Alright GERD moms, I've been contacted by The Doctors...they're doing a show on reflux in babies and are looking for moms who would be willing to appear on the show. Anyone who is interested can pm Leigh or myself with your email addy! Get on it gals, they're looking immediately!

That's awesome!

WOO HOO! This is a HUGE chance to spread the word about GERD!

Let's get to it, ladies!

:yahoo:

*bump*

Babies only?

*jumps up and down waving hands*

OHOHOH! PICK ME! PICK ME! We could really represent IRD--I'll tell one of my boring, overly detailed stories while my kids do tricks. One will barf and the other will stim. We'll be an overnight sensation! :smt036

Seriously, though, as Lena asked, will they also consider older kids/tubers or do they only want babies?

I would hope they do several types....GERD is a spectrum and it needs to be shown that way.....tubers, non tubers, kids who are older, babies and moms trying to figure out what the Drs can't.....typical kiddos and non typical....I think GERD is so often linked to other issues that those who have kids that are refluxers only get pushed aside by Drs. as "happy spitters" or colic..The point needs to be made that not only FFT refluxers suffer ....it's a long hard road for all refluxers.

I agree, Debbie. If I could get off work, Brenna and I would do it. Unfortunately, I don't think that will happen.

I will be pm'ing both of you. Sleep feeding Allie for the first 14 months of her life was absolutely miserable. I have two with pretty bad reflux that affects every single day of our lives, even now. I would LOVE LOVE LOVE to go on the show.

ooooh! How cool. I'd love to do it....but am really self conscious to do it. Mary, You'd do awesome at it. If you all need any help with something (other than talking in front of millions of people) let me know!

Wow, if they are interested in older children, I would be interested!

oh yeah, i should add......
someone might want to bring up how insurance seems to be paying less and less for this stuff. (ie UHC no longer covering prevacid, not covering tube feeding supplies unless 100% npo, lack of coverage for therapies (spec Feeding), etc....)

That is so cool, that the contacted you! I would never have the guts to do it, but i would LOVE to see a show full of IRD moms. I would love to be in the audience watching it!

I hope like Debbie said, they will cover the whole spectrum. There is no shortage of info out there about 'normal' infant GERD. I think people would be quite surprised to see how severely GERD can impact children's lives and how long it can last.

It is very cool indeed that they contacted Roni. It goes to show how awesome this site is. Speaking in public (and advocating on a certain point) is my J-O-B, so I would love to do this.

Piping up over here, too...

Even if I don't get on as a guest, I will drive up for the taping. I'm an hour or so away.

I think Payton's story is a good one. He's one of the success stories, but GERD will always impact his life. There is so much to tell - from knowing that something was wrong 5 minutes after he was born, to trip after trip to the ER, to being accused of child abuse and then quickly being absolved of that after they did tests, to his fundo, to how he's doing now. We have in essence come full circle with this. It has driven my family apart, but brought Payton and I closer.

I think there are many mamas on IRD who would do an amazing job.

Seriously I think there are SO MANY IRD moms who would do SUCH a good job. From the kids with "just" reflux like Hunter, to the kids with "other" issues. I really am excited about the fact that theyre going to do an episode about reflux and I really REALLY hope they do a good job of it (it could go either way for sure)

I'm soooooooo excited about this!!!! :yahoo:

This is so cool! Katey - it would be cool to be in the audience. An IRD meet up!

Wow! How awesome is it that they contacted you for this?! I would love to do something like that but I feel like Denver's case was so terribly atypical with the gastric web being the main cause (not that we don't still have issues). I really hope some of our outgoing, energetic moms can do it *Leigh, cough cough, Lindsay, cough, Mary*. LOL

*LOL* Seleta! Picture this: Lindsay, Aim and me all on the same panel of moms. That show would get an "R" rating for sure! "Well, you see, we talk about things other than GERD on IRD...like sex, weiners, whipped cream and hemorrhoids. Here are some exerpts from our finer moments..."

:smt036 :smt036 :smt036

can't wait to see it would love to be an audience member i would submit a story but Mary needs to be on there for sure she moved across country for her kids and so many others Lindsey Amy.... they should for sure show this site on the show

I think you all would be great! Linds, Mary, Christyn! Everyone! It is going to be so cool!

I am not sure we should let Aim on TV!!!:smt036 LOL - Just kidding - we love ya Aim!

Definitely not Aim and Mary together. First thing you know they would air an Oscar Meyer commercial and all heck would break out!:razzing::haha:

Hey guys. I am doing it (I'm really nearby to the studio and they were looking for that)...they are just looking for someone to ask one question (which was given to me) and spark the discussion...it will be a short segment I'm afraid, but I talked to the producers and she said they might be interested in a whole episode about it at some point...this is not even going to touch the tip of the iceberg, BUT if one mom out there with a screaming miserable starving baby can get some help, then it counts for something.

I'll elt you all know when it's going to air...it tapes on Friday!

It's laughable, though...I'm asking a question using the term "spit up"...I want to change it to projectile vomits bucketloads!!

Soooo, whats the question you are asking?!?!

Glad youre going to be on it - see if you can convince them to do a whole episode on it, that would be awesome! Let us know when it airs!

Andrea...I took your advice and emailed the producer just a *glimpse* of what GERD has done to us. Perhaps if we all send a succinct but well-written synopsis of what reflux can really do to kids, they'll be swayed into devoting an entire show to it.

Mary...you should copy your e-mail and post it on here so we can all see what you sent them!

Yeah, I was thinking of writing her a little something when I have a bit of time (I am a great writer when I sit down and think about things, but as you have all witnessed here, I am not exactly articulate when I'm in a rush LOL) as well. I was joking about us all harassing them (as clearly that would just be super annoying) but definitely I think a few well thought out ideas wouldnt hurt...

That's cool, Janet! I am so glad it is and IRD mom.:yahoo: I hope they will decided to do the full episode. That is pretty funny that the audience questions are rigged though!

You asked for it, so here it is. Written on the fly, as I was interrupted several times by crying kids who refused to go to bed...



Dear Joni,

Normally, it would be no problem for me to hop on a plane and go to LA. I would have been more than happy be an audience member on the show; however, this coming Friday my daughter goes in for yet another in a very long string of tests related to her GI issues. I do know that you already have someone to fill this spot and, while I'm glad the show will talk briefly about this topic, I do hope in the near future you will devote more time to the severity of this disease.

I won't take up too much of your time, but please permit me to share just a glimpse of how our live have been affected by something I never knew existed. My oldest daughter, who is now nearly 5 years old, was born a full-term, seemingly healthy baby. In her first hours of life; however, my husband and I knew something wasn't right. She began projectile vomiting, screamed nonstop and had trouble nursing. This kept up for 9 months--she never slept more than an hour at a clip, she was a miserable baby who cried and screamed around the clock and she was constantly covering us in vomit ("spit up" doesn't accurately describe the act of drenching child, parent and couch in vomit several times a day). She refused to take baby food, she was late in many of her milestones (sitting, crawling, walking); however, our pediatrician told me repeatedly that this was "normal" and that her problems likely stemmed from something I was doing wrong as a mother.

She began to lose weight at around 9 months of age and my husband and I switched pediatricians. Our new ped. listened to us, observed our daughter and immediately diagnosed her with GERD (gastroesophageal reflux disease). He gave us a referral to a gastroenterologist and to a local feeding center. We began an overwhelming course of trial and error with medications to try to figure out what would make her more comfortable. She underwent testing to try to discover the root of her problem and, all the while, she continued to lose weight and would not eat (baby or finger foods). She would nurse; however, she usually vomited most of this right back up. She was slowly starving.

We found out that because she had gone for so long without treatment, the constant refluxing had damaged her esophagas and had caused her so much discomfort that she had learned to associate feeding with pain. This is why our daughter would not eat. We also learned that she had delayed gastric emptying and GI dysmotility (her stomach and intestines don't move food through properly--a very common problem in children with reflux/GERD). I moved with her to a feeding center 50 miles away from our home to enroll her in a month-long intensive day treatment feeding program as a last resort to get her to eat. For 4 weeks, she was force-fed pureed foods in an attempt to get some nutrients into her. It didn't work.

My husband and I began searching for a GI who was well-versed in pediatric GERD and motility issues. We found a motility specialist in Indianapolis, IN (we are from New Jersey) and began flying with our daughter for regular visits with him. In the end, because she was diagnosed so late in infancy and because her motility was so poor, we had no choice but to opt for g-tube feeding. At the tender age of 2, she underwent surgery to implant a "button" in her stomach that attaches to a feeding tube. She is still tube-fed today.

During this nightmare, I stumbled upon a website dedicated to children with reflux/GERD and associated disorders. I could not believe how many children suffer from this and the number of children who do NOT outgrow this in the first year of life (as so many doctors insist). I stayed active at the site and am now an administrator there. My goal is to try to help as many parents as possible get information and early treatment for this.

As an aside, my son (who is 2 years younger than my daughter) has the same motility issues as my daughter; however, because we caught his problems early, he is now able to eat and function normally. It never ceases to anger me that had somebody taken me seriously when my daughter was a baby, she might not have endured all of this. She might not have needed a feeding tube. She might not have suffered a Mallory-Weiss tear as a toddler from forceful vomiting. She might not have had to endure torturous force-feeding.
She might be a "normal" kid.

I know that this is not at all what you were looking for when you sent your email and, if you've made it this far, thank you for your patience. There are many, many more people with a story very similar to mine and we'd love nothing more than to be heard and to reach others in the same situation.

Warm Regards,
Mary Kaufman

BTW, I'm sure they're constantly pelted with stuff like this so I'm not holding my breath that she'll read my email and be inspired to devote an entire show to it...but if she gets several emails like this, who knows? ;-)

This is the email I just sent:

Joni, thanks so much for contacting me, but we unfortunately are in Florida and couldn't make such a quick trip. However, I think the topic of reflux in infants and children warrants much more than a small segment. Before my daughter was born, I no idea that children so young were even affected by "heartburn" and I certainly never imagined how devastating the condition can be. My four year old daughter has been tube fed for three years, has undergone two major "anti-reflux" surgeries (fundoplication), dealt with severe food and oral aversion, developmental delays due to malnutrition, failure to thrive (FTT), numerous medications, unbelievable pain, and many hospitalizations. Yes, there are some children with "just reflux", but I think many new moms would benefit tremendously from a show that validates their concerns. It's not "just colic"...reflux and GERD can cause tremendous problems in developing infants.

I would also be interested in participating in a show on mitochondrial diseases. My daughter, Ava, was diagnosed in May of this year, and it has tied together her many seemingly un-related issues. Again, I had never heard of mitochondrial disease, but upon researching, largely on my own, I came to realize that this was indeed what was afflicting my daughter. They are so much more common than one would think: 1 in 4,000 children will develop a mitochondrial disease by the age of 10. That means that every 30 seconds, a child is either born with "mito" or will develop it. Mitochondrial dysfunction has been linked to many diseases, especially diseases of aging: Parkinson's, Alzheimer's, Type II diabetes. However, research is critically underfunded. I work with the United Mitochondrial Disease Foundation to spread awareness and raise funds for research, and I would be thrilled if The Doctors would consider a "mito" episode. Please feel free to visit www.umdf.org (http://www.umdf.org/) to learn more about these devastating diseases.

Again, thank you for considering us. While I wish we could help you at this time, I would love to speak with you in the future regarding other opportunities.

Sincerely,

Lindsay Knops
Sarasota Area Ambassador
United Mitochondrial Disease Foundation
www.umdf.org (http://www.umdf.org/)

Mommy to Ava, 4
Complex III OXPHOS defect

Keep up with the fabulous http://gfx1.hotmail.com/mail/w2/emoticons/rainbow.gifMiss Avahttp://gfx1.hotmail.com/mail/w2/emoticons/rainbow.gif at:
https://www.caringbridge.org/visit/avaknops

Oooh, good letter Linds! :-)

AWESOME Linds!!!! You couldn't have worded it better!

Wow, those are good letters, ladies!! Joni is SUPER nice and I hope i will have a minute to speak wiht her on Friday about all this...

While the questions aren't exacccctttlllyyy rigged, after all, I am and IRD mom..it is definitely not MY question. It's basically "My baby is really uncomfortable after feedings and spits up a lot. At what point should I be concerned"

When I go down there I'm going to ask to change the wording to "My baby is arching, screaming and miserable during and after feeds...i think that's a little more encapsulating...I would change spit up to vomit if they'll let me....we shall see.

I ust think that it's SUCH an important distinction...If I heard it once I heard it 1000 times..."my baby spit up, too"...um...no...no no...I have bowls stashed in every room of my house and my son fills them liberally...how about you?? I feed my son while draped in two beach towels...how about you? I feed my son on the kitchen floor because it makes cleanup easier....*sigh*

I ust think that it's SUCH an important distinction...If I heard it once I heard it 1000 times..."my baby spit up, too"...um...no...no no...I have bowls stashed in every room of my house and my son fills them liberally...how about you?? I feed my son while draped in two beach towels...how about you? I feed my son on the kitchen floor because it makes cleanup easier....*sigh*

:haha: Before I quit BF lilly, we took and put those foam mats under my rocker and 1/2 of our living room.....my easier to clean up puke! LOL I remember when someone would say that their child used to puke and it'd hit the wall and now they're fine, I'd snap and say "did your child ever throw up blood?" :oops: many people just don't get it! If they'd do a show devoted to this subject, emotional aspect should definately be brought up, kwim?

haha....emotional...you mean like the MAIN reason my child doesn't eat solid foods is half because it hurt for so long and half because it freaked him out to have his mom crumble into tears all the time...or that I used to be semi-normal and now I'm medicated? I totally agree with you! It would have been nice to know I wasn't crazy or alone...thank God for websites like these!

Lindsay, i loved your letter, beautifully written, great job!!! I sure hope that they will make another show just concerning reflux, one nice, BIIGGG show, full of questions and telling the truth about the matter....fingers crossed...

I got a response from Joni. She said she got my email, told me that she already has someone to ask the question and said she'd keep my contact information in case they ever do a show on this.

Nice, but I'm not holding my breath.

Good luck on Friday, Janet!

If anyone happens to see this or tape it...could you possibly post to youtube so the rest of us can see it? That would be so cool....

Thanks, ladies! I wrote that on the fly before I headed to work this am...I didn't see it in my junk mail yesterday! Not sure if I got a response...haven't checked email yet.

Janet, GOOD LUCK!!!!!! I really, really hope they consider changing the wording!!!!!!!

:hug: Make sure you tell us all about it!!!!!

I'm also not holding my breath, but I did get a reply. Mary, I hope we made an impression and that they'll call us!

Thank you for writing, Lindsay! I had no idea how pervasive IAR was. We found someone local to ask a question and kick off an explanation from our pediatrician, Dr. Sears. We hope to do something more in depth later in the season. I’ll keep your info on file.

We’ll get the word out about an airdate once it’s scheduled.

Best,
Joni

I'm going to follow suit and send her an e-mail while it is still fresh in her brain. The more info she has, the more likely they will do a show on this subjet.

Do it, do it!!!!!!

I got an email back, and she wanted to know if I had self-dx'd mito...they have a self-dx show coming up. I told her an abbreviated version of the story, so we'll see. ;)

Cool!

Dr. Sears was our old pediatrician from when we lived in San Clemente, CA!!! (And author of all those baby books)

Seems like he should be sympathetic....unlike some tv doc's, last time I checked, he was actually still seeing real, live, patients.

Great letters Mary and Lindsey BTW!

I too wrote a short email to her and received much the same response as the other ladies. Hopefully they actually do a show about it later on in the season.

Here is my letter. I just sent it.

Hi Joni –

It was nice to talk to you yesterday.

It has be brought to my attention that a few other mothers from infantrefluxdisease.com have written you letters telling you just how vast and complicated the world of GERD can be.

I would like to follow suit:

My son, Payton, was born nearly one month early. When he was born, he weighed 4 pounds 5 ounces. He was feisty and loud and pink scoring a 10 on the Apgar scale. About 5 minutes after he was born, it was apparent that something was amiss. He was born without a suck reflex which made feeding very difficult. He would not breastfeed and would barely take expressed breast milk or formula from a bottle. The NICU team sent up a nurse to show me how they feed infants with this issue. Once I was able to get some breast milk in him, up it came. It was not the typical spit-up. It was projectile vomited across the bed. I was horrified and scared. I would try again and again with no luck. Then the screaming started. For 7 months straight he would scream between 13 and 18 hours a day with little to no relief.

I took him to see his pediatrician numerous times. Each time I was told that it was “just reflux” and that he would grow out of it by 12 weeks of age. It was only upon my insistence that Payton be put on Zantac. I thought this was the magic bullet. No such luck. He was gaining weight, but nowhere near enough. It was a struggle to get two ounces of milk in him, only to have it spewed three to four feet across the room. The reflux medications progressed to stronger dosages of various formulations and none of them worked.

When Payton was 6 weeks old, the screaming and vomiting was just completely out of control. I took him to the ER as I knew something was terribly wrong. I didn’t care if they thought I was a freaked-out first-time mother. I knew. He was badly dehydrated and was becoming lethargic. The nurse started fluids and had us admitted. This first hospital stay was one of many in Payton’s first year of life, but it stands out the most in my mind. I was suspected of child abuse. Of starving and shaking my child. I was absolutely shocked and completely crushed. I had spent every minute of every day trying to feed and comfort my child – I didn’t understand why they would say such a thing. They took him for a head CT to see if he had any brain bleeds caused by “shaking” or “dropping” him. It was clean. Then they did a barium swallow. Within three seconds, not only was the reflux apparent, but it was very severe. The hospital’s social worker come down to our room promptly to apologize. The reflux was so bad it got Payton a lot of much-needed attention.

That is when all of the testing started. Upper GI, ultrasounds, tests for metabolic disorders and cystic fibrosis. All of these things are detailed in a journal I kept. Every feed, every vomiting episode, the hours he screamed, the hours he slept, how many wet and dirty diapers he had, when he took his three medications, all of the doctor’s appointments, all of the horrible tests.

At 4 months of age he started to stop growing. His weight was decreasing, he stopped getting longer. His brain growth would be the last to go. No matter how I thickened his special high-calorie formula it was still coming up in gushes. He nearly died twice that in those few months. It was around this time that he had the metabolic testing done. His blood profile looked like that of an anorexic teen girl because of all of the vomiting. His body was starting to eat itself from the inside out just to keep his brain functioning. An NG tube was placed. They showed me how to do it if he ever pulled it out. No mother should have to learn how to do that to her child. I had to do it three times over the next three months. He grew, but the NG tube was so irritating that he stopped taking any food by mouth and he was still vomiting violently. He became so orally aversive that he still has issues to this day. He will be 4 in September.

At 6-1/2 months old, it was determined that he needed to have a Nissen Fundoplication and a G-Tube placed. A Fundoplication (fundo) is a procedure where the top portion of the stomach is wrapped around the esophagus so that the patient cannot vomit anymore. The day of his surgery, he turned 7 months old and weighed less than 10 pounds. The surgeon had to do an open procedure as he was to tiny to do it laprioscopically. He has a scar from the base of his sternum to his belly button.

From that point out he grew. He started to catch up to his peers. He didn’t crawl until he was 13 months old, didn’t walk until he was 18 months old and didn’t talk much either. He had aggressive Speech, Occupational, Physical and Feeding Therapy until he was three. He is still behind in cognitive, speech and motor skills and is enrolled in a special pre-school here in Carlsbad. He is excelling and loves every minute of it. Over time, his oral intake increased and his tube feeds decreased. He started out at 1000 mls of a formula and breast milk combination though the tube per day and that was decreased over a three year period to about 200 mls at night.

This past May, his tube fell out. The balloon that held it in place was defective and it came out while at his babysitter’s house. I figure it was out for about three hours has his stoma was closed and I could not get the tube back into his stomach. There was nothing to do but feed him as much and as often as he would eat.

He has continued his oral intake and is making significant progress. However, he still has a tentative relationship with food. He is watched very closely and weighed once a month to make sure he is growing.

I wish it was as simple as “just reflux”. There are many children out there who are dealing with severe GERD and it will affect them for a lifetime. This disease affects not only the child. It tore my family apart – my divorce was finalized a year and a half ago, it made me question my ability as a mother, my sanity as a person and my world was reduced to milliliters of formula and medications, hours on the pump and all of the therapy and doctor appointments. Looking back, however, I now see the positive side of it. I was able to be an advocate for my son who could not speak, it gave me the confidence to leave an awful marriage and parent on my own, it gave me the confidence to start new chapters in my life and most importantly, it gave me a heck of an awesome kiddo who takes no guff from anyone. He has been through so much in his short life and it has made him so strong.

Thank you so much for reading this. I truly hope that “The Doctors” will be able to do a larger segment on GERD and all of the ramifications that come with it – the surgeries, the tube feeding, the tough decisions that parents have to make. It is not always “just reflux”. If 10 minutes on television will help just one terrified family, then that would mean the world to me.

Sincere regards -

Krista

Perfect, Krista!!!!!!!! :hug:

Cool!

Dr. Sears was our old pediatrician from when we lived in San Clemente, CA!!! (And author of all those baby books)

Seems like he should be sympathetic....unlike some tv doc's, last time I checked, he was actually still seeing real, live, patients.

Great letters Mary and Lindsey BTW!


Dr. Sears is very sympathetic to GERD issue as he has written about it extensively and he recently wrote the forward to Beth Anderson's book about reflux (she is the founder of PAGER). However I do remember there being a segment on Dr. Phil about crying babies and reflux was discussed. Dr. Sears' sons, who are both pediatricians as well, were the experts on the program and they rather glossed over how severe GERD can be. That being said I am sure they didn't want to scare viewers with horror stories in such a short segment. I believe the intent was to let the general public know this is an issue as most don't even realize infants have have GERD. That probably is the intent of this program and raising any type of awareness to the general public is a good thing.

Very moving letters...I can say that I found them overwhelmingly powerful. Thank you for sharing them w/ the show and w/ us. I was literally moved to tears. You ladies are to be commended!!!!!!!!

Great letters! We should keep them all somewhere for newbies to review and to email out when necessary.

Linds - be it Yo Gabba or the Doctors - I am positive I will see you or Ava on TV! LOL

No kidding, Linds. Let me know when you come to LA for YGG. I will be there in a flash!

I would love to do it. I would love to explain sleep feeding and the havoc GERD puts on a family. I had one mom at preschool today tell me, as her baby screamed, that her DD had colic and I mentioned reflux and she was so sure it was not because her child ate fine. :( Oh but get this her dr had her on anti meds ya know what they are called Zantac I just shock my head and thought that poor baby.

I would love to do it. I would love to explain sleep feeding and the havoc GERD puts on a family. I had one mom at preschool today tell me, as her baby screamed, that her DD had colic and I mentioned reflux and she was so sure it was not because her child ate fine. :( Oh but get this her dr had her on anti meds ya know what they are called Zantac I just shock my head and thought that poor baby.

Mary your email was awsome! I really wish there was more GERD awareness.

Great letters/e-mails, ladies!

And yes I probably wouldn't be the best candidate to represent IRD as MY question would probably be something like, "Can my husband and I still have sex even if our child has GERD?" :evil4:

LOL...Aim you don't even have to ask that questions...really? Do You?

Anyway, so what happened with this? Was there a show? I would love to write to them. How did you know where to write? I am sorry I did not see this thread and so disappointed that I knew nothing about it. Guess that is my fault for slacking and not being on IRD anymore...sigh

They went over infant reflux in their 100 questions episode the other day. I didn't think they said as much as they should of. If anything I felt they made it out to be almost like it wasn't a big deal. I don't think anyone (including doctors) really knows what this is like unless you have a child going threw it. It made me really mad.

ohh ladies! I am so proud of all the mommies who wrote letters to the producer and posted them here for us to gleam for you. You are all such wonderful mamas with such a touching story to tell. thank you and God Bless....so when was the show, i guess i missed it?

Your probably already full of volunteers, but if not, I would be interested. I have premie twins that both had reflux. My son came home on oxygen after repeatedly aspirating in the NICU. Ironically, his reflux was diagnosed by the pulmonologist, not the NICU docs. He was in sever pain, not eating, etc. until February when we finally got a GI to up his Prevacid. He made a dramatic turn around. My daughter started refluxing at two months. She was throwing up decent volume at almost every feeding. Her worst day was thirteen times. She started refusing the bottle in February, was on an NG tube by April, G Tube and Fundo in June. She won't take anything orally right now and has recently started throwing up again. She has no other health issues. Just has never learned to enjoy eating. We see a Feeding Therapist weekly. The twins are eleven months and will be a year old 11/7

I laughed so hard at your comment that I am still having trouble breathing. :smt036

Great letters/e-mails, ladies!

And yes I probably wouldn't be the best candidate to represent IRD as MY question would probably be something like, "Can my husband and I still have sex even if our child has GERD?" :evil4: