This has been an interesting weekend to say the least. After getting some disappointing news at work about midday on Thursday, I was pleasantly surprised at the end of the day, by winning a pair of tickets to the first game of the ALDS at Kauffman Stadium. Sarah and I were lucky to find a sitter on such short notice (thanks grandma Helen) so we were able to go. The weather was great - a little brisk at 47 degrees when we left the K, but no rain. The seats turned out to be awesome, 6 rows back behind the 3rd base dugout. Even better was the fact that the Royals dominated the game, posting a 5-0 shutout, then followed it up today by having an unbelievable 5-run 7th inning to beat the Blue Jays this afternoon, taking a 2-0 lead in the series. This team, just like last year's lineup, continues to amaze me.
After spending a lot of nights either reading or trying to meet work deadlines, the Royals game was a welcome break. I know I have mentioned this in the past, but many of the best ideas and research I tend to follow up on, come from other parents, and sometimes, from people very close to me. Sarah, my wonderful wife, mentioned a few months ago, after an appointment she had with a new chiropractor, mentioned Celiac Disease (CD) for something to consider for Mira's seizures. The conversation with this new chiropractor took a detour at some point and ended up being a discussion more about Mira than Sarah, ironically. Sarah has mentioned CD in the past before and being my stubborn self, had dismissed the notion at the time, that there was any connection between Mira's seizures and CD, based on what I had read in the past.
Needless to say, after Mira's continual woes with seizures over the past month, I went down the CD rabbit hole a few weeks ago. It is actually pretty simple in terms of CD - just avoid gluten. With a wide range of symptoms and degrees of gluten sensitivity, one can manage the symptoms by going on a strict gluten-free diet. One of the issues we consistently deal with is Mira's diet. It has always been a delicate balance of weight gain, constipation, and nutrition, usually with the first two items being of greatest concern.
Years ago, we started supplementing Mira's diet with Pediasure. For any of you out there who have looked at the price of a can of Pediasure, you would be shocked. It is outrageously expensive, considering the primary ingredient is sugar. Even supplementing with a single can a day, becomes very expensive. The main issue we had with it was that it caused significant constipation. We probably spent 6 months or so supplementing Mira's diet with it, back when she was around 2 or 3 years old, then used it periodically for the next few years. The cost and the intestinal issues it caused forced us to look at other options.
What we found to work better for getting calories in her, was protein powder. There are literally hundreds of different formulas for protein powders, for which I have always had a love-hate relationship with all of them, knowing what ingredients they contain. Some are better nutritionally than others, but overall, the ingredients are constant - whey protein isolate, soy isolate, or some combination thereof. mixed with varying levels of other amino acids and vitamins. Over the years, we tried striking a balance with Mira's weight by adding small amounts of powder to her bottles, which we have realized, after years of doing this, adds to her constipation woes. I love the fact that they provide her with calories to keep her weight on, but hate the questionable ingredients and additives. Many of these powders contain massive amounts of sugar, fructose, sweeteners, and often a host of other ingredients I can barely pronounce.
A couple of years ago, we stopped giving Mira these powders and over a period of 6-9 months and she lost a considerable amount of weight, so much so, that her neurologist and pediatrician raised some concerns, and suggested we see a dietitian, which we did. The recommendation was to put her back on some sort of calorie booster, which happened to be protein powder. We put her back on it, her weight came back up to a normal range, and here we are, another year or so later, still having tons of seizures. Again, I have always had my concerns about these powders, so I went back to Sarah's original idea of Celiac Disease and started reading all about gluten, glutamine, and glutamate. I have always questioned what these essential and non-essential amino acids do to the nervous system in particular - a few weeks ago, I started really diving into what each amino acids in a typical protein powder profile actually does.
It didn't take long to see what glutamine and glutamic acid (GA) do to the nervous system and what rolse they play in epilepsy. One of the most frightening articles I read however, was how glutamine is processed within the body and how it transports ammonia through the central nervous system (CNS). Basically, glutamine enters the mitochondria, wreaking havoc on the mitochondria functions within it - basically, it's toxic and based on this article, is proposed to ultimately cause hepatic encephalopathy. Since glutamine can be produced from glutamate by the body, it is considered nonessential. Introducing additional (or excessive) amounts of GA into the body can cause neurological flux, especially if there is a problem within the cycle. Glutamate cannot cross the blood brain barrier, so it processed in the CNS to create glutamine. Disruptions or defects in this cycle of processing within the CNS can be a cause of epilepsy, Alzheimer's, and other neurological issues/diseases.
Protein powders are loaded with GA, to the tune of 3-5 grams per serving, which is an astounding amount for the body to handle and again, if there is a defect in this cycle, it can have terrible effects on the CNS. Reading all of these articles and trying to understand the connection between glutamine, glutamate, and gluten has been eye-opening. If Mira does has an issue with getting additional amounts of glutamine and her body cannot properly process it or is processing it in the CNS and there is an issue, it could be causing significant neurological issues.
I'm trying to decipher how all of this may or may not affect Mira and her diet, but the bottom line is we should try avoiding glutamine and gluten as much as possible, to see if it might help her. There isn't any harm in trying Mira on a gluten-free diet. She is basically on it already, minus the protein powder. It has to go. The second issue to be concerned with is to get calories in her, without resorting to gluten. A gluten-free diet isn't all that restrictive in terms of food choices - we could increase calories through everything from coconut oil to sweet potatoes, or any other fruits and vegetables that might be heavier in calories. As a trial, I avoided the powder all day today and Mira did not have any tonic-clonics. She had a few myoclonics this morning and this afternoon, but nothing major. She was very vocal before bed, doing her ba-ba-ba song for about 10 or 15 minutes as we raced around the house in her chair. I haven't heard her vocalize that much in awhile.
We are still doing the B6, but I would love to hear from parents out there that have tried a gluten-free diet and if it had any effect on seizure control. If anyone has any additional information on Celiac Disease and epilepsy, I would also like to read more. Thank you Laura, for all of the information and of course, thank you to my amazing wife, who always has rational, positive ideas, while I am off deep in the weeds.
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