My 2yr Old Daughter Had The Endoscopy

[sashabetty]

Yesterday we took our daughter to children's for an endoscopy. She has been symptomatic but IGA deficient so the blood tests told us nothing. Her symptoms have coincided with adding gluten and abated with removing gluten.

Since I have seen the question of what to expect with having a child get an endoscopy, I though I would share our experience, which may be different from what other people experience:

We got to Children's Hospital at 7:15am, and our daughter has eaten and drank nothing since dinner the night before. We have told her about how she is going to the doctor and is going to sleep while the doctor looks in her tummy. She talks a lot about how she is going to lay on her belly and the doctor will put a blankie on her and she will take a nap.

Had the usual pre-surgical check-in, weight (no gain in 5 month) and height for the anestesia, etc. Change into gown and slippers, which was the part that upset her the most. I think this was a product of being woken up early, not eating and too many unfamiliar things happening and she just wanted to hang onto things that were comfortable and familiar.

Talked to the anesthesia resident that explains that she will get IV anesthesia. Eventually meet the actual anesthesiologist who says she will be getting inhaled anesthesia, not IV, and we discuss the merits of both methods and agreed to inhaled.

As we sit down in each new room she asks if this is where she will be sleeping.

Go into OR and sit holding my daughter on my lap. They ask what flavor she likes and she picks strawberry, so they give her the mask and a q-tip with nasty strawberry scent and tell her to start painting the mask. She paints my shirt a bit too.

They are paging the Dr, who finally shows up and we discuss the number of biopsies she will be taking (this should have happened ahead of time but it has not) and we come to a number that is compromise between her number and mine.

They put the mask on my girl, and she doesn't like that and tries to turn her head away a few times, and I help hold her still and then she starts to look spaced out and relaxes to sleep in about 30 seconds. I help put her on the table and cover her with a heated blanket, then we kissed her. They ask if we want to leave her doll, and we say she's not attached to it, but if she can have her right arm free she will want to suck her thumb, and they agree to do an IV in the left arm.

We waited in stage 2 for her to wake up and be brought to us. About an hour later a nurse walks up carrying our daughter who looks not at all upset or out of it.

She ate a popsicle and drank some juice, and I think it all went down too fast because she started threatening to throw up. This upset her and she cried and heaved for about 20 minutes then was very subdued and clingy for another 45 minutes or so. If we had made her slow down a bit with the juice this might have been avoided, or it can be a natural reaction to anesthesia or perhaps the scope irritated her stomach a bit.

She had her IV removed and changed back into her clothes. By this time she was reaching her limit with the hospital experience and got a little cranky.

We went home at about 11:00, almost four hours after we arrived. Our daughter was very hungry, but we fed her soft foods (as is recommended after the procedure) in small doses to see if her stomach would get upset, which it did not. Soon after getting home she was back to her normal active happy self.

She then devised a game where she was the doctor and gave us strawberry medicine and then fed us gluten. We have not tried to explain all of the details (have not used the word gluten in talking to her) and haven't discussed it much in front of her until we get more answers, so she obviously pays attention to what is going on.

She was energetic for much of the day but she did take and extra-long nap.

I am always impressed at how patient and adaptable our daughter is, and how well she handles unfamiliar situations. She held up really well, and I wouldn't call it a traumatic experience.

We will now wait a week for the results. At this point, I don't have any anxiety about the results. No matter what they show I feel pretty clear about what she should not be eating.

[scaredparent]

I take my almost 16 mo old son tomorrow for an ecd and a colonosicpy.. My son has been on a clear liquid diet for 2 days and he is fussy. I know he can't wait to get food tomorrow. I hope everything goes as well as you childs went .. Glad everything went well and wish me and my so luck.

[sashabetty]

2 days with no solids? It's hard to imagine trying to enforce that with a toddler. I hope that everthing goes well for you and your son today. Post an update on how it went.

[momof2]

I am sitting here with blurry eyes trying to read the screen! My 17 month old went through this 3 months ago, and although she was fine once the procedure was over, it was heartrenching going through it. Our day sounded a lot like yours, and maybe that is why I cried when I read your post. My daughter is also a thumb sucker, and so they put the IV in her foot because of that. I told them, she will go crazy if she can't suck her thumb, so somehow make some changes. I look forward to finding out the results...aren't you glad the biopsy is over????

[scaredparent]

Things went well, they did a ECD a colonoscpy and a pancris test. He was very hungry by the end of it. He was in surgery for almost a hour. It all went well they didn't see much swelling but he said that doesn't mean much. The dr said he might have a small amt of constipation after surgery. He was out of surgery for 15 min and had already had 1 diahrea stool. I am scared that they are going to say "sorry there is nothing wrong with your son". He has only gained 6 lbs in 1 year, since he has been 3 months old. They don't know what is wrong with him. They are checking for celiac disease, esosinophilic, crones and reflux. He has had vomiting and diahrea since he has been 3 months old. He weigh 8lbs 7 oz at birth and he weigh almost 14 lbs at 3 months old yesterday he at 16 months old weighted 20lbs 2oz. When he was 3 months old I started him on cereal. Everytime I fed him he had loose stools. When I started him on oatmeal he also vomitted. His lab all came back normal. He has the ethiophia tummy. He also can have upto 15 loose stools a day. ???What do I do if the biopsy comes back normal???? Does any think this sounds like their child. Good luck with your test results "sashabetty".

[sashabetty]

scaredparent,

I'm glad to hear that things went as well as they did, though I know it's still not easy to have that sort of testing done on our children. I hope that the tests tell you something, when do you expect to hear back?

As far as my daughter's symptoms, she was fine for weight gain and digestion until 13 months, then she had 2 weeks of runs, then watery stool with undigested food and mucous along with lethargy, weight loss, clingy-ness, and other symptoms for 2-3 months until two days after we stopped feeding her gluten. Then it was a dramatic improvement. She did great until we put her back on gluten, then had screaming fits, back to the runs and moucous, bloated belly, etc, and just maintaining her weight with no gain in 5 months. Until I took her back off gluten this week, and since then she is making formed stool again.

and momof2, I am so glad the biopsy is done! It went well, but the anticipation and the emotional drain is so hard, plus now we are done with the gluten, regardless of the test results! I don't care what my family says about how they are unsure that she has a problem, I am sure and that will have to be enough no matter the test results. But I am still interested to see what the results are.

[scaredparent]

Well after 16 days of waiting test results are in. The dr told me that he doesn't have celiac. Which in one way is great in another it is aweful because they do not know why he is not gaining weight and is not growing. They are treating him as if he has a parasite and a bacteral infection even though all culture and other stool samples came back negitive. I talked to my ped. and she told me to try the medicine if it doesn't work to go gluten-free and see if it works because he is very young to be testing for celiac disease. She also said if a gluten-free diet works to have the biopsy and blood work redone when he turns 2. He is only 16 months old when the test was done. Every thing they said looked normal. They can't tell me that he is normal when he has only gained 6 lbs in 1 year and and only 7 inches in his whole life. He has diahrea about 10 times a day. He also throwsup a lot. They determined that was from a delayed gastric empting (his food don't go down fast enough). What is everyone opinion about starting him on the gluten-free diet?

[sashabetty]

scaredparent,

The testing is such a frustrating process. I wish I could tell you what would help your son get better. I know how frustrating it is when doctors can't tell you what is wrong with your child. It sounds like you are determined to be a good advocate for your son't health, and that is an important part in finding what will help him. If I left it to others, everyone would say my daughter was fine with stinky runs and weight loss and lethargy at 13 months, but I knew better and I will keep pushing for what made her better, and in her case that was eating gluten-free. Trust your instincts, if you think something isn't right with your son you do know best.

It couldn't hurt to try gluten-free, it is a huge adjustment at first, but there is a lot of great support here for figuring out food choices. I would be hesitant to try going gluten-free at the same time as you are doing other treatments because if ther is a change in your son's symptoms it may leave you wondering whether it was medicine or food that made things change.

You son's symptoms, except for the throwing up, are very similar to my daughter's symptoms before going gluten-free. Of course I can't say if going gluten-free will work for your son, but it is definitely worth ruling out, and I don't believe that the tests alone can rule out the possibility based on our experience and the stories I have read on this board.

In my daughter's case, the change in symptoms is the only proof we have that she has a gluten issue, no tests have come back positive. I don't care anymore if it's celiac or gluten intolerance or if anyone wants think it's some kind of food neurosis that I have manufactured. I have watched how her health changes in relationship to her consumption of gluten and that is all of the evidence I need. Would confirmation from an MD be helpful? Sure it would, but I have to trust myself to do what's best for her. That to me is the biggest drawback with diagnosing a child through diet challenging. You can't get the official stamp that gives you the credibility you need when dealing with family, friends, and schools. But that comes after improving the child's health, which is the key issue.

I hope that you find what works for you child very soon. Take care.