Endoscopy And Anxiety

[dkelm]

Matt has his endoscopy (with biopsy) and sigmoidoscopy on Aug 9 at 9am. How did you, as a parent, deal with any anxiety before, during, and after? We won't know anything until the 19th, which is when he has his follow-up appointment. Right now I'm full of anxiety; I'm nervous and scared. I know I'll likely not be able to sit still during his procedure. Did any of you get to go back during the procedure, or did you wait in a waiting room. I think this is where most of my anxiety is coming from: I don't know what to expect during the procedure. I don't know what (other than the medical part of the test) will happen.

Any BTDT advice?

[skigirlchar]

i had the procedure...was in an outpatient wing of a hospital and they gave me (a 33 year old) the option to have my mom wait there with me or not. i said "no thanks" but that is because my mom tends to aggravate me. but there were kids and seniors with their families each in their beds as we all waited to get our iv's and get rolled in. the parents with the young kids were allowed to walk into the procedure room - prob until the actual anesthesia started working.

when i woke up i could see that parents were with their kids across the area from me in recovery. i finally caved and let them get my mom. the procedure room i was in was pretty small, but there was a big TV for the dr to actual watch was the scope was doing (i obviously couldn't since i was asleep.) the biggest issues i had were 1) i have very "crappy" veins so they had to have the anesthesiologist do my IV & 2) my body holds on to anesthesia so i was a big groggy for 3 days. if it wasn't for the anesthesia, i could have gone to work the next day. other than that i would never have known i had had a biopsy. i didn't even have a sore throat from the tube.

i would call and ask if you could bring your child's fav stuffed animal, books if they read, or hand held video game (with headphones) for during pre-op. it will help them with the boredom. i actually spent more time in pre-op than anything else - bored to tears - because by the time my appt came they were running behind. my actual procedure only took about 20 minutes.

my mom was given a pager (like at a restaurant) during the actual procedure. she went on a walk of the hospital grounds.

thinking good thoughts

[Mizzo]

Matt has his endoscopy (with biopsy) and sigmoidoscopy on Aug 9 at 9am. How did you, as a parent, deal with any anxiety before, during, and after? We won't know anything until the 19th, which is when he has his follow-up appointment. Right now I'm full of anxiety; I'm nervous and scared. I know I'll likely not be able to sit still during his procedure. Did any of you get to go back during the procedure, or did you wait in a waiting room. I think this is where most of my anxiety is coming from: I don't know what to expect during the procedure. I don't know what (other than the medical part of the test) will happen.

Any BTDT advice?

The absolute hardest part for me was the time before the scope, so I feel for you. I had to feed gluten filled foods to my most likely celiac disease child and then wait. UGHH!!!!!!!!

It took over a year to get to the test because of non being diagnosed properly, therefore saying to myself its only 1 more week got me thru it.

The test itself was a breeze for her, we the parents suffered more in anxiety than she did in discomfort.

We were with her in the prep room just talking and keeping her calm. We walked her into the procedure and they put the mask on her and went to sleep, we were a wreck, she was fine.

We had to wait in the waiting room about 1 hr, then as soon as she was wheeled into recovery we were called in there before she woke up.

Our girl had a mildly sore throat that day and that was it, she got a popsicle in recovery and was very happy.

BTW: We did not even discuss the procedure with her till the night beforehand.

Good luck, having the test and therefore a conclusive diagnosis was worth it.

[StephanieL]

It was the hardest thing I have ever had to do but we did it. Hang in there Mama!

I tried really hard not to let my son (3 years old) see how very nervous I was. I would cry at night, in the car, in the shower but NEVER in front of him. We talked about it over and over starting 3 days prior to the procedure (which was suggested by the Child Life specialist). When we went in to the hospital he was actually totally cool about it. He was SUCH a trooper and the Dr's and nurses said he was really well prepared. They let me gown up and go with him into the OR suite (ours was done in the OR due to my sons allergies). I was with him till he was asleep. As soon as I was out the door, I cried some more. It took about the 20 minutes (we just did the endoscopy.)

I think him being prepared and willing and cool with it helped me get through it. I will NOT do it again. We had an inconclusive biopsy but that is it. Won't do it again.

Much luck to you and your baby!

[catgriffith]

My daughter was 5 when she had her endoscopy/biopsies done (2 yrs. ago) and it was so much harder on me than her in preparation. Because going back onto gluten right after we were told to take her off gluten, I thought she'd be so sick again, but she wasn't! So I kinda had high hopes that she had been misdiagnosed with her bloodwork (...not so.) BUT, I had high anxiety like you and I just told my daughter that she would be asleep and feel nothing. Unfortunately, they rolled her away from me and her dad BEFORE she was asleep and THAT is what she remembers about the whole thing. Crying and reaching for us and us not being able to go back with her. But we were allowed back in the prep area with her. They gave her some "funny juice" which made her sleepy but not sleepy enough. I suggest you request to stay with your child until he is asleep if possible. But the waiting is very hard on parents, take some good books!! Just know your baby will be better off knowing and it will all be over in about an hour. My child felt fine afterwards, she did have some major crying as she awoke, we were told it was the medication side effect. But no other negative side effects at all. And the Dr. came out immediately and gave us the rsults, no waiting on that. Good luck Mom, it will all be ok. Just remember this is a good thing, to help his tummy and health improve.

[catgriffith]

After reading your post again, I am sorry I didn't answer your questions in my last reply to you! We were only allowed in the prep area like I said, not to the room where our child was put to sleep. Then we waited in the waiting room (which seemed like HOURS! but it wasn't). The Dr. came out to report to us immediately afterwards, showing us pictures of her insides and confirming the celiac. Then we were allowed to go back where she had already awoken. I do wish we had been back there BEFORE she awoke, I know she was scared. But a nurse is with them monitoring them all of the time of course. And you ask what I did to help my anxiety in the days before the procedure (and I had some MAJOR anxiety!!) I prayed and prayed for peace and strength. I needed to concentrate on being positive about it all in front of my daughter, which is hard to do when you are falling apart on the inside yourself. But God gives you strength!

[dkelm]

Thanks. I am a nervous wreck! And I've had these procedures done on myself, both of them! (For other issues.) That was a long time ago and I didn't have anxiety, but I sure do now! My baby is not even 2 yet, so I can't really talk to him about it, he won't really comprehend it. So we haven't said anything. I love the advice of waiting until he is asleep to leave his side, because he will scream otherwise.

Thanks! I don't know if I'll be able to read. I'll take my homework and some knitting. Hopefully those two things will keep me occupied. eek!

[suzyq63]

Sorry about jumping in without proper introductions, but we just went through an endoscopy this morning. Alison is 13 with some developmental delays. The hospital where she had her endoscopy was wonderful to deal with. I was able to stay with her until she actually went off to sleep. They wheeled her away and I went to the waiting room. Fifteen minutes later they were calling me to come back to the recovery area, where she was still asleep. I would call the hospital and ask what their normal procedure is. I don't see why you can't request to stay with your son until he's asleep and be back with him before he wakes up.

Paula

[scarlett77]

To be honest my husband and I were a complete wreck. James was 22 months when he had the procedure. He really didn't have any comprehension of the whole thing, but we just told him that they were going to look at his tummy so that we can make him feel better. We took him into the prep room where they gave him a shot of something to make him a little loopy before they administered the anesthesia. I had a hard time seeing him all loopy. Once he fell asleep they took him for the procedure and escorted us to the waiting room. We only waited about an hour but it seemed like eternity. They came and got us as soon as he was in the recovery room. He was a total champ and even woke up in a pretty good mood. Once he was able to drink and interact we were able to take him home which was less than an hour later. He was completely normal by lunch.

Our doctor actually called us the following day to confirm and officially diagnose him with Celiac Disease. I really hope they don't make you wait that long for the results. I know this has been a very difficult process for you and your family. My heart goes out to you!

[seezee]

When we did the endoscopy/biospy we got in due to a cancellation a month before our scheduled appointment. My daughter was ten at the time. Everyone was super nice to her and gave her lots of praise and attention. We went first thing in the morning. She was pretty anxious and we were allowed to stay with her until the anesthesia kicked in. The doctor was really kind and knowledgeable and answered all our questions and the nurses were great. After she went in, we went to the waiting room and I didn't even have time to flip through a whole People magazine before she was waking up and we met her in the recovery room. She was back at school the next day and started a gluten-free diet. Her cousin has celiac so she was really familiar with it and was really starting to feel like she did not want to eat it ever again and was not happy to be forced to. Her blood tests were pretty unequivocal. I think one was over 200 when normal is less than 6, but the doctors really felt like it was a good idea to have a look. Personally, I find a year later the tests and diagnosis help us stick with it. Also, I promised her she could go to Belmont Toys and get anything she wanted after the scope (well within reason) and that helped too.

[seezee]

10 days seems long to get results. It seems they can take a quick look for preliminary results. It seems like a reasonable request. Surgeons etc. don't always realize how hard this is. I think in their point of view this is routine and don't understand how extremely stressful this can be.

[Juliet]

Our son was 2 years 2 months old when he had his endoscopy. And it was far harder on us than him. They let us be with him until less than 5 minutes before they put him to sleep, and then the moment he woke up they brought him back. No IV's for him, and we left the hospital the moment he could walk without help and drink water without throwing up. We got there at 7:45 a.m. and left at 10:00 a.m. And there were no residual effects for him either; he started playing the moment he got home. At nearly 7 years old now, he has no memory of that day, but he does have memories of the 3 day stay in the hospital with nearly round the clock tests that occurred 3 weeks before the endoscopy.

I stressed nearly non-stop before the procedure (I also had a newborn baby at the time and had very little sleep so I'll blame it all on that ). But honestly, it was a waste of my time, neither did it help myself or my family, to do that as much as I did. There are always the "what if" scenarios that as parents we can OBSESS over, but remember that you need to be a parent first, which means control your stress as best as you can and show your child lots of love right now. And when you need to vent or have any questions, just come to this forum. This place was probably the best source of information and support that I had when we first got the diagnosis. Good luck!

[dkelm]

Thanks! I do keep wondering why it is going to take so long to hear the results. He (the doctor) did call me and when I asked he said it takes 7 days, but my post-op is scheduled for 10 days later. I keep hearing people mention that they heard right after the procedure or the next day. Oh man, that would be wonderful to know that quick! We are just a month away from his second birthday, so I am getting even more anxious in what the heck kinds of food I can prepare for him and what kind of cake can I make?!

Just in case, does anyone have any gluten free birthday cake recipes?

[Grace'smom]

Thanks! I do keep wondering why it is going to take so long to hear the results. He (the doctor) did call me and when I asked he said it takes 7 days, but my post-op is scheduled for 10 days later. I keep hearing people mention that they heard right after the procedure or the next day. Oh man, that would be wonderful to know that quick! We are just a month away from his second birthday, so I am getting even more anxious in what the heck kinds of food I can prepare for him and what kind of cake can I make?!

Just in case, does anyone have any gluten free birthday cake recipes?

Until you have some time under your belt with gluten free baking (requires some trial and error becz of the flours involved) I would recommend the Betty Crocker gluten free cake mixes, comes in both yellow and chocolate. The only thing I wish I knew before I bought it at the store was that it only makes an 8x8 pan size, so you'll need two if you're making a 9 x 13 or layered cake. The cake is delicious and tastes just like traditional yellow or chocolate cake mix. She also makes a line of gluten free frostings, these are in the regular bake section of your supermarket and when you read the labels you will find it does not contain any food starch (wheat) on the label as many of the frostings do. The choc chip cookies and brownies are also great. I made the choc chip cookie mix w/reese's pbutter chips and spread it out in pan, congo-bar style, yesterday and my whole family went crazy over them. The cake mix, I think, is even better than the local gluten free bakery that I've bought cakes from. Good luck.

[scarlett77]

Thanks! I do keep wondering why it is going to take so long to hear the results. He (the doctor) did call me and when I asked he said it takes 7 days, but my post-op is scheduled for 10 days later. I keep hearing people mention that they heard right after the procedure or the next day. Oh man, that would be wonderful to know that quick! We are just a month away from his second birthday, so I am getting even more anxious in what the heck kinds of food I can prepare for him and what kind of cake can I make?!

Just in case, does anyone have any gluten free birthday cake recipes?

[/quote

I second the Betty Crocker mix suggestion. My boys LOVE the chocolate cake. They prefer cupcakes to regular sized cakes though. If you google "gluten Free goddess" I have used her recipe for vanilla cupcakes with mocha/chocolate frosting to celebrate a birthday to cater to children with Celiac as well as dairy & nut allergies. Those were yummy too and pretty easy to make. As far as party food, you can use pamela's bread mix to make pizza (can shape into mini's if you want). Grilled meats (I found that my boys prefer pork and chicken) or kabobs. You can make your own gluten-free chicken nuggets too. I just used Pamela's pancake & baking mix with some Pappy's seasoning (like season salt) and some parm cheese for the breading. Home made french fries (I bake mine) or even make those chili-cheese fries. Oh man...now I'm hungry.

[Kelly&Mom]

My daughter and I have both had the biopsies and really, compared to other surgeries I've had and my youngest's heart surgeries, it was no big deal. One thing that did help when my non-celiac daughter was 5 and had to have a an angiogram was a dose of Valium that morning. She has a medical anxiety (can't blame her) so the Dr. just prescribed one pill, we gave it to her on the way to the hospital and she was soooooo relaxed, just whimpered a little with the IV which was amazing because when she was 2, it took 3 nurses to hold her down!!

It's over very quickly. My daughter had some coughing afterward but wanted a milkshake on the way home. I was just sleepy for the rest of the afternoon. Just keep reminding yourself it isn't a painful procedure and your son will be fine

I third the recommendation for the Betty Crocker cakes! We've been trying all different kinds as my daughter likes to bake and so far these are the best cakes and brownies. If you have a Sprouts in your area, the freezer section has many choices for things like gluten-free chicken strips, corndogs, donuts, bread and some really good frozen chocolate and carrot cake loaves. We ate the carrot loaf in about 15 minutes between my daughter, myself and her non-celiac friends, it's that good! So as a new mom, if you don't have time to bake, just get a couple of the chocolate cake loaves, some frosting and go to it, make him a train or car or something w/ fun candies

Goodluck

[scarlett77]

Thinking about you and your family today...I hope all went well and you get results soon!

[dkelm]

Thinking about you and your family today...I hope all went well and you get results soon!

awwe, thank you so much. It went okay. He took between 6-8 biopsies. There was one area that looked bumpy, but he said that could be normal (like swollen lymph nodes). Matt also had some pretty thick stool (two different ones), which is very funny to me since he always has liquid poo. But the doc said that could be new moving around old. I don't think the stool in there is that old though and he pooped one of those chunks out yesterday. He also said (as well as everyone else there) that the results do take between 1 and 2 weeks. I'm going to be in agony for the next two weeks. Just rush it already.

Matt did have a hard time waking up and they had to give him two doses of albuterol. He was also really mucousy after the procedure. He wouldn't eat for awhile either. He didn't really eat anything until last night, and his procedure was over by 9:40am. He slept on the way home, then took another long nap when we got home. I think he just had a hard time getting the anesthesia out of his system, but he was back to normal by the end of the night.

So now, we wait. Bummer. Doc says we should be able to see food allergies or celiac through these biopsies. Does anyone know, can they tell specific food allergies through this type of procedure?

[twohokies]

awwe, thank you so much. It went okay. He took between 6-8 biopsies. There was one area that looked bumpy, but he said that could be normal (like swollen lymph nodes). Matt also had some pretty thick stool (two different ones), which is very funny to me since he always has liquid poo. But the doc said that could be new moving around old. I don't think the stool in there is that old though and he pooped one of those chunks out yesterday. He also said (as well as everyone else there) that the results do take between 1 and 2 weeks. I'm going to be in agony for the next two weeks. Just rush it already.

Matt did have a hard time waking up and they had to give him two doses of albuterol. He was also really mucousy after the procedure. He wouldn't eat for awhile either. He didn't really eat anything until last night, and his procedure was over by 9:40am. He slept on the way home, then took another long nap when we got home. I think he just had a hard time getting the anesthesia out of his system, but he was back to normal by the end of the night.

So now, we wait. Bummer. Doc says we should be able to see food allergies or celiac through these biopsies. Does anyone know, can they tell specific food allergies through this type of procedure?

I can't answer your questions directly but was your doc able to give you any indication of she s/he saw when doing the scope? And/or the direction from blood results? Only reason I ask is b/c we did my 3yo's endoscopy today. Her blood results came back positive on 8/2, our ped scrambled and got us into a GI on 8/3 and procedure today. He took pics and showed us the irritation at the entrance of the small intestine and also the scalloping along the sides........both non-diagnosable indicators of celiac. He will be more surprised if the biopsy results come back negative due to the bloodwork and what he saw. But, we should get the biopsy results next Wed (5 days post-scope) and then meet with him the following week due to his vacation (10 days post-scope). What I am most anxious about is getting in to see the nutritionist and setting up our game plan, but that won't happen until mid-September most likely .

FWIW, my husband and I were in tears as we watched our baby put to sleep. My husband told me that he had to hold himself back from knocking out the anethesiologist for forcing the mask on our daughter to put her to sleep; but he knew it was for her own good. Thankfully we only had to wait 15mins but it was still hard waiting and then watching her while the meds wore off and she was waking up (she's a crank in the mornings as it is!).

I hope you can get some answers soon!

[iupgator]

My 2 year old son was tested for Celiac Disease a little over a week ago. His doctor called this week to say he tested positive. She said the normal range is between 1 and 19 and his was 26. I've been reading about celiac disease the last few days and I've read that when you're tested you should be eating things with gluten. My son hasn't had much at all with gluten in it. His issue is he won't eat and has been living on Pediasure for the past 6 months. He will eat YoBaby Yogurt, only the blueberry and apple kind. Sometimes he will eat organic baby food purees but that's about it. He has had pieces of cupcake and biscuit but not recently, the cupcake was in June and the biscuit was about 10 months ago. I've been checking everything he's been eating and nothing seems to have gluten in it, I've also checked products I use on him and everything is okay. If he hasn't been eating gluten how were his levels elevated and is this accurate? I have read that I can pass it on to him if I am eating gluten, that could be happening, I know I've touched him after eating sandwiches, etc. The other issue is he has no symptoms, other than constipation. He has only had diarrhea twice in his lifetime and it was because he was ill. He has never lost weight and has gained weight slowly. He doesn't vomit at all. He also doesn't seem upset or like anything is bothering him, he rarely cries and doesn't seem to have an upset stomach.

Anyway, we have an endoscopy scheduled for mid-September. I'm nervous about it but I'm sure he'll be fine. He is beginning to hate doctors because we've been to so many (for other health issues).

The more I read about celiac and other parent's experiences the more it doesn't really sound like that's what my son has. I know everyone is different though so it could just be my son's issues with celiac are different from other kids. Has anyone experienced the same thing we have?

[scarlett77]

I can't answer your questions directly but was your doc able to give you any indication of she s/he saw when doing the scope? And/or the direction from blood results? Only reason I ask is b/c we did my 3yo's endoscopy today. Her blood results came back positive on 8/2, our ped scrambled and got us into a GI on 8/3 and procedure today. He took pics and showed us the irritation at the entrance of the small intestine and also the scalloping along the sides........both non-diagnosable indicators of celiac. He will be more surprised if the biopsy results come back negative due to the bloodwork and what he saw. But, we should get the biopsy results next Wed (5 days post-scope) and then meet with him the following week due to his vacation (10 days post-scope). What I am most anxious about is getting in to see the nutritionist and setting up our game plan, but that won't happen until mid-September most likely .

FWIW, my husband and I were in tears as we watched our baby put to sleep. My husband told me that he had to hold himself back from knocking out the anethesiologist for forcing the mask on our daughter to put her to sleep; but he knew it was for her own good. Thankfully we only had to wait 15mins but it was still hard waiting and then watching her while the meds wore off and she was waking up (she's a crank in the mornings as it is!).

I hope you can get some answers soon!

Honestly I wouldn't put too much stock into the nutritionist. We saw a highly recommended dietician 2x and the only helpful information I received was about cross contamination, toiletries, and some common names of wheat, barley, and rye. It is a good starting point but I learned much more information online.