Posted By Posting
Nov 17, 2009
jordyn'smom
Erica
Jordyn 11/30/04 DX GERD at 1month old
AHHHH Dr.s
I spent the day on the phone yesterday just trying to get on of Jordyn's Dr's to listen to me. First I started with the family Dr. since we didn't seam to get anywhere with the GI 2 weeks ago. I didn't even get past the receptionist. I was told just to call ped GI since we had seen them recently. So I called and left a msg with them. The nurse called back an hour later and said dhe would email the Dr and get back to us. 2 weeks ago we were told her pain was from diarrehoa yesterday he says it's constipation. I am squeezing in all the recomended fiber by putting benefiber in her drinks since she won't eat. We have also been using miralax. He proceeded to say he wanted to try lactulose maybe do it in combination with the miralax. I asked him when I should see a reduction in pain I mean she is in enough pain to disrupt school and other daily life activities as well as school. He told me if the pain is from constipation and that is what is causing the obvious reflux symptoms than we should see improvement in a week. If however it is not from constipation and it is the reflux she is already maxed on medication. If it is from an underlying esophagitis than it has to heal. Then he asks if there are any other questions. I just wanted to scream. When will Drs learn that sometimes a mother knows when something is not right. I have fought this battle before. I don't want to get to the point where we are being told she will have to be tube fed again. I want my little girl to be free of pain. I can only hope that tomarrows appt with the allergist goes better. My DH is so cool about this. I know he is screaming inside too but he holds it together for us. Sometimes I wish he would show it tho so I didn't feel like I was going at it alone. (((((((HUGS))))))) to all of you going thru this.
Nov 18, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
What PPI is she on and what is her dosage?

Do you ever use aluminium free Mylanta Cherry Supreme with her. I think I would be a good think for her. It will help with the reflux, settle her stomanche and make her poop a lot easier. Triple help for her.

Nov 18, 2009
jordyn'smom
Erica
Jordyn 11/30/04 DX GERD at 1month old
She is taking 15mg Prevacid solutabs twice daily. She also gets 75mg zantac twice a day. We are really careful to get the Prevacid in on an empty stomach. 45 min before food and 3 hours after. I have seen the Mylanta cherry supreme mentioned before and we either couldnt find it or it had milk in it. I tried to find it when she had dental surgery and couldnt chew tums. I will check again today when at the pharmacy. That palce is our second home. I don't even have to give them my name when calling and they know who I am. My husband says he should have a personal parking spot there. I like our pharmacists more than most Dr.s
Nov 18, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Ok, so thoughts.. might not be of any use but... Solutabs for whatever reason did not work well for Ryan. I switched to the capsules and then better yet I started mixing it with Caracream. Since I dont know Mia's history of meds forgive me if I suggest something that you have already tried. Have you tried the capsules. Open them up and put it in applesause or have you tried a different PPI like prilosec, nexium or even better Zegrid? Different kids on this board do better with different PPIs. Again, ignore suggestions if you have already gone down that road. PS. According to the PPI calculator her dosage is not maxed out but good luck telling a doc that. You might have to go OTC.

The alumium free Mylanta Cherry Supreme can be hard to find. Jennifer found it at Dollar Tree, I had to have my pharmacist special order it for me. It was cheap and in the next day. I use it any time it seems like the Miralax isnt keeping up. It was a great find for us.

Have you seen an pediatric allergist yet? One that really listens? I spend 15 mintues with one and was blown away with amount of knowledge he imparted on me. He was the one the solved the mystery of the recurrent canker sores on Ryan's tonsils. Long story.. but the 15 mintues I spent with him was more useful then the year I spent with the old pediatrician.

So sorry you are going through all of this. It stinks to see little ones and their families go through this and it is even worse to see the older ones go through this. It affects their quality of life not just the parents. Keep us updated.

Nov 18, 2009
jordyn'smom
Erica
Jordyn 11/30/04 DX GERD at 1month old
We have been concidering getting the Prevacid 24hour to try with Jordyn if for no other reason than to get her up to the dose that she should be getting acording to Marci Kids. We may also start looking for a new Dr. GI wise. He seams good but just not proactive in our opinion and I would rather a proactive approach than a wait and see. We have come so far and I would hate to loose that groung kwim? We are actually going to see our allergist today. There are 2 in the practice and we hold one much higher than the other but don't get to choose who we see. Hoping they will have some more insight today> Thanks so much for your ideas and listening.
Nov 18, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
I support your decision to get the Prevacid OTC. It is worth a shot. Did you have a chance to check out Prevacid's website for instructions on how to administure the capules if they are not able to swallow them? If I remember correctly it is a tablespoon of applesauce, a little apple juice or ensure yogurt. Or... better yet...Caracream from Marci-kids... aka Reflux Solutions Lab.
Nov 18, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
PS. How did it go with the allergist???
Nov 19, 2009
jordyn'smom
Erica
Jordyn 11/30/04 DX GERD at 1month old
The allergist seamed to support our feelings that the GI wasnt being very proactive and thought it may be time to see a new GI. He didn't make any changes with her meds at all. He seams pleased with how her lungs are reacting to inhaled steroids. Skin still seams to be an issue but he believes its not only allergies but her having very sensitive skin. I think I may videotape her sleeping so I can share with Dr.s and DH who sleeps right thru it.I am so exausted I knew that becoming a mother meant sleep loss but not for this long. Add to that that I have only been able to let her spend one night away from home with the exception of hospital stays. I just can't trust anyone else to be as careful as I am. Is there ever a point wher you would push for a test that has already been done like upper GI or scope or PH. She has had them all but all before age 2. There are times when she is eating that she seams to get food stuck in the throat. I have had her adnoids checked and tonsils look good so I worry about scarring and strictures. I also fear that I am overreacting and wouldn't want to put Jordyn thru that just because I am a worrier. She sleeps for 10 hours and then get up and crys that she is sleepy. Thank goodness we are cyber schooling. No mainstream teacher would put up with all this not to mention all the school she would have missed. I wonder if anyone else here knows of a PA GI or one in a neighboring state maybe. Thank You SOOO Much how is Ryan doing? Does he get more mucosy when he is having a flair?
Nov 19, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Great idea to video tape her! The docs cant question hard evidence like that. Definately do that and share. Has she ever had a sleep study done at a sleep disorder center. I have a good friend on the east coast that just had that done with her 3 yr old. Her daughter would also sleep 10 hours but would wake up looking and acting like she had not slept at all. She was sick a lot because of it. No one would listen to her though. She finally vidoed her, took it into the ped and the ped ordered a sleep study on her. She had to take her somewhere over night and sure enough she had severe sleep apnea. They took her tonsils and adnoids out and the issue was solved. She had taken her daughter to an ENT prior to that and was told the adnoids and tonsils were fine... guess not. It is a painless non evasive study and you can sleep with her. Definatley worth checking out. If she does have apnea that would throw everything out of wack. I might be sending you down a another bunny trail but at this point what do you have to loose.

What area of PA do you live? I have quite a few contacts out there. I can start asking around for you.

Ryan is doing well. I stay all over his pooping habits and mucas patrol. If his poo starts looking a little bit hard I immediately give him Milk of Mag or Mylanta. If he is clearing his throat or has the slighest runny nose, I increase the Claratin for a couple of days. I refuse to risk going back to the pits of hell that we were in earlier this year. Vigilant... is just a nice name for stalker mom. : )

Nov 19, 2009
jordyn'smom
Erica
Jordyn 11/30/04 DX GERD at 1month old
I actually live in the Northern Alleghanies which is like North Central. We have been to childrens in Pittsburgh which was ok untill our GI left and we had a very bad expirence with the other Head GI there so we went to Hershey Childrens. The guy isnt bad but just to wait and see for us. So we have been on both sides of the state unfortunately living in the country like we do means no big hospitals nearby.
Nov 19, 2009
jordyn'smom
Erica
Jordyn 11/30/04 DX GERD at 1month old
forgot to mention Jordyn nea when we brought her home from the hospital she was on a monitor for the first year of her life.
Nov 19, 2009
jordyn'smom
Erica
Jordyn 11/30/04 DX GERD at 1month old
Boy that last post was missing alot. She had Premie apnea when we brought her home from the hospital. On a monitor for a year or more
Nov 19, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Ah ha! Hey we just might be on to something. If she had apnea as a baby it just might be back! My husband has severe apnea... which he refuses to treat... He has reflux, high blood pressure and cholesterol issues, has since he was 30. He was told that he could eliminate all of those issues if he would just treat the apnea. He refuses... wont wear the mask at night and wont get his tonsils and adoids out.... His doc told him he is a ticking time bomb but he doesnt care... so I increased his life insurnance limit. Sorry had to add the last part for comic relief. : ) Check it out.... That just might be at the root of your problem.
Nov 19, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
My step mother in law grew up in Valencia, PA (north of Pittsburgh). All of her family is still there. She is a cardiac care nurse so she knows a lot of people in the medical community. I will see who she can drum up for ya.
Nov 19, 2009
fiddle1
Fiddle1
DD 10 mos.
15 mg prevacid solutab/day
dx GERD at 4 weeks
had relatively peaceful 5 months-9.5 months
now regressing, waking 10+ times/night,
not sleeping longer than 1-2 hours,
waiting for bronchitis to go away
docs say secondary reflux b/c of chest infection
Videoing has a BIG impact on docs that won't listen. Go for it! I'm so sorry and sympathetic to you and little Jordyn.
Check with your
doctor first!