https://boards.hellobee.com/ Pregnancy, Baby and Parenting blog, by Hellobee en Sun, 10 May 2026 20:50:47 +0000 https://boards.hellobee.com/topic/gi-scope-on-a-4-month-old#post-2847915 Fri, 28 Sep 2018 12:30:48 +0000 fik219 2847915@https://boards.hellobee.com/ <p>@starchild: what was the result of your testing? As I was reading your initial post, I couldn't help thinking that it could have been me writing it. My son is currently 4.5 months old and experiencing exactly the same symptoms as your little one was. He is currently on Elecare and Prevacid. </p> https://boards.hellobee.com/topic/gi-scope-on-a-4-month-old#post-2847677 Thu, 27 Sep 2018 13:14:18 +0000 fik219 2847677@https://boards.hellobee.com/ <p>@starchild, what was the result of your testing? As I was reading your initial post, I couldn't help thinking that it could have been me writing it. My son is currently 4.5 months old and experiencing exactly the same symptoms as your little one was. He is currently on Elecare and Prevacid. </p> https://boards.hellobee.com/topic/gi-scope-on-a-4-month-old#post-2818307 Wed, 25 Apr 2018 08:20:46 +0000 MrsADS 2818307@https://boards.hellobee.com/ <p>@starchild ugh, that sucks. Our GI did tell us a few months after we had it done that he was starting to hear of insurance not covering it. I have no idea how much it would be. You might call the lab/hospital to get a cash pay estimate, see if there is a discount, etc. I think my deciding factor might be - (1) will your GI order the test (i.e. does he believe in it) and (2) will he change your child's medication management based on the results (i.e. will he increase the dose of the PPI appropriately based on the results)? Because if not, maybe not worth doing. </p> https://boards.hellobee.com/topic/gi-scope-on-a-4-month-old#post-2818306 Wed, 25 Apr 2018 08:18:13 +0000 starchild 2818306@https://boards.hellobee.com/ <p>@MrsADS: so our insurance is not going to cover that genetic test. I am going to try to appeal the coverage but do you know how much it cost? What your claim billed to your ins? We may try to pay out of pocket inn the meantime </p> <p>@Mamaof2: that is the swallow study we are going to do </p> https://boards.hellobee.com/topic/gi-scope-on-a-4-month-old#post-2818303 Wed, 25 Apr 2018 08:14:25 +0000 MrsADS 2818303@https://boards.hellobee.com/ <p>@starchild I would do the swallow study (barium - upper GI series first) and then you can do the scope a little later if necessary. Our ped GI (who is great - I really trust him) said we would do it if needed and if no improvement on the increased PPI dose. But I am pretty sure with an infant with severe reflux, it is a slightly more involved procedure - i.e. not just mild sedation as for an adult, likely general anesthesia and intubation. Which, obviously, you don't want to do unless you have to, but if you have to, you have to. I am curious if we had had it done what it would have shown - I wonder if he had a lot of damage to his esophagus due to the constant uncontrolled reflux. </p> https://boards.hellobee.com/topic/gi-scope-on-a-4-month-old#post-2818301 Wed, 25 Apr 2018 08:08:29 +0000 Mamaof2 2818301@https://boards.hellobee.com/ <p>@starchild: ours wasn't as severe but our GI had DS swallow barium and tracked it that way to see what was really going on - is that an option? </p> https://boards.hellobee.com/topic/gi-scope-on-a-4-month-old#post-2818293 Wed, 25 Apr 2018 07:11:56 +0000 starchild 2818293@https://boards.hellobee.com/ <p>@MrsADS: not close but thank you! </p> <p>@gotkimchi: that’s an option. She’ll be five months on 5/10 and it should take a few weeks to arrange the swallow study and hopefully this genetic test so maybe we can ask to do it last and push it off till 6 months. Obviously I want to know if something else is wrong so I do see the value it’s just scary to think about anesthetizing my little one. </p> https://boards.hellobee.com/topic/gi-scope-on-a-4-month-old#post-2818267 Tue, 24 Apr 2018 20:24:15 +0000 gotkimchi 2818267@https://boards.hellobee.com/ <p>@starchild: I’m so sorry you’re dealing with this! I feel like a scope is reasonable given the severity however I also understand not wanting to do it to such a young baby. Could you put it off a little and schedule it for 6-8mo old? </p> https://boards.hellobee.com/topic/gi-scope-on-a-4-month-old#post-2818264 Tue, 24 Apr 2018 20:07:42 +0000 MrsADS 2818264@https://boards.hellobee.com/ <p>@starchild we live in Florida... if you live close I'll send you the name of our GI! I think the higher dosage is key. </p> https://boards.hellobee.com/topic/gi-scope-on-a-4-month-old#post-2818261 Tue, 24 Apr 2018 20:00:03 +0000 starchild 2818261@https://boards.hellobee.com/ <p>@MrsADS: I'm going to ask about that test, thank you! I've never heard of it, but that would make a lot of sense. And I've had a similar test recommended to me related to metabolizing medicine so I wonder if it could be. Sorry to hear your little guy went through that, it's so hard. My girl is on Neocate. The Marci dosed Prilosec was our miracle. She went from never unclenching her fists in constant pain to a smiling giggly happy girl. I wish we could find a ped GI who would hear us. The first one we drove 4 hours to go to and she said it was colic and to just follow up if needed. So we got this GI as a second opinion 2 hours away, and I'm disappointed that he is against Marci dosing. I've researched thoroughly and think that the risk and pain of uncontrolled reflux is greater than the potential side effects of a high dose. </p> https://boards.hellobee.com/topic/gi-scope-on-a-4-month-old#post-2818253 Tue, 24 Apr 2018 18:41:31 +0000 MrsADS 2818253@https://boards.hellobee.com/ <p>@starchild your experience sounds very similar to ours. At that age, my son was doing very badly and we were seeing 2 pediatric GIs. I was still breastfeeding him and eating basically nothing because he refused to drink Neocate or Elecare. Nexium wasn't working. The second GI suggested a scope but we ended up not doing it. We did do an upper GI x-ray series twice which showed severe reflux (of course) but nothing else, really. We also had several ER visits and a week in the hospital when he was a newborn.</p> <p>So, our pediatric GI recommended a blood test called a CYP2C19 genotype testing. Basically, certain people metabolize certain drugs differently and there are blood tests for certain medications that can analyze whether someone is regular metabolizer, slow metabolizer, or ultra-rapid metabolizer of certain drugs. </p> <p>The CYP2C19 test was actually developed to test the metabolization of clopidogril (Plavix), a blood thinner, but apparently the same genome also predicts how someone metabolizes PPI drugs (i.e. Nexium, Prevacid, etc.). </p> <p>This is a relatively new test but our insurance did cover it. It showed that our son was an ultra-rapid metabolizer of the drugs in this "family", including PPI drugs. Based on this test result, our pediatric GI felt comfortable and justified drastically increasing his Nexium dose to 20mg twice per day (almost an adult dose). </p> <p>This did show some improvement and I think is maybe similar to Marci dosing - I did some research on that but don't remember exactly what that dosing was. Unfortunately all I can tell you is it did slowly get better with time, as did my son's food intolerances, bloody and mucusy stool, etc. but it took a long time. I would say he was 11-12 months before we began to see a slight improvement with reflux (this was on a high dose of Nexium). By 16 months there was a lot of improvement.</p> <p>At 16 months, I was able to reintroduce dairy and soy successfully (I tried soy at 12 months and failed). Now my son is 2.5 and drinks lactose free milk and has outgrown his MSPI and we have him off Nexium as of about a month ago, which is a MIRACLE. He can't have a lot of straight dairy now, and when he's sick he gets nasty mucus poops again, but it's still amazing. </p> <p>I know your pain and what you are going through, and let me just say - I know how hard it is. So many people have babies who deal with a little reflux, but what we are dealing with is a TOTALLY DIFFERENT ANIMAL. It was a nightmare for us. I pray you will find some relief soon.</p> <p>Edited to add: for us, the key was finding an excellent, understanding pediatric GI doctor. Our ped GI is so kind and understanding and also super up to date on the latest research and testing. I always felt like he "heard" us and was not minimizing our concerns. If you do not have that, I would suggest researching pediatric GIs in your area or even close to your area and traveling. We saw another pediatric GI who was terrible. </p> https://boards.hellobee.com/topic/gi-scope-on-a-4-month-old#post-2818250 Tue, 24 Apr 2018 18:23:51 +0000 starchild 2818250@https://boards.hellobee.com/ <p>I’m really torn and need some unbiased opinions. My baby has severe GERD (acid reflux) and milk/soy protein intolerance. She is 4.5 months old, and thankfully she is growing on her curve. She has been to two pediatric gastroenterologists and failed 4 specialty formulas, not counting her refusal to breastfeed or “regular” formulas. Zantac did not work for her. She used to scream for hours on end until she went hoarse. She is now on Prilosec, and regular dosing did not help her either. We tried doubling the dose, and that helped but not enough so we researched and do something called Marci dosing, which is a triple dose based on research from the Midwestern Acid Reflux Children’s Institute. She has aspirated and frequently chokes and coughs on her reflux. She has mucus and occult blood in her stool, even though she is exclusively eating a “medical food” elemental formula. I suspect she had Sandifer’s which resolved with Marci dosing, and it took so long to get into see a doctor that I didn’t bother asking about it. We have been referred for a swallow study, which is fine, but the GI doc also wants to scope her esophagus and the end of her intestine. She would need to go under light general anesthesia. Her pediatrician is OK with Marci dosing, but the GI doc was not. He suggested the scope to “justify” the high dosing. In a facebook support group, people are telling me that it would be rare for ulcers or eosinophils to show up at her age, and some have experienced the test coming back negative and then their GI docs essentially brushing them off based on that result. I’m nervous that he wants to do it to push for scaling back her meds, which we know will not work for her. I’m also not sure how I feel about putting her under anesthesia. Our ped today said that she is one of the more severe cases he’s ever seen and he’s been practicing for 34 years. He suggested that we do it, and I do want to know if they find anything obviously. My husband is equally unsure whether or not to do it. What do you think? </p>