Marlon
Falconer wearing a traditional outfit of the Asturians (northern Spain).
Section 1 | Section 2 | Section 3 | Section 4
S H A R I N G
Monica Falconer
Marlon
Falconer wearing a traditional outfit Hi everyone! We are the Falconers. Many of you met us at the MSUD Symposium 2002 in Ann Arbor, Michigan. We live in Anchorage, Alaska. My husband, Navid, was born and raised here, and I am from Asturias, Spain. Our son, Marlon, who has classic MSUD, was born on Sept. 25, 2001. He was diagnosed at three days of age through the state of Alaska’s newborn screening program.
At 6 months of age, Marlon had an intestinal virus and lost his appetite completely. This was the only time he needed to be hospitalized. While in the hospital Marlon picked up RSV [a virus that is a major cause of acute respiratory disease in children]. He has also had several ear infections. Throughout these illnesses his branched-chain amino acid levels remained stable, and he recovered quickly. Otherwise he is very healthy. He loves to eat fruit and his low protein foods and enjoys taking his bottles of MSUD formula with Isomil added as a source of natural protein.
We recently visited my family in Spain and spent one month there. I was a little nervous about going to a place where I had no experience with the MSUD treatment. Several months before buying plane tickets, I decided to do some research on MSUD treatment in that country. I wanted to know where to find specialists on metabolic disorders, what treatment they use when leucine levels are elevated, and where to get Marlon’s branched-chain amino acid levels analyzed. My family and friends in Spain helped me to gather this information.
To my surprise, I learned there is a big department of metabolic disorders in the Hospital General de Oviedo, Asturias, near my parents with whom we were going to stay. They have a big PKU clinic and currently have patients with MSUD. I had a family member call one of the doctors listed with the metabolic department. He was very kind and willing to explain the procedures used in an emergency so we would feel comfortable during our stay in the area.
I wanted to plan ahead for the large amount of MSUD formula Marlon would be consuming during the month we planned to be gone. I thought if I sent it by mail ahead of time we would only need to carry a few cans with us when traveling, and we would not raise any suspicion at customs. Three months before we left, I sent formula, carnitine, Wel-plan baking mix and other low protein products to Spain by mail. The day before our departure the package had not yet arrived at its destination. I had to pack all the cans and products in our carry-on bags.
Twenty days after our arrival in Spain customs sent us a notice telling us the package had finally arrived. However, the Department of Health had to inspect it, and we were charged an additional $70 to cover the inspection and the custom taxes. We learned from this experience. Carrying the cans of formula, however, caused no problems at customs or airports. On one occasion they did ask what the cans contained, but were satisfied with our answer. We did not even have to show them the “traveling letter” we had with us explaining the cans.
Our month in Spain went great. Marlon was in good health throughout our time there except that he had a reaction to a chickenpox vacination given to him prior to our departure from the U.S. He ran a low grade fever for two days, but we were able to control it by managing his protein intake. He was soon crawling around, going up and down stairs, strolling down the streets and calling “bau baus.” (This is the Spanish name for dogs, but Marlon uses it for cats, horses, birds, cows and all living and moving beings in sight.)
Marlon met all my family, as well as many of our friends. He particularly enjoyed going outdoors. Our weather in Anchorage doesn’t allow us to go out much during the winter season. Marlon was happy that “El Niño” was influencing the weather in Spain. It was unusually warm for this time of the year, in the 60’s or 70’s, with warm winds from the Sahara blowing constantly.
After breakfast, Marlon loved to go out in the streets, shopping, visiting with farm animals, and meeting lots of people. He was so busy all month, he even complained when it was bath time, ordinarily a favorite time for him. At home Marlon leaves everything to go have a bath, but there, he was just too busy socializing and taking care of other business.
While we were in Spain, Marlon started saying a few words in Spanish. He learned how to walk, and now gestures with his hands like a Spaniard, moving his hands up and down along his sides, when he “talks” or tries to communicate. He laughs like the retired men that he often saw on the main square in town. He throws his head back, opens his mouth wide, and then slaps his thighs with his hands as he laughs out loud. Quite a posture for such a little boy!! He hardly has enough thigh for such an action!
We all had a great time during this trip. I am very thankful that Marlon was healthy and that all our preparation helped to make everything go smoothly. Following are tips that I gathered with the help of many MSUD eGroup members who sent me suggestions before our departure. Keeping those tips in mind and using a few of my own, we did not miss a thing or forget a single detail. I think we were very successful. Thanks again to all the members that helped us prepare for the trip.
Traveling in a Foreign Country
1. Find a hospital treating metabolic disorders close to where you will be staying in case of an emergency. If your child is an infant, look for a pediatrics department.
2. Call the hospital ahead of time to introduce yourselves and the patient (doctors appreciate this gesture). Keep the names and phone numbers of doctors handy during the trip
3. Carry a detailed “emergency letter” from your own Metabolic Clinic and a copy of the letter translated into the language spoken in the country of your destination.
4. Do not send MSUD formula by mail to your destination without first checking on mailing fees, the length of time it takes to get there, and the cost of custom taxes and inspections This can be very expensive.
5. Carry with you enough formula, mixed and ready to use, for the days you will be traveling. The formula and the supplements should be in a cooler with ice packs, and your name and address must be on the cooler. The cooler should be no bigger than the size allowed for a carry-on, otherwise it may be put in a difficult place to reach in the cabin of the plane.
6. Be prepared in case of delays at airports. Carry with you at least a few cans of formula and enough of everything needed to make additional formula. Include some low protein snack foods.
7. Ask your doctor to write a prescription for the MSUD formula and tape it on top of the cans in your carry-on bags.
8. Have your metabolic clinic write a “traveling letter.” It should explain your child’s MSUD condition and emphasize the importance of the formula for your child’s diet. It should include a list of the supplements and other items needed for the care of your child, such as, blender, scales, DNPH, etc. Keep this letter with you during the trip.
9. Take some low protein products with you. This will depend on how much solid food your child eats, the length of your trip, duration of your trip, etc.
10.For a long stay, you might want to do some research on companies from which you can buy low protein products while there. Many of these companies have web sites you can check out before departing. You can keep these addresses, phone numbers or fax numbers with you. Loprofin products can be ordered in numerous European countries.
11.Find a list of leucine values for the foods eaten in the country you are traveling to, or make your own list. Adapt some of the countries recipes for the MSUD diet.
Enjoy your trip!
Bernie and Gabriele Patterson from Alberta, Canada, are the parents of twin boys, Eric and Oliver. Oliver, 9, has a variant form of MSUD. Gabriele, a high school biology teacher, writes about their traveling experiences and gives some tips for comfortable traveling with MSUD . Oliver receives his formula through a G-tube. Read more about Oliver in the article “To G or Not to G, That is the Question” on the back page.
Oliver on the left withMy worry-free travel days were over when Oliver was diagnosed with MSUD. However, while MSUD has changed my life in many undesirable ways, travel was one area I was not willing to give up easily. We take Oliver regularly on 3 to 4 week camping trips—if you can call living in a motor home “camping”—and we have traveled to Cuba, Mexico and Disneyland with Oliver.
Traveling with Oliver is not that difficult, but it is necessary to plan ahead. For long camping vacations, careful planning is essential. I always take more formula than I need and make sure that I have contact names for the major hospitals.
Taking food along for a lenghty trip is a challenge. We bought a portable two-way freezer. It is not big, but, with creative packing, I can get a lot of pancakes, buns and brownies in it. In order to save space, I have tried to take buns as dough and bake them on the road. It has not been very successful, however, it would get me out of a bind. (I don’t think my oven has a good temperature control; I have an older RV.) On the way back from the coast, this freezer is always packed full of fish.
My husband installed solar panels on the roof of the motor home so that we can stay several days in provincial campgrounds, which do not have electricity. They provide power for the microwave and Oliver’s pump. The little microwave is handy to warm up the formula and his frozen foods.
Tent camping is a different story. My ultimate goal is to go on a canoe trip again in the Yukon and Alaska. It will be a while before that can happen since Oliver will have to learn to accept his formula without a pump first, and I will have a fun time trying to bake low protein bread daily on a camp stove. Since Oliver’s twin is deathly afraid of any aquatic means of transportation, I will have a few year’s time to figure this one out.
When traveling out of country, my biggest concern is the quality of water and possible loss of equipment. In Mexico I did not trust the water out of the faucet. I needed plenty of water to clean out the hoses for the pump. The hotel bars were very obliging to supply pitchers and any amount of water needed. I had also taken along an excellent water purifier, and I am thinking of buying one of those filters with microtubules that take out every microbe. When we leave the safety of the resort, we simply do not consume anything dubious—no ice cream, fruit that cannot be peeled, etc. We take the regular precautions everybody should take. Bottled water all the way!
Oliver
swimming with dolphins in Cuba Our carry-on luggage is always heavier than allowed, because I will not put the formula and pump into a suitcase. When traveling to Cuba and Mexico, I carry a treatment protocol for MSUD, translated into Spanish.
In Mexico, we lucked out and had an all-inclusive hotel with a kitchenette (a time-share unit). We had e-mailed the hotels before making a reservation to see if we could get this arrangement (at no extra cost). We had a fridge/freezer and a microwave available. The drawback was the lack of children’s beds when we arrived in the room at 1 a.m. When I complained, they said, “but you have a fridge!” “I cannot put two children to sleep in one fridge, Senior! I need at least one bed! One child can sleep in the fridge because it is broken anyway Senior!” In retrospect, it was quite comical, but at 1 a.m. upon arrival, it was not.
Most resort hotels offer french fries (Oliver thought he had gone to heaven!). We also had very good rice, pastas and buns as well as some suitable cereals. I had Fruit Loops and Coffee Rich with me.
The hotel in Cuba had a little fridge, sufficient for the food I had taken with me. I also carried a letter in Spanish asking to be allowed to store some food in a freezer somewhere. I doubt it would have been a problem. Cuba is a wonderful country to travel in. They adore children and will do absolutely anything to help you. The hotel had its own water purification system, but bottled water was available everywhere. My boys took excursion tours (while I was scuba diving), and again, the tour operators had lots of bottled water on hand. I allowed Oliver to drink a tiny sip of coconut milk fresh out of the nut, but I excused him from anything else that was offered on the farm tour in which he participated. Better to be safe.
Oliver just loves the “all inclusive” hotels. When you look for him, look no further than the aqua-bar, where he will order a Shirley Temple or a Singapore Sling while chatting with the barmaid.
I had actually planned to take him to the Symposium in Danvers, Massachusetts. His immediate questions where: “Do they have a swimming pool?” “Are there palm trees?” “Can I order my drinks?” “No?—I am not going!”
Two years ago we traveled to Disneyland and stayed just outside the Magic Kingdom in a little hotel with a kitchenette. We went to the park early in the morning, regrouped, did homework, had naps in the afternoon, and then went back in the late afternoon. Again, I carried all the buns, etc. in Tupperware in our hand luggage. With Cambrooke pancake mix available, travel is now becoming a little easier.
One thing I learned on my trip to Mexico. Don’t put all the remaining formula in your suitcase assuming you don’t need it any more. Our luggage was already checked in when they told us that the flight was delayed several hours. We finally took off seven hours late. Even on the way back, it is advisable to have a two days supply of everything on hand.
I don’t think that I have written anything new or astounding, but maybe this can serve as an encouragement to others to venture a little further from home.
Nilolai Rudd is 28 and he and his parents, Eric and Barbara, belonged to our support group for many years. Nilolai is currently living and working in Massachusetts. He is planning to publish a book of poems he wrote. Here he shares one of them.
I wrote a poem called "Nearly There" while attending Symposium 2002. The poem addresses how I feel about the transition from boyhood to adulthood. For me, there seemed to be this underlying transition period in my twenties when I didn't feel like I really fit anywhere. I was too old to be treated or act like child, but instead needed to face life's realities. At the same time, I also felt and still feel, like I don't really belong with the adults. Since I had to grow up so fast because of the MSUD, I didn't have time to really enjoy being young. I felt out of place during dinner conversations with other adults because I couldn't really contribute anything to them. So I felt like the proverbial fly on the wall. At the Symposium, I guess I just felt like I needed to hash out those thoughts. Sort of like therapy, I guess.
Nearly There
I was nearly there,
Or so it seemed.
It couldn’t be real,
So it must have been a dream.
Not quite fitting in with the young . . .
And my life as an adult has barely begun.
To most, I seem invisible,
Looking on from the outside in—
Never quite knowing where I’ve been.
My friends have all scattered afar,
And me, I sit, writing at this bar . . .
With my existence, some good, more miserable.
Looking on I ponder,
While many people wander.
"Why am I here?" and "What’s the deal?"
No comfort, no care, no special someone . . .
So here I’ll sit, in silence, till the day’s done.
—Nikolai
Kay Larsen
Must I drink that formula again? On the MSUD eGroup, two questions are asked more often than any other question. How do I get my child to take the required amount of formula? How and when do I get my child to make the switch from a bottle to cup? Since these are problems for so many parents, it seemed a good idea to address them in this issue of the Newsletter. To do so, I summarized the responses the parents and grandparents on the eGroup gave to these questions. I owe a debt of gratitude to Mr. Phil Murry, a grandfather who helped comb the MSUD eGroup archives for messages pertinent to the topics.
These ideas were not taken from a book, but from the experiences of those who have dealt directly with the problems. The methods were found to be successful for families—though, admittedly, not without some struggles. I think every parent would agree that no two children are alike. Each parent needs to experiment and find the method with which they feel the most comfortable and that achieves the desired result.
How can I get my child to drink the formula?
1. Pray for patience. Don’t expect the battle to be won overnight.
2. Be firm and consistent.
3. Try to determine if the child is sick, really doesn’t like the formula, or has seized on formula refusal as a way to assert their independence and push your buttons. This may help you decide what method will work best for you.
4. Use hunger as an ally. Offer the child the formula first before you give them anything else to eat or drink.
5. Make it the child’s choice. Say something like, "You can choose to drink now and then go play, or you can choose to sit here and drink later!"
6. Distract the child by letting them watch a favorite TV program or video while they drink. Read a book to them at formula time. Let them turn the page as soon as they drink a few swallows.
7. Some parents use the opposite approach. If the child does not continue to drink the formula, the video is stopped, the TV gets turned off, or the book gets closed until they cooperate.
8. Make a chart. When the child cooperates by drinking the formula in a set period of time, give them a reward such as stars or stickers.
9. Since it frequently seems to be the smell of the formula that children find offensive, have them drink it from a sippy cup or a closed container of some kind with a straw. This eliminates much of the odor.
10. Drinking from a straw also provides the advantage of the formula going straight to the back of the mouth and missing a lot of the taste buds. You might try one of those fancy curlecue plastic reusable straws just for fun. (Make sure you rinse it out immediately after using.)
11. Take the child to the store and have them select a special cup to use only for formula drinking.
12. Depending on the formula you use, try different flavorings or sweeten with corn syrup. Parents reported using Strawberry or Chocolate Quick and Hershey’s Chocolate Syrup. Others tried mixing the formula with Gatorade, Kool-Aid, orange juice or making a shake with frozen lemonade. [Check the leucine and/or protein values and adjust the diet if necessary.] One parent reported that Ross has six different flavorings for their formulas.
13. Use ice in the formula. Drinking it very cold may help cover the taste. [Be aware of the possibility of choking on ice, particularly with young children.]
14. Dilute the formula as this will minimize the strong taste.
15. Call in reinforcements. Sometimes an older sibling whom the child tries to imitate can get the child to drink when parental attempts have failed.
16. Divide the day’s formula into five or six even amounts and give these servings on a strict schedule.
17. Since a sleeping child is in a more relaxed state, some parents set an alarm to get up in the middle of the night and give the child what they missed during the day. The battles of the day are forgotten, and the relaxed, sleepy child drinks without realizing what they are doing. Also when a sippy cup is left near the sleeping child, the child will sometimes drink it on his own during the night. [Do not allow formula to set too long without refrigeration.]
18. Mix some of the powdered formula or the liquid formula into the child’s food: for example, in a baby’s pureed food, in an older child’s applesauce, orange juice or in puddings, etc. [Caution: don’t add too much at a time or your child may reject the food and become suspicious of all foods.]
19. If your child definitely does not like their formula, talk to your doctor and/or nutritionist about changing formulas. There is a selection of wonderful formulas available. Check under Dietary Resources on the MSUD website. Do some research and contact the companies for nutritional information. Then share the information with your doctor and/or nutritionist who may not be aware of the formula options. Ask your nutritionist to obtain samples to try before you buy a case of a new product.
20. Never, ever, allow anyone (this includes grandmas and grandpas) to make disparaging remarks about the formula in front of the child. Adopting a "poor you" attitude will make a child, even one who has been drinking his formula quite nicely, wonder—if grandma thinks this stuff isn’t very good, why am I drinking it? Try not to even allow yourself to feel negative about it. This formula is your child’s key to life and health; be grateful that it is available. Attitudes, even unspoken ones, transmit very easily to children.
21. When all has failed, the battle has been prolonged, and family life is suffering, some parents—after careful consultation with the doctor and nutritionist—have chosen to use a G-tube (gastrotomy tube) for feeding the formula directly into the belly. This requires minor surgery to insert the tube and ongoing care of the site. The tube requires changing at intervals, but the formula can be given this way for very long periods of time. [See the following article by Gabriele Patterson on this topic.]
We all know that, especially when a child is sick, adequate formula intake is paramount to keeping them out of the hospital and avoiding the complications of MSUD; and yet that is the time when even a compliant child may refuse it altogether.
In addition to the above suggestions, here are a few that may help with the sick child.
✷ Reward the child for taking some formula, maybe with a favorite food or drink.
✷ Use a syringe. One person made a game of it by putting food coloring in different syringes to make different colors of formula. Then the child could see “the magic color” on his tongue.
✷ Partially freeze the formula and make it into a slush. This is particularly good to do when there is severe sore throat.
✷ Set an oven timer for a half hour or whatever schedule you want. Give the child just one ounce of formula. (Easy to give with a medicine cup). Repeat and gradually increase the amount of formula and the time between drinks. [This one works especially well in cases of upset stomach to avoid vomiting.]
✷ Make the formula more concentrated so they have a smaller volume to drink (ask your doctor or nutritionist about this first).
✷ If all else fails, and the child is getting sicker or is in danger of dehydration, etc., it may be advisable to check with your doctor about the possibility of using an NG-tube (nasogastric tube).
The NG-tube is not the same as a G-tube. The NG-tube is inserted through the nose and goes down the throat into the stomach. The formula is then given through the tube. Some clinics teach parents how to insert and change an NG-tube themselves, particularly if the child is frequently ill. It should not be left in for long periods of time like a G-tube. It is a temporary solution to tide you over during a critical time. Be aware of possible serious side effects from the overuse of an NG-tube.
How and when do I get my child to make the switch from a bottle to a cup? [The term bottle used in this section refers to the bottle used to feed babies unless otherwise stated.]
This can be a very emotional issue for parents, particularly in the United States. There seems to be more pressure to wean children from the bottle (or breast) much earlier than in other parts of the world. The pressure may come from other people (well-meaning relatives and friends), who point out that the child across the street has been off the bottle since he was nine months old. Why is your child still hanging on to the bottle at his age? Or the pressure may be internal because the mother feels that she is not a good mother since her child isn’t weaned from the bottle yet. Sometimes the pressure may come from the doctor who is concerned about the future dental health of the child.
Formula
time for Parents may also have deep concerns about switching their child with MSUD to a cup. They fear the child will no longer drink the amount of formula required or will totally reject the formula. Some mothers reported that their children will drink anything from a cup except their formula.
❤ Take a long hard look at your child and your situation and decide if the time is right for your child to be weaned. Do not allow yourself to be pressured into something that you do not feel your child is ready for.
❤ Again, pray for patience. Don’t expect the battle to be won overnight.
❤ If this is your first child, get some advice from other parents in your circle of friends as to how they weaned their non-MSUD children. Read a couple of books about it. If you have already been through this with another child, just try to remember what you did right at that time.
❤ Review all the suggestions given in the first part of this article for getting your child to drink his formula. Many of them can be adapted for this situation as well.
❤ Be firm and consistent. As one mother put it, "Stick to your guns . . . I think a lot had to do with who was boss! I finally won the fight."
❤ If your child’s formula consumption drops for a day or two, no permanent harm will be done. [Caution: just make sure calorie consumption stays up.]
❤ If the child can understand this approach, try talking to them about how only babies drink from a bottle, and how they have grown up now. Make a big ceremony of throwing away (or packing away) the bottles and throwing away the nipples. This might be followed by allowing them some kind of "big boy" or "big girl" treat as part of the celebration.
❤ Remember, the bottle is a closed container and reduces the smell of the formula. Since smell is a large part of taste, and the smell of the formula may discourage drinking, make the switch by using a closed container, such as a sippy cup or sports bottle, to eliminate much of the smell.
❤ One person had great praise for a sippy cup called Avent which has soft removable spouts in different textures of rubber— a cross between a bottle nipple and a spout. By starting with the softest one, eventually the transition can be made. It does not spill and can be used by the child if they are lying down. [Note: we are not pushing the use of any particular product, just reporting on the experience of someone who has used it successfully.]
❤ Use peer pressure to help you. Encourage the child to be around other children who do not drink from a baby bottle and point this out to them. Their peers may also be quick to make the point themselves.
❤ Do not get stressed out by this situation. Several parents wrote in to "confess" that their children had resisted being weaned from the bottle for years, and yet, finally, the day had come. For them, getting the formula in is the most important thing, not how it goes in. Several persons stated that there had been no apparent harm to their children’s teeth as a result of their prolonged time on the bottle. [Note: good oral hygiene probably becomes extra important if your child stays on the bottle for a prolonged time.]
The bottom line is, as one mother reported—she has never seen a job application with the question, “when were you off the bottle?”
NOTE: If anyone sent in a suggestion to the eGroup relative to either of these topics and did not find it included here, please forgive the oversight. Currently there are well over 2000 archived messages on our site. Although there are subject lines, the subject line doesn't always match the content. I did my best to search out all the pertinent messages, but may, inadvertently, have missed some. I apologize if I have missed yours.
TO G OR NOT TO G, THAT IS THE QUESTION?
Gabriele Patterson
Gabriele
Patterson in conference with Dr. Huseyin Mehmet and Dr. Dean Danner When there is a decision to make on whether the G-tube (gastrostomy tube) is an option for a child with MSUD, the views are quite polarized. Here is my pole.
Part of my life was given back to me when I discovered the G-tube, and it did not take me long to discover it. My son was diagnosed with a variant type of MSUD when he was one month short of four years of age. He had unmistakable symptoms before diagnosis, but regretfully, his physician did not interpret them correctly. Because of this, Oliver has some brain damage. Other than the shock of having a permanently brain damaged child, the rest of the new circumstances were not a huge problem for me since I have a science background.
The diet did not cause huge problems—Oliver liked French fries anyway. Getting him to take the formula was a problem. We spent 3 weeks with him in the hospital while his leucine tolerance was being tested. During this time he sported an NG-tube. Having had the taste of regular food for four years, there was no way—absolutely no way—with or without a flavoring agent, to get Oliver to drink the formula. I was sent home with an NG-tube and instructions on how to change it. Every 4 to 6 hours Oliver had to have some of his formula gravity fed through the tube. Well, that certainly took care of the uninterrupted nights I had hoped for.
Changing the tube by myself was a complete impossibility. We had to go to the hospital where they put Oliver under heavy sedation. I remember one time when they tried using just a muscle relaxant. I can still hear his muffled screams. It took 2 nurses to hold him down and he was bleeding profusely out of the nostrils. In a very short time, three things became abundantly clear: 1) Oliver would never drink the solution 2) I was wearing out rapidly 3) Neither one of us would tolerate any more NG-tube changes. I simply could not do this to a small child.
The G-tube was my salvation. Two months after the initial diagnosis, Oliver was scheduled for surgery. The procedure was very short, 15 minutes, with essentially no discomfort afterwards. The pump was not very strong, so often when Oliver rolled over in his bed, he would squeeze the hose, and the pump would sound an alarm. However, Oliver usually slept quietly, and I could sleep until the “dose done” alarm forced me out of bed.
A miracle of technology, my latest pump shuts itself off and has a stronger mechanism, so I rarely get “no-flow” alarms. It is trouble free. I take Oliver to the bathroom before I plug him in and essentially forget about him for the rest of the night.
We are now working or our third kind of “button,” the Entristar. [A gastrostomy feeding button is the device inserted in the stoma, an opening to the stomach.] It is relatively new, and about three times a year the Children’s hospital phones to find out if we have any problems. There are none. It functions perfectly.
Oliver can do any type of sports he would do otherwise (other than when we tried to do rolls on the bars; but he did not like that anyway). When he gets involved in mud castles at the beach, I usually put an old shirt on him to protect the tube, but then I would prefer having a shirt on him anyway when he is out in the sun. When the kids ask him what “that thing” is, he tells them that he gets some food into his tummy this way, and the kids usually say “cool” or something like that.
Oliver is a very stable, healthy child and is seldom sick. He has not missed a day of school in 18 months. However, when he does get sick, the G-tube is really handy. When he needs those calories most, I usually get them in. I pop him in front of the TV and either drip in MSUD formula or my sick day formula of electrolytes and polycose. I think this has been a significant factor in helping him get over minor illnesses fast and has prevented that spiral into something more problematic.
We go on vacation with Oliver and his pump. For air travel, we borrow a lighter travel pump from the hospital. We mounted a bracket in the camper and run the pump off the batteries if there is no electrical hook-up. If all else fails (for example, the pump broke when we were in Mexico) I simply syringe it in.
Oliver Patterson, age 9I would prefer that Oliver drank the formula. No doubt about that, but I had to pick my battles. I have huge battles with him every day: to get him to eat while taking Ritalin, to actually have both gloves and his backpack on him before he gets into the car, to do ninety minutes of homework after school, to sit straight and to close his mouth while eating, etc. There is no room in the day to fight another battle. Ultimately, the important thing is that I get the formula into him, all of it, with minimal fuss. I am pretty sure that one day he will get rid of the G-tube. (Picture Oliver on his wedding night, “Honeybunch, would you please plug me in?”) The other MSUD patient in our province just got rid of her G-tube now. She is 16 and she is dating. When we decide that Oliver does not need it any more, the stoma can be closed off with two stitches.
For me, the G-tube is the perfect solution. I have not heard any unfavorable comments from parents whose children have one. It is worth looking into if your formula battles are taking up too much of your time. The beauty is that it is not permanent.
Hailey Wiggin
It is with a deep sense of sadness that we announce the death of Hailey Wiggin, 3 ½ year old daughter of Jason and Aimee Wiggin of Taunton, Massachusetts. Hailey had undergone a partial liver transplant surgery at Massachusetts General Hospital in Boston in an attempt to cure her MSUD. Her father was the donor for the liver. The surgery was performed on December 17, 2002, but severe complications set in, and Hailey died in the early hours of January 2, 2003 at the hospital. Our thoughts are with the family at this difficult time. They have our prayers and deepest sympathy.
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