I am devastated

[Anonymous]

I so had my hopes up, as I got into a GI quickly for DS who has reflux (dx from an upper GI and mild delayed gastric emptying). He is on zantac and prilosec and the doses were getting high enough without enough relief that they sent us to a GI. I go to the GI specialisttoday with my husband and son. Doctor came int, did’nt even introduce himself and just fired HIS questions to us. I kept trying to ask and insert something…he’d cut me off with HIS questions. He belittled everything I said and here is what he basically said (I am NOT kidding):

1. Yes, he’s not denying Mason has reflux. However, it isn’t causing health issues. He’s not losing weight (he’s huge) and he’s not having lung problems (i’m guessing this is from aspiration?). So he doesn’t see the need to progress any further. He will grow out of it.

2. He is on so much meds that the arching nad screaming and fussiness (we constantly have to bounce and walk with this child..constant movemet to distract him) must be “attention seeking” (and i quote). My son is 4.5mo old. Attention seeking?

3. I tell him i understand his point about Mason being on so much meds that it shoudl be taking care of the acid, thus it’s not hte acid burning. However, I don’t agree with the attention seeking part. He sat there and stared at me for an uncofortably long time. So i broke hte silence by saying “if it’s not hthe acid and I don’ think its attention seeking…wehre do we go from here?” He said “I can’t help you.”

4. He said he wanted to do a ph probe (put a tube up his nose and hospitalized him for 24 hours-everytime my husband and I think he’s having an episode due to fussiness, we push a button. they run the report to see if our impressions correlate to the acid level in his stomach at the time). he says he bets this will indicate that the meds are controling acid production and the fussiness is due to “behavior.”

Please help me with this one. I DO NOT WANT to put my son through another test. He was hospitalized for being premature and then again at 19days old due to a staph infection. he was in the hospital for 4weeks on intravenous antibiotics. I do not want to torture this kid any more. My husband says we need to do it to rule it out. WHy do a test just to prove a pompous doctor right?

I asked him why he was so sure that it wasn’t allergies. I had allergy shots from teh time i was 6mo. old to 11years old due to milk, corn and egg allergies (i was allergic to eaverything under the sun). This dumbass doctor asked “how were you sure you had allergies?” Ummm. a skin test, jerk head!I grew out of the allergies (except environmental ones) by 11yr old. He said “well, he’s not having any other symptoms to indicate it’s allergies.” I said “like what?” He said “skin rash, blood in stool” etc. My mom told me that i never had any otehr symptoms..i just was extremely fussy.

What the heck do it do? I can’t believe he’s telling me my 4mo old is arching and screaming because of attention or ‘behavior. HELP!

[Anonymous]

Find another GI! I do think there could be some benefit to do the PH probe, so you have answers, and then you could take the results to someone else, but you don’t have to wait for the next appt to start taking steps.

The next thing I would do is ask your Ped (not the GI) to humor you and let you do a Neocate trial. they might have samples in the office, and if not you could get it from a pharmacy or directly from SHS. I do believe that the Enfamil AR could be part of the issue. This sounds like Dylan. Well, he didn’t have a lot of weight on him, but he was just extremely fussy. No blood in stool, no skin rash, etc, just extremely fussy and unhappy. Two weeks on Neocate and we had a new baby!

Hang in there! I am hoping things get better, but this guy sounds like a jerk!

[Anonymous]

I’m so sorry that you had to go through that horrible experience. What dose of Prilosec is he on and is it a flavored compound made by your pharmacy? I’m sorry if I’ve already asked you this before, but I talk to too many people about this to keep track. This could well be the key to his problem. Also, could you give me his current weight?

[Anonymous]

He is on 2.6ml of Prilosec twice daily and 1.6ml of Zantac twice daily. Not sure what you mean about flavored compound. It is a yellow liquid ad it doesn’t smell nearly as foul as the zantac (does that help?). He weighs 18lb14oz. I guess b/c he’s a big boy and gaining weight no one cares that he’s in pain. I have a call in to my ped who is used to humoring me b/c I” a nervous mom, after all we ahve been through. SHe’s out today but will call me tomorrow. Poor doc, she’s going to have to hear about this doc! I’ll ask her about the Neocate. We have an appt with an allergist in two weeks. It’s not he recommended one in my area but it was the soonest we could get in. the other guy has a huge wait (we are on the list). What is this guy going to do for a then 5mo old?

If my son does well on Neocate for 2 week trial…will a ped write a script for it so that insurance will find it medically necessary? See, I worry b/c he’s gaining weight that they won’t see it as med nec. Agh.

[Anonymous]

I am SO sorry that you had such a terrible experience. I can understand and relate to how upsetting it all must have been. As a parent its so hard to live day to day with a distressed child and your so hoping and praying that a doctor – especially a specialist will be able to relieve you of some worry and take control of the situation for you. That is absolutely rediculous that he would suggest a. your child was trying to get attention and that b. you weren’t smart enough to decipher the difference!!! You should write a complaint letter never mind get a new PediGI. If your pedi recommended him I would make sure I passed on that you were EXTREMELY dissatified.

I’ll never forget how alone and frustrated I felt after seeing the GI specialist for the first time when Sophia was 6 months. In the long run it was a good experience because it was such a slap in the face that I realized that I was the one who had to be the advocate for my child and that no one not even a specialist was going to go the extra mile for her.

By the time the specialist was done treating me like one of the herd he had upped my daughters Prevacid, ordered an upper GI with a follow up probe if necessary. I was disgusted. . .the visit was a whole 20 minutes and he didn’t confirm or get into any of my concerns. My daughters issues were extreme irritability, some digestive irregularity, gassiness in the early months, a total and complete inability to lay down flat, back arching, projectile vomiting, no ability to self soothe at night (she slept on me for the first four months and then in a swing on HIGH for another three months), and constant night wakings (8-12Xs a night). The pedi gi said that the night wakings and extreme irritability weren’t typical of correctly treated reflux but he also discounted my questioning allergies. He said she’ll grow out of it all and bye bye. I waited two months to get in and three hours for that appt!!!!

Well you know what, she did grow out of it but we went through a lot of pain and suffering before that happened. It makes me so mad still when I think of all of the times I questioned doctors along the way and how none of them thought to examine all of the factors involved never mind consider our family unit as a whole. If I were you, I would go with my mothers instinct .. .thats what I did and it has never lead me astray. Despite my hubby’s wanting to, I did not agree to any testing. I also found a better pediatrician who was willing to work with me on the meds side of things and was also willing to examine other factors that were contributing to Sophia’s reflux and night wakings. I never went back to the GI again and have never felt bad about it.

The change wasn’t a quick fix but it did lead me to self-diagnosing Sophia with MSPI which lo and behold was the issue in the end. She stopped being irritable as much and the night wakings decreased dramatically once her diet was regulated. Shes been off meds since 18 months. You need someone in the medical profession that will work with you not lecture you. Your where the buck stops with your child and don’t feel bad about saying so. I would be leary of never testing if you’ve got known DGE going on but you know if hes symptomatic of that or not so its a call you need to make.. . if your uncomfortable with it, leave it as a possibility and find someone else who will have a respectful opinion on the matter. .. not just a general diagnosis like that yahoo you saw.

Have you ever tried omitting milk/soy from Mason’s diet? How bout pushing your pedi to refer you to a good allergist? As you can see by my dd’s symptoms they weren’t typical of MSPI but it was the case in the end. Even though its not the most popular route – I say always go the least invasive route first and then do testing when its absolutely necessary. Just because a pediGI who sees it as common place suggests testing doesn’t mean its absolutely necessary.

Big hugs. .. its gets better I promise.

~Liz

lovemysophia2006-2-1 13:58:21

[Anonymous]

Sorry – was firing off my l o n g drawn out thing when you posted and said your were doing all of the things I had pretty much suggested. Take heart, its just par for the course to get a few bad eggs in the medical profession .. it gets me fired up , can you tell.

~liz

[Anonymous]

I do agree with Ann Marie, find yourself a new Peds GI but before you go to another one since it typically does take a long time to get into one, get the PH probe done so you have some answers and you can bring the results to the new MD. When we bought Alexis to the Peds GI she was gainning weight fine, didn’t even spit up, and Upper GI showed everything was normal, but given her history of fighting bottles, not sleeping, arching the GI did agree to the reflux and started her on PPIs. We never did the PH probe since he believed she didn’t need it, but I truly wished we did to see the serverity of her reflux. I rather know what we were dealing with than the unknown.

[Anonymous]

Getting the pH probe done might actually strengthen your case in trying to get Neocate covered and also an increase in his PPI dose.

Many doctors (even Ped GIs) are not aware that infants metabolize PPIs like Prilosec as much as 3 times faster than adults, and that as a result they often need much higher and more frequent doses. They also rarely know just how safe these drugs are – they have virtually no side-effects and they can be safely dose in infants at quite high levels.

At your son’s age/weight, Dr Phillips here at the University of Missouri would recommend that he be given 10 mg of omeprazole three times a day, for a total of 30 mg. I’m not sure what the concentration of the compound that you are currently giving him is, but it is probably about 2mg/mL, and at that concentration, 2.6 mL twice a day comes to about 10 mg per day – about 1/3 of what Dr Phillips would recommend.
Also, the compounds of PPIs made by pharmacies are very often unreliable and unstable. We have proven this in our own laboratory testing here at the University of Missouri. The main thing that causes them to become unstable is when a flavoring is added. If you decide to continue using the compounded omeprazole, you should ask that they make it with no flavoring and that they make it with 16.8% sodium bicarbonate as the buffer.

What I would recommend even more that this would be that you try to get a prescription for Zegerid 20 mg packets from your doctor. Zegerid is a flavored, immediate-release form of omeprazole that makes a true liquid suspension that is reliably stable in the refrigerator for up to 21 days. If you have more questions about Zegerid, feel free to email me: [email protected]

One more thing, just in case you don’t already know this…You should never give the Zantac dose within 4 hours of a PPI like omeprazole as it will interfere with it make it less effective.

Please let me know if you have any questions! I hope things start getting better very soon!

[Anonymous]

We did get it covered by insurance even though Dylan was gaining weight. Our ped wrote the letter of medical necessity and we had it covered till over a year. At one point we did have to fight them a little, but it was still covered. There are laws in the state of CT that helped us as they were REQUIRED to cover it, so I would check the laws in the state that you are in.

Hang in there! You are doing a great job and you will get through this!

Ann Marie

[Anonymous]

Heres an excerpt from http://www.disa.com.au, click on “food intolerant baby” in the left hand column to see the full scope of info. But as you can see. . .its hard to pin point food intolerances and the symptoms range greatly. Either way it wouldn’t hurt to push for neocate stating that after a trial you will consider testing for the next move. .. . at Masons age you should know the effects within three weeks or so.

Research is indicating that food intolerance, more specifically protein intolerance, plays a major role in infant distress. Please note that we at DISA have yet to find a child that exhibits all of the symptoms below. In the infants we at DISA have come into contact with, generally only on or two symptoms where displayed. Generally the infant presents as simply fussy, colicky or symptomatic of reflux.

Symptoms of food intolerance may include:
Aggravation of reflux
Wind
Reflux
Vomiting
Colic
Discomfort
Irritability
Obstructive nasal symptoms / blocked nose
Loose stools, mucus in stools
Constipation, or struggling to pass bowel motions.
Disturbance of sleep due to discomfort
Distress
Rashes

[Anonymous]

What a stupid ped gi!!!!! He was so out of line. I am so sorry that he was your first experience of a ped gi. There are really some great ones out there! As for the ph probe it may help your case out with this dumb guy!

[Anonymous]

hi there—sorry you got one of “those” doctors. just from my personal experience, i would go with the ph probe, but i would also request that an endoscopy be done. my daughter was on prevacid and carafate and she still ended up with an ulcerated esophagus and had a funoplication and hiatal hernia repair at almost 10 months old. sylvia is more of the expeption, rather than the rule when it comes to reflux, but it shows that your doc is wrong if he thinks that enough meds will always take care of the problem. there are other possible problems. i don’t know if you will get alot of info from an allergist at that young of an age, but if you have an endo done, they will be able to see if your son has any “allergic cells” also know as eosinophils. neocate is worth a shot as it has helped alot of babies. also, prevacid seems to work better for a lot of people for some reason. some kids do great with prilosec for awhile, but eventually move on to prevacid. i have learned in the last couple of years that mothers have to be detectives sometimes to get a diagnosis and proper treatment for their children.

[Anonymous]

I’m so sorry to hear that your doc was such an ***!!! I too would do the tests- not to see if it’s behavioural (like your doc suggested), but to see how severe the reflux is and to make sure that his esophagus isn’t ulcerated (you’ll need to get a scope done for that, like Christine mentioned). I know how awful it is to wait so long for these appointments only to be dismissed by these idiot doctors who think they know everything, and tell you that everything is behavioural. My docs have also been suggesting that Hailey can’t be in pain because she’s on a high dose of losec, which is why I’m now waiting to see a new doc. I think sometimes (most times) we are actually the “experts” on this topic and know more than the docs. That being said, it’s so annoying how you have to stroke their egos and pretend like you’re the idiot and they’re g-d. I would find a new doctor for your little one as soon as you can. Hang in there!!

[hellbennt]

hi there,

everyone gave you words of encouragement– I’m going to give you info to help you in the here & now (as you wait for another ped Gi appt & wait for the ph probe etc)

**going and getting your PPI re-compounded by specifically telling your doctor (you ped to humour you) how to write for it to be compounded:How to ASK for PPIs to be Compounded (condensed version): https://www.infantreflux.org/forum/forum_posts.asp?TID=4505

**how to go about getting neocate covered by insurance:Going to the Top (fighting insurance & more): https://www.infantreflux.org/forum/forum_posts.asp?TID=2607&a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;KW=going

** how to figure out the ‘proper’ dose of zantac – you can give this along w/ the PPI, only make sure it’s given at least 2 hrs (or more) seperate from the PPI: https://www.infantreflux.org/forum/forum_posts.asp?TID=1000

Again, these are all ‘short term’ solutions until you can find a doctor to help you with a long term plan. I agree w/ Christine that it’s important to look at all the pieces of the puzzle- but until then, you certainly can do your best to help make your baby comfortable.

Also, you can call your local children’s hospital and ask for the ped GI nurse and ask them if they have any samples of neocate- I’ve read that sometimes they have cans that are just about to expire or have just expired that they might give out- again, you can ask your ped to humour you and have his nurse call for you…

I hope we’ve all helped you!!!!!!!!!!!!!!!! It’s NOT YOU. IT’s that DR

~laura

[Anonymous]

Thank you all so much. I called Children’s Hospital of Philadelphia (an hours drive for us) and have an appt there with a GI March 16th. I have asked to be put on their cancellation list, too.

Can I ask you all a question? Of course we know this doc is an idiot and are dismissing him. However, being a first time parent, sometimes I feel lost and when you have doctors telling you contradictory things, it makes me secon dguess myself. With that in mind, I do know that in the end i have to trust my gut. and i will which is why i am going from appointment to appointment. (BTW, we are seeing eye specialists due to a vision delay and i am going to a dev ped to rule out things b/c he has motor delays and is in early intervention..so add this to the GI appt and allergists…this is why i freaked out and had a break down right outside the GI’s office when we leftT My poor husband…glad he was there!). SO that is a little bit to give you back ground on me constantly questioning myself.

Here are my questions: Do normal babies arch when they cry for attention (to be picked up, their bored, want to be moved, etc?) or do they just cry? DS’ legs stiffen he’ll arch off the floor or in our arms. Not so much around feedings (that used to be before meds), although daycare reported today that TWICE he kept arching back and refusing bottles. WHen he cries he looks like he is in pain. He’s started taking his fists and biting down on tehm hard (he doesn’t have any teeth yet). I don’t think I have a difficult disposition kid…but i definitely have a fussy kid. EVERYONE besides me notices it. My friends kids aren’t nearly as fussy. WIth Mason, if we don’t keep moving, walking, standing, bouncing him on our knee…he fusses. What’s that all about? IS it reflux or something else…or normal baby stuff? I mean he’s past the age of “colic.” My mom took care of him and said she had to hold him 90% of the time or he’d fuss. But my gut tells me that we are distracting him from something..not that he’s “high maintainence”…you know what I mean??

Can you describe your little ones and their behaviors. IF you have more than one child, what is ‘normal baby behavior” (nonreflux kids)in regards to fussiness?

[Author]

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