What is the deal with these doctors???

[Anonymous]

This is more of a rant than anything else…

I don’t know how so many of you are finding doctors that will prescribe the doses of PPIs that agree with the MARCI website. We have been to two pediatricians and two pediatric GI specialists and none of them have come close to the doses that are recommended.

First ped was useless. Gave us 0.7ml of Zantac twice daily. Barely took the edge off. He was convinced that Tess was “just a fusy baby” and couldn’t have reflux because she didn’t spit up and was gaining weight. He even went so far as to say that since her symptoms didn’t go away with the Zantac that that proved she didn’t have reflux.

Next ped was much better. Definitely agreed we were dealing with reflux and upped her dose of Zantac to 1.1ml twice daily. We saw significant improvement with that but still had issues.

Saw specialist #1. Completely useless. He thought our Zantac dose was fine, didn’t even mention PPIs, told us we should continue as is for another month (!) and then come back. Yeah, I don’t think so.

Went back to ped #2 who agreed to let us try Prevacid. He gave us a dose of 12mg once a day and took her off the Zantac. After 10 days things were worse than with the Zantac. I called to ask about increasing her dose (MARCI site said she should be at 8mg three times a day) but he said this was the right dose for her weight. I asked about using the Zantac with the Prevacid and he didn’t like that at all. He said if we wanted to go back to the Zantac we could do 1.1mg three times daily.

We took matters into our own hands while waiting to see specialist #2 and added Zantac back into the mix – 1.1ml of Zantac morning and night, 12mg of Prevacid midday. Things improved and might almost be considered “normal”. Sleep issues remained but we figured that was more due to habit than reflux.

Saw specialist #2. Told him about using Zantac together with Prevacid. Big mistake! I thought they were going to call CPS on me right there! He acted like I was going to kill my child with so much medication. Said that the dose of Prevacid was fine. Gave me a new script for Prilosec at 5mg twice a day (MARCI site says we need 7mg three times daily). Told me not to use the Prevacid or Zantac anymore.

So far we haven’t even bothered to fill the new script. We’re doing 3 doses of Zantac daily (1.1mg) and that’s it. Things seem to be better so I don’t know if the Zantac is working or if she’s just outgrowing the reflux. We’re grateful that we seem to be through the worst of this but man! I just don’t get it! I have to admit that I have a very hard time being pushy/confrontational with people. I had printed out the MARCI stuff when I saw this last specialist but when things were already getting heated and I was only talking to the nurse (she kept commenting that Tess was gaining weight and not spitting up ) I lost my courage to shove the papers in their faces.

I really like our new pediatrician – he was helpful up until the end – so I didn’t want to switch docs again. I think we just ran up against the limit of his knowledge about reflux meds and that’s fine. But why aren’t the specialists any better??? This last guy lists GERD at the top of his ‘areas of interest’ on their website. Whatever. At this point we’re not going to bother trying yet another specialist as, thankfully, we don’t seem to need one. Besides, it seems I can get much better info on his board.

Thanks for letting me vent.

Karen

[Anonymous]

Karen I definately hear you. We are having a problem with Elijah’s drs
and for the past few years I have been having to teach my Dr’s things,
almost diagnosing myself!

To be short, I had LES spasms that would not quit. I told every Dr,
nurse I saw that I knew it was my LES. No one listened and kept telling
me it was my dx of fibromyalgia. I’ve known fibro face to face for 5
yera snow nad KNOW it was not that. After 3 days in the hospital
without adequate pain relief, I had to yell “WHAT EVER HAPPENED TO
LISTENING TO THE PATIENT?”

They sent a G.I. Dr (with a few nurse back-ups LOL) and he dx’d LES
stricture..wrinkiling of the LES and pills, food was getting stuck in
it. He did a scope, dilated it and I came home Thanksgiving eve.

I did have one more problem with it Thanksgiving Day, but I called a
few people to pray with and for me and right while I was praying with
the second person a warmth spread through my back, to the LES and it
completely resolved itself!

I should have prayed in the first place 🙂

I guess there’s a time for everything.

[Anonymous]

I think to some extent you have to work with the doctors you have. Try the things they want to you try. Obviously, if those things don’t help – keep calling them back. I know it’s frustrating but I think overall most doctors aren’t prescribing the high PPI doses right away, they wish to try their own ideas and then if those don’t work they go higher.

Hang in there!

[Anonymous]

Many Dr’s don’t seem to like educated patients, or patients who ask for things.

Some have ego’s that will not allow them to listen, ponder and maybe agree to try whatever it is we are asking.

I am not always convinced that even I am right, and I will listen and
consider what they say. Being a RN and knowing anatomy and in
particular, my anatomy I always try to figure out what is happening to
me before I go tot he Dr’s and let them make an educated guess that may
or may not be right.

When I was having the LES spasms, all the Dr’s tested me for gall
bladder problems. With the first Dr, I thought, could be, I did have a
fatty meal once before one of the attacks started.

The tests were negative, but still no one would listen to me. They
seven sent in s general surgeon who came and wuickly poked my abdomen,
said ‘Good” and went to leave.

Hello, what’s good?

Oh it’s your fibromyalgia.

It’s my LES, do you do LES’s?

No

I was so sick I could not even advocate for myself most of the time I was there.

Elijah’s Grammy2006-4-30 16:38:3

[Anonymous]

keep in mind that the MARCI website is just one group of people that have done research—-they are not the authorities on the subject of gerd. many babies have done very well on the higher doses that they recommend, but some docs won’t prescribe higher than 15mgs without further testing. we could have medicated sylvia to the stars and her reflux would not have improved because she had a physical abnormality that had to be corrected. the MARCI website has a lot of good info and good people contributing, but don’t judge all doctors negatively that don’t follow it. maybe eventually all docs will prescribe higher doses, but until then, it is a good idea to try and work with the docs that are available—and change if you are getting no help.

[Anonymous]

Christine, I have a problem with Drs in general unless they are the
type who will listen and discuss an issue intelligently with me.

I understand that MARCI is just one place with there own studies and conclusions.

It looks like the “standard of care” for possible pedi reflux goes in stages.

First, try thickened formula, then change formulas, then give zantac,
when that doesn’t work change to pepcid and give reglan, then have a
barium swallow which dosn’t always show the reflux if they are not
refluxing at the moment.

So it has been 6 months of going back and forth to the PEDI who finally after 5 sent him to the Pedi GI.

[Anonymous]

I guess in a way I’m glad to see this posting…I have been wondering what is up with my doctors for a while. My 3month old DD was miserable starting at 2 weeks old and my ped would only prescribe zantac (which only took the edge off). The GI specialist we saw wouldn’t do anything until she had an endoscopy….but she got a cold right before the procedure and they wouldn’t do it…so I finally said look, i cannot deal with this for another 5-6 weeks until we can do this procedure. So he prescribed prevacid which immediately helped….but now I think her dosage needs to be adjusted and he won’t do THAT until she has her endoscopy (and wouldn’t you know it, she has a cold again)….so I’m with all of you struggling with your doctors…

[Anonymous]

We (Amber, Elijah’s mom and I) saw Elijah’s pedi and pedi GI within 5
days of each other last week as his symptoms were getting worse.

The pedi, who we saw almost weekly for GERD since Elijah was 2 months
old, also thought that since Elijah didn’t spit up much breast milk
or formula and he was gaining weight like gangbusters, thought it
couldn’t be too bad.

She gave Zantac, adjusted the dose a few times, then pepcid but told us that PPI’s are only given to babies over 6 months old.

When he was 6 months old, she still would not prescribe a PPI but set
aElijah up for an appointment with a pedi GI, 2 months away.

The pedi GI finally prescribed Prilosec and failed to tell us that it
could take weeks to start working but did not want him to have pepcid
too. He was miserable and in a lot of pain screaming for hours.

After a week mom did start to give him pepcid 4 hours after the Prilosec but the kid was still miserable most of the time.

With Ambers permission, a week before we were to see the pedi GI, I
wrote a somewhat professional letter telling her what we wanted her to
do for Elijah and I faxed that with the MARCI information.

I was nervous thinking she might pull the “I’m a a Dr you can’t teach me anything”

In the end she did change the PPI to Prevacid Solutab like we asked and
thanked me for the MARCI information. She did not however follow the
MARCI guidlines.

She mentioned that new reasearch shows that using H2’s (Pepcid, Zantac)
for breakthrough acid attacks did not work, although I have heard many
hear say it did help.

Then she said her husband has bad GERD and he always needs to take
twice the amount of PPI to get relief. So when Nexium didn’t work for
him in the one dose that it advertises, she decided not to prescribe it
at all.

So she used her husbands experience with PPI’s to treat babies by not
prescribing Nexium, yet she would not accept the experience of Dr’s in
her own specialty and mothers all over the country? Hmmm

I wish I thought of calling her on it while we were at her office.
Elijah’s next appointment is in 2 months but she said to call if there
are any problems. So maybe I will use her own words against her if she
refuses to an increase if Elijah needs it.

The crazy thing is that she said she knew that higher doses of PPI’s were OK but she doesn’t like to over medicate babies

HUH?

No, lets just make him suffer for over 6 months.

He’s doing great now, except at night, but we might try Gaviscon at
night as it advertises that it creates a foam barrier that helps
protect the esophagus and prevents acid from refluxing.

It has the same ingredients as Mylanta but has something like sodium
alginate (which I think might be derived from seaweed/algae but that’s
just a guess)

It’s kind of expensive though, over $10.00 a bottle so we haven’t bought any yet.

I’m so sorry you are having problems with Dr’s. Maybe next time fax or
mail in the info before the visit asking he/she to read it before your
next appointment

I faxed the info to her office in Boston and it was in Elijah’s record when she came down to Dartmouth.

I think I will also fax the info to the Pedi suggesting maybe she ought
to really look into the PPI’s for babies with reflux so they don’t have
to suffer like Elijah did.

Of course, Elijah was always the perfect gentlman at every visit so the
pedi never saw the screaming in pain or heard the acid reflux etc.

Dr’s and nurses are taught to listen to their patient and since
Elijah can’t speak, the adults in his life have to, so why don’t they
listen to the moms/dads/grandparents? Maybe it’s because too many of
them don’t listen to their own patients anyway.

I fixed that with my primary by emailing the boss of the practice with
my complaints.My primary was REALLY nice to me the next time I saw him
and THANKED me for coming back. No more attitude!

Has anyone ever “interviewed” other pedi’s to see if they would consider prescribing adequate meds and dosages?

I’ve always read that you can get a 15 minute free interview with any
Dr to see if you and the Dr have the same “philosophy.”

[Anonymous]

For momtotess,

I understand your frustration. We are responsible for our kids and when they are in need of meds that have to be prescribed we have to leave it in the hands of the doctors. I am frustrated with my pediatrician too. Adam had the barium swallow test and the doctor doing the test said he definatly had reflux. The respiratologist who ordered the exam is on holiday and will be back june 8th. So I decided to go to Adam’s pediatrician. I was sure he would call the hospital & ask for the test results and prescribe the meds himself. Instead he said no and he would rather the other doctor take care of it. He is convinced that his problem is just asthma. He made me think that he thinks I am crazy. Althought june 8th seems years away – really it is only next week. When I read your text I felt like I wrote it. Nobody ever thought reflux because he looks healthy and does not spit up. He is 14 months now and all of this really began last october when he was 7 months. He has been hodspitalized 4 times for asthma, uncontrolled wheezing. The last hospital stay was in march and we stayed 6 nights at the montreal childrens hospital. That is where I met the respiratologist and I think I moght even ask her if she can reffer me to another pediatricina. The one I have was mine and even my fathers – maybe he has done his time. So many times he has misdiagnosed my 2 boys – what is the point of having a convinient pediatrician (not having to wait at a walk in clinic) when I am going to go consult another doctor at a clinic and probably wait 3 hrs to see a doctor anyway! I hear your frustration and I know when my child is sick, I now when he has an ear infection and I can diagnose him better that anyone else sometime! So give me a prescription pad and let us write our own prescriptions! Well, ok that was probably over the top but I totally understand you! I am so happy to have read your text!

[Anonymous]

[QUOTE=Elijah’s Grammy] Many Dr’s don’t seem to like educated patients, or patients who ask for things.

AMEN!!!! In ALL specialties!

[Author]

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