Elmo Goes to TEDDY

We just had another great TEDDY visit! My son continues to amaze me and my husband with how well he does with his blood draws. While I hope for the best I do tend to prepare for the worst, or maybe not the worst but I prepare for some trouble. My son’s “lovey”, or security object, is a stuffed Elmo we bought on a vacation last year. Elmo has made several trips to TEDDY just to help out with the height and weight which has always been the most difficult part for my son. We must weigh and measure Elmo, then mommy, then sometimes the TEDDY staff then it’s my son’s turn. With children who have difficulty or fear during blood draws this type of play can often be the first step to success. Role play is a powerful tool to use with children to conqueror their fears.

A TEDDY staff nurse who has worked for TEDDY for over six years wrote the following about the use of role playing and blood draws.

We have a really wonderful child development specialist, Donna, who works with TEDDY in helping some of our children who are EXTREMELY scared of needles and blood draws. When Donna works with these kiddos, among other things, she uses role playing and modeling as a way to help our TEDDY children deal with their fears and concerns. We, as the clinic staff, have been using some of Donna’s role playing and modeling techniques ourselves at the TEDDY clinic visits. For those older toddlers and younger school-aged children who are anxious about having their blood drawn, role playing is a great way to get them to understand the blood draw process so they can prepare for it and feel a sense of control over how they react to it and a sense of accomplishment after it’s over.
We use a stuffed animal for the role playing and go through the blood draw process just like we do with the kids. We apply the tourniquet, we wipe the arm with an alcohol swab, we use a capped needle and syringe to draw some blood, and then put on a band-aid. Then we have the TEDDY child try that same process with the stuffed animal. During this role playing, we also have points in time where the stuffed animal cries or acts really scared. We ask the TEDDY child what he/she could say to the stuffed animal to make it feel better. When it comes time for the TEDDY child’s blood draw, as we’re going along we remind him/her about each of these same steps we did with the stuffed animal. Most of the time, this role playing technique works great – the TEDDY child responds really well to the blood draw (or much better than they had been)! We also give a tourniquet and capped needle and syringe to the TEDDY child to take home and practice with their own stuffed animals or family.
Blood draws are a part of life. We’ll always need them as a way to monitor our health. For children, having blood drawn every 3-6 months in TEDDY isn’t enough time to forget about what a blood draw is, nor does it happen so often that they get totally used to it and comfortable with it. Therefore, we can only empower our TEDDY children with ways of dealing with their anxiety and being proud of what they can do.

TEDDY Staff Nurse

Communication is so important, if your child is struggling with blood draws please discuss what options are available with your TEDDY clinician.

The blood draw saga continues...

Despite having a couple of successful blood draws, unfortunately the trend did not continue with C’s next TEDDY visit. The 27 month visit started off with a big struggle putting the EMLA cream on at home. He had calmed down by the time we arrived at the TEDDY clinic, but he was still hesitant to come into the building, and when we got to the clinic room, he wasn’t his usual cheerful self but was very clingy and didn’t want to play with the toys. He wouldn’t even smile for the picture!

Eventually he settled down while we were going over the questionnaires, and he did great with height and weight, but when it came time to do the nasal swab, he got very upset again. Throughout the winter he has been sick a lot, so has had to go to the doctor when he’s tired, sick and cranky. At his most recent doctor visit, they did their own nasal swab to check for flu, but the way it was done was much more invasive than the TEDDY nasal swabs. I think that C remembered how painful it was, and he wasn’t happy to have to go through that again. He continued to cry throughout the blood draw, and couldn’t be soothed, even with a sucker, until it was time to leave.

Needless to say, I was frustrated that it didn’t go well, and I began to wonder if we should stop the study or take a break for awhile. I talked to some of the TEDDY clinic staff members about it and they recommended trying another no-ouch visit with some role-playing next time. It was possible that taking a long break would make it even harder when we did come back, and having another no-ouch visit would be a chance to show C that it doesn’t have to be painful to come to TEDDY. The role-playing would give C a chance to be in control (a big thing for 2 year olds!) and also demonstrate that the nasal swab and blood draw don’t have to be painful.

When we left the house for C’s 30 month visit, he said, “NO TEDDY!”, but he says NO to pretty much everything these days anyway, so I wasn’t too worried. This time there was no EMLA, so he was pretty happy when we got there and started playing with the toys right away. He actually wanted to do height and weight several times—I think he liked pushing the buttons on the scales. Instead of doing a blood draw, TEDDY staff member B demonstrated the blood draw on a teddy bear, and then C got to draw the teddy bear’s blood. He really liked “drawing” the blood, and putting the band-aids on the bear. C also gave nasal swabs to the bear, B, and me. However, he wouldn’t give a nasal swab to himself. I think it’s the nasal swab that he dislikes the most.

We took the pretend blood draw kit home with us, and plan to practice with stuffed animals at home before the 33 month visit. I’m really glad to have learned about this technique to help with the TEDDY visit and I can’t wait to see how it goes next time.

Interview with a parent of a child diagnosed with celiac disease

At what age was your child diagnosed with celiac disease? About how long ago was that?

My son was diagnosed at the age of 3, almost 4. He is now 5 so it’s been a year and a half since his diagnosis. He had elevated antibody levels for Celiac Disease at his 3 year TEDDY visit. So, they tested for Celiac again at the next visit 3 months later, and the antibody levels were even higher at that time. We decided to go ahead and do the blood screening one more time at the next TEDDY visit just to be sure, while at the same time consulting with a gastroenterologist to set up an endoscopy and biopsy.

Describe how your child was diagnosed

We had the endoscopy and biopsy done a month after our third elevated antibody test at the TEDDY study, and it was confirmed that he had some damage to his intestines. But, it was not significant. The gastroenterologist thought that we had caught the Celiac really early, so we didn’t see the severe damage to the intestine wall that is usually a tell-tale sign of Celiac Disease. But, he felt there was enough evidence to support the diagnosis.

Did they have symptoms of celiac before diagnosis? Please describe.

The only symptoms we saw were my son complaining of having stomach aches a lot. He would always say, “My tummy hurts” after eating. Then, when he began potty-training, he would refuse to go and become constipated. At the time, we thought it was a potty-training issue, but now we think it was all connected to the Celiac Disease. He also used to be a great eater, eating all kinds of food and flavors. Now, every meal is a struggle trying to find something that he’ll eat. The dietician we consulted with told us he may have some food aversion to different foods/textures because everything made his stomach hurt before. She said that he would hopefully grow out of it, but so far, getting nutritious and balanced meals in him continues to be a battle.

Has anyone in your family been diagnosed with celiac before or after your child?

No. I had never even heard of it before. However, I have since been tested because I was having some digestive issues. The test was negative, but I went ahead with a gluten free diet to see if it helped and it has helped me to feel better. So, I seem to have a gluten intolerance.

What has been the most challenging part of your child’s celiac disease?

Eating gluten free has become rather easy in our house, but there have been many challenges and some that still continue. The ones I’ll mention here are the ones that continue to plague us.
1) I mentioned before that getting a balanced diet in my son has been a challenge. He won’t eat fruits or vegetables without a lot of coaxing. So, we do a lot of fruit smoothies where I hide some extras like spinach and flax seed. Luckily, he likes the other types of gluten free foods that I make, and it’s getting easier to find convenient boxed items that are gluten free so I’m not spending so much time in the kitchen any more.
2) Going on vacation has also been somewhat of a nightmare, depending on where you go. I have learned to appreciate living in the metro area with all of the options close at hand. But, even with trusted stores, they carry different products regionally. We were staying somewhere on the western slope of Colorado one time (either Grand Junction or Fruita) and I went into a City Market there (which is like King Soopers in Denver) and I couldn’t find any of the gluten free products I was used to getting quite easily at King Soopers, even though it’s virtually the same store. The good part is that things continually get better. It seems that if someone doesn’t have something one week, the next time I go in, it’s there (or at least a few months down the road it’s there). Going out of state, I have to arm myself with the booklet the dietician gave us and resort to reading food labels all over again. We try to bring some snacks with us so in a pinch, we’ve got something on hand.
3) Some people ask me if it’s hard for my son when there is a birthday party or something where only gluten-filled treats will be offered. Usually this is not an issue because I make sure to send a favorite gluten free treat of his to the party so he doesn’t feel left out (there are so many options now). He has been a pretty good sport about it and he does really well on his own asking if something is gluten free before he eats something that is offered to him.
4) The only other thing that is a challenge is having to make his lunch EVERY day. The schools offer healthy lunches, but unfortunately, there is something with gluten offered as the meal choice almost every day. Each month, the only time my son can buy the school lunch is if he can get a burger with no bun or a hot dog with no bun. This leaves us packing his lunch 18-19 days out of the 20 days of school per month. And for a kid that doesn’t like to eat the healthy stuff, it is a challenge to keep the lunches interesting and healthy. This past year, he was in preschool, so the teachers would help to coax him to eat and he still brought home whatever wasn’t eaten so I could see. Next year, he’ll start kindergarten which means he’ll be more independent at lunch time. I’m wondering how long it’s going to take him to realize he could just throw away his food so I won’t know how much he really ate.

What do you know now, that you wish you knew when your child was diagnosed with celiac disease?

How easy it is to eat gluten free. It’s really not a big deal any more. I remember when we met with the dietician, we got the booklet that lists all of the additives to food labels that you should be aware of that might contain gluten. Armed with this information under my arm, I ventured out to go grocery shopping at King Soopers. I remember once I got to the aisles with all the packaged food, I was reading food labels and questioning everything and it was so overwhelming. Then I saw all the packaged convenience products we were used to getting that we no longer would be able to have and I just started to cry. I didn’t think there was any way we were going to be able to make this work, or at least I didn’t see a way to make it work without me making every food item from scratch. Don’t get me wrong, I love to cook. But, for a working family, it’s not always feasible to make home-made EVERYTHING every day! After this experience, I learned that King Soopers denotes gluten free products with a “no wheat” label that makes it easy to spot products we can have.

Did you change your whole family to gluten free food?

We eat gluten free for any meals that we eat together as a family which includes dinner every night and any time I cook breakfast items (like pancakes). Otherwise, for lunches or eating out, my husband and daughter continue to eat gluten. Neither of them of shown any signs of intolerance to gluten.

Has your child been in preschool or daycare and if yes how do you keep them gluten free? Also what do you do for special events like birthday parties?

We taught my son if anyone offers him food, he needs to ask if it’s gluten free. If the item is not gluten free or if the person doesn’t know, he is supposed to say, “no, thank you” and eat his own food. He has been very good about asking this on his own ever since the beginning. We pack his lunch every day. Special events, we’ll pack a treat for him like gluten free brownie bites or gluten free cupcakes.

What resources have you found to keep your child gluten free?

There are many good websites that have recipes and blogs that are helpful. On Facebook, I have “liked” these pages and they always post good recipes or interesting topics that come up in your news feed. I also have learned a lot from reading the comments of others on these pages, too:
· Gluten Free Recipes for Celiacs
· Udi’s Gluten Free Foods (love this because they are always asking for your opinion to make their products better or to come out with new products)
· Gluten Freely
· Rage Against Gluten
· Glutenista
· Gluten Free Mom (also a website)
· Glugle Gluten Free
· Gluten Free for Good (also a website)
· Denver Celiacs (also a website)
· The Celiac Diva
· Celiac.com (on Facebook, and website)

Would you share a recipe for a gluten free treat your child enjoys?

This recipe is from www.celiac.com:
These brownies are better than the gluten-filled variety. I usually don’t even bother with the frosting, but I’m sure they are that much better with it. Enjoy!

Here Comes Trouble Brownies (Gluten-Free)

This recipe comes to us from Valerie Wells.
(1) Melt 1 stick of butter, 2 squares of unsweetened chocolate plus 1 tablespoon coconut oil or other cooking oil in an 8 square baking pan (I put them in the oven for 4 or 5 five minutes while it preheats and I assemble the other ingredients. Be careful not to over heat it and burn the chocolate).
(2) Add to pan:1 cup sugar1 tablespoon unsweetened cocoa powder¼ cup gluten-free flour (half rice flour/half corn starch)¼ teaspoon xanthan gum (optional)2 tablespoons Jell-O Instant pudding mix (I used vanilla flavor)2 eggs1 teaspoon vanilla
(3) Stir until smooth. Bake 27 to 30 minutes at 350F. Cool before frosting.Frosting: Gently soften ½ bag semi-sweet chocolate chips plus 2 tablespoons butter in the top of a double boiler (or a metal or glass mixing bowl set over boiling water). When thoroughly melted, stir in a few tablespoons of powdered confectioners sugar until smooth. Spread over brownies and sprinkle with chopped nuts while still warm.

Down and dirty, potty trained stool samples

The following blog post is not for the faint of heart. While I will try and limit the grossness as much as I can I’d like to give as many details that may help others. I’ve written before, click here to read that blog, about my son potty training early and that I thought TEDDY stool collection would become more difficult. As of writing this we are 5 months in collecting samples with what we fondly call the “TEDDY poop bucket.” So far collection is going much better than I imagined, it is definitely more difficult than diapers and has required some thinking outside the box.

A potty trained TEDDY stool sample kit includes a round plastic tub with a lid and triangle frame that the tub is supposed to sit in. The whole contraption goes under the toilet seat. The child sits on the toilet and poops directly into this “hat.” Then the parent collects the stool from the tub. In my experience collecting the stool from the tub isn’t that much different than collecting from the diaper. The problem is getting the stool into the tub. We have been successful on each attempt but used a couple different methods. My son has yet to let us collect his stool in the traditional way by pooping in the “hat” under the toilet seat. Instead we’ve floated three times and scooped twice.

I simply float the tub in the toilet water and hope it is in the correct position to catch something. This worked flawlessly for us on our first and second month. I then discovered the tub needs to be put in the toilet discreetly and with no fuss on our third attempt. We were a week past the due date and on my first attempt that evening to collect stool my son missed the tub. Later that night my husband forgot to put the tub in as he got the potty seat ready for my son. I tried to have him stand up and sneak it in but he wasn’t having any of that and refused to poop. We quickly removed the tub and I put a layer of toilet paper in the water to catch the stool. The toilet paper worked well and after my son left I easily scooped the stool out with the tub and collected the sample. I always put the tub directly into a grocery bag to avoid dripping any toilet water.

The next month, as soon as he said he needed to go, I sprinted down the hallway ahead of him with the tub in hand. I got it into the toilet without him seeing but he knew something was up. When I left, he was seated on his potty seat but about 10 seconds after I shut the door I heard the sound of the plastic tub hitting the floor. I tried the toilet paper and scooping again that time and that’s how I collected that month.

The following month I collected only a few days after his TEDDY visit so TEDDY was fresh in his mind. I tried a new approach when my son told me he had to go and said, “Do you want to poop in the TEDDY bucket?” with lots of enthusiasm, like it would be a lot of fun. He was excited and said yes and waited for me to get it out of his closet and float it in the toilet. Success!

Well, we definitely haven’t found a rhythm yet but I think we’re heading in the right direction.

Diet Records: A Note from the TEDDY Staff -- Part 2

This is part two to the questions and tips on recording diet, part one can be found here.

What if I just can’t get two weekdays?

As noted before, we request two weekdays and one weekend day for each diet record because we feel this will give us the most accurate picture of your child’s diet. However, we understand that there may be reasons why this isn’t possible for you. For example, there are a few daycare providers who do not have the time or inclination to assist with this portion of the study. We do not want any of our TEDDY families to jeopardize their relationships with their daycare providers in an attempt to get this information! There may also be other reasons why you are unable to complete a diet record according to these specifications. If the ideal diet record of two weekdays and one weekend day is not an option for you, we do understand. The computer system mentioned before is unable to analyze days that are incomplete – for example, days with breakfast and dinner only, but no information about lunch and snacks. So our preference in this case would be to use days when the child is with you all day or with someone who is willing to help you keep track of what your child eats. If, at the time of the visit, you do not have all three days completed, please just bring us the days that you have. We can always work with you to get the remaining day(s) at a later (hopefully more convenient) date, or we can use the data that you do have. We would not want to waste the effort that you put into a diet record simply because it does not meet our guidelines exactly. And for those of you with children who will be starting school soon (or are already in school), we are currently working on some tools and tips for collecting diet information from the time your child spends at school. Please feel free to ask your clinician for an update at your next visit!

Does my diet record reflect a normal diet for my child?

Finally, some parents are concerned that the diet records they are giving us are unrepresentative. Possibly without even meaning to, they think they are giving their child foods that are more easily measured, or using recipes with fewer ingredients, to help them more easily report what their child eats. Of course, we all know that the idea behind the diet records is to provide the study with an accurate picture of your child’s eating patterns. And we would like to extend an extra thank you to those families who are making a conscious effort not to change their child’s diet for ease of reporting. However, if you do worry that changes like the ones mentioned above are showing up on your child’s diet records, please do not feel bad. Even though these kinds of changes may seem substantial, the truth is that those changes are probably not making as big of a difference at the micronutrient level as you might think. Your basic philosophies regarding food preparation and eating are still in place. A family who usually uses salt only sparingly will not add large amounts of salt to their child’s food on a diet record day.

Other related concerns involve the days on which a diet record falls. For example, we heard a lot of comments around Halloween that the candy eaten around this time of year really does not represent the child’s candy intake during the rest of the year. We understand this. It might help to not think of us analyzing any one particular day, or any one particular diet, alone. When we look at the data, we will be looking, not just at your most recent diet record, but at all of the diet records you’ve given us in the past, and all of the diet records that you will give us in the future. Imagine throwing all of these days into a big pot, and then adding all of the past and future diet record days that we have received and will receive from thousands of other children, and then stirring it all up. We will look at that big soup of diet records for our analysis, not at any one particular record or day. So even though your child’s diet record may have fallen on Halloween this year, someone has to represent Halloween in order to give us the bigger picture of TEDDY children’s diets around that time of the year. But there are many, many other diet records that we receive all year round from days other than Halloween, so those other days will be represented in our analysis, too.

Why am I doing this, again?

To conclude, we know that diet records can be difficult. We do not want you to regret your participation in this study because of them. Please, first and foremost, do what you need to do to maintain your sanity! Hopefully the paragraphs above will give you some peace of mind about what many families consider to be “imperfections” in their diet reporting. We at the TEDDY Study do not expect you to be superhuman when it comes to diet records. All we ask for is your best effort, and that best effort may look a little different from day to day, and from family to family. We admire each and every one of you for the help you give us toward the ultimate goal of preventing diabetes. The diet records you complete are an incredibly important step in achieving this goal. Researchers believe that certain elements in a child’s diet could possibly play a key role in determining whether or not a child with high risk genes for type 1 diabetes goes on to develop the illness. Unfortunately, we still do not know which elements of a child’s diet are the determining factors. We would love to be able to tell all of our TEDDY parents that, by increasing or decreasing their child’s exposure to certain foods or nutrients, or by altering their feeding patterns, they can improve their child’s chances of never developing diabetes. I know everyone in this study wishes that we had that kind of information at our disposal. But it is the work that you do in maintaining these diet records that will give us the best shot at being able to provide this kind of information to parents in the future.

Sincerely,
The TEDDY Study Staff

Diet Records: A Note from the TEDDY Staff -- Part 1

On behalf of the TEDDY Staff, we want to thank everyone for all of the work you do to benefit this study. And we want to give you a special thank you for completing the 3-day Diet Records. Trust us, we understand that these can be tedious and labor-intensive. We know that they are always inconvenient, and often frustrating. And we want you to know that your work does not go unnoticed. We would like to take this opportunity to address some of the most common challenges involved in keeping the diet records.

I don’t know exactly how much my child ate!

First, we know that it is difficult to know for sure exactly how much a child eats. Many of us who work for TEDDY have children at home, too, so we see that not everything you give a child ends up in their mouth. We know that it is very difficult, for example, to estimate how much applesauce a child may have in their hair after a meal, and that you may not discover the ¼ cup of cheerios that mysteriously ended up in your child’s diaper until the next diaper change. All we can possibly ask from you as TEDDY parents is to give us your best estimate when it comes to the amount of food that your child ate. Of course, there will be some “human error” (as the scientific community puts it) involved with “self-reporting”, but this study is designed to accommodate that. Some of you may have no problem reconciling yourselves to this fact, but for the perfectionists out there, this may be a continued source of frustration. But please know that, from the standpoint of the study, estimates and “best guesses” are expected, and this will still provide us with the information that we need to reach important conclusions regarding the causes of diabetes.

What about daycare?

Second, we know that some of the meals that your child receives may be outside of your control. And not only that, you may not even have been present for some of the meals! By requesting two weekdays and one weekend day, we know that, for many of you, this requires getting information from daycares and schools. In fact, this is the idea. To get a really good picture of what your child eats, it makes sense to not only include the meals they get at home, but also the meals they eat away from home, especially if this is a regular part of their diet. A child’s diet is impacted greatly by who is offering them their meals, and a daycare may provide foods that are different than those you give your child at home. Some daycare providers do a wonderful job helping us with this portion of the study, and are even happy to be given the opportunity to participate in something they view as important. We have received feedback that giving a daycare provider some information about the study and what these diet records are helping to achieve may make them even more willing to help out. (How much information you share with your daycare provider is, of course, completely up to you.) Even the most enthusiastic daycare providers may need a little direction from you, at first, though. It is a good idea to tell them specifically what kinds of information we need. For example, tell them that we need to know how much of each food item your child ate, not just what was on the menu. They will feel less frustrated with the process if they know what is expected and can feel like they are doing a good job.

Other daycare providers, although they try to help, are unable to provide us with all of the details that we ask about. When reviewing your diet record, please know that we have to ask clarifying questions, but we expect that your knowledge of the meals that your child receives outside of your care will be limited. We never mind if you have to tell us, for example, that you don’t know how your child’s oatmeal was prepared because they ate that meal at daycare. We enter the diet records that you give us into a computer system that gives us very detailed information about the calories and nutrients a child receives throughout the day. Generally speaking, this computer system requires a great deal of detail regarding the type and preparation of foods in order to provide us with this kind of information, which is why we ask so many questions when we review the diet records. However, this computer system also has ways to accommodate some “unknowns”, meaning that meals eaten at daycare, even if you don’t know some of the specifics, can still provide us with very useful information. Foods eaten at a restaurant, or at a friend’s party, or any time when preparation details are not known, are entered in the same way.



The above post was written by a TEDDY staff member who is involved with the diet collection both locally and over all 6 TEDDY sites. Part 2 will be posted in a couple weeks.

Recording my child’s diet, how hard could that be?

Because I work for TEDDY, before C was born I knew about the diet collection. I even helped out during the training phase by recounting my own diet to be entered into the computer. But honestly, the most difficult parts of the diet collection seemed to be entering it into the computer and uploading it to the main diet database. I guess that IS the worst part from a staff point of view—little did I know how complicated the diet records could actually be!

At C’s first TEDDY visit when he was 3 months old, I knew in advance that there would be a 24 hour recall of his diet but I didn’t give it much thought. How hard could it be—C was exclusively breastfeeding every few hours—no measuring needed! When B said it was time to do the diet record I said confidently, “Just breastmilk!” Then she said, “OK, starting after midnight, what time did he first have breastmilk”? HOLD ON—I have to remember what TIME I dragged myself out of a deep sleep to feed my 3 month old? I’m trying to block out those middle of the night feedings from my memory! I don’t WANT to remember that my sleep was interrupted 3 times last night! It was then that I knew the diet record would not be my friend.

When C’s 6 month birthday rolled around we still hadn’t started solids and to be honest, I was resisting it because I loved being his only source of nourishment. Then I got the 3 day diet record in the mail. Flipping through the pages, I knew that I did not want to have to include bites of cereal that he may have eaten, or may have dribbled down his chin into the chubby folds of his neck. Problem solved—no solids until after the 6 month TEDDY visit!

When it was time for the 9 and 12 month visits I knew I had to bite the bullet—C was well into solids by that point and I was going to have to suck it up and record it. Fortunately he was pretty good at keeping it in his mouth by that point and the store-bought jarred food was easy to record. Maybe this diet thing was going to be okay after all.

Then we got to the 18 month visit. The first day of the 3 day diet I had such good intentions. I put all his food into a measuring cup before giving it to him. I even copied recipes to bring to the visit. On day 2 I was feeling so ahead of the game that I gave him his painstakingly measured food, neatly wrote it all down, and then turned around to smile at C in his high chair, only to see him feeding all the food I had so carefully measured to the dog!

It’s nice that the diets are only collected every 6 months now that C is older but I can already see the 2 year diet record will be a challenge. Often throughout the day C will stop his playing to pry open the pantry door in search of Cheerios or animal crackers. Sometimes he asks politely for them but he really prefers just grabbing the box, shoving in his little hand and taking out a huge handful, some of which makes it to his mouth and some that the dog snatches as it falls to the floor. I never thought I would give so much thought to the amounts of food my child eats!

Coming up next—a two or three part series of posts about diet collection tips from a TEDDY staff member