T E Fistula

So much has happened since I've updated you last and I'm completely torn. Thursday evening (last week) around 9PM my son had supper (number I don't know what because he just loves to eat and doesn't seem to stop). I saw that food got stuck (he again ate fast) but assumed that it would either go down or come up. He played nicely after that (he had taken a late nap so wasn't interested in going to sleep yet)and I really wasn't worried. Before putting him to sleep, I nursed him and he ate fine and so I assumed that whatever had been there had gone down. Well he woke up at 4AM (normal for him) and I tried nursing him. He started making his awful sounds that he makes when food gets stuck so I stopped nursing him and he started to throw up. I hoped that his throwing up cleared his esaphagous so I waited for him to calm down and tried to continue nursing him. After about a min. he stopped nursing and started throwing up plain milk and started coughing terribly. I then knew it was time to call EMS who took him to the ER. What a day we had there. First they took x-rays and said his left lung looked a bit large so maybe food went in there. Then they said his color was fine so it's probably not a problem. Then they hooked him up to IV (they had so much trouble getting a vain and he couldn't stop screaming). Then they took him up for a barium swallow and saw a foreign body stuck. They repeated the barium swallow 5 minutes later and sure enough the object (I suppose food) hadn't budged. We went back down to the ER were the chief of ped. surgery came to speak with me and said that there was something there but was not obstructing anything and she will therefore send him home and it will eventually pass. She also said that, amazingly enough, though his last barium swallow (taken in March) had shown a mild narrowing of the esaphagous, now there is no narrowing at all! It is perfectly straight! I didn't think that was possible! Anyway she felt that food gets stuck just because if dysmotility and I guess that nothing can help that except for better chewing, slower eating and frequent drinking. She also felt that I should get a GI doctor involved and I should schedule an endoscopy soon to make sure whatever is stuck, passes and just to take a better look at what is doing inside of his esaphagous. Then a GI came in and I didn't like her one bit. She stared saying that there is no foreign body but it's all an irregularity of the esaphagous and wouldn't listen to my arguments. Well she scheduled and endoscopy for next week and I do not plan on going to her. After that I did my best to leave the ER as soon as possible so that she shouldn't change her mind and touch my baby then.

Well yesterday I went to see another ped. GI who came very highly recommended. He said I'd need another barium swallow to make sure the foreign body is out and most probably it is just dysmotility and he will have to learn to deal with it as he gets older. He will not take my case though if I do not switch completely to his hospital. I understand him and I'm sure he'd give me much better service but his hospital is so far from my home and not near anything. I'm so nervous I don't know what to do. I like the doctor, dislike the hospital. By the way, my surgeon has rights in that hospital too so that's no issue. I guess I have to sleep on it.

By the way his cough has not gotten any better but now I can hardly think of that.

Hope Ansley doing well. Does she have any issues with dysmotility?

Keep you posted.



Diana

Diana,
 Oh my goodness, I am so sorry that you and your son had to go through that! I know you must have been terrified. Is he doing any better now as far as keeping his food down? Ansley has had problems with swallowing her food whole or eating too fast and it gets stuck in her esophagus. She has always vomited shorty after and been fine afterward. Her doctors say her problems with getting food stuck are because she dosen't chew her food enough, and she will develop better chewing habits as she matures. We are scheduled to go for another barium swalllow in December so I will keep you updated. I can relate to what a scary experience it is when your child has food caught in their throat. Please let me know what you find out!
Vicki

Diana - I am so sorry to hear that your son and you had to go through all of that. My daughter does get food stuck in her throat as well. Normally she'll just throw it up and then go on about her business. The surgeon said that until she learns how to chew properly we will be going through this, which is about age 6. I try not to let her bite into anything because she most times take too big of a bite so I cut everything up into tiny peices or mash it.

Vicki - How often do you get barium swallows done? My daughter is 15 months old and her last one was when she was about 5 months. The doctors have not said anything about getting another one anytime soon. I guess if I wanted to because of a problem but not routine. We do not have a GI doctor and her ENT specialist said that she never needs to see her again and cleared her with a vocal cord paralysis. I am just curious because she has has 2 repairs, esph. atresia and dueodenal atresia, along with TEF and a malro, and much more.

Ashley,
My daughter is 21 months old and she gets barium swallows about every three months. She also had a TEF and esophageal atresia. She has had around 30 dilitations on her esophagus.
If you don't mind my asking, what is dueodenal atresia and malro?
Hope your daughter is doing well!
Vicki

I'm still so unsure what to do next. The GI called me back. (I had left him a CD which contained all of my son's barium swallows.) He said that there is a mild narrowing of the esaphagous - the same as was on the last barium swallow. He wants to do an endoscopy to see if a 9mm scope will fit down. If it doesn't, he will get in touch with my surgeon and speak about how to go about dilating. (I had spoken with my surgeon about endoscopy's a while back and he thought they were too risky for TEF babies) This really confuses me because the ped. surgeon that I'd seen in the ER had said that there was a narrowing on the previous barium swallow be it had completely disappeared! So far 3 dr.s have looked at the same picture and the first (the ped. surgeon in the ER) said there was no narrowing the second (the GI in the ER) said there was an irregularity of the esaphagous and the third (this last GI) said there is a slight narrowing - the same as before). I don't understand how 3 dr.s could see the same picture and come to 3 different conclusions. Well I have an appointment finally with my ped. surgeon at the end of this week. I left him a message that he should please take a look at the barium swallows and I know that I will trust what he says but his secretary didn't know if he would be in that hospital before my next visit. (He's affiliated with so many hospitals that it's hard to keep track.) I hope he will guide me. My mother-in-law (with whom I'm extremely close) is pushing me to go for another opinion to another GI. My husband says that will just add more confusion and I shouldn't bother. In the mean time, I'm continuing with only pureed foods and I'm hoping that my surgeon will guide me further. By the way, his cough has not gotten any better and I'm still concerned with that.

Ashley, from speaking with these different doctors I get the feeling that some surgeons do barium swallows every three months so that they can catch a stricture before it gets bad because it's easier to deal with it then. (The ped. surgeon in the ER explained that to me.) Then other surgeons (like mine and I suppose yours) only do it symptomatically because they don't want to put the babies under any unnecessary radiation. I also think that sometimes slight narrowings can go away on their own. I certainly understand both theories.

All the best and please keep us updated.

Diana

Vicki - Duedenal atresia is just like DA but it is in the intestine part of the body. Her stomach was not attached to her intestines, just like her esphageous wasn't attached to her stomach. The malro is a malrotation of the intestines which caused her appendix to be on the wrong side. The doctors took the appendix out so we will never have to worry about that problem.

Wow, 30 dilitations! I am sorry to hear about that. My daughter, thank you Jesus!, has not had to have any. We are having increasing problems with food though. Do you notice the difference when her throat starts to narrow? I really try to do only baby food or blended foods now. But she likes my food so we do little bites. Anything bigger then little gets stuck. Other then that she is a wonderfully well child. Thank you for asking.

Diana - I am sorry to hear that you have such a headache going on. I can appreciate what you are going through. I went through a lot of doctors before my daughter was even born. I weeded out the ones that told me to abort her and that she would have little to no chance at surviving. My question to you would be this, what is your heart telling you? I usually know that there is something going on with my child or that she is ready to move on to the next step without the doctor's say so or their tests. I tend to stray away from ER doctor's. Just my experience, but we have found a couple that we like. They are good for the moment needed but when it comes down to it, her regular doctors know more about her and are more experienced in the special fields. Just pray about it and see what God leads you to do.

Also, I find that when I listen to my husband, even when I am sure he is wrong!!, things turn out well. He is my voice of reason when it comes to our daughter because, as you well know, mom's are very concerned about everything to do with their children. Especially ones that have more "special" needs. Just my two cents on that subject.

My daughter has a really nasty cough... I think I have already told you this. But my family is really concerned for her but honestly it is normal. She also has a "wet" breathing sound when she eats/drinks. Don't be too concerned because it may just be like hers. It doesn't bother her too much. Mainly at night... but the doctors think that that is allergies.

I hope that you get some rest. Do not worry too much. Children are tough and can with stand more then most adults. Trust your instincts.

I hope both of you and your children are well! Blessings!

Hi, how are you doing?

My visit with the surgeon went very well.
I asked him about my son's cough which he explained is from trachea malacia. There is nothing to do for it but it is also nothing to worry about because it's completely normal.

He had also looked at the barium swallows for me and discussed it with the doctors in both hospitals and he explained to me what is really going on in his esaphagous. When he was born (I suppose this is true for all TEF babies), the top half of his esaphagous was wide and the bottom narrow. Therefor when he connected the 2 it formed a tunnel. The narrowing is therefor do to a narrow esaphagous and not a stricture. I think that is just the way his esaphagous will always be and I guess he will have to learn to eat slowly and drink alot but he did think that an endoscopy should be done. I guess you get a clearer picture with an endoscopy and also they will check for reflux. I am continuing with pureed foods until the endoscopy is done. He said I'd be better off if a GI would do the endoscopy than if he would. However I had a very unpleasant experience with the GI (the one in the hospital that I didn't like) on Friday and so I will not end up using him. I'm trying to get an appointment with another GI in an excellent hospital (though it's also about an hour from my home but what can I do, at least it's in the city so it's easier to get to and it is one of the top children's hospitals).

Well, I feel better now and hope that I can get the endoscopy done soon so that he can start eating again.

Hope all is doing well with your girls. By the way, have either of you ever had an endoscopy done? I'm wondering if they will need to intubate him through his vocal cords again - I hope it won't cause any further damage. Vicki, do you know, when Ansley was dilated, was she intubated past her vocal cords?

Ansley's do for a barium swallow soon I think - Good luck!

Diana

Diana,
I'm glad that your surgeon was able to calm your fears! Sounds like the appointment went well.
I'm sorry, I don't know the answer to your question about how she was intubated. No one has ever even mentioned her vocal cords to me in all the time she has been seeing these different doctors. She has also not had a endoscopy done. I will be honest, I don't even know what that is.
She did have a barium swallow done 2 days ago and we got fabulous news! Her surgeon is satisfied with her esophagus and says she needs no further barium swallows or dilitations! Whew, after almost 2 years, I was thrilled to hear those words!
Keep in touch!
Vicki

Vicki,

I'm so glad to hear that you had good news from your surgeon! You must be so relieved now. Just curious, does he still want to see Ansley or are you totally off the hook now?

An endoscopy is just like the scopes that he's had by the ENT. It's like a little camera that they will put down his esaphagous to see what is doing inside(I think it's a much clearer picture than the barium swallow). They can also check for silent reflux by judging how red the esaphagous looks I think. The difference between this and the one done by the ENT is that it goes much further down and so they will have to give him general anastesia.

I haven't been to the GI yet so I'll let you know,

Diana

Diana,

I am glad you have some answers! My daughter had an endoscopy done this summer...it was the beginning of July. It was very short and virtually no problem for her. She did vomit all over me from the anesthia, but other than that she did just fine with it. We were suppose to have the pH probe done, but by the time we finally did this (she was 8 months old) I knew she had reflux and I knew it was due to food allergies. When I learned of the food allergies I eliminated it from my die (as I was still nursing) and the reflux magically went away (for the most part). Obviously, we still had problems here and there. We also knew from the swallow study she was slow to clear from her esophogus, so a lot of her coughing was due to that.

I hope that you are able to get another doctor to preform the endoscopy. Let us know how it goes!

Kristyn

Diana,
 We are completely off the hook with her surgeons! He doesn't want to see her again unless I notice any problems with gagging or reflux. I"m so incredibly excited to scratch her surgeons off her list of doctors. It didn't sink in for me that she was really done with the barium swallows and dilitations when he told me...it hit me later that night when she was eating supper. My little girl couldn't even swallow her own saliva when she was born, and today she is eating turkey and green beans. It literally brought tears to my eyes. Amazing.
Okay now that you have explained what a endoscopy is, Ansley did have those done. (I always just called it a camera ) She had that done after every single dilitation. Sorry I didn't understand what you meant, I have had a hard time remembering all the medical terms.
Hope you and your family have a wonderful holiday!
Vicki

I'm glad to hear that Ansley is doing well.

I haven't been to a GI yet, still waiting. In the meanwhile, my husband and my other kids came down with strep throat. I asked my ped. to culture the baby to be safe, though he had no symptoms, and he too came back positive for strep. Well, as soon as he started the antibiotics for the strep, his cough disappeared. After nearly 3 months - his awful cough is completely gone! I guess it's not reflux after all. At least he's feeling better.

Hope all is well by you,

Diana

We finally got to the GI who is also recommending an endoscopy / possible dilation. Now we're waiting for it to be scheduled. She also wants to put my son onto prevacid (anti-reflex) because she says that everyone has reflux and the dangers of silent reflux in TEF babies is that it can damage the esaphagous without us realizing because he is not in pain. She also recommends endoscopes every few years to check and make sure reflux is not causing damage. I'm not to happy about starting the medication but I guess I just may have to.

Lots of luck,

Diana

Diana,
So sorry to hear about the strep throat. Hope everyone is feeling better now!
If hope your son doesn't need a dilitation, but if he does I'm sure he will be just fine. Ansley got so many of them and she always did well with it. I would say he had been very fortunate not to need any yet.
I hope you and your family had a wonderful holiday
Keep in touch!
Vicki

My son was born with TEF and esophageal artesia, had corrective surgery, has ongoing reflux and tracheomalacia. All are being managed quite well, but we just had him scoped again and were told that (at 1 year of age) there has been 0% improvement in his tracheomalacia. Yet, all of his doctors (pediatrician, surgeon, GI, and ENT) say there is absolutely nothing you can do about tracheomalacia except wait. I really am frustrated by this and am wondering if anyone has heard information to the contrary about tracheomalacia. We just want to do everything we can to help him, but keep being told that there is no treatment for this. True?

Welcome Jill.

I happened to have spoken to an ENT yesterday regarding this issue. My son is going to be have an endoscopy done in the near future and we would like an ENT to scope simultaneously (My son has laryngo-trachea malacia and a paralyzed vocal cord.) He said if I want he would do a broncoscopy but he thinks it is totally unnecessary because, as long as his breathing is OK, tracheamalacia can last for years but there is nothing to do for it. I did speak to another TEF mom whose having a bronc done to check her daughter's tracheamalacia to make sure that it's nothing more than that because she's 3 and still has very noisy breathing (and has even turned blue). But so long as your son's breathing is OK, (meaning no turning blue) I've done so much research and it seems it's best to do nothing other than wait.

Vicki,

I'm getting really frustrated with my surgeon. I think he's avoiding me. We want to get the endoscopy done but the GI keeps calling the surgeon to schedule and he's never responding. I think we will have to go with another doctor which I'm not happy about but we can't wait forever to re start solid foods. I did (as I just wrote) speak with an ENT in this hospital who is willing to scope and check his vocal cords. He will probably recommend doing something if it is still paralyzed but he cannot say of course without seeing the scope first.

Well, I hope to have some news soon. How's Ansley doing? I hope all is well.

Diana

The surgeon FINALLY spoke to the GI for me. She said that he was actually very very nice and spent a while on the phone with her discussing my case. He is unfortunately not able to come to the endoscopy but he is quite sure that a dilation will not be needed. He did advise that a doctor that can dilate should be there just in case just as a precaution. Well now I'm told that the GI is going on vacation on Feb 15 so I really hope we can schedule before that date.

I'll keep you posted,
Diana

I am not sure what has happened to all of my previous posts. But I wanted everyone to know how buddy is doing. 3 weeks ago he had a nissen done due to reflux aspiration which led to chronic respiratory distress. He spent 8 days in the hospital. Since the surgery he has been fed thru a gtube because the nissen was done too tight and no food will pass from the esaphagus. It is sooooooo hard to convince a 3 yr old that he has to sit still 2hrs 2 times a day and 8 hrs overnight so he can eat. He is sooooo full of life. Tomorrow, Feb 4th, they are going to try to dialate the nissen to see if that will help resolve the eating issue. He wants to eat by mouth so bad. I will try to keep everyone posted at to what is going on.
Merri

Diana,

How frustrating it must be to wait so long for answers! I hope that the endoscopy goes well. Is your son eating any solid food at all? How old is he now? Has his cough returned?
Ansley is doing wonderful, she will be 2 years old at the end of the month. She had a follow up appointment with the NICU and they are sending her for a development test in March because they are concerned that she isn't talking much yet. This test will determine if she needs any kind of physical or speech therapy. I'm a little nervous about the test. I have a feeling that she will need speech therapy if not physical therapy as well. If it will help her though, that's all that matters.
 Let me know how things go!
Vicki

Vicki,

What a weekend I've had!

On Friday, (I had already given up on my surgeon and scheduled an appointment with a different ped. surgeon in the new hospital) when my surgeon called and asked me what's doing. When I complained to him that I'd have to wait until March most probably for the endoscopy he said that if I'd like, he will get me in this week in the original hospital. (I guess either he's not so happy that I'd switched hospitals or he was trying to be nice.) All weekend long I agonized over the decision but in the end I've decided, (with the help of the most AMAZING individual who is extremely knowledgeable in the medical field and knows many many top doctors and refers patients to the doctors best for them) that I will stick with the new hospital because the GI there is much better. I'm disappointed that I'll have to wait but in the long run I know he's better off. The down side is, he is not eating any food (he probably could but I'm afraid to be blamed if I go against doctors' advise) and I rarely keep him on the floor because he always manages to find things to put into his mouth even when the floor is spotless (which is quite difficult when his siblings are around). He is however eating baby jars and yogurt etc. and has gotten used to it though, I wish I could give him real food again.

You said that you are taking Ansley back to the NICU for a developmental test to see if she needs therapy. How interesting. They insisted I do that when my son was a tiny baby. Being that he had been laying in the NICU they said he'd surly benefit from therapy. He currently has PT and OT once a week and he just started speech (I wanted it to help strengthen his vocal cord) 3 times a week. I strongly believe that it can only help all kids. He may have developed just as well without but therapy never hurts. Also, for example, his speech therapist reads to him tons and they say this make kids smarter in the long run son why not do it for him if I can? They will very likely recommend therapy for Ansley (around here the state provides it at no cost, I hope it's the same by you), though you should know that even without it she'd really be OK. But if she were my kid, I'd take what I could get - you simply can't go wrong that way.

Let me know what happens and I'm sure, in the end, she will be fine. Try not to worry too much,
Diana

Vicki

I forgot to add that my son is 14 months and his cough never returned. I assume it was some kind of bacterial infection in his trachea - worsened by, I guess, tracheamalacia (which has practically disappeared as far as I can hear), and the antibiotics from the strep must have cured it.

Meanwhile, I just got a call that my surgeon is working on getting me the chief GI in the original hospital for me. Oh, why does this have to be SO confusing? I don't know what to do!

Diana

Diana,

Any word yet? I agree it all sounds very confusing. I can understand you wanting you get your son back to solid foods. Hopefully that is just around the corner! I'm glad to hear that his cough has not returned. Ansley never had that problem, although I've heard that many TEF babies do.
I agree with you about the therapys. If they say she needs it then that is the path we will take. She did get a little physical and speech therapy when she was very small. I have had a lot of people tell me that they get therapy for their children for free so I'm hoping that our state is the same way.
I did get some good news from Ansley's kidney doctor this week. If you recall, she was born with only one kidney and has been on medication 3 times a day almost since birth. Her last blood work looked so good that he decreased her medication to twice a day! Exciting stuff for us! She was also weighed at that doctors appointment and weighed in at 22 pounds. That sounded awfully small for (almost) 2 years old. What do you think?
Keep me posted
Vicki

Vicki,

Sounds great about Ansley's kidney. What do they expect? Will she need to take meds for it always or only while she's young? In either case -I'm so glad to hear that you could cut back on them for now.

As far as her weight being only 22 lbs, that does sound awfully small but from experience, I wouldn't be concerned at all. My 6 yr old was 15 lbs at a year, 18 lbs at a year and a half. I don't recall what she was at 2 but I assure you it was not much more than Ansley but you know what? She's a very healthy, happy smart little cutie. She's still quite small (I think in the low 30 range the last time she was weighed back in Sep.) but neither my husband nor I are small so I believe one day she will just have a growth spurt. The main thing is if they are healthy and developing properly. I spoke recently with a woman (also a TEF mom) and she said that her daughter is 2 and a half and weighs 19lbs but the doctors are not concerned. I think though, if my child were THAT small I might be concerned.

As far as my son, I haven't yet decided which hospital to stick with but I think whichever can schedule me sooner with the doctor of my choice is who I will go with. Meantime my son was crawling one day last week (after I spent lots of time sweeping and vacuuming on my hands and knees just to make sure I didn't miss a crumb) and some how he got a hold of a cucumber peal. (I had peeled a cucumber while he was on the floor.) Well, later that evening, I tried feeding him a baby jar but he kept throwing up. My husband turned him over and started pounding his back and up came the cucumber peel. I'm wondering, a normal child (I think), even if they swallow a large piece, if they could swallow it without choking it would go all the way down. What would happen if Ansley would have swallowed it? It was not such a small piece and it was folded over. Is this a sign that he needs to be dilated or is this just a fact of life for a TEF kid? Well, my husband who is always nervous, said I can NEVER put him on the floor again no matter how clean it is.

The good news is that he's almost walking. Yesterday he took 27 steps in a row! If he'd only be on the floor more I believe he'd be walking and then hopefully not finding everything to put in his mouth.

Well I guess everything will happen in the right time.

Happy Birthday to Ansley and I hope to continue hearing good news about her,

Diana

Diana,

I hope that one day she will not need to take medicine for her kidney. I've asked that question and really not been given a straight answer. We go every three months and get her urine and blood checked so time will tell I suppose.
Thank you for the reassurance about her weight. Her doctors are not concerned about her weight anymore so I don't know why I continue to worry. I think it has been a worry for me for so long now that I have a hard time letting it go! I'm pretty petite and my husband is tall and thin so I shouldn't expect her to be big either I guess.
As for the cucumber peel, I think it would have choked Ansley too. The thing with Ansley though is when she does have something stuck in her esophagus, it's VERY obvious. She starts turning red in the face, whining, and gagging. Does your son do these things? Another thing she does is completely stops eating until she throws it up. If she had something stuck in her esophagus there is no way she would allow you to put more food in her mouth. One thing that we have found that helps when she has something stuck is to give her something to drink through a straw. It seems easier for her to suck the liquid through a straw at that point than through her sippy cup. Is your son drinking through a straw or a sippy yet?
That is wonderful about the walking!! Ansley didn't walk until she was 17 months old. Sounds like he is doing good!!
Keep in touch!
Vicki

Vicki,

Thanks for the info. My son usually has "stuck" symptoms. This time however, I heard him try to cough and I thought maybe there was something there but then he stopped and play happily without any more "stuck" signs for a couple hours. I even nursed him and he was fine with that too. He was very interested in eating and it didn't seem to bother him that it couldn't go down. But usually he makes funny noises when something is stuck and often tries to throw up. As far as your advise with drinking, I have tried so hard to get him to drink from a cup, sippy cup, straw even a bottle but he refuses. This is something I'm trying very hard to work on being that I know how important it is for TEF babies. Honestly though, all my kids are very poor drinkers. They eat a lot and drink very little.

Being that you say that it would have gotten stuck by Ansley also, it really makes me think that he will not need to be dilated. I'm not sure if I'm glad about that or not. In a way, I just wish that they could dilate and solve all these problems. But I guess he will just learn to deal with it as he grows older.

Does it still make you nervous when Ansley gets food "stuck"?

All the best,
Diana

Diana,

Ansley had pneumonia right before her first birthday and had a lot of trouble taking her bottle. As a matter of fact, her surgeon wanted to put her on a NG tube for her feeds since she wouldn't eat. I told them no way! Anyway, during all that she went to a sippy cup. I think it was because her nose was so stuffed up she had a hard time with the bottle and the sippy cup was easier for her. Hopefully your son will just pick it up like she did. I didn't have to wean her at all, she just started refusing the bottle.
YES!!! I still get so scared when she gets food stuck. Fortunately it doesn't happen often. The last time was on Thanksgiving day when she got part of a boiled egg stuck. I had tears in my eyes, my hands were shaking, it was so scary. I have had to learn a lot of patience where feeding is concerned and let her take her time with small bites. Hopefully her meals will take less time as she grows and learns to properly chew EVERY bite!
Vicki

Vicki,

I met with the ped. surgeon that I will be using in the new hospital. I was very impressed with him and feel much more comfortable now.

He is scheduling the endoscopy, possible dilation, within 2 weeks. I can't wait until it's over. He also said there is no way to know for sure from a barium swallow if dilation is necessary. He's seen good looking barium swallows that really had bad strictures and bad looking ones that really were fine. I guess I'll know soon enough.

One other thing, He was very upset that he's not on anti reflux medication. He said that every person has reflux only our esophagus pushes the acid right back down to our stomach but a tef baby's esophagus's muscles don't work as well and the acid tends to sit there. He said if I want the surgery to last 100 yrs. I'd need to protect it with anti-reflux medication. Have you ever heard of such a thing? I HATE giving extra medication and the old surgeon felt he didn't need it. What would you do if you were in my shoes?

By the way, I took my 6 yr old to the ped. for a weight check. He was so happy with her weight, she is now 36 pounds. She's still quite small, but is actually on the chart now. She gain 3 pounds in 6 months, an all time high for her.

How was Ansley's visit with the NICU doctors?

Hope all is well,

Diana

Hello. I was curious about your little ones choking on their food. My daughter has been choking and spitting up food before it even gets to her stomach. She had an upper GI/barium shallow and it came back normal. They also want her to take reflux meds. They think that is all that it is. But she hasn't thrown up in over a week.
Do you think that she is just eating to fast? I do not give her any meds daily and only give the minium to begin with. Now that she is not throwing up, I don't think I will even give her the meds.

Thoughts?

Hi.
About the barium swallow coming back normal, I was told by numerous doctors that a normal barium swallow doesn't mean that there is no stricture. It depends on the angle that the picture is taken and how the barium goes down. I was told that a normal looking barium swallow can be badly strictured and a very narrow looking barium swallow can be a perfectly normal esophagus! My son is (hopefully) going to have an endoscopy done soon and that will give a much clearer picture. My son also chokes and throws up his "stuck" food before it reaches his stomach. I think that it's either a stricture or dysmotility.

About giving reflux meds (read my last post?), I too am unsure. Some doctors say that it's OK not to give them but I think even more say to give them as a precaution. The surgery site is very delicate and we must protect it from acid. Reflux does not mean throwing up. Acid often goes up into the esophagus without it coming as high up as in the mouth, and it can sit on the surgery site and cause stricturing. Another thing, maybe this is what your doctor meant, reflux can cause inflammation of the esophagus which can cause the food to get stuck. The only real way to know whether or not there is bad reflux is to do an endoscopy where they look at the esophagus and do a biopsy.

Good luck with your daughter and let me know how it goes.
Diana

Yes, I did read your last post. I just hate giving her medicine. Especially since she seems to be okay now. But I also don't want to cause her more harm. In about 4 weeks we will be going back to the GI doctor and she is thinking that this is the end of the testing. Do you think I should get a second opinion on a study? Or ask her to do the endoscopy just in case? My husband just had one done and he came home bleeding, which scares me for my daughter.