Sunday, December 29, 2013

Benefits of Hot Baths and Epsom Salt for Autism


As I mentioned in last week’s blog entry, Alex was eagerly anticipating getting an iPad Mini electronic tablet for Christmas. Knowing that once he opened that desired gift, he would likely ignore any other gifts, I decided to hide the gift-wrapped iPad so that it would be the last present he would open. After he had opened all of his other gifts on Christmas morning, I asked him if he had gotten everything he had wanted for Christmas, thinking that he would comment that he was hoping for an iPad. When he told us no, we asked him what else he was hoping to get, and he told us, much to our surprise, “A hot tub.” Before he could feel cheated out of a hot tub, which he was definitely not getting this year, we quickly gave him his iPad to unwrap, and he was delighted that he had received the gift he’d been requesting for several weeks.

While the request for a hot tub seemingly came out of nowhere, we really shouldn’t have been surprised that Alex would ask for one. The past several weeks, his current obsession has been soaking in a bathtub filled with hot water and Epsom salt (as I also mentioned in last week’s blog entry). While Alex has always liked taking baths, recently he has wanted to take a bath two, three, or even four times a day, and he wants Epsom salt in the bath water. When he was younger, I put Epsom salt in his bath water after reading about the benefits of this inexpensive compound found in the first aid section of most stores. Epsom salt, or magnesium sulfate, helps children with autism in two primary ways. First, the magnesium soothes and relaxes, while the sulfate rids the body of toxins. In fact, some doctors recommend that children with autism take nightly baths with Epsom salt to help calm and detoxify before bedtime. [To read more about the benefits of Epsom salt baths for children with autism, please click here.] Over time, we didn’t see any particular need to continue using Epsom salt until Alex started requesting them specifically a few months ago.

Recently, when Alex asked for Epsom salt in his baths, I thought he was just being nostalgic about when he was little, as he likes to do. However, in doing some recent research while trying to find something to eradicate the stubborn yeast that has inhabited his digestive tract for many months, I ran across an interesting comment from an autism mom who is also a medical doctor. In Healing Our Autistic Children, Julie A. Buckley, M.D. describes the battle she fought to help her daughter, who has autism and chronic yeast infections. In a chapter entitled, “Mommy, I Have Fleas,” she explains her daughter’s itching and agitation when she has yeast flares, which she describes as “fleas.”  Along with yeast-fighting antifungals, Dr. Buckley also recommends that parents help ease the symptoms of yeast overgrowth with water by encouraging their children to drink filtered water and bathe often. As she suggests on p. 92 of her book, “Draw him lots of baths and pour a cup of Epsom salts in the water, sometimes several times daily.” Once again, Alex’s amazing intuition about what he needs to improve his health has medical validity. After consulting with his doctor, who concurred with this recommendation, we have been allowing Alex to take baths whenever he asks, and we have been buying Epsom salts in the giant economy-sized package.

To reinforce the value of Alex’s tub time, new research that appeared in the news two weeks ago highlights the benefits of hot baths for children with autism. At the annual meeting of the American College of Neuropsychopharmacology, research was presented to support the theory that autism is caused by an overly active immune system, causing inflammation that affects behavior. Specifically, the report states, “This theory is supported by the fact that about a third of autistic individuals show clinical improvement when they have a fever. In response to high body temperature, the immune system may release protective anti-inflammatory signals in the body, which may explain the effect on autism symptoms.” To test this theory, Dr. Eric Hollander and his colleagues placed children with autism in hot baths, trying to recreate the effect of fever on the body. When the children were placed in baths of 102 degrees Fahrenheit for a half hour, parents reported improvement in autism symptoms, namely repetitive behaviors and social communication. [To read this article, click here.] Since Alex has always shown improvement the few times in his life when he has run a fever, this research intrigued me. Moreover, we have noted that we have seen improvements in his behavior after he takes hot baths. Not only is he calmer and more relaxed after baths, but his conversational skills also seem to improve after he soaks in the tub. Consequently, we have supported Alex’s requests for long, hot baths in Epsom salt because we think they are truly helping him. However, we won’t be buying him a hot tub anytime soon.

Even though Alex didn’t get his hot tub, he seemed to thoroughly enjoy this Christmas season, from listening to Amy Grant’s Christmas CD repeatedly to shuddering with delight as he sang his favorite carol, “Joy to the World,” at the Christmas Eve church service. At one point, he showed a little confusion about the holiday when he asked us, “Who is God’s baby?” Nonetheless, he reminded us that we celebrate Christmas “because it’s Jesus’ birthday.” After the various struggles autism has presented our family through the years, Ed and I were very thankful to enjoy probably our best Christmas ever with Alex, filled with peace, joy, and love—gifts we truly treasure.

“For the Lamb on the throne will be their Shepherd. He will lead them to springs of life-giving water. And God will wipe every tear from their eyes.” Revelation 7:17

Sunday, December 22, 2013

Twelve Days of Christmas


When I was a kid growing up in the 1960’s and ‘70’s, long before online shopping was a common convenience, my parents had us look through Christmas catalogs from J. C. Penney and Sears to make our wish lists for Santa. My brother and sister and I would look over the catalogs in wonderment, and at some point, my mom would secretly phone in our family order, which my dad would secretly pick up at the stores downtown, allowing our belief in Santa to continue until we were a little older. While I’m sure that keeping all those items on the wish lists straight for three kids wasn’t always easy, at least we gave them ideas about what we would like to have.

In contrast, up until last year, Alex rarely gave us any suggestions about what he would like for Christmas, often answering our request for ideas by saying, “What would be good?” He gets that gift indecision honestly, as I suspect most males are terrible about providing ideas for gifts. In the twenty-five years I’ve been married to Ed, he has never offered any ideas about what he would like for a gift, leaving me to puzzle over what to get him. Nonetheless, I spend the month of December brainstorming potential gifts for both Alex and Ed and hope that I might come up with some presents they will like. Instead of viewing this process as an exercise in frustration, I see it as a challenge.

Since Alex has given me several good specific suggestions, he has made Christmas shopping for him pretty easy this year. As I was sorting through shopping bags this morning, getting ready to wrap gifts, I was reminded of a blog entry I wrote three years ago as an imitation of the Christmas carol “The Twelve Days of Christmas,” in which I substituted the things Alex would like to have at that time. [To read this blog entry, please click here.] Because his interests have changed a bit, I decided to update the list this year, a revised version of Alex’s Twelve Days of Christmas.

On the twelfth day of Christmas, my Alex asked of me:

An iPad Mini

To see the stars

A Rudolph ornament

A world records book

Listen to Amy Grant

A light-up toothbrush

A nutrition book

A Target gift card

A calendar

Three almanacs

Two board games
And a hot bath full of Epsom salt.

Although I appreciate that Alex can now express what he wants, I’m even more pleased that he understands the real reason for Christmas, explaining that it’s “Jesus’ birthday.” This year he has enjoyed looking through Christmas cards sent by family and friends, and his favorite seems to be the one from my sister (whose college degree in math and melodic voice make her “special” to him) and her family, who each signed the card individually. In fact, he carried off their card that proclaims, “Joy to the World” to his bedroom. Yesterday, I heard him humming loudly that old carol, “Joy to the World,” which brought tears of joy to my eyes. This Christmas, we are thankful for the joy Alex has found again, which brings us joy, as well. Indeed, “Repeat the sounding joy, repeat the sounding joy, repeat, repeat the sounding joy!” Merry Christmas and in the words of Charles Dickens’ beloved character from A Christmas Carol, Tiny Tim, “God bless us, every one!”

“…I bring you good news that will bring great joy to all people. The Savior—yes, the Messiah, the Lord—has been born today in Bethlehem, the city of David!” Luke 2:10


Sunday, December 15, 2013

Twenty-two

 
“I don’t know about you, but I’m feeling twenty-two. Everything will be all right if you keep me next to you.” from “Twenty-two” by Taylor Swift

Dear Alex,
Tomorrow is your twenty-second birthday, but it doesn’t seem that long ago that you arrived in this world on a bitterly cold day. To be honest, I wasn’t quite ready for you, thinking that I had nearly a month left to prepare for your birth.  Through the years we have teased you that you didn’t want to wait to be born in January because you didn’t want to miss Christmas, your favorite holiday. Of course, you showed me from the beginning that life with you was going to be an adventure, and my plans were going to need revision.

When you were born, my cousin gave me a book called Love You Forever about the love between a mother and her son over the years. In the book, every night, even when her son is a grown man, the mother sings to him, “As long as I’m living, you’ll my baby be.” This book always makes me cry because it’s so sweet, but I didn’t know how true those words from her song would be. When we found out you have autism, we realized that you were going to be a little boy longer than we anticipated, a Peter Pan who may never grow up.

Even now, as you tower over me in your six-foot tall lanky body, you still rely on your dad and me to help you with seemingly simple tasks. However, we know that we are more fortunate than many parents whose children have autism because you eat and sleep well, know your limitations and never wander from us, and can use the toilet on your own. Most of all, we are blessed that you can speak and tell us what you’re thinking, unlike many children with autism. While we had to wait for you to master many skills, that made those accomplishments even more reason for celebration.

In many ways, you are an interesting mix of your dad and me. Your build is his; your coloring is mine. Your mostly easygoing personality comes from your dad, and your need to make lists and do research comes from me. You have an eclectic taste in music: you enjoy listening to jazz and Bob Dylan with your dad, and you appreciate the Bee Gees and Amy Grant, thanks to me. Of course, you have found your own tastes, as well, choosing Alan Jackson and Kenny Chesney as your favorite singers. Whenever you listen to music you love, we watch you smile and sway, and that makes us smile, too.

Two of the qualities that I’d like to think you inherited from me are your tenacity and your abiding faith. To overcome the obstacles autism has put in your way, we’ve had to keep working and working, never giving up. At times when I felt like quitting, I’d watch you try one more time, and I knew that I could keep going, too. What makes me proudest of you is that your faith in God never wavers, and I love that we end our day praying together. You have a lot of questions for God, and while I hope you find the answers in your lifetime, I’m looking forward to the day in heaven when we can ask Him face-to-face all the things that have puzzled us both. I’m grateful that you have no fear of death because you know that you’re going to heaven someday, and as you tell me, you’re looking forward to seeing your beloved Dr. Trowbridge and Jesus. I’m sure that they will be delighted to see you, too. While I still have hope that you will be healed of autism here on earth, I know that you will be healed in heaven, and I look forward to celebrating that day.

Although most children are afraid of imaginary monsters under their beds, you don’t fear things like that. You worry about gas prices, but you seem to trust that God and your dad and I will always take care of you. Maybe because we’ve faced our monster—autism—head on, we don’t worry about the imaginary ones. Sometimes I think that we are like knights trying to slay the dragon as we keep fighting the battle of autism. The words of Lewis Carroll’s poem “Jabberwocky” go through my head as we try to defeat autism, our Jabberwock: “Beware the Jabberwock, my son! The jaws that bite, the claws that catch!” As we keep praying for your healing, I hope for the victorious ending of autism in your life: “And hast thou slain the Jabberwock? Come to my arms, my beamish boy!”

As your mom, like all parents, I’ve made my share of mistakes in raising you. I know that I’ve been overly protective with you, and I’ve overindulged you at times, mainly because of the limitations autism has placed on you. I never wanted you to be hurt by anyone or anything, and I didn’t want you to miss out on the joys in life. Frankly, at times, it was just easier to do things for you than to have to watch you struggle to do it yourself. As your Nanny, my mom, always says, “Any mistakes I’ve made, I’ve made out of love.” Because of that love that surpasses else anything in my life, I’ve wanted you to be the best you can be. Somehow you seem to know that already.

In your twenty-two years, I’ve tried to teach you all the things you’ll need to know in life, and I hope you’ve learned them well. What has surprised me, though, is that you have been one of the best teachers I’ve ever had in my life. Before you came into my life, I saw myself as impatient and not very strong. However, you’ve taught me the value of patience and the lessons we learn while we are waiting. More importantly, you’ve made me realize that I’m a lot stronger than I ever thought I was mainly because I get my strength from God. Through all the trials we’ve lived in these twenty-two years, we’ve gotten better and stronger. 

What more can I say? Your dad and I love you so much and are so proud of the young man you’ve become, and we’re thankful for God’s blessings upon our lives. Whatever the future holds, know that I will be there to cheer you onto victory and to catch you when you fall. Happy Birthday, my precious son!

“Every time I think of you, I give thanks to my God.” Philippians 1:3

 

 


Sunday, December 8, 2013

Christmas Newsletter


Recently a friend shared a Christmas newsletter another friend had sent enthusiastically detailing the events of the past year. While this annual tradition can simply be a way to summarize the family highlights, some use this opportunity to boast about their accomplishments. Of course, their children are the smartest, best-looking, amazingly athletic, most popular, and highly talented young people to ever walk the face of the earth. Certainly, parents should be proud of their children and their achievements, but I wonder if they ever stop to think how their gloating makes others feel whose children do not possess all the gifts theirs do. As an autism mom, I must fight feelings of jealousy toward parents who have typical children, let alone those who are extraordinary. Let’s just say that these bragfests do little to inspire the Christmas spirit in me.

One evening last week, after Alex had an especially good day, Ed commented that we appreciate little things that few others would really understand. For example, we have taken Alex shopping in crowded stores this past week, and he has shown great improvement with his impulse control, never reaching to touch anything, only looking at things he wanted to see, even keeping his hands behind his back to make sure he wasn’t tempted to reach for them. This is not a big deal for most people his age, but we know what an accomplishment this is for him. We simply measure success differently than most parents do. With that in mind, here is the newsletter I might write to review our year with a little tongue in cheek added because we try to find the humor in our situation.

This year, Alex made very good progress as he continued behavioral therapy. Despite having three different therapist changes in a matter of a few months (One moved out of state, the second one was promoted to a supervisory position, and now he’s working with the third one, who truly IS a charm.), Alex adapted nicely each time he found himself working with someone new. He has learned calming techniques to address his anxiety, and his therapists have been amazed that when he’s upset, he can count to ten not only in English, but also in Spanish, French, German, and (thanks to his second therapist) Turkish. By the time he finishes counting in all these different languages, he forgets why he was upset in the first place.

Despite all the various medications Alex takes, he is a trouper about swallowing all those pills four times a day. Moreover, he’s become somewhat of celebrity at the pharmacy, where the friendly pharmacists know us on a first-name basis. He’s like Norm on the television show Cheers, as they yell, “Alex” when they see him. I suppose they are pleased to see a frequent customer under the age of sixty-five for a change. Besides taking his medications nicely, he is also wonderful about cooperating for the regular blood tests needed to check the effects the medications have upon his system. When we tell him we are taking him to the lab, he eagerly hops in the car as though we were taking him to a sporting event because he thinks it’s fun to have blood draws. The kindness of the lab technicians where we take him regularly only adds to his enthusiasm for this activity most people dread.

After twenty-one and one-half years of being cavity-free, Alex finally had two small cavities that needed to be filled this summer. Because of Alex’s anxiety and sensory issues, his dentist opted to schedule this procedure under general anesthesia. Even though we had to get Alex up in the middle of the night so that we could report to the hospital, which is a hour away, at the scheduled check-in time of 5 A.M., he thought this was a great adventure because we were going to a city where he’d never been before. Thankfully, he came through the procedure nicely, and his favorite memory of the experience was watching stock market news on the television in his hospital room.

Aside from his renewed interest in the stock market this year, Alex has also enjoyed following gas prices, which have been at times a source of frustration for him (as they have been for most people). When he was younger, high gas prices would agitate him so much that we had to determine routes free of gas stations to avoid meltdowns in the car. This year, Alex finds following gas prices a pleasant pastime, especially when they are on a downward trend. He happily exclaims from the back seat, “Gas prices are lower!” In addition, he enjoys driving past a local gas station that has gone out of business, leaving an abandoned sign that advertises gas for nine-tenths of a cent, which he finds terribly amusing.

Although gas prices are cheaper this year, we did not go on vacation, as most families do. Because of Alex’s potentially unpredictable behavior, we once again opted for our typical summer of staycation, planning outings within a few minutes of home. Between visits to the Indiana Dunes, local parks, a nearby miniature golf course/arcade, grocery stores, the library, and other stores, we kept Alex busy and encouraged him to develop his social skills. He has become an expert at pushing shopping carts, to the point I’m thinking of having a bumper sticker printed that reads, “MY AUTISTIC KID CAN PUSH A SHOPPING CART BETTER THAN YOU CAN.” Unlike most of the customers at Walmart, Alex knows better than to leave his cart parked in the middle of the aisle, which is a social skill in itself.

Even though Alex didn’t make the honor roll, earn the team MVP, become Prom King, or perform a concert to a standing ovation, we are proud of him and all he has accomplished this year. Moreover, we are thankful for the many blessings we have enjoyed this year and the prayers God has answered. Every day, Alex continues to teach us the value of patience, reminding us to “wait and see,” and we have learned the importance of faith, hope, and love on this journey with him. My favorite part of the day, especially on the hectic days when patience is running low, is the quiet and peaceful moments saying bedtime prayers with Alex, who talks to God as his friend, believing and trusting that He will answer those prayers. May we all have Alex’s steadfast faith as we celebrate the birth of our Lord and Savior!

“May the Lord show you His favor and give you peace.” Numbers 6:26

Sunday, December 1, 2013

Organic Acids Test Results


In a previous blog post entitled “Lab Tests” [October 13, 2013], I explained that we were having The Great Plains Laboratory’s organic acids test with yeast culture and sensitivity run to check Alex’s metabolism as well as to determine the presence of yeast in his system. After collecting his urine and stool samples, we sent the test kit off to be analyzed and waited for results. A couple of weeks ago, Alex’s doctor sent us a copy of the results from the organic acids test, a ten page document that carefully detailed and explained what the test revealed along with recommendations for treatment. Since Alex has had this test run in the past, I was familiar with the information given in the results; however, I still needed to review the potential causes for the various results that were out of the normal range. Out of the seventy-six metabolic markers tested, Alex had seventeen that were abnormal.

The good news was that after comparing the most recent test results with those from the last time the test was run in August 2004, his metabolism shows improvement over time. Essentially, even though he has some metabolic issues, his body does seem to be healing. However, the tests indicate that he still has some vitamin deficiencies, excessive inflammation, and mitochondrial dysfunction—all of which are common in autism. Since Alex has been dealing with a chronic yeast infection of his mouth for many months despite antifungal medication, we were not surprised the test indicated that he does, indeed, have yeast overgrowth in his system.

After studying the test results carefully, highlighting key passages, taking notes, and writing questions, I was prepared to discuss the results with Alex’s doctor last Monday. Once again, I was reminded how blessed we are to have found him. Not only does he possess knowledge about nutritional medicine, but he also enthusiastically pursues ways to make Alex better. As he laid the test results across the examining table and made notes on the paper liner on top of the table, he clearly explained his interpretation of the results, which confirmed my suspicions. I especially appreciated that he treated me as an equal as we discussed possible approaches to treatment, and his warm, reassuring manner made me comfortable about asking questions.

In addition to the organic acid test results, he also discussed the results of the yeast cultures and sensitivity, which detected the presence of the fungus Candida albicans in Alex’s stool, which came as no surprise, since he has had bouts of candidiasis throughout his life. What was surprising was the indication of another fungus, Rhodotorula mucilaginosa, present in his system. While I wasn’t pleased to discover that Alex has not just one but two strains of fungus in his digestive tract, I was relieved to discover that the sensitivity tests showed several antifungals to be effective on these fungi. In fact, the same antifungals that were beneficial to treating one strain were also useful to treating the other, which was good news. The natural antifungals caprylic acid and grapefruit seed extract were shown to be effective, as was Nystatin, an antifungal commonly used in children with autism who have yeast issues. In addition, all three of the prescription azole medications, fluconazole (Diflucan), itraconazole (Sporanox), and ketoconazole (Nizoral), were shown to treat the fungal infections effectively. Fortunately, Alex has taken all of these medications and caprylic acid at one time or another without any negative side effects. In the past, his yeast cultures have shown resistance to Nystatin, so I was pleased to see that we can now add that antifungal to our arsenal along with grapefruit seed extract.

After carefully considering all the test data, Alex’s doctor and I discussed the plans for his treatment. He recommended finishing this month’s dose of itraconazole and then switching to grapefruit seed extract for a month, followed by a month of Nystatin. This rotation of antifungals is a common method of treatment to prevent resistance to any antifungals. He suggested that repeating this three-month cycle would be likely, as he foresees that getting the yeast under control will likely take at least six months. In addition, we prioritized the treatment with supplements recommended by the organic acids test. Because we always do a control method whenever we do something new with Alex, starting only one new supplement at a time, I asked him which supplement we should try first. He suggested a good vitamin B complex to strengthen his immune system and to address nutritional deficiencies indicated by the test results. After that, he recommended adding the supplement CoQ10, followed by the amino acid taurine. Although Alex has taken all of these supplements in the past, we still need to monitor the effects they may have upon him, especially until we get the yeast overgrowth under control.

Along with a copy of Alex’s test results, his doctor gave me a copy of an article about amino acids he had read recently that made him think of Alex. We discussed some of the amino acids Alex has taken in the past, including GABA, taurine, glycine, and thianine, and he explained the benefits of some of these amino acids upon the nervous system, which he felt would help keep Alex calm. Our hope is that once we get the yeast under control, we can reduce the number and/or dosages of psychiatric medications Alex is currently taking and replace them with more natural substitutes to address his anxiety. I also shared some research I had found written by a doctor who has a child with autism and who treats many children with autism. She mentions that whenever her daughter has yeast overgrowth, she complains that she has “fleas” and begs her mother to call the doctor for antifungals. In addition to medication, the doctor recommends frequent Epsom salt baths to help detoxify and calm the itching, the sense of having fleas. Interestingly, Alex has been asking to take two or three baths a day and specifically requests Epsom salts in the tub. As I have mentioned previously, Alex is very in tune with his body, and I was amazed that he knew what he needed to feel better. His doctor agreed, and he recommended that we continue the Epsom salts baths when Alex requests them.

While we wish Alex could be spared of the annoyance of yeast overgrowth, and we continue to pray for his healing, we are thankful that a variety of ways exists to treat the problem so that we don’t need to worry that he is running out of options. Moreover, we’re especially grateful to have a doctor who is in this battle with us for the long haul and who understands the importance of addressing a physical issue that significantly affects Alex’s behavior adversely. Most of all, we are thankful for the healing power of God and for His guidance through medical professionals and tests so that we can help Alex be healthy and happy.

“Lord, your discipline is good, for it leads to life and health. You restore my health
and allow me to live!” Isaiah 38:16