Another good TEDDY visit!

Another great visit! At least I didn’t jinx us like I thought I might here. My son did great with his blood draw again, so well that my husband didn’t understand why another child was upset. He’s only been able to make it for a couple of visits and missed the visits where during the height and weight you’d have thought we were torturing him. Both visits he attended our son was an angel for the entire visit and was fascinated watching/popping bubbles and looking at the blood come out of his arm. I’ve explained to my husband that not every child’s blood draw is this easy and we’re very lucky the visits have gone so well for our son.

I know at some point in the future the blood draw may scare him. It’s been great having blood draws go well so that I know it doesn’t hurt. We think the numbing cream is amazing. He’s almost at the age where I expect him to remember the drill and get excited about picking a prize and our fun trip to the zoo or museum after his visit. I only hope the visits continue going so well for our son as it makes our participation in TEDDY so easy.

Now the hard part, waiting for the antibody results…

Please help! Does your child have celiac disease?

I hope to have more guest blogs from parents in the TEDDY study soon. TEDDY tests once a year for an antibody that can mean a child has celiac disease starting at age two. We’ve had a specific request for real experiences from parents whose children have been diagnosed with celiac disease. A parent of a newly diagnosed child with celiac is struggling and asked TEDDY for help. This parent and other parents of newly diagnosed celiac kids would greatly benefit from your experiences with starting a gluten free diet, what resources you use, how you stay gluten free, daycare/school, eating at restaurants, etc.

If you’re interested please contact me at teddymomblog@gmail.com, email your TEDDY site’s email or call your main TEDDY number. You can write/type out your experiences to a list of questions or we can do it in an interview format over the phone. We will use first names or first initials on the blog to protect your privacy.

Potty trained = much easier for parents, more difficult for TEDDY stool collection

Initially I thought I’d be writing this blog a year from now. My son potty trained very early, he was completely potty trained the month before he turned 2 years old. My husband and I realize how lucky we are, the whole process was so easy with my son taking the lead and only a little encouragement from us. If you have a potty trained child you know how fast you want them to stop going in the little potty chair and do their business in the toilet. Well my son even jumped that hurdle in a matter of days. He now prefers the toilet so where does that leave us with collecting TEDDY stool samples?

I think this could be our TEDDY Achilles’ Heel. Blood draws have been easy so far, there has to be something challenging with our participation and getting my son to poop in the collection device may be difficult. My son is willing to try almost anything new for fear of missing out on something fun but is very particular and wants to be alone with the door shut during that time. I don’t think having the hat under the toilet seat is going to work for us at this time. He is still using a potty seat on top of the toilet seat and the hat won’t fit under it or under the toilet seat as the directions describe. I have some unconventional ideas for how to collect the sample including just floating the bucket below in the toilet bowl and hoping to catch something.

Hopefully we will find a rhythm with potty trained stool samples and be able to continue collecting monthly samples. Fortunately, he’s still letting me know when he needs to go and wants help after going. I hope to blog again in a few months once we have worked out the kinks and maybe learn a few tricks that could help others. Wish us luck!

Two successful blood draws in a row—could this be a new trend?

If you have been reading this blog for awhile, you may remember that my son, C, has a history of difficult blood draws . However, after trying several ways to make it better, we finally had a good experience with the blood draw at C’s 21 month visit. However, I wasn’t sure if that good experience would just be a fluke or if he would continue to do well with the blood draws.

For the 24 month visit, I did all the same things that had worked well, like putting on the numbing cream at home and spending lots of time to prepare him for the visit. When we arrived at the TEDDY clinic, he was a little shy and clingy at first but soon was taking all the toys out of the toy box and acting just as comfortable as he did at home. He’s definitely wanting to be very independent though, so we did have a little bit of trouble when it was time to take off his shoes to measure his height because in his mind, it wasn’t time to take off shoes. Fortunately, he also likes to do things that others are doing, so when TEDDY staff member B and I took our shoes off, he was happy to show off that he could do it too.

I’ll admit that I was the one who was nervous about collecting the toenail sample. At home, toenail clipping is always a two-person job, with my husband doing a great job of distracting C while I clip the tiny nails. I’m always so afraid of cutting skin and C’s feet never seem to stay still. Since I didn’t have my husband to help, I had to resort to the bribery of a lollipop that TEDDY had available. Sure, it turned C’s mouth, face, and collar bright blue, but it definitely did its job of keeping him happy, not just for the toenail clipping but also for the entire blood draw! I think the blood draw was over before either C or I even realized it had started.

In a way, I’m glad to have experienced some difficulties with the TEDDY visits because it has been a really good way for me to learn how to help C deal with other difficult experiences, like going to the doctor or getting his hair cut. I’m feeling confident that we have turned a corner with TEDDY and that we’ll continue to have pleasant visits in the future.

Interview with an adult who has celiac disease

How were you diagnosed with celiac disease?
Blood test after having major surgery.

How old were you?
47 years old

How long did you have symptoms before diagnosis? What symptoms did you have?
I had symptoms all my life, since I can recall. I suffered from chronic either bloating, thyroid problems, severe migraines, rash on elbows and feet, joint pain, diarrhea or constipation, tiredness.

Does anyone in your family have celiac disease?
Not that I know but I am inclined to think that my mother had celiac disease since we both had the same symptoms.

What has been the most challenging part of having celiac disease?
-Learning how to identify hidden ingredients in products labels
-Eating out at restaurants and at friend’s houses

What do you miss the most?
French bread, croissants, and some sweet rolls.

The least?
Pasta, pizza, crackers, cookies. There are a lot of gluten free products available.

What resources do you have that help you manage the disease?
-Health stores are great! They sometimes have nutritionists available for free consultation and staff can be helpful as well
-Reading books and articles.
-Visiting the Columbia University Celiac Disease Center and the NIH websites regularly. These websites have very good links to get additional information
-Talking to other celiac people.

How could others help out or make celiac easier for you?
People can help by getting information/education. When cooking for a celiac use only fresh and natural products. Avoid canned and packaged food.

Do you have any word of wisdom about living gluten free?
Life without gluten is the best thing that ever happened to me! When in doubt, leave it out…


Would you share your favorite gluten free recipe?

COD WITH SEA FOOD
Ingredients:

Cod fillets
Sea food: shrimp, clams, mussels, etc. One of these or all of them
Canned green peas and carrots or other canned vegetable
Corn starch
Garlic or shallots
Olive oil
Butter (optional)
Dry chili pepper (optional)
Dry white wine (optional)

Preparation:

Sauté fish and garlic or shallots in oil and butter for a couple of minutes
If you use white wine, carefully add 1 or 2 cups (depending on the amount of fish)
to pan and immediately add the corn starch previously dissolved in cold water.
Add water or vegetable or chicken broth as necessary to make it soupy.
Add vegetables and sea food
Bring to a quick boil and simmer until clams and mussels open and fish is cooked

Serve over steamed brown and wild rice or gluten free pasta.

Blood draws? Piece of cake, at least so far…

So far my son has had 6 blood draws with TEDDY. I now think I must have the easiest TEDDY baby/toddler when it comes to blood draws. At 3 months he just laughed and cooed at me, 6 months through a year he just looked at bubbles or the staff member and smiled, 15 and 18 months he did look at the bubbles more but was also interested in what they were doing with his arm and watched the blood come out.

Now I know this won’t always be the case and at some point he’ll forget how easy it’s been and get scared or maybe he’ll just be having a bad day. Writing this I feel like I’m jinxing the next visit (sorry in advance to my son and co-worker we usually see). Like every mom I hate to see my child in pain or scared. Of course that’s already happened, I can’t prevent pain or fear in his life, but it hasn’t been a problem yet in his TEDDY visits.

I feel that participating in TEDDY will be a great learning experience for him when he’s older both in altruism (doing something for the greater good) and that we all have to do things we may think are unpleasant (like the dentist). Most people aren’t as lucky as me and have their first blood draw experience at the age of 23. I’d take a TEDDY visit any day over the 6 shots at his 12 month Dr visit that was truly horrible! I hope my son will grow to love his TEDDY visits with the wonderful staff, great prizes, fun gifts and our customary after visit outing to the zoo.

Scooping poop, and no it’s not the dog’s

Having been around since the creation of TEDDY I can tell you there were many chuckles about collecting poop once a month for 4 years. How would that happen, would parents do this and the head scratcher, what happens when kids are potty trained? Well having worked out all those problems, including a few unforeseen ones like the many calls from the US postal service: is it really ok to ship this specimen sample? Is it contagious? If I mail this specimen sample will I start the next world-wide pandemic? (well ok, we didn’t get that exact question but I’m sure that did cross at least one postal carrier’s mind). So now things are running pretty smoothly.

Having collected my own child’s poop for over a year now I can say it’s pretty easy. The hardest part being remembering to do it and if I have trouble remembering, and I think about TEDDY almost every day, then I’m sure many families have the same problem. I’ve had to start putting the stool kit on the changing table once I’ve gotten my email reminder for that month’s stool sample. We use cloth diapers so once that poop goes down the toilet we have to wait and collect the next time he goes which, if we’re lucky, is at home not at daycare. Usually parents hope their child saves those diaper presents for the daycare provider instead we’re asking our son to “please get your poopies out before daddy takes you to daycare.” Crazy!

I won’t lie and say this isn’t a gross job. It’s poop, how can it not be at least a little bit disgusting even if it’s my own child? But I think it’s manageable, after all we have a dog and a toddler. I have cleaned up poop 500 times worse than any stool sample I’ve collected for TEDDY. Since we’re planning baby #2 soon the collecting of the poop will have to go to my husband for a few months until I can tolerate a wide variety of smells again. That should be great fun! What will he think of the process? Will the poop roll off the changing table onto the floor when he does it too? Maybe I can get him to write a blog entry when his day in the sun comes.