A shift in perspective

After putting Nate on a gluten-free, casein-free diet, we also took out soy pretty quickly, since the soy protein acts similarly in the body to gluten. However,

Going GFCF did not mean Nate’s diet was healthy.

When I decided to go GFCF, the only way I thought I could make that happen would be to replace all of the gluten- and casein-containing foods in Nate’s diet with non-gluten, non-casein duplicates, regardless of nutrition.

Even so, we saw major improvements. He started saying words and communicating. He had fewer meltdowns. His digestion improved a tiny bit. He slept better at night and didn’t wake so early.

Nate, July 2008
Nate, July 2008

Understandably, I was focused on autism and all the talk that removing gluten, casein, and soy made such a difference. So instead of quesadillas with flour tortillas and cheese, I made taquitos with fried corn tortillas, chicken, and lots of ketchup. Instead of Life cereal, I gave him Rice Chex or Kix (dry) as a snack. Instead of crackers, I gave him Fritos (with ketchup, of course).

I wasn’t looking at the big picture of what nutrition and health could mean. 

Do you see a trend in the list of foods above? They were still all nutritionally empty refined carbohydrates. This was still all his little body craved. Although we weren’t actively harming his gut with gluten and casein, we were depriving his body of nutrients it needed and were even stripping it of nutrients it had (metabolizing refined/processed carbohydrates actually strips our body of nutrients).

I continued on this path for years. Sometimes it was easy, but mostly it was hard. (Think birthday parties, church nursery snacks, pretty much any social get-together: gluten and casein abound!) But this was extremely important to me–seeing Nate heal and progress–and so I made sure not a molecule of gluten, casein, or soy crossed his lips. If an accident did happen and he got some of those foods, we could tell! A few goldfish crackers would manifest themselves in days–days–of meltdowns, whining, and tantrums–outward physical symptoms of the turmoil caused inside his body.

Then I was introduced to a local naturopath in early 2011. We all eventually would have appointments with him, but I took Nate first. After a few appointments with Nate (during which we worked on issues with parasites and probiotics/gut), he mentioned the GAPS diet.

Nate in 2011, shortly before we started GAPS
Nate in 2011, shortly before we started GAPS

The GAPS diet works in stages, with the introduction/first stage being quite restrictive; you add in more and more foods with each stage until you reach the “full GAPS” diet, which you maintain for a while (think 2 years). Eventually, you introduce dairy (also in stages), but the GAPS diet does remain gluten- and soy free. The staples of the diet are organic/unprocessed meats and broth, lots of fats, soup, cooked vegetables, eggs, naturally probiotic foods (like sauerkraut), and NO grains, starches, or sugar. After the couple of years on full GAPS, the gut should be healed and you can start coming off of the diet and eating other foods (while still eating healthy and making good choices). Basically, it is not a life sentence and has as its primary goal healing of the gut/digestive system and repopulating with beneficial bacteria so that all foods can again be tolerated.

I read Dr. McBride’s book (here it is) and was excited to get started in January 2012! Come back tomorrow to see how it went!

This post is part of the 31 Days writing challenge, during which I’m detailing our family’s journey through autism as it relates to the one lifestyle change we made that had the greatest impact on our son’s recovery: nutrition. Click here for a list of all this month’s entries as they are posted.

Changing diet, changing outcomes

Here are some of the observations I made after about a month of starting to remove gluten and casein from Nate’s diet (and continuing the enzymes):

– He started saying bye bye (not just waving) and just in the past couple of days has started saying hi. (Both at appropriate times.) He pronounces “hi” very well, and then sometimes he is overzealous and it sounds like a karate chop “hi-ya!”
– A couple of weeks ago, Jon and I realized that Nate has stopped making his “signature” grunting noise–a loud, annoying noise he made when he was frustrated or not getting his way and that would get worse if we told him to stop. As he acquires more ways to communicate, he doesn’t need that frustration noise anymore.
– In the past several days, he has started to put two words together (sporadically): bye bye Mama, bye bye snack (this afternoon), hi Dada, and all done (though I’m sure he thinks of “all done” as one word).
– He is sleeping so well–not waking at night and not crying in the morning. Months ago, he slept fine most nights, but at least one or two nights a week would involve waking and crying in the middle of the night. Also, he usually makes noise when he first wakes up in the morning now. He used to just sit/lie there in his crib for up to an hour just sort of waiting.

Did you see that?–putting two words together? Just a few months before this, I wondered if he would ever say “Mama!” This was all the evidence we needed that changing Nate’s diet was working for Nate.

Take note: we hadn’t done any other biomedical interventions yet; I changed Nate’s diet in anticipation of our first appointment at the treatment center. We saw changes before we ever went there!

Removing casein and gluten started (started) to heal what was going on in Nate’s gut, allowing his body to calm down and start to learn! He began improving in all of his traditional therapies. I believe changing Nate’s diet also changed the trajectory of his therapies–and his life. Because his body was not so overloaded and was headed more toward healing, he was able to learn and internalize all of his therapies much better.

In fact, in March 2009 (a year and a half after going gluten-casein-soy-free), Nate’s neurologist–who says she can just “hear” autism when a child with autism speaks (something in the inflection, the stilted meter, the way the child speaks)–said she can’t hear it in Nate. She used the words “best I’ve ever heard” about Nate’s language and, when we asked if she would do the CARS test again (placing Nate on the spectrum), told us, “If I did the test again on him now, there is a high likelihood he would not place on the autism spectrum at all. Perhaps I could find some tiny thing here or there to put him on the spectrum, but I really don’t think so.”

Though the neurologist wouldn’t listen to our thoughts about diet change having a huge (HUGE) impact, we knew. We saw with our own eyes the difference removing those foods made (and the negative impact when he accidentally ate them). We knew we were turning in the right direction.

Nate in November 2007, the month we changed his diet
Nate in November 2007, the month we changed his diet

This post is part of the 31 Days writing challenge, during which I’m detailing our family’s journey through autism as it relates to the one lifestyle change we made that had the greatest impact on our son’s recovery: nutrition. Click here for a list of all this month’s entries as they are posted.

Enzymes to diet

I got pretty proficient at giving Nate his enzymes before any food, and he got pretty used to taking them, though they tasted bad. We continued to see some behavioral improvements in him, and he started doing a bit better at his therapies (speech, OT, PT, behavioral/ABA).

Then, we found out that there was a special biomedical autism treatment center opening up in my parents’ small town in Virginia. The main doctor there was even a doctor I had already read about. With my grandmother’s help, we were able to schedule an appointment for Nate for the next time we would be visiting Virginia!

In anticipation of this appointment, I read about the recommendations the center usually makes. One of them was to go gluten-free and casein-free. Although the appointment was a month away, I didn’t want to waste our precious appointment by talking about a diet change that I could have already made. So, in November 2007, 8 months after Nate’s diagnosis, he went GFCF.

That first day was rough. It was going along OK–though he had been indicating all day that he wanted cookies and crackers–until we went to my in-laws’ house, where they ordered pizza. Nate did not understand why I wouldn’t let him have any, and he had a major meltdown. It was like an addict being denied the substance he is addicted to.

From Dangerous Grains by Ron Hoggan:

The addictive nature of gluten is often overlooked. For some, the first days and weeks of following a gluten-free diet are characterized by food cravings, disorientation, irritability, sleepiness, depression, mental fogginess, fatigue, and/or shortness of breath.

If you are a member of this group, the very fact that you are experiencing many of these symptoms should reinforce the need to exclude gluten from your diet. These are common symptoms of withdrawal of detoxification from gluten-derived opioid and brain neurochemical imbalances. 

Things continued to seem worse–not better–for at least a few weeks after removing gluten and casein. But that meant things were working!

This post is part of the 31 Days writing challenge, during which I’m detailing our family’s journey through autism as it relates to the one lifestyle change we made that had the greatest impact on our son’s recovery: nutrition. Click here for a list of all this month’s entries as they are posted.

New diet findings

I never thought I would say this, but I’m learning that the GFCFSF diet might not be for us. The reason? It actually might not be enough! Getting rid of gluten, casein, and soy might have just been scratching the surface of the problem this whole time. While those proteins are certainly problematic for Nate, what I’ve been reading and learning lately are showing me that there are many other environmental factors and foods that are most likely aggravating Nate’s gut and therefore his immune system and his brain.

I’m just beginning this new journey but am excited about even more improvements and changes on the horizon if/when we do implement these changes. Here’s the book I’m reading: Gut and Psychology Syndrome.

2011 Update

Nate is now a 6-year-old, thriving boy. As he approached his 5th birthday, we had our last IEP with the school district, where they had great things to say about him and recommended full mainstreaming for kindergarten. We said goodbye to special education, and we haven’t looked back! Nate went to kinder at a small private school with no aids or services and loved it!

We are still going strong on the GFCFSF diet and have put Nate’s brother and sister on the diet, too. (In fact, Levi, who is almost 3, has been on the diet since he began eating solid foods!) We see such positive results from this change alone. We do still follow many of the other treatments we started several years ago: probiotics (right now we use HMF Powder by Genestra), fish oil, folinic acid, zinc, l-taurine, DMG, and we just phased out mb12 shots.

Nate is super smart and sweet, is a good singer, is great at memorizing, loves to read. He is well ahead of his peers academically.

His struggles include a strong desire to always be first (and not let others go first) and overreaction to consequences (for example: if I tell him he must stay in his room for a time out for a certain amount of time, he almost can’t handle the confinement and will just fall apart. Or if I say he needs to stop talking and say no more words–perhaps if he was fighting or yelling in the car–he flips out as if not being able to say the next word is going to kill him). And, while he adores babies and also loves being with older kids, he sometimes has trouble with kids his own age. He always wants to be in charge, and so he often butts heads with other kids who have strong personalities too.

I am so thankful for our son. I will keep updating this blog in the hope that it might help someone else! 🙂

Gluten-free getting easier

Some cool news: Kix, Rice Chex (and some other General Mills cereals including Corn Chex) have been reformulated and are now GFCFSF! The old Kix had gluten (whole grain oats), but they don’t anymore. Jon called the manufacturer and also confirmed the cereals are made in a dedicated facility, which means nothing else with gluten is made there. This means more things are available for GFCFSF dieters at the regular grocery store, and they cost less than the specialty cereals we usually have to buy.

2009 Update

Nate is such an amazing little boy. He is now more verbal than many of his neurotypical peers. He has been able to read for several months now (self taught). He loves other kids and enthusiastically greets everyone by name (he has an amazing memory, especially with names). He courageously endures all of his treatments, including yucky tasting daily supplements, b12 shots every 3 days, and a restrictive GFCFSF diet. He is so joyful, energetic, smart, and sweet. He has a new little brother, Levi, who is 4 months old now; Nate has been nothing but sweet to him since day one.

We had an appointment with Dr. Mumper at Rimland Center last month. We went through Nate’s current supplement routine, adding a few new elements (magnesium each day to help with his auditory sensitivity/defensiveness; we reinstated cod liver oil to decrease visual stimming/using peripheral vision; we also reinstated probiotics, especially for if/when he goes on antibiotics; glutathione lotion, which has myriad benefits; and a 10-day course of two strong antibiotics to nip some possible clostridia in the bud). Dr. Mumper also recommended we take Nate back to the neurologist who originally diagnosed him two years ago, because she believed Nate would no longer qualify for the diagnosis! I have made an appointment with the neurologist for the end of this month; from what I know of her, she would be very reluctant to remove a diagnosis from a child, but Nate would still score much lower on the CARS test he originally took.  (His score in March 2007 was 43.5, which placed him in the “moderately autistic range.”)

When Dr. Mumper asked us what one treatment we believe has helped Nate the most, Jon and I agreed it is the GFCFSF diet.

Nate’s next IEP is in April. I’m very interested to hear the things his teachers will say about him, since they will have had a year with him. We are optimistic about Nate being mainstreamed by kindergarten (which will be September 2010), as I can already see Nate starting to bring home more negative than positive behaviors from his peers at school. We love this amazing boy!

P.S. After reading some of my older posts, I realized I should also update that Nate is now a good sleeper. He goes to bed at 8:00 (usually plays in his room, but then turns out his light and is in bed by 9:00) and almost always sleeps until 6:00 or a bit later. Waking/needing one of us at night is rare for him now–and it has been for probably 5 or 6 months.

One step back, two steps forward

Jon and I have noticed an interesting trend: when we stop a certain treatment (or all treatments) for Nate for a short period, he has a major regression, but when we start everything back up again, he jumps forward amazingly! (It’s kind of like one step back, two steps forward.) We have never intentionally stopped treatments, but things happen (shipments get delayed or backordered, or a diet infraction occurs, etc.). I can think of two of these events off the top of my head, but I know there have been others:

  1. Way back when we were only doing enzymes (not diet, no other supplements), I ran out of both kinds, and they were backordered on the website I order them from. In in the interim, I went to a local health food store and got some enzymes, but they were not high quality and had such a low concentration of enzymes that it was essentially like giving Nate nothing. In that week, he started whining/fussing/crying all day like he used to and had many more meltdowns and tantrums. At that point, he really didn’t have much language anyway, so he didn’t lose much in that area. When the correct enzymes finally arrived, I started Nate back on them full force. Within a day to two days, he was back to being happy and bright-eyed. And he started saying words, including “hi” and “bye bye” for the first time ever, unprompted.
  2. The second example occurred this past month. Nate got a stomach bug and high fever on Thursday, June 19. He couldn’t keep anything down, so I did not give him any of his vitamins, supplements, or enzymes (total of about eight separate items right now) all of Thursday, Friday, and some of Saturday. Even after his fever broke and he was eating a bit, he was whiny and cried most of the day for no reason, not really using words much of the day. He got many of his vits/supps on Saturday, and I started everything back up on Sunday (including his melatonin). Sunday night, he slept through the night. This is very, very rare. Monday night, he slept through the night. I can’t remember two nights in a row of sleeping through the night in months. Tuesday night, he slept through the night. Wednesday night, he did wake early in the morning and come down to our bed, but he did it quietly (in the past months, when he wakes, it is with loud crying, and Jon has to go get him). So, in the past week of nights, he has slept through the night many nights and only cried one time. That is monumental for him. We are all getting more sleep!

It is encouraging to figure out that the things we’re doing for him are working. His jumps forward might also indicate that he would do well with higher doses of certain things, but I don’t know if our family wallet can manage that right now. 🙂

Diet update

I was just reading through old posts and found the one about starting Nate on the GFCF diet. I wrote about how he had a meltdown when everyone else had pizza and he couldn’t have any. That got me thinking about how extremely well he is doing with the diet now but that I haven’t written about it here. When Nate wants to eat something in particular, but I say, “I’m sorry, but you can’t have that. It has gluten [and/or casein] in it,” he now responds by saying, “Gluten casein hurt the tummy.” Then he moves on, not begging for the food or getting upset that he can’t have it. If we are out and Lucy has pizza, he simply points out that it is Lucy’s pizza, but he doesn’t ask for any. He is starting to recognize which common items, like breads, crackers, and cookies, have gluten. It is so nice that he has become so compliant and go-with-the-flow in this area. I think part of it is that all the gluten and casein (and soy) are out of his system, so 1) his body doesn’t have those addictions anymore and 2) he forgets what the foods taste like (and that he loved them so much).

This diet has been the best change we could have made for Nate.

Special ed law tips

TACA’s special ed law day was amazing — informative, interesting, and jam-packed with stuff I’m putting to use right away.

I walked away wishing I had known some of this before, as I’ve already broken a few “rules” as far as how best to interact with Regional Center and the school district, but live and learn! I also felt so humbled to be around other parents who have been on this road with their children and done so much. One mom put her son on the GFCF diet just four days after his autism diagnosis and then used an advocate when dealing with the Regional Center to negotiate many more hours of therapy, including in home, than were originally offered. I was nowhere near that up to speed with the research or ready to act that soon after Nate’s diagnosis. It took us several months before even starting enzymes, and I never knew Nate could or should have more hours of therapy. However, I am so thankful for the progress he has made regardless of whether he should or shouldn’t have had more done earlier.

So, back to the law day. There were five sessions with speakers including special ed lawyers, a TACA mom, a Pepperdine law professor (loved him), and a neuropsychologist. Here is some of the most salient information from their talks:

IDEA (federal law)

  • Sections to know: 1400, 1401 (definitions), 1412 (least restrictive environment info), 1414, and 1415.
  • The IDEA requires education must be provided in the Least Restrictive Environment (LRE), which means maximum exposure to typical peers.
  • Education must be individualized and appropriate to the child’s needs; it should not be the school district trying to fit the child into its existing program(s).
  • If the program the district offers is inappropriate, the parents have the option to place their child in an appropriate private program and seek reimbursement from the district.  

The IEP meeting

  • Go into the meeting with “convicted civility,” not expecting a fight but hoping for cooperation. Making friends with the IEP team is valuable.
  • Create a list of items that your child must have as part of his/her IEP — goals you want to be sure are included. 
  • Tape record it, making sure to give written notice at least 24 hours in advance.
  • Request copies of the assessors’ evaluations in advance, so that you may be familiar with them before the meeting.
  • Have the district explain everything. Ask “stupid” questions, forcing them to get specific. If it’s written the child will have an hour of speech, then with whom? What are that person’s qualifications? Will it be one on one? In a group? If in a group, how many other children? And what types of abilities will those other children have? etc.
  • Think beyond what is currently available at the school.
  • Talk about goals first, then placement. Looking at a goal, determine how many hours a week of each service would be necessary to meet it, then decide how to place the child.

Independent assessments 

  • Get independent assessments for the child if possible. These are expensive, but consider the next points.
  • District assessors are looking for how my child is like other children; independent assessors are looking for how my child is unlike other children and what we can do to help fix that.
  • District assessors, either consciously or subconsciously, are limited in what they can write, and they already know what resources the district has available; independent evaluators don’t answer to anyone about what they’ve written and make recommendations not based on available resources but based on what the child needs.
  • If getting these assessments is not feasible, you may do it later: if you disagree with the district’s assessments, you may request independent assessments at the district’s expense. You are not obligated to use any of the independent evaluators they suggest, but realize, too, that the district will get to see the assessor’s opinions no matter what (whereas if you fund them, you get to see the recommendations first, and you don’t have to share them with the district).

Other tips

  • Keep everything in writing. If you do make a phone call, follow it up with an e-mail detailing all agreements, so you have record of them. 
  • Be leary any time the district mentions something is its “policy.” It very well might be a district policy, but it might violate law, and federal law always trumps district policy. Know your rights (e.g., you have the right to receive all assessments before the IEP meeting).
  • Contact each evaluator individually and ask that he/she include recommendations on the evaluation. Many will balk at this and say it’s up to the IEP team, but keep asking, because the IEP team will only decide based on the expert’s recommendations.
  • Protect your child’s privacy by not allowing information sharing.
  • You can include dietary requirements (GFCF, no soy, etc.) in the IEP, with a prescription from a doctor (like your DAN! doc). The school is required to provide special food; however, cafeteria workers often don’t know about cross-contamination of foods. I plan on sending GFCF food with Nate every day and including in the IEP that he may only eat food I have provided or approved in advance, and I will receive three days’ notice of any food-related event at school.
  • You can also include dietary goals as part of the IEP (e.g., self-monitoring when offered food — knowing what items are off limits, or knowing to ask a parent, etc.).
  • Remember: in these proceedings, your goal is the successful and appropriate education of your child.
  • WrightsLaw.com and AboutAutismLaw.comhave great information. AboutAutismLaw has lots of sample letters, too.