Thursday, January 07, 2010

Feeding Therapy Info

Some of my comments from my last post has prompted me to write another post on Jayce's feeding struggles. Please feel free to email me if you have any questions or want to continue a private conversation about feeding issues off of the blog :)

thethreejays@gmail.com

Okay, so, a brief history:

Jayce was born with feeding issues. Literally! For two weeks we could not get  him latched on to either bottle nor breast nor pacifier because of what we now know as "oral hypotonia" which is just a fancy way of saying that Jayce had low oral muscle tone. He was born completely full term so we were very confused at why he would have problems knowing how to suck.

With the help of my friends in LLL and a former neighbor who happened to be a PT at the local Peds Rehab facility, we were able to do some exercises with him to increase his tone. We went on to nurse 27 months :)

However, Jayce has always been a picky eater. He would only nurse for 7 minutes at a time, only every 4 hours (this was his schedule, not mine! Believe me, I tried hard to get him to nurse more often, especially because he was not gaining weight). He was finally diagnosed with Silent GERD. He was put on Zantac and Reglan at 4 months old. At 6 months, we switched to prevacid and stopped the reglan due to side effects.

So when it was time to do baby food, Jayce showed early on that he did not like most baby foods. By the time he was 10 months old, he would only eat a handful of jarred foods. He liked squash, carrots, broccoli cheese rice dinner, and chicken noodle dinner. They were all yellow/orange. He developed an orange face, but nothing we did could convince him to eat anything else. The only thing he'd drink in a cup was 1/2 apple juice 1/2 water. And he had a very hard time sucking out of sippy cups.

When it came time to introduce table foods (which my daughter was happily eating at 8 months and my son wouldn't touch until closer to 12 months), he would only eat cheese and cooked broccoli. Then he added a little rice and a couple of peas. Then he added a little pasta, but only one kind. Then he added pancakes and yogurt. But that was it.

When he was 14 months old, he could hold a spoon and a cup. When he was 17 months old, he stopped eating anything but pancakes and acted like he couldn't use a spoon or hold a cup anymore. That's when the hand flapping started, the toe walking was very prominent, and we were concerned about a speech delay.

At his 2 year old check up, his pediatrician convinced me that the reason he didn't eat well was because I kept giving him pancakes. She told me to stop the pancakes immediately and he'd learn to eat something else pretty fast. Um, he went 6 days without eating anything. No, I'm not kidding. I was in tears and my poor baby was lethargic. I don't think I was making enough milk to totally support him nutritionally, so he really was starving. I finally listened to my gut and told the pedi that we were not going to be seeing her anymore (she totally did not do anything about all my concerns about Jayce from day one!) and called our state's early intervention program.

In our state, a child can qualify for feeding therapy if they eat less than 10 different foods. Jayce ate 3. Pancakes, pretzels, and goldfish.

We started seeing a SN nutritionist way before we even got our autism diagnosis. She explained all about feeding issues as they relate to autism spectrum disorders and sensory processing/integration disorders. She stressed how important it was for Jayce to learn to try new foods and eat a variety of things. Kids on the spectrum tend to perseverate on many different items, objects, activities, and foods. That means their brain gets "stuck" on stuff. Yeah, a lot of toddlers like the same thing over and over again, like a favorite shirt or stuffed animal or favorite food. For kids on the spectrum, its even more pronounced than this. Its not a couple day thing, it can be an all month thing! (or, for his pancake obsession, a many month thing!)

We started seeing a SLP (speech language pathologist) for both speech and feeding issues. She was qualified for working with feeding problems, but actually didn't have much experience with it. She pretty much tried to force Jayce to come in contact with a banana at every session. Yeah, totally backfired. He would cry if he even saw a banana. And gag, and act like he was going to throw up. Eek.

Then we started seeing a new SLP at the hospital. Her approach was a bit different. First of all, she was working hand-in-hand with his OT who was doing sensory integration therapy. This included a sensory (physical) diet Sensory Smarts.com and brushing and joint compressions and also lots of swinging and spinning. I have to honestly say that we saw absolutely no progress in speech or feeding until we got his sensory system under control.

But then feeding was still our biggest challenge. The SLP used social stories and rewards and the Picture Exchange System (PES) to get him involved with food. We saw progress, but limited.

Then, last January, she went to a conference on the SOS method. It totally changed the way she did feeding therapy with kids on the spectrum. SOS Course details You can google the SOS feeding method by putting those exact words in!

Here's the basic concept we started with:

-There was no way to tell from Jayce's limited communication WHY foods bothered him. Was it the smell? Texture? Color? Temperature? What?
-So, you reduce the variables you are working with.
-We started with white foods. White string cheese, white ranch dressing, white marshmellows, white bread, white chicken.
-everything was in clear plastic ziploc bags, so Jayce didn't actually have to touch anything or smell anything.
-We played with the food in the bags. We squished the marshmellows, rolled the cheese, felt the ranch through the bags.
-Then the next week, we opened the bags and poured a small amount on the white plate.
-Then we played some more. The ranch became "mud" to drive our matchbox cars through. The string cheese was a stick. The marshmellows were made into snowmen.
-Then, the next week, we smelled the food. Then touched the food to the back of our hands. And then to our cheeks. Then to our lips for a kiss.
-Then we attempted bites, only if Jayce was willing.

Yes, this method takes FOREVER! But oh my goodness, it works!! I can't tell you how well it works. It makes food fun and safe again. Now Jayce can tell us why he doesn't like a food after he tries it, but the fact is... he's trying it!

Now we don't stick with colors and ziploc baggies. Now I bring food from home like homemade mashed potatoes and homemade chicken vegetable soup. But the concept is the same. We play with it, we make it fun and non-threatening. We practice it. Then we try to eat it :)

Our feeding therapist would like Jayce to eat 5 foods in each category before discharging him. That means 5 veggies, 5 fruits, 5 proteins, etc. We are well on our way!

I'm going to go through my old posts and tag anything dealing with feeding with Jayce if you want to search through old posts by the label.

I hope this helps!!

8 comments:

  1. thank you, I sometimes think it's all my fault Joshua is the way he is. I don't have the patience to keep trying new things. .. it's a battle I am willing to re-try.

    I am glad you fired your ped. when she said eliminate pancakes...what a quack! Glad you did the early intervention program. What is that categorized under. They have WIC for kids 5 and under here, but that's all I know of.

    Thanks for rewriting this, I can tell your very organized with all the facts you remember, you should be a doctor.

    ReplyDelete
  2. This post totally had me in tears. You explained my youngest son nearly to a T. I am so glad that I found your blog because I have not met many mothers that understand.

    ReplyDelete
  3. My son, not on the spectrum, but with sensory issues, went 3 days without eating when we asked him to try a new food. ANY new food. When he woke in the night crying from hunger after the 3rd day, I fed him whatever he wanted. Whoever said kids don't starve themselves has never met my kid!

    ReplyDelete
  4. It's amazing that you posted this today! I have to email you to say thanks!

    ReplyDelete
  5. You may be interested to check out the Free Sound Therapy Home Programme available from Sensory Activation Solutions. Their Auditory Activation Method builds on the pioneering work of Dr. Alfred Tomatis (Tomatis method) and Dr. Guy Bérard (Auditory Integration Training) and has been specifically developed with the aim to improve sensory processing, interhemispheric integration and cognitive functioning. It has helped many children and adults with a wide range of learning and developmental difficulties, ranging from dyslexia, dyspraxia and attention deficit/hyperactivity disorder to sensory processing disorders and autism. It is not a cure or medical intervention, but a structured training programme that can help alleviate some of the debilitating effects that these conditions can have on speech and physical ability, daily behaviour, emotional well-being and educational or work performance.

    There is no catch, it's absolutely free and, most importantly, often very effective. Check it out at: http://www.sascentre.com/en_free.html.

    ReplyDelete
  6. Although this last comment is kind of "spammy", I'm going to leave it in case anyone is interested in learning more about the Tomatis method. I went to a workshop on this form of listening therapy. It was very expensive to start a home program and the closest therapy setting program was over an hour away. And in my gut, I wasn't lead to explore this option.

    Jayce does listening therapy now, but its a different method and he gets it while he's doing OT.

    ReplyDelete
  7. I am wondering how is this possible? Can you explain more details in your blog post. It will be more useful.

    ReplyDelete
  8. If its not the food we prepare on the table then what is it that picky eaters don't like about not eating?

    ReplyDelete

Thanks for commenting!