. She never ever gave up, only she gave up her life, and an uncooperative husband to do it. A lot of people with strokes cannot communicate and when they are given up on, they stay that way. No medical professional has all the answers. And one can never look under every rock. But for every problem there is indeed a solution. It is the physical law of the universe. However, sometimes that solution is much harder to come by and even seemingly impossible, such as in your case and the case for my own child. The test becomes when we are tempted to give up and give in to the societal pressures that in my opinion are actually the hardest thing about dealing with this so called Autism Spectrum Disorder. I can deal with my kid, and whatever his needs, are, but the toughest thing is the naysayers and the people who are conveying that I am crazy for not giving up hope. Oh and that he does not quite fit into any model anywhere. SO I take myself out of the model and he is flourishing. I am not, be he is! And in the world of a non-verbal child, who is there, and who is waiting to find his or her door, eposure to anything negative is like an injection of poison. Try to find someone or an example of a once non-verbal person, such as a stroke survivor who will tell you one of the worst things was silent emotional poison exposure when they could not talk, yet they were present and thought they were communicating. Never give up, and never give up your image for his greatness and a vision for his future. The hardes thing is to survive in a world that does not fit your current needs, it adds a layer that is often times harder than anything else. Thank you for sharing this with the world. I can tell you I have seen miracles, and they are usually the culmination of years of hard work and sacrifice. Your son is a miracle for everyone, despite the awful things that the medical community did to him in the early years. YOu might hear this a thousand times over, but I am telling you, if you refuse to accept that the naysayers, who have had no answers along the way, and keep an open but discerning heart, knowing that one day you will see another sign when you need it, that is more powerful than anyone asking if your kid is severe, and conveying the silent poison of doubt and hopelessness. There is always an outlier, and always a miracle usually shepherded by parents like you. Thank you again for your message, and keep up the fight no matter how long it takes. May the assistance you need be delivered when you least expect it.
Thanks to your family for their gift to all of us.

[Benedetta Stilwell]

Riley's mom;
You did well to run from 600 test. It saved you some major trouble. My husband who went through the mitochondria test twice with a muscle biospy refused - said absolutely not was his son to go through this! My husband told me if our son was low on L-carnitine, and LACTIC ACID was high after he has been pretty ACTIVE - then common sense pretty much tell you he has a mitochondria. disorder.
AND it pretty much cost me my career too. My son would be sick for weeks on time, with a high fever. Going to the doctor once a week. I taught high school science, but you know there is little patience out there for a mother who has to miss a whole week of school ever two or three months, or trying to get to a doctor an hour here or there, or getting him dressed for school in the morning, only to find as we wait for the bus he suddenly begins to run a very high fever out of no where! Scary stuff.

[Teresa Conrick]

rileysmom,

I've got a biomed group for you to join-

feel free to contact me.

Teresa
redhead60707@yahoo.com

[rileysmom]

One more note...sorry
I had taken Riley to Cleveland Clinic for Mito testing and I'm not very happy with the doc. We ran blood work the first time we were there and his lactic acid was off. So he had us do another one closer to home (which I think the lab screwed up) and it came out "normal" so he said It must have been a clitch and everything is fine now. He wants to do some 600 tests to determine whether Riley has Mito dysfunction. I'm not kidding, 600. Has anyone else done Mito Testing and how many tests did it take to determine Mito Dysfunction? Am I on the right track? My husbands whole family is full of auto immune problems. Even my youngest (that I only vaccinated until she was 4 months old because every time I did, she bled from her bowels) has patches of eczema. I'm also going to have an IgG run on her the next time I see our DAN. To top it all off, our family D.O. recently lost his practice and he worked very closely with our DAN and believed in what I was doing for Riley. Now we're hunting for a new family doc.
I'm frustrated, pissed off, and so damn tired. What time is it now??? Oh yea, time for more homework.

[rileysmom]

Oh my gosh, I've been so busy this was the first time I got to check back in. We have already taken out potatoes from his diet, it seemed to work for a couple of weeks then things went back to the way they were. I will never put him back on G or C, the rest I've taken off of him because I want to test to see if I take this out, what will happen, will his skin get better? Will his gut get better. When we had his IgG ran this last time (mind you we've been GF CF for almost 2 yrs) his casein level was through the roof. My friend told me to cut out soy because it can mimic casein proteins in the gut, so I did. No change.
I have the book "Breaking the vicious cycle" that my DAN let us use till our next appt. I've read thru it but I'm just wondering exactly what he'll eat because he refuses to eat fresh fruits or veggies. Right now, we're doing meats and rice because rice was the one thing he didn't have a reaction to on his last IgG. That and turkey. Everything else...slightly reactive to everything.
Like I said we have the dx of EE now, along with the leaky gut and encephalitis. Every time I take him somewhere for testing we get another dx that just adds on to what we already have. Riley is going to be alphabet soup here soon.
The HBOT thing, I have to get on the phone with Ohio Medicaid myself. I have gotten them to cover things that even the doc tried. I'm sorta a pushy bitch and I don't speak to the flunky at the call center, I talk to the person over their head and if that doesn't work then I go over their head. The problem was I didn't find out that this whole time our DAN was trying to get him in for HBOT. If she would have said something it would have gone faster. But oh well, she is trying and that's all the truly counts.
She will not do chelation until Riley's gut is better but it is my understanding that there is NO cure for EE and his gut will never get to the point that she wants it to be to start chelation. Besides, I've been worried about doing it anyways because I've haven't been able to get a proper urine sample from him to check proferin (sp?) levels for heavy metals. They did a blood screen for heavy metals and he came back high in lead but the rest were within normal range because it's not in the blood stream.
On top of everything I'm trying to do with Riley I'm a full time student. I think I'm going to take a break because I just can't do both. I"m trying to be a full time mom to a very sick boy and a full time paralegal/law student and it's just now occurring to me that I may not be Superwoman. AND my boy comes first.
I'll post back tomorrow after our appt with the allergist. I'm not sure what will happen during this visit but I'm hoping I don't run right into an Rx pad and a pen happy doctor.
Thank you guys for helping me, you don't know how much I appreciate it.

[for jill re bc/bs]

Jill - our DAN's office just called our insurance company for us, our plan covers HBOT for heavy metal toxicity among other things. The metal toxicity was easy to prove after 9 months of chelation. We were pre-approved for 30 hours at a facility in their network. We were lucky enough that there is one within an hour's drive of our house. The tech at the HBOT center told me today that BC/BS is one of the more generous plans (could have fooled me up til now...laughable that they wouldn't pay for chelation, but will pay for HBOT for the same diagnosis), and she has seen them pay for and additional 30 hours if benefits of treatment can be shown. I don't really know what that means, will be talking more with my DAN next week and will be sure to ask. Hope this helped.

[Teresa Conrick- to rileysmom]

rileysmom-

Your post has been weighing heavily on me and I am sure others. I hope it is ok to let you know that and to also offer some support in the way of suggestions. If you have already tried them, forgive the repeat.

I couldn't help notice you said: "Last trip to the DAN, she wanted to put him in the hospital to get IV nutrients because he is starving to death in front of our faces."

And then you said he had been given a scope:
"We had a scope done about 2 weeks ago but that doc doesn't really know what he's looking for when it comes to autism guts.

Here is some information that Autism Speaks put out in collaboration with Thoughtful House in 2006. I thought it was well done and much needed. Hopefully your GI doctor will be able to use it for Riley. I am not sure if this is true, but I am wondering if you would be able to have a doctor on this list of participants either join in as a consult on Riley's case, or if you see a doctor that may be close in proximity if you chose to make a switch.

Autism Speaks Hosts Gastroenterology Workshop

The results of the conference were mailed to all of the members of the American Academy of Pediatrics:

Dear Doctor,

In October 2006, the organization “Autism Speaks” convened a group of pediatric gastroenterologists and autism specialists to review the available evidence relative to diagnosis and treatment of gastrointestinal (GI) disorders in children with autism spectrum disorders (ASD) and to propose future research initiatives. A goal of this meeting was to reach a consensus of this group on appropriate diagnostic evaluation and treatment of GI symptoms in children with ASD. Pediatricians and pediatric gastroenterologists see many children with ASD and GI symptoms. While the current literature does not contain any randomized controlled trials from which clinical recommendations can be generated, the following consensus represents a combination of expert opinion and data from the published literature.

The prevalence of GI symptoms among children with ASD is not known. (1-3). Reports of GI symptoms range from 9 to 70% of children with ASD depending on the population surveyed and how the history was elicited (4,5,6). The higher estimate included lifetime prevalence of GI symptoms (6). However, no epidemiologic studies have been published to date that specifically address the prevalence of GI symptoms in children with ASD (7). Among the most common presenting GI symptoms reported in children with ASD are constipation, diarrhea, reflux, vomiting, and abdominal discomfort (6). Diarrhea typically consists of the passage of 2-5 soft large stools per day that may contain undigested food. Constipation is defined as hard stools daily or less frequently. The child may present with loose stools signifying overflow diarrhea around an impaction. GI symptoms may be more common in younger children with ASD. Behaviors such as posturing, self injury and outbursts without obvious cause may occur secondary to many medical conditions that result in discomfort in children with ASD (8). Abdominal pain may be one common cause of behavioral exacerbation that should be considered especially in children who have limited language. At this time the precise causes of GI symptoms in children with ASD remain unknown. Both inflammatory and motility factors may be involved.

If a child with ASD presents with chronic or recurring GI symptoms, the following initial evaluation should be considered:

(here is the entire checklist of labs and tests)
http://www.thoughtfulhouse.org/pr/Autism-Speaks-Hosts-Gastroenterology-Workshop.php

Also, A smart suggestion told to me was to contact your local Representative of your district and/or state senator to help you try and achieve hbot services through your local hospital or other appropriate place.

Is there anyone out there who has an hbot near rileysmom where she could rent it or does your DAN have anyone in her practice?

Hope to hear that somehow this all works out and Riley will have some much needed healing.

Best,

Teresa

[Jennifer Larson]

Thank you all for taking the time to read my post and for all the kind comments. I feel grateful to be able to share. We are so proud of him. He continues to do so well and was really social with our family over the 4th. They all made comments on his better communication and how social he has become. Here are a few answers to the posted questions: 1- we did our 1st 80 dives with a 2 week break at 40. He dives an hour daily. 2- We bought our hard chamber from Oxyhealth. There are a few different companies that make hard chambers. I don't know if anyone rents them. I like the oxyhealth chamber because the 02 goes into a hood instead of the full chamber. 3- we did do the SCD diet for a couple years. It helped to clean up his gut from the yeast and bacteria. He became so sensitive to so many of the nut flours that we backed off. His gut continues to stay clean. I would potentially go back on it at some point. He gets all his supplements on food (doesn't swallow pills) so it's sometimes difficult to get him to eat period.

Thank you all again... :) Jennifer