|Sep 28, 2010|
Need Support I am struggling with 10 week old with GERDHi! I am not sure how to do this but here it goes.... I have a son who has been diagnosed with severe GERD and delayed gastric emptying. We were just discharged from our second hospital stay where we had an ultra sound for pyloric stynosis(negative), GI consult and observation. He woke up on Thursday morning choking and gasping for air!! It lasted over an hour and I finally got in to see the ped and she immediately put him on Reglan and sent us to the hospital for observation and GI consult. He has been on Zantac since 2 weeks old and we did have a trial of Axid but he projectile vomitted on that medication. At 3 weeks we started on Prevacid which our insurance does not cover so we pay $100 every 2 weeks! We thought things were going well until the choking episode last week. He had choked over labor day weekend during our Neocate formula trial. I went back to breasfeeding immediatley after that episode. I am on the elimination diet (No dairy, soy, eggs, wheat, nuts) and have lost over 25 pounds! I tried to add in wheat and nuts but his face and chest broke out and then the choking episode happened so I am back to nothing! We were told to try the over the counter Prevacid, breaking the capsule and putting the granules in applesauce. Well I tried that and within 10 hours he was choking. I don't now if the "thickened" consistencies of the Neocate and the applesauce episode can be corelated with the choking episodes but that is all I can think of. He is coughing all of the time and his throwing up has not decreased since adding the Reglan. All I do is give medication to this poor baby! Reglan, Zantac and Prevacid are ruling my life! The only recommedations from the GI consult was to time our medication administering and a Upper GI series. Well, every 3 hours I am giving him some type of meds and then waiting 30 minutes to feed, that is fun watching him cry because he is starving! He has already had a Scinti scan??? They told me he has frequent episodes of Reflux! ha! Oh and delayed emptying of the stomach contents. I fought very hard to not have him on Reglan due to the side effects but he is on it after this last choking episode! I am at a loss for what to do next! I live in fear of the next choking episode and hope he does not aspirate!! I don't leave my house and feel so bad for my 8 year old daughter who I feel is getting the shaft with little attention!!!! Every cry or cough I am wondering why and what is happening?? I cry at night because I love this baby but what my life back! Does anyone else feel this way??? We also spent 6 years trying to conceive. We had 2 misscarriages and so many other proceedures to finally have a successful IUI proceedure! He is my little miracle but I just want him to smile and be a happy baby. I can deal with the throwing up but I don't want him to miss all of the important milestones! I need some support because no one close to me knows what I am going through!!!
|Sep 28, 2010|
|I am so sorry you are going through all this. A big HUG to you. I don't have much advice regarding the aspiration but I am sure many of the ladies here will chime in regarding that. I mainly wanted to write because your last paragraph really hit home and I was in tears. We also spent years trying to conceive and had many miscarriages including one in the second trimester and added to that various fibroid issues and surgery. We finally had our dear DD and it was a true miracle but only to find that she has severe GERD and intolerant to most food proteins. I just want to let you know that you are not alone. Yes, nobody not even close family and sometimes even my husband can't relate to everything that I am feeling. But I wanted to tell you that my DD is 21 months now and she still has reflux and can still only eat a few foods and still doesn't sleep well, but has met majority of her developmental milestones...I think you were concerned about this. These kids are just amazing. I just don't know how she meets all her milestones with no sleep and hardly any food. Please hang in there and if you are not happy with any of your doctors, make a switch. I made the mistake of sticking with bad docs for a long time. Take care.|
|Sep 28, 2010|
|If you haven't already, please visit Marci-Kids.com: http://www.marci-kids.com/medications.html#antacids
This website really helped me understand GERD, the medications used to treat it, and dosing/timing concerns for administering the meds.
Please read about Marci-Kids' Buffer Babies and Caracream suspensions at RefluxSolutions.com: http://www.refluxsolutions.com/
I can relate to how hard it is to get the timing of the PPI meds right. You have to feed on an empty stomach, 30 mins before a meal... With a baby with DGE, when is the stomach ever empty? And when he's already so miserable, it's agonizing to watch him screaming to eat for half an hour on top of all his other discomforts.
The Buffer Babies or Caracream will at least help with this issue. You can buy a month's supply of Prevacid over the counter for like $14, break open the capsules, and mix them with the suspension (which costs, I think, like $10 via mail order.) The suspension will allow you to administer the Prevacid without regard to mealtimes or an empty stomach. If you want more info, call David at Marci-Kids. He's always been very helpful to me.
I want to add that you are not alone. Keep pushing and fighting and trying new things to get your son the help he needs. The women on this board are a testament that it does get better.
|Sep 30, 2010|
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
|So sorry you are going through all this. I can relate to having a baby choking/crying/occupying all my thoughts and time, while my 2 older daughters were practically abandoned. It was really hard. In our case, we were dealing with GERD, severe food allergies, & eventually EE. He did not have the delayed emptying, however. I don't know much about that. I can only say that Neocate was the only thing that helped our son in the long run (but he didn't start it as a young baby). Just be aware that if food allergies could be a part of this, an elemental formula may still help once you get the other stuff under control. Just wanted to let you know, as another mother who went through hell, that it will get better. It may take a lot of drs. visits and time to get there, but eventually you get there. My son is funny as can be now & my girls love him (most of the time!!)
|Oct 02, 2010|
Mom to Stanton - 2 year old with GERD, DGE and MPI
|Somehow you will survive this as we all have or are....I too get discouraged that I don't quite have my life back. I watch friends who had babies around the same time now meeting for lunch and discussing pre-school waiting lists. Not anywhere on my radar. However, now that my little man is 27 months old, I have adjusted to my "new" life. We are beginning to have more good days than bad and we are soooooo closely bonded. I wouldn't trade that for anything!
Cry - vent to us - and love that baby|
|Oct 06, 2010|
Macy, mama to Alexia, 2nd child with reflux. Born 4.5 weeks early on Oct. 20th. Showing signs of reflux very first week. Exclusively breastfed, starting elimination diet 11/1.
|I'm so sorry. Boy does that bring memories. I remember when I was in the worst part of it... I had a dream that I was in a waiting room with the baby and all these other families. It looked like an airport waiting area, where you could look out and see all these people leading normal lives and here we were waiting, watching, with no idea when we would ever be there... outside. |
Hang in there! You are absolutely not being selfish. You are giving up a lot, a lot more than most mothers, in tending to a child with GERD. And as much as friends and family may care they do not understand what it takes and just how hard it is. Give yourself credit for doing what you do. Give yourself a big giant hug. You deserve that and much more. It'll get better. It will. I wish I could tell you when, but just know that it will.
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