Posted By Posting
Aug 29, 2008
carmarhal
Adoptive mommy to Micah (Feb 2006), Caleb (Mar 2007; 26 wk preemie, subglottic stenosis, BPD, GERD, dysphagia, FTT, in PT, OT, ST, feeding therapy, 30 mg Prevacid daily, mostly pureed foods, shakes & Pediasure) and Ethan (Feb 2008; 28 wk preemie, BPD, GERD, 15 mg Prevacid daily, Similac Sensitive/Alimentum)
Has anyone ever had this doctor?
I've been asking Ethan's pediatrician for months for a referral to the feeding clinic, but he didn't want to do it because "If you don't have a feeding problem when you go in, you'll have one when you leave. They're the hammer, and everything is the nail." Now, I found this mildly amusing since that almost seems to be the case with Caleb. But today I called to ask for a referral to a GI doc because I think he might have DGE, and the nurse called me back and told me that the doc said he wouldn't be surprised if Ethan has some DGE, but there's really not much that can be done about it, and Reglan doesn't work as well as everyone says. So.... he decided to put in a referral for an eval at the feeding clinic! Huh?

This is the same doc who didn't want me giving Ethan Similac Sensitive, even though he drank it much better than he's ever taken any other formula. Supposedly he thought Ethan might have a milk allergy, so he wanted him on Nutramigen or Alimentum or back on Enfacare 22 cal. Ethan has no symptoms of milk allergy, but I digress, that was a different post a week or so ago! Is this doc just annoyed with my trying to diagnose my child? How can he deny Ethan the chance to be seen by a specialist on the off-chance that he might be prescribed a drug the doc doesn't like? I'm very frustrated right now!
Aug 29, 2008
elysabethsmom
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
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In our case, reglan (or similar drugs) did nothing to help DGE, so we finally took her off of it. maybe the dr recalls that you have been asking for months to go to feeding clinic and wants to get you off his back! Also, I have found that Elyse's pedi always seems annoyed by me bringing stuff up about possible issues....so maybe he IS annoyed...Elyse's other drs have always seemed to appreciate my input and knowledge of my child and GI/preemie issues! maybe it's time to go "shopping" for another pedi!
Aug 29, 2008
michelle&aurora
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
I have TOTALLY had that doctor my dear, so I really understand your frustration. My daughter, who had reflux and feeding problems from birth was finally given a feeding eval referal at 14 months, and we saw the pedi every 6 weeks from 6 months of age, with me constantly crying about her feeding issues. I had asked about DGE as a possibility for vomiting and I was told it was extremely rare, so instead she sent Rory for a BRAIN ULTRASOUND because she has big eyes! We've been CF tested, blood, stool, urine tested, upper GI tested, scoped etc., and EVERY single test was because I pleaded with her!!! We have to see her every 6 weeks to follow Rory's weight, but yet she is against 30 cal formula because it's only for "sick" babies.

Honestly though, I think the problem is that pediatricians treat the whole spectrum of diseases and disorders, and while reflux and feeding problems are HORRIBLE to deal with because of the repetitive nature of feeding our gremlins, some doctors see it as a problem that will eventually resolve itself, and because they see VERY sick children I think they become lax with the others. Reflux is tricky because some children "look" healthy and in general, they are, and doctors don't consider that feeding problems are leftovers of an unhealthy, or painful start. You MUST be persistent, and/or find a doc you are comfortable with. I'm not very comfy with mine actually, but I'm in a smaller community where all the docs are a clique so I wouldn't get far anyway.

In hindsight, all of the tests for Rory, with the exception of the Upper GI, came back normal, so I guess the doctor was correct in assuming there was nothing MORE THAN REFLUX, but I have NO regrets for begging, because it is my peace of mind, and Rory did have delays and behavioral issues with respect to feeding and we are still struggling a bit.

I wish you all the luck in dealing with your doc. Be happy for the eval, and consider it a victory! I hope you get some answers and progress with Ethan. I know how tough it is! HUGS.

Aug 29, 2008
amber f
I agree that maybe looking for a doc who will work with you as a team would be better. They aren't with your kid 24/7 so they should be willing to listen to your thoughts on what could be wrong. Annoyed or not you know your child best he should respect that.
Aug 29, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
The feeding team will probably want to send you to the DI...they will help push to get the referral. That was the case with us. We had a bad GI and they called and ordered a 2nd opinion ASAP. We got in fast too, I have never gotten in that fast...LOL

Reglan does actually work wonders for some kids..wonder why they won't at leat "try" it....hhmmmmm

BTW not to sound harsh against your pedi. but if you want to switch formulas you don't need their permission....

And yes, some Dr do NOT like it when parents educate themselves about their child's issues. Some of them are offended by it. If you feel that is the case, I would try to find another pedi unless for some reason you really like this one.

With GI issues a GREAT pedi will want to send you up to see a GI becasue frankly, they are a pedi NOT a GI and should be able to admit it.

I have a great pedi and she was happy to admit that Jedd needed to see a GI. Even before I asked about it. She told us flat out that GIs are more equipted to dose the meds. and handle GI issues becasue that's where they were trained. If your in the US you can call you local school district and start the ball rolling on an early intervention eval. I would call ASAP. I normally takes a while to get the eval and then start the therapies. Our OT works on feeding right in my house 2x's a week.

We see the feeeding clinic out patient about every 2 months right now. ALL the feeding issues are being worked on by me and the OT. The feeding clinic just monitors the progress being made and makes new suggestions at their visits.

If your insurance will cover it you can even get the pedi. to order up some private speech therapy. We have done that in the past as well. BUT, the ins. co. will only cover that for so long and then they will send you a letter tellign you to get an eval done by early intervention. (It's cheaper for them).

HTH some. HUGS

Aug 29, 2008
mom2halleyann
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
Are you on an HMO that requires you to get a referral? If not, I would just move forward with making an appointment with a Pedi GI. I also think it's time to start looking for another pedi. Good luck!
Aug 29, 2008
mdbarbagallo
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
I think your doctor has a serious case of know-it-allness...like he is the only one who knows a crap about medicine/treating kids. FOLLOW YOUR OWN HEART AND HEAD. And maybe look into a nother pediatrician. That is what I did when my first one asked if I had ever heard of munchausen's.
Aug 29, 2008
ceramom
Sarah
mom to Mila 2-20-2007
and Robby 4-22-2004
Mila is on Peptamen JR 30 cal by NG tube. Open Heart Surgery 2/08/08. Captopril, Zantac, Losec, Lasix.
No doctor here in Canada would prescribe reglan to a baby. NONE. Too many side effects. ( I personally, as an adult, have been on Reglan, and it was so horrible that I list it as an allergy. )

I agree, though, time for a new ped!!

Aug 29, 2008
carmarhal
Adoptive mommy to Micah (Feb 2006), Caleb (Mar 2007; 26 wk preemie, subglottic stenosis, BPD, GERD, dysphagia, FTT, in PT, OT, ST, feeding therapy, 30 mg Prevacid daily, mostly pureed foods, shakes & Pediasure) and Ethan (Feb 2008; 28 wk preemie, BPD, GERD, 15 mg Prevacid daily, Similac Sensitive/Alimentum)
Thanks for the responses. This pedi is very young, and has always been very friendly and helpful in most aspects. He's supposedly a preemie specialist, which is why I haven't just changed Ethan to Caleb's doc, who has been wonderful. I've wanted to keep my kids with their original pediatricians who have been seeing them since birth, since they all have special issues. Unfortunately, that means we have 3 pediatricians for 3 children! And each doc is in a different location!

As far as the formula goes, I'm afraid that even though I don't think Ethan has a milk allergy, if I give him the formula he likes and I'm wrong, and it makes him worse, then I'm a horrible mother! On that score, I'm glad he'll be seen by a dietician at the feeding clinic. If she says he can be on another formula, woo hoo!

I'm also hoping that I can coax a GI referral out of them, now that I know what to ask for. I've read about the side effects of Reglan, and though it did work for Caleb in the past, I would certainly hope that Ethan wouldn't need it, but I know there are also alternatives. Also, there might be something besides DGE wrong with him. How will we know if we can't get him seen by a GI doc?

BTW, until the adoption is finalized he is on Medicaid through the state, and they require referrals for everything! We can't add him to our ins until we finalize. It could potentially take months to finalize, so I don't want to just wait around!
Aug 29, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
As far as I understand ANY child can be seen by a GI as long as you have the referral in place. So if that pedi won't do it maybe th eclinic will for you. You could also switch peds. and get the referral that way. I *think* with medicaid you gonna need a referral.
Check with your
doctor first!