Showing posts with label folic acid. Show all posts

Friday, 19 July 2013

Is It Really #Autism?

This post has been brewing for quite awhile, but with all of the hoopla over vaccines, the "causes" of autism and possible other conditions with a similar presentation to autism I feel like it's a good time to share this.

So here's the thing about autism- there is no absolute test for it, right? The diagnosis is made by assessment of behaviors, deficits, communication problems. Parents are urged to complete the M-CHAT which is a comprehensive list of questions about their child at specific ages, and if red flags are there, further assessment is completed by a developmental pediatrician. Having your child assessed by the school system is not adequate. They can give your child a disability "label", but this should not be confused with a diagnosis.

Because there is not a blood test that gives you a definitive diagnosis, people at times question if a child "really has autism". The bottom line is, if they meet the diagnostic criteria, they have autism. Could "autistic" behaviors be caused by something else? Good question. Right now, we treat the behaviors, not the cause- or at least the medical community at large does. And some children respond to alternative treatments, some do not. Some parents have seen their children regress into autism, and others have seen the issues all along.

Why is this? Is it possible that maybe not all cases of what is diagnosed as autism are autism at all? I think that this is a very real possibility. I also think that the idea that autism could be an autoimmune disease or at least be regulated by a similar mechanism, makes a lot of medical sense. So many people with autism have other autoimmune problems, either themselves, or within their families.
http://www.autismspeaks.org/science/science-news/association-family-history-autoimmune-disease-0

I know that we, as a family, have a history of crohn's disease, rheumatoid, autism, and other chronic autoimmune bowel conditions as well. I cannot tell you how many other families we know fit this pattern. This is one possible way to understand the huge increase in autism in recent years- what other disorders have increased? Crohns, rheumatoid, fibromyalgia, diabetes, celiac, lupus. These are all autoimmune disorders right? It also goes back to the idea that there is no such thing as a genetic epidemic. http://www.medicalnewstoday.com/articles/246960.php

"With the rapid increase in autoimmune diseases, it clearly suggests that environmental factors are at play due to the significant increase in these diseases. Genes do not change in such a short period of time."

http://jcn.sagepub.com/content/14/6/388.short

So if autism might be an autoimmune problem, it makes me wonder, are there other autoimmune disorders that cause symptoms of autism. For instance....celiac
http://www.celiaccentral.org/Celiac-Disease/Related-Diseases/Autism-and-Celiac-Disease/37/ Is this why the gluten/casein free diet is life changing for some kids with autism and not others? Could there be underlying celiac disease?

Celiac Disease-Autism Link

Category: Blog, Signs and Symptoms
Published Dated: February 18, 2010
Writen by: katymchenry

The latest statistics say that 1 in 91 children have a diagnosis of autism. At the same time, it is now estimated that 1 in 100 individuals has celiac disease. Both of these conditions have paralleled each other in their increasing diagnosis over the years and recently, parents have been making the link, putting their children on gluten/casein free diets. However, what is behind the association between gluten and autism? Is there a link? Several studies say there is.
An association has been observed between children who have gastrointestinal symptoms and a family history of autoimmune disease as well as language regression (Valicenti-McDermott, McVicar, Cohen, Weshil, Shinnar, 2008). The study included 100 children with autism spectrum disorder. According to their parents, those with language regression more frequently suffered from abnormal stool patterns (40% versus 12%) and 24% of the children with language regression had an increased family history of celiac disease or IBD while none of the children without language regression did.
A smaller study of only 21 patients with autism found that 9 of the participants had an increased intestinal permeability compared to the control group (D’Eufemia, Celli, Finocchiaro, Pacifico, Viozzi, Zaccagnini, 1996). The study does not mention celiac disease, but it is important to note that it is a well known cause of increased intestinal permeability.
We are fairly certain that yes, a link between celiac disease and autism is there. But has it been shown that a gluten free diet might help ease the symptoms of autism? A 5-year-old boy diagnosed with severe autism and suffering from gastrointestinal symptoms was placed on a gluten free diet and given nutritional supplements in a clinical study (Genuis, Bouchard, 2010). Not only did his GI symptoms quickly resolve themselves, but his symptoms of autism also progressively subsided.

And now a little more to make your head spin....
http://www.ncbi.nlm.nih.gov/pubmed/16917400

Untreated celiac disease may be associated with hyperhomocysteinemia caused by a combination of vitamin deficiencies and variants in the MTHFR gene. Abnormalities do not consistently improve with gluten-free diet. The abnormal findings could result from vitamin deficiencies or variant MTHFR status. Possible clinical implications for patients with celiac disease and hyperhomocysteinemia are reviewed.

Huh, so these people with celiac only improved when folic acid was added to the gluten free diet- and this was due to MTHFR variants.

I just don't know what I think about this yet. What I do know is that based on some of the genetic issues I have read about with regard to autism, this seems to start tying a lot of things together, at least for me.

If you recall from past posts, MTHFR mutations have also been suspected as a possible cause of autism. My son's both have them. This is confirmed. (http://jackandnatesmom.blogspot.com/2012/10/more-answersmore-questions.html)
This is why I hold fast to the idea that the medical community is as of yet clueless about what is causing autism. There are leads like these out there....it feels to me like people are either ignoring or discounting them. Oh, and look at this....nothing definitively said, but it is something to think about.
http://www.ncbi.nlm.nih.gov/pubmed/15196997

I know many will disagree with me on all of this- but this is not even my opinion so much as me reading data that is readily available. From reputable sources. And this is just one of many theories. That being said, I can see the logic. Can you? The biochemist and nurse in me just can't let this go.

Tuesday, 16 April 2013

Jack Put It Best....

Nate has had a couple of pretty good days. Words have been flowing quite a bit more freely than we have heard, well ever. Yesterday he was mad when I went to get him dressed for school and he said "I no want get dressed" or something close to that. Last night John asked him if he wanted to go upstairs with mommy and he kind of repeated it. He was trying to say "one two three" with Miss Gwen during his session. He asked for more song at bed.

I am happy about it. But over time I have learned to take each day as it comes, and all progress as a "good day" until Nate proves otherwise. A year ago, I would have felt like "here we go!". That this was "it" and Nate was going to start making huge leaps like some of the other kids. I have set myself up for disappointment too many times, so now, I try to just smile and think, yes, he's in there somewhere. I restarted his leucovorin after hearing one of the doctor's lectures on cerebral folate deficiency and being told that hyperactivity on leucovorin is actually a good sign. I started at a smaller dose to begin with and will gradually increase, as treating cerebral folate deficiency is showing great promise in autism research. Basically, I could dump a truckload of folic acid on Nathan and it might not make it into his brain, because he lacks the ability to transport the active form across the blood-brain barrier. The treatment for this is folinic acid (a further broken down form of folic acid). Which by the way, is what leucovorin is.

There are some very interesting articles on this if you follow the link below:
http://www.rossignolmedicalcenter.com/articles/

So we are doing that. And after listening to Dr. Anju speak, I also started Nate on something called "yeast aid", which contains multiple natural ingredients that support the immune system and help control yeast in the body, things like olive leaf extract, goldenseal (thank God he will now pass his drug test, lol), oregano, and cranberry extract.

http://kirkmanlabs.com/ProductKirkman/112/1/Yeast-Aidandtrade;-Hypoallergenic/

So those are the latest things I have changed. Oh, and John has started doing some "juicing" as well. His first John driven intervention- whoot whoot!

I am watching, and I am waiting. I am not allowing myself to become too excited at any positive changes- they could be transient. I of course really really hope they are not.

Jack said it best this morning. I asked him to go open Nate's door because I could hear him in there awake. Jack said to me "I like Natey, do you?" I answered "of course I love Natey". He then said "I just have to wait right?" I asked him what for, although I already knew the answer, he has been saying this since Natey was born. And he said "for him to get bigger, so someday he can talk to me, right?". He was looking at me so earnestly, so obviously thinking that Natey really is still a baby, that I felt the need to sit down with him for a few minutes and explain in more detail than I have in the past that Natey is having a lot of trouble learning how to talk, which is why we send him on the special bus every day. He seemed to get it, and in the end, he is right, we do just have to wait. We can try everything under the sun, but in the end, we can't control this. Just have to pray and wait.

Saturday, 19 January 2013

It Just Crept Up On Me!

I was trying to make this evening somewhat productive after the last few days have been a wash. We have been in lockdown basically since the Dr. Brenner appt- which makes me highly suspicious that this is where we picked up the bug, and I haven't had a chance to sort through all of the supplement/medication changes we made. I did get a chance to research them, verify doses, and order the best possible formulations, the ones that were not prescriptions anyway. It was funny, when I took Nate in to be tested for flu, I brought our regular pediatrician the note that Dr. Brenner always gives me to give to her as communication and she said Jenny, I'm a doctor and I can't read this one. Worst thing was I had had to call both the local pharmacy and our compounding pharmacy and ask about all of the prescriptions he sent in before I could decipher the word she was pointing to- Carnitor. Now if a nurse and a doctor can't read your handwriting- that's pretty bad. I'll cut him a break, he sends hand written notes to our primary pediatrician- he gets major points for that. So anyway, I started by just writing out exactly what I am expected to get into these boys. And that is as far as I have gotten- too overwhelmed. I need a new plan- hadn't realized how much we were up to- like I said, it just crept up on me. And this is also with stopping things that didn't seem to be working.....
Here is our current list (this is a good reference spot for me- guarantee I won't lose this :))

probiotic:
Nate 1/4 tsp qd
Jack 1 tab qd

Calcium:
1/2 tsp qd

MSM
3 grams/day- 1 scoop

P5P- Nate
50 mg tid

zinc
15mg/day 1/2 cap

GABA- Jack
700mg tid

curcumin- Nate
1 scoop qd

miralax- Jack
1 scoop/day

Inositol- Jack
2000 mg tid (1 scoop)

fluconazole
2ml qd

clonidine- Jack
0.2mg qhs

leucovorin
2.5mg 3x/week

carnitor
1tsp bid

vitamin c
1/4 tsp qd

speak smooth (fish oil + vitamin E)
1 tsp qd

methyl B12 shots
Nate 3x/wk
Jack 2x/wk

transdermal glutathione
0.5ml 2x/d

Gasp. I gotta find me a schedule, or a way to sneak an NG tube in while the boys are sleeping every night. Seriously, is it just me, or is this just obscene for kids who don't swallow pills yet? Well Jack actually can swallow small ones now, but I am not pushing my luck- actually maybe I should. Ugh....help!

Thursday, 15 November 2012

Could it "B"?

Nate has been on methylcobalamin shots since about February. This is an activated form of vitamin B-12 and it has been found to be helpful to people with autism, especially those with the MTHFR gene (which Nate has). The dose was increased in May. We have definitely seen improvements in Nate with this addition, increased eye contact for sure, and slow steady progress in other areas. The idea of giving shots for many parents is appalling. I have been able to handle it with Nate- he was so dazed when we first started the shots that he didn't even react to the needle in his bum. Every once in awhile I'd get a whine, but honestly he cried harder when I wiped his nose- no exaggeration. As he became more aware, he started crying with the shots, but now he has progressed to being mr. attitude about it. He runs away, laughing, and then after the shot he rubs his butt cheek while glaring at me just long enough to get his point across and then he goes back to whatever he was doing.

When we went to see Dr. Brenner last week he stated that since Nate is a "responder" to the methyl-B12 but has not made a ton of progress we should go ahead and increase his dose. I had been giving him 0.1 cc on monday wed and fri. He increased it to 0.3 cc three times a week, but since I still had about 6 injections of the original dose he suggested I just double up on those for the next week and then go for the full increase when I refill. So for the past week I have been doing double shot duty- Natey's poor bummer. That being said---- there IS a difference. An aside, these effects tend to take place very quickly, within days. There are some kids where nothing is seen for up to a month who still end up being responders, but that is not the norm. Once a child is identified as a responder they need to continue this treatment for approximately 3 years. It's a small price to pay if you're seeing great improvements.

So back to the changes I am seeing in Nate- more repetition. He is pointing to all of the different animals in his books when I say "touch _____". He is choosing between 2 books. When he was making a turkey at school today he said gobble. I find him literally staring into my eyes with an intensity I didn't know he had in him. He is tantruming more, oh joy. There is just an over all increased awareness. Then today I saw some physical proof of improvement. I am not going to go into all of the science of it, plus it's kinda gross, but suffice it to say that many many children with autism have significant GI/poop issues. It is linked with the MTHFR gene, impaired methylation, which makes sense since other individuals with this gene mutation tend to have diagnoses like IBS and crohn's. Today, Nate had his first solid, non-grainy, and not nasty smelling poop in I can't even tell you how long. I did a complete double take. I know you are all thinking that all poopy diapers smell- I beg to differ!!! We are talking BAD! Normal poop smell is pleasant after that. I believe this improvement is a result of the increased dose of methyl-B12 and the addition of leucovorin last week. I believe his little system is functioning better.

Despite all of the positives, there has been one negative- and that is MAJOR sleep disturbances. Now initially I would have said that this was more related to the fact that he is transitioning to a big boy bed, but he had several nights last week when he slept through the night. The last 3 nights Nate has been up for literally 4 hours in the middle of the night. And it's not that he was just awake, he was WIRED. Reminded me a bit of Jack when he is going through a bad sleep stint. I gave Nate a double dose of melatonin at 3am this morning and it did nothing. I was starting to feel bummed out, as this can be considered an "intolerable" side effect of the methyl B12 if it persists, so I started googling my little heart out as usual. Found this in a presentation given at a TACA conference by the foremost expert in methl-B12 and autism.

Folinic acid should be added after the first 5-week clinical trial but not at the same time as Methyl-B12. It should be added alone and its dose should start low and then be incrementally increased to see how it is tolerated. From my research, approximately 20% of children become hyper and/or cannot sleep when folinic acid is added.

So we added leucovorin- an even more broken down/active form of folic acid than folinic acid. Guess what? I increased the dose on Monday! Can I say bingo now? So tomorrow I will cut the dose of this and see if we get some sleep. I really don't want to have to decrease the B12 when I am seeing so much positive, so I hope I am right about the leucovorin being the culprit. Keep your fingers crossed for us.

Resources for ya:

http://www.tacanow.org/family-resources/methyl-b12-a-treatment-for-asd-with-methylation-issues/

http://www.drneubrander.com/

Friday, 9 November 2012

Welcome to Reality AAP- We're Happy to See You!!!

I have never posted a full article on my blog before, but I didn't want to risk that you wouldn't follow the link, this is too important. I have spoken before about how difficult it was to find a physician who would acknowledge the underlying physical issues that contribute to autism. The first developmental pediatrician we saw with Jack discouraged the use of special diets, stating there was no evidence that they worked. I have seen many people roll their eyes at all of the interventions we have attempted with the boys as if they are "hocus pocus". The relative who I spoke with who has 4 children on the spectrum was dealing with this issue back in the late 80's and early 90's, when all of this was considered "nutty". She worked closely with Dr. Buie, who is referenced in this article, to help her sons, and she was successful. Luckily for our children, the anectdotal evidence has been enough to motivate us to fight for these interventions for our children. My hope is that as further research is done, and further acknowledgment of these problems is obtained, full insurance coverage will be available to families who have literally been going bankrupt to help their children because autism is not a "physical condition". Way to go AAP!!! Big step in the right direction....

Gut-Brain Connection? Leaky Gut? No longer “Crazy Talk” says AAP

November 8, 2012

tags: AAP, American Academy of Pediatrics, Autism, autism is treatable, Dr Bob Sears, Gastrointestinal autism

By Dr. Bob Sears, Pediatrician and TACA Physician Advisory Member

The American Academy of Pediatrics (AAP) has just taken a giant leap toward recognizing the association between gastrointestinal problems and Autism Spectrum Disorders (ASD.) The November 2012 issue of their journal, Pediatrics, has a 200-page supplement entitled Improving Health Care for Children and Youth With Autism and Other Neurodevelopmental Disorders (Note: this guide was not currently available online.) As I perused the various articles to see what the AAP was up to, one particular gem caught my eye: Gastrointestinal (GI) Conditions in Children With Autism Spectrum Disorder: Developing a Research Agenda. Curiously optimistic, I decided to pause the Saturday-afternoon college football game and read the article. After a mere three sentences, my jaw dropped. “Many individuals with ASDs have symptoms of associated medical conditions, including seizures, sleep problems, metabolic conditions, and gastrointestinal disorders (the italics are mine), which have significant health, developmental, social, and educational impacts.” A few lines later I found there is a “lack of recognition by clinicians that certain behavioral manifestations in children with ASDs are indicators of GI problems (eg, pain, discomfort, or nausea).”
My first thought was that someone from ARI or MAPS had snuck into the AAP and switched a few words in the article before it went to press, and no one had noticed. But as I read the entire piece, I was shocked to see other crazy ideas such as:

“Clinical practice and research to date indicate the important role of GI conditions in ASDs and their impact on children as well as their parents and clinicians.”
“Gut-brain connection, immune function, and genome-microbiome interaction.” Yes, it actually said gut-brain connection!
“Increasingly, evidence supports a combination of changes in gut microflora, intestinal permeability (intestinal what?), inappropriate immune response, activation of specific metabolic pathways, and behavioral changes.”
“Endoscopic analyses of children with ASD and GI symptoms have revealed the presence of a subtle, diffuse inflammation of the intestinal tract.”
“Autoimmune responses in children with ASDs and a familial history of autoimmunity have been reported.”
“Autoantibodies could indicate the presence of inflammatory processes and/or an autoimmune component that could affect the integrity of the mucosal barrier and contribute to decreased mucosal barrier integrity.”
“Leaky gut.” Yes! It actually used those two foreign words that have been scoffed at for so long, and explains the research supporting this theory so that we general pediatricians can understand and begin to believe it.
“Nutritional status and nutrient intake are inextricably related in children with autism.”
A table on “Biomarkers as potential outcome measures” includes testing for: intestinal permeability to assess leaky gut, calprotectin for intestinal inflammation, celiac disease serology tests to assess gluten sensitivity, food allergy panels (not sure what for . . . maybe food allergies play some sort of role in all this?), organic acid testing for B12 or folate deficiency, and analysis of gut microbiota.

The article ends with a discussion on the lack of accepted treatments for GI problems specific to children with ASD and outlines six key research objectives:

Determine the pathology of GI conditions in ASD.
Increase animal research in this area.
Identify biomarkers to guide treatment.
Better evaluate nutritional status.
Identify behavioral phenotypes related to poor nutritional status.
Develop evidence-based algorithms to help guide clinicians in the evaluation and treatment of GI problems in ASD.

By the time I finished reading, the cynical frame of mind with which I usually read mainstream articles about autism treatment was replaced with optimism. Finally, mainstream research is planning to look at the gastrointestinal and nutritional aspects of biomedical treatment for autism. For twenty years or more, biomedical physicians have been treating GI problems in autism without much support from thorough mainstream research, and we’ve endured much criticism for doing so. Even worse, parents of children with autism have been begging pediatricians for help, will little acknowledgement that there is any possibility of a gut-brain connection in autism. The tide began to turn in January 2010 with Dr. Tim Buie’s consensus report on GI problems in autism (Pediatrics. 2010;125(suppl 1):S1-S18). And now the tide is actually surging in our favor.
This article doesn’t actually support any particular treatments for GI problems in autism, and we are many years away from mainstream medical research coming to fruition in this area. But it is nice to know that mainstream help is on the way, and that if any doctor tries to ridicule parents for asking for help with their child’s GI problems, you now have the AAP on your side. You can waive this article in the doctor’s face. We pediatricians love that. But seriously, the full text of this article will likely become available online soon. You can view the first part of it here: http://pediatrics.aappublications.org/content/130/Supplement_2/S160.extract?cited-by=yes&legid=pediatrics;130/Supplement_2/S160 . If you have an open-minded pediatrician, and need help, hand he or she this article, and you may be able to get your doctor to test and treat some of your child’s GI problems.
As a side note, this same edition of the journal has an article on the importance of evaluating and treating constipation in ASDs. Definitely a good read for your pediatrician if your child struggles with this, and it even suggests testing such kids for thyroid disease, lead overload, and, get this . . . celiac disease! Here’s a link: http://pediatrics.aappublications.org/content/130/Supplement_2/S98.abstract
Thank you AAP!!!
Dr. Bob Sears
Pediatrician and TACA Medical Advisory
Pediatrician and author of The Autism Book: What Every Parent Need to Know About Early Detection, Treatment, Recovery, and Prevention and The Vaccine Book.

Tuesday, 6 November 2012

Just Keep Swimming

What a crazy busy couple of days this has been. After yet another migraine filled weekend I was frankly worried that I couldn't get everything done these past few days. But as always, I muddled through. Not that the week is over, but the worst is. Sometimes I feel like Dory from Finding Nemo- Just keep swimming... At 8:30 yesterday morning we met our family photographer at a park for portraits- while I have been dreading this, it was also hugely important to me. I wanted to recognize and celebrate our little family and our survival after the past year. We even did some shots of just John and me, first time we've done that since our wedding. That part was really nice. Nate was incredibly fussy the whole time- granted it was freezing outside, but I had both boys layered to the max and thought they were rather cozy. It was breezy, and Nate even cried when we put him on the swings. The only ways I could get a smile were to throw him up in the air or alternately squat down on the ground and run at him really fast. Seriously, I am sore today. Our photographer Heather is amazing and I am sure she managed to get some good stuff.

After that we had an 11:30 appointment up at our boys' autism specialist Dr. Brenner. Literally on the drive over Nate developed sure fire symptoms of pink eye- by the time we got there my poor boy was crusty. That wind must've hurt so much! Poor buddy. We hadn't seen Dr. Brenner in several months and I knew the appointment would be jam-packed. I have to touch once more on just how amazing this man is- he spent over 2 hours with us- now granted he took all of his calls while meeting with us, filled out requisitions and ordered his lunch. I am completely great with that- his time is valuable and the fact that it was an "insurance covered" visit means that it should have lasted no more than 15 minutes for each child. Clearly he does not subscribe to this guideline, at least not with his kids on the spectrum. He went through all the lab results, there were several interesting things. They do both have the MTHFR gene- as he stated, many many people have this, it's only in the past 15 or so years that it has become a "problem". There are many theories about this, but the bottom line is that most professionals think it has to do with environmental exposure- BPA, antibiotics, vaccines, contaminated water and soil, just to name a few triggering the issues this gene mutation can cause. He did prescribe a form of folic acid that is further broken down- leucovorin. Hearing this medication name made me freeze up for a second- it's a drug I used to give IV to my oncology patients when they were receiving certain chemotherapies. It basically guards their bodies from harmful effects of the chemo. That is where this drug is catalogged in my mind. Time to reframe. So that was one of the MANY changes he made to the boys' regimens. More labwork, including urine. He increased Nate's dose of methyl-B12, asked me to try it with Jack as well. I am worried sick about giving Jack injections, but it is what it is. We can do just about anything we put our minds to as a family. He also prescribed something called MSM for both boys, told me to increase their P5P, start them both on GABA, and start transdermal glutathione. Oh and just in case I wasn't about to pass out, he would also like me to try adding the Feingold diet. This eliminates all synthetic coloring, artificial flavors and preservatives and all phenols. Since we do most of this, doesn't sound so bad- except that phenols are basically in most fruits- apples, berries, grapes, oranges, peaches, plums, tangerines. Jack's favorite foods. Awesome. Not feeling the motivation on the elimination of fruits. Sigh. Jack's hair samples came back with high levels of mercury. One of the urine tests should confirm this. This was the opposite of what I was expecting- thought it would be Nate, if only one of them. Jack had an incredible amount of dental work about a year ago due to an enamel defect, and now John and I are wondering about what type of fillings they used on him. Further investigation of this is needed.

After that appointment, I went home and put in a half day of work. Went to bed early as today was a full work day, another md appointment for Jack, and squeezing in voting. Then last night, the shit hit the fan. Both boys were up off and on all night. Sleep has been becoming more of an issue over these past few weeks again- Nate has been falling into a pattern where he wakes up at about 2:30 am and refuses to go back down- screaming until I come back in, like tantrum screaming. I resolved last night that I was going to let him cry it out. It usually takes 1 or 2 nights to get him back into his usual pattern. Last night Nate had other plans. After he woke up and I rocked him for a few minutes I put him back down and of course he started screaming. Then I heard the usual thuds of him throwing everything out of the crib. Then I heard a really big thud and a scream. And Nate was out of his crib. CRAP. Just to be sure it wasn't a coincidence, I put him back in and watched him basically swing himself over the bars- no leverage, nothing to climb on, just sheer force of will. And as I watched him I realized- I. am. completely. screwed. I have no idea how I am going to keep my sweet baby in a bed. We all know by know that his receptive language comprehension is extremely delayed, and I just don't think he will be able to grasp this concept. However, safety first. So down came the crib today- thank you so much John for doing this so I didn't have to sit and sob while I did it. We were hoping to eek out another few months of him being our "baby". It's all so bittersweet.

Of course we had nothing prepared for this situation- so tonight he will be on his mattress on the floor. A gracious mommy friend will be letting us borrow her toddler bed for a few weeks until I can get a bed for him. I don't wanna. Does this really mean I don't have a baby anymore? That just breaks my heart....

The good news is that this is what happened this evening since he didn't sleep last night....

The bad news is that I have no idea how long this will last, so I'd better hit the hay sooner rather than later.

Isn't he the most precious thing? Sometimes I wish he could stay little forever...

Saturday, 27 October 2012

Information Overload

Wow. Today was intense. No, Frankenstorm has not yet reached us, although intense preparations are in progress- generator is gassed, in the wagon, and aimed at the exit of our garage, extension cords are detangled, we have purchased water, beer, wine, beer, wine, D batteries. We are ready.

However that is not what this post is about. I had an amazing opportunity today (as did our entire local TACA chapter) to hear the illustrious Dr. Anju Usman speak. She is a prominent DAN! doctor who is based in Illinois. It was amusing really, they turned the lights down at the beginning of the lecture, then changed their minds, worried people might doze, and turned them back up. This was information for my children- my ears were glued wide open- the only way I was dozing off was if I received a blow to my head.

The main topic of the lecture was the gut-brain connection in autism and various treatment modalities. All of this is controversial. The medical community at large has not accepted these practices as of yet, mainstream medicine still considers autism to be a behavior/mental disorder. Here is the basic definition in Stedman's Medical Dictionary (one of the first texts you are handed in nursing school- or at least in the "old days", haha)

A mental disorder characterized by severely abnormal development of social interaction and of verbal and nonverbal communication skills. Affected people may adhere to inflexible, nonfunctional rituals or routines. They may become upset with even trivial changes in their environment. They often have a limited range of interests but may become preoccupied with a narrow range of subjects or activities. They appear unable to understand others' feelings and often have poor eye contact with others. Unpredictable mood swings may occur. Many demonstrate stereotypical motor mannerisms such as hand or finger flapping, body rocking, or dipping. The disorder is probably caused by organically based central nervous system dysfunction, especially in the ability to process social or emotional information or language. Cf.: Asperger disorder

There is of course no mention of genetics, actual medical causes, and certainly nothing about the GI tract in this definition. In order to start learning about these aspects of autism (and note that I do not say theories, as I believe them to be fact), one has to do their own research, to connect with the right people, to stumble upon an amazing pediatrician like our family did. Our first pediatrician labeled Jack manipulative and "difficult". The first developmental pediatrician told me not to bother with any special diets, if I wanted to try anything, B vitamins would be a good idea. So when we first went to see our current pediatrician and she started talking diets, supplements, blood, stool and urine tests, I was overwhelmed to say the least. Last fall was a blur of trying to implement everything that was being thrown at me, and then trying to understand why! And I was a biochemistry major! Can't imagine how other parents with different backgrounds must feel when confronted with all of this. I thought our pediatrician was so "radical", and for a general ped she is, but in reality she was just getting us started on the right path. And I have known for awhile that there is much more that we need to do. Today just drove that point home a little more. Consider me once again overwhelmed and confused. I am not confused about the actual interventions, not even their scientific basis. I don't know what to do first, I don't know what each of my kids needs. And they are so stinking different. We go to see our autism doctor in less than two weeks- I will be armed and dangerous when I walk in to his office.

Dr. Usman went through all of the functions of the GI tract, which was in general a review for me. Then she went in to many of the issues that can cause impairment in the function of the GI tract- bacteria, yeast, "leaky gut" (basically not absorbing nutrients appropriately)- it's all very complex, and if I were on the outside of this situation looking in I would find it completely fascinating. Instead I find it horrifying- when it's your kid, you're sitting on the edge of your seat, you want too throw yourself at this person's feet and scream fix them, please! Of course I didn't do this- I was grateful just to hear her speak for 3 hours.

I am going to try to curtail the amount of information I communicate, as I know I have a tendency to start throwing a million different things out there and making people feel like their heads are going to explode (lol). I will say that the things that she talked about in her lecture touched on almost all of my areas of concern for the boys. The very first thing she talked about, before she began her own lecture, was the MTHFR gene and research being conducted on this and what they are now calling "cerebral folate deficiency". This just confirmed that I will be asking the autism doctor for an Rx for methyl folate. I think the boys need it and I think he will agree.

Other areas that I have new plans for:
Jack's attention- I want to try GABA for him- Lee Silsby, my favorite compounding pharmacy has a cream- how much more convenient can you get when your kid can't swallow pills yet?
Their guts- I want them retested for yeast (this is at least $200 out of pocket for each of them, sigh). In fact I don't think Jack was ever tested for yeast- and he had major dental issues last year. This is a sign of many nutritional issues including gluten intolerance, but it can also be a sign of yeast. He has many of the hallmark signs of yeast overgrowth- I am just so worried about Nate's speech all the time that I feel like I overlooked it. They both likely need more probiotics and more cleansing diets- ie, fewer processed foods. Nate may even need more antifungal medication to treat his preexisting yeast.

There are many many other things that need to be investigated. So many that I just can't even get into it here yet. I need to sit down and do some major research. In between preparing for the hurricane, reading for my More Than Words Class and developing new goal oriented behavioral play plans for Nathan that will be videotaped again soon, trying to keep up with the current interventions, cleaning, doing laundry and going to work. Oh and cooking the special diets. And Jack's OT gave me about 5 articles to read today, and "prescribed" several new interventions. And even our marriage counselor handed us articles on autism and interventions this week- everyone is getting in on the action :). I don't believe in cloning- except, right now, for me. I need two of me. (Ok Helen you can be cloned right now too, and Jo you too) I am glad that I feel overwhelmed by valuable information and the number of interventions that I want to try for the boys. At least I am not lost, at least there is something I can do. Man, I really need to make some lists!

Sending some prayers to my two dear friends mentioned above. You have both been so incredibly supportive of my family, and I will do anything I can to support either of yours. Love to you both and wishes for a smooth next couple of days- you are always in my thoughts.