Eat Happy!

Eat Happy!

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**The information provided in this BLOG is in no way intended to diagnose, treat, or cure any illness. This information should never replace the advice of a doctor. Please use this information as you see fit. This information will pertain differently to each child, each adult, and each family.**

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Friday, September 14, 2012

It's Off To School We Go

A few months ago, Tom and I decided it would be great to have Ian in a Preschool program where he could be exposed to other children his age who are talking and eating. Since there are so many programs, we first had to narrow it down by who would accept him. Because of Ian’s special medical needs, there are few who are certified in these types of needs. 

What we found very quickly was that none of the ones near us have these certifications. A little annoying, but then again, I wasn’t about to push sending my kid to a school who really didn’t want them there. The best places for Ian to attend ended up being church based programs. While these preschools function in a church under religious affiliation, they tend to be fairly neutral Christian based.

We happen to enjoy the opportunity to Ian learn about Christianity and participate in activities such as Christmas pageants and Easter egg hunts. The kids get to do lots of other fun things. Trips to pumpkin patches and fire departments are planned throughout the year. The school also hosts “Mother’s Day Tea” and “Donuts for Dad” each year.

Before heading to school, I took a few photographs of Ian and his book bag. I know, a book bag! Ian needs a bag for communication folders, projects, and lunch box. He is adorable with it on his back. Lots of times, he only wears it briefly since it is so big!

Sportin' My Sweet Back Pack

All Ready Mom!

The first day of school was lots of fun for Ian. He had a great time playing with the other children and enjoying the playground. Apparently the fact that I wasn’t there was no issue. Thankfully, it was not an overly emotional moment for me, other than being proud of him and feeling hopeful. He waves to all the kids when he leaves and the kids are always excited to wave back and say goodbye.

We are so glad Ian is with other kids and enjoying his time at school. He attends two days a week for five hours. They are very accepting of Ian’s medical issues. Thankfully, we are able to arrange Ian’s schedule so he doesn’t have to worry about food while he is there.

As I was dropping him off today, I took some new pictures of him walking into the school.




Shake It Up


As if oral 1) Oral Sensory Feeding Aversion, 2) Oral Dysphagia, 3) Vagus Nerve Hypersensitivity, 4) Gastroparesis, 5) Post-Prandial Hypoglycemia, 6) GERD, 7) Ketotic Hypoglycemia, and 8) failure to Thrive weren’t enough diagnoses already....... we now have to deal with seasonal allergies. Recently we ruled out another diagnosis of Visceral Hyperalgesia. One by one, layer by layer, we are getting further into the thick of what is exhibits. For those of you interested in Visceral Hyperalgesia, I have a summary below.



Yea, yea, I know..... none of those words make any sense to the average Joe, including myself a year ago. Thanks to my medical terminology class, I was able to piece it together, but it leaves many questions even after knowing what the terms mean. “Visceral” means pertaining to the organs in the chest and trunk of the body. This area is lots of nerves involved in both the “fight or flight” (sympathetic nervous system) and the “rest and digest” (parasympathetic nervous system.) The vagus nerve’s role in this viscera is “rest and digest.” Because of this role, the vagus nerve’s effect on the stomach is to help it stay calm and relaxed. The term “hyper” refers to something being higher or excessive than normal. “Algesia” means hyper or excessive pain.” When looked at together, it suggests that Visceral Hyperalgesia refers to excessive pain in the organ tissue. This is a much un-researched field. It is a diagnosis of exclusion because no test can bring reliable conclusions. By looking at contractions and nerve stimulation, the medical field can move in the direction of this diagnosis, but too many others produce the same clinical test results. Here are some good resources if you anticipate your child, or yourself, suffering from Visceral Hyperalgesia:
Why Does My Tummy Hurt So Much? http://www.articles.complexchild.com/00006.pdf 


Other helpful articles from the same site included:
Importance of Early Pain: http://www.articles.complexchild.com/june2009/00129.pdf
Crying, Irritability, or Pain? http://www.articles.complexchild.com/nov2009/00166.pdf
Solutions for Retching: http://www.articles.complexchild.com/00010.pdf
Disorders that Mimic Reflux: http://www.articles.complexchild.com/00031.pdf
Fundo in Kids with Neuro Impairments: http://www.articles.complexchild.com/00008.pdf




Moving forward with Ian. Within the last 3 weeks, Ian has been presenting with significant increased retching and intolerance. Most of this occurs during the early am hours and with his first meal. We visited CHOP yesterday to get the scoop.

According to a physical examination and an overview of symptom details, Ian is now being treated for seasonal allergies. Early “toddler-hood” is a common time for these to occur. With Ian’s other issues going on, especially upper GI and respiratory troubles, this as no surprise. Recommendations were to begin a Rx allergy nasal spray to help clear the airways and decrease inflammation.

Another issue contributing to this scenario is enlarged tonsils. At the ENT follow-up after the ear tube placement, we were told Ian’s tonsil were incredibly large and needed to come out eventually. This are causing trouble swallowing, as well as an occasional “tickle” in his throat, triggering retching and gagging. We have an upcoming consultation in October to move forward with this.

Along the same lines, Ian’s tongue is coated with a white “film.” As a dental hygienist, I have been aware of it for quite some time. Thrush was not a concern of mine because it is not located on the cheeks and does not rub off when disrupted. Nonetheless, this film could be causing the same “tickle” in the throat because of it’s change in the thickness of the tongue. They gave Ian an anti-fungal systemic Rx to see if it would improve. 

Ian’s food was changed a bit to help with recent lower GI troubles. We add corn starch to Ian’s food because it helps buffer the glucose. As a long chain sugar, it takes longer to break down and prevents the food from dumping out of stomach too quickly, and all at once. However, corn starch can also cause lower GI distress. Ian’s corn starch has been cut in half to allow an improvement in lower GI functioning and minimize loose bowel movements. As a result, the longer chain lipids (fats) needed increasing to keep preventing the dumping.

Ian’s Gabapentin (Neurontin) was ceased for the time being. The diagnosis of Visceral Hyperalgesia is one that responds to treat rapidly and extremely well. Since Ian has not seen an improvement within a week of use, this condition is most likely non-existent for him. Another “medication” they removed was the Florastor prebiotic. A prebiotic helps healthy bacteria grow and flourish in the gut, while probiotics are beneficial bacteria that aid the gut in doing what it needs. Ian’s prebiotic Florastor, contains fructose. As a simple sugar, fructose does not help Ian’s blood glucose levels. By removing this, we are hoping to keep his system moving correctly, preventing loose bowels and nausea-retching.

With significant seasonal allergies, we will be using a HEPA filter in his bedroom. Since Ian already struggles with respiratory issues, as well and GI issues when lying flat, we hope to improve air quality by adding the HEPA.Washing his bedding in hot water will help us keep allergens to a minimum.
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On a much more light and jovial note, Ian’s picture is going to be featured in the clinics media. When we were admitted at CHOP for the repair, Ian really enjoyed playing with the room telephone. He had fun with the cord..... I know, a CORD right? The clinic really liked the photo and ask us if we would be allow them to use it, as well as tell a brief summary of his experiences for their website. Ian is such a cutie, so graciously I obliged. 

"Hey girl.  Can I hit you back?"


As things continue to change and hopefully improve, I will continue to follow-up.