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Forum: FTT and Weight Gain Issues

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  #1  
February 12th, 2011, 01:48 PM
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How is Carly doing? Is she growing yet? Have you gotten your nightmare of a ped straightened out yet? I hope things are going a lot better for you!
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  #2  
February 13th, 2011, 01:46 PM
daysfancarlymanning's Avatar Super Mommy
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thanks for checking. I was actually going to post. We did get a 2nd opinion and ped said no ftt. She is growing and weighs 8 lbs 1 oz now. I am trying to switch peds but my ins is giving me issues and Carly has BAD reflux(projectile vomitting now) and we were admitted(again at ped's insistent with cps threat) to John's Hopkins 2 weeks ago. The ped said they would do a gi workup, which they never did. Her weight gain is due to reflux I believe and yes she's been diagnosed with reflux but given zantac, which doesn't work and never worked for my other 3 refluxers. She threw up last week and it had blood in it. I freaked out. Called ped. No return call. Called again and they gave me the head ped there whom I HATE and started the whole cps mess. She told me she's fine but if it happens again take her back to hopkins because the local hospital didn't have the ped gi dept there but they would transfer her to hopkins if necessary. Well I took her to urgent care and was FURIATED with my ped and the entire office. Urgent care said the blood was from an irritated esophogus but that she may have an intestinal blockage so yes hopkins if it happened again. hankfully it didn't but they said follow up with my ped in the am, which I did. I walked into the office and get this one...my ped refused to see me. In walks another one, whom I don't hate, but don't love, and he goes Karen's taking a break today because you're causing her to have a nervous breakdown. She's not removing herself from your case totally but she needs a break. I was flabberghasted and pissed. Here they were bringing me in DAILY for weight checks, insisting TWICE we go inpatient and disrupt myself and my other kids lives and I call a few times that week and then come in at the sight of blood and I'm causing the ped a nervous breakdown? REALLY professional! I nearly blew a gasket. So Dr S goes onto say she has reflux, nothing more they can do. I asked if Karen had called the ped gi to move up carly's appt, like they said they would. Nope. We're drs. We can't move mountains was his response. I moved a mountain. Called and told the ped gi she vomitted with blood. We go in tuesday morning. THANK YOU! So I had to call back for a referral and I signed a realease for all my kids medical records just in case they decided to call cps for me causing Karen a nervous breakdown. Now they're po'd at me. Unfortunately I cannot afford to be discharged right now cuz I need them to see the ped gi and my kids are registering for kindergarten and my yds needs an eval for his hearing(possible tubes). Plus to switch my insurance is a B with apparently. So I'm stuck but if they fire me over the records I'm screwed. I called back and said forget the records. When they ask why I'm telling them I asked cuz I wanted records should they have called cps. I don't believe they have yet. Has anyone else's ped on her called cps for their baby's ftt? Apparently I've been told they have to or they can be held liable. Just wondering. So I also cancelled dd's appt cuz Karen wouldn't see us that afternoon and according to my friend who's on the office staff, she said Karen came out and acted concerned because she knows I have ppd and wanted to know how I was after Dr S told me she wouldn't see us that day. BS! She's so fake and phony and I hate this. I feel stuck between a rock and a hard place here. We've been patients there for over 4 yrs now, never any issues. Thankfully carly's doing great, except the reflux and I hope we get some answers. Anyone else ever call their ped for BIG issues, not little questions, and don't get returned phone calls? This was the 4th time I had called in 6 weeks over something important and she never returned my call. Some I could forgive and say ok whatever but my dad told me he would never not return a phone call. Very unprofessional.
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  #3  
February 13th, 2011, 06:26 PM
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She is rediculous. What is your insurance saying about you changing peds? I have had a doctor tell me my son's bleeding daiper rash was from using too much ointment...that is as close as it gets to not getting a call back, but needless to say he was just to get a referral then on to a different ped. I really hope you can get her to see a new ped. I would call the insurance company and tell them what is going on. See if they will let you switch peds then. This is absolutely rediculous. See if the GI can move her up to prevacid. Danny had the vomitting that caused him to scream in pain...never bleed, just scream in pain but still. We switched to prevacid and he didn't scream anymore. Still puked everywhere but it didn't hurt him anymore...
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  #4  
February 13th, 2011, 11:18 PM
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thanks that's what I'm trying for. My other 3 refluxers were on prevacid and it did wonders. Ped's deferring to gi dr and won't give it though.
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  #5  
February 14th, 2011, 06:59 AM
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I'm sorry you're dealing with that. I'm in shock that a doctor would behave that way. I'd wait and talk to gastro. They are the experts.

I know Ava is different, but her ped's main job is to field all her specialists and follow their recommendations.

If prevacid doesn't work, maybe protonix? It works well for Ava.
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  #6  
February 14th, 2011, 07:44 AM
daysfancarlymanning's Avatar Super Mommy
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thx what is protonix? never heard that one before. yes my ped shocked me too and i no longer trust her but i need the referral right now for gi so im stuck for now. cant wait to see gi dr tomorrow though.
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  #7  
February 14th, 2011, 01:29 PM
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Protonix is a stronger GERD medication. I know of quite a few children who have success with it.
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  #8  
February 14th, 2011, 01:41 PM
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thank you. I'm taking that name with me tomorrow to the ped gi. Is your dd just a reflux lo or does she have other issues? Sorry I'm new to this board and don't know everyone's story She sure is cute though
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  #9  
February 14th, 2011, 03:53 PM
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Ava's primary diagnosis is Mitochondrial disease. She's also had airway reconstruction. She honestly has a lot of serious issues and it's a lot to keep up with.

Good luck tomorrow!!
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  #10  
February 14th, 2011, 07:43 PM
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As far as I know...which may be different for your situation...once you already have seen the GI, he can refer you anywhere else you need to go. If you swap peds and they get a referral from the GI, if they have half a brain they will file the referral. Look into that and I hope it helps.
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  #11  
February 15th, 2011, 01:38 AM
daysfancarlymanning's Avatar Super Mommy
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thank you I will. Btw Ped DID call cps. Found out today when they TOLD me. I'm a nervous wreck. NO idea what to expect? Why did they call? Cuz I requested my records and cancelled my older dd's appt. I'm so mad!
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  #12  
February 15th, 2011, 07:02 PM
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From what you told us she has no grounds for an investigation. Did you document that she was cancelling appointments and not returning serious phone calls? That is rediculous!!! Carly is growing...no thanks to her...so what does she even think she can complain about? I hate stupid people... Didn't you see the GI today? How did that go? Most of the time they don't do a ton if nothing is obviously wrong. They will require follow-ups on her weight and it will get forwarded to them. I am sorry you have to go through this though...
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