I love you gals!

[Anonymous]

Thank you all so much for your help and understanding! I cannot tell you how much it means to me to talk to people who know what I am going through. If I hear one more, “I know, hon” or “Babies cry” from a person who is so totally clueless to what it is like to have a baby in pain ALL THE TIME I will lose my mind. Not that I haven’t already (as is evidenced by the previous postings). Anyway, I truly cannot express how much this site has helped me and I just started!

In response to the questions:

I live in Wisconsin. The ped told me that there are none around me. She said the closest would be in Minneapolis, MN. I would be MORE than happy to drive to Minneapolis if it would help my daughter. This reminds me. Why does the pediatrician assume that I need help with my money. Does this bother anyone else? “You don’t want to try Nutramigen because it is very expensive.” “You would have to go all the way to Minneapolis and with the price of gas…” “Those tests don’t run cheap” etc. I know I don’t need to tell you this but money is the last thing on my mind right now. I would sell organs for her at this point.

I started the switch to Nutramigen this morning. I am transitioning to make sure she does not have a GI nightmare. I hope to have her completely on Nutramigen by the end of the week.

She has her upper GI tomorrow AM so I am going to ask the pediatrician again for a referral to a ped GI when she calls with the results. I called my insurance to see how the visit would be covered if I was not referred. The rep told me it would not be covered because it was not deemed medically necessary. She also told me that they do not cover second opinions because they are repeats of care. She said that would be like them covering the same prescription twice. I wish this wasn’t the case, but I am going to that specialist no matter what. Again, money is not at the top of my priorities right now.

I had one more thing that I wanted to ask about. Why is it possible for a GERD baby to have good days when the medication does not seem to be working. She has had two good days (relative to her normally not other infants her age) since I started the medication. Both times tricked me into thinking things were about to get better. I have two theories. One is that she is so tired from constantly crying and not sleeping that she occassionally needs to crash and the other is that God gives us a break when he knows we are about to lose it. Is there any reason medically that this happens? This also makes me question that she has GERD because I don’t understand how she can have good days and bad days.

Thank you again for your help. I cannot express how much this means to me right now.

[Anonymous]

Ped GI’s in your state:

http://www.naspghan.org/aspModules/PublicLocateDoctor/PublicLocateDoctorResults.asp?Criteria=State&Text=Wisconsin

GERD and intolerances are such a rollercoaster and it’s so different one day from the next. I don’t know why medically, but one of the moms most likely does.

[Anonymous]

I’m so glad you’re pushing ahead eventhough you’re getting so much push back–your lo is very lucky!

As for the good/bad days, I think both of your theories are correct!! My dd was so exhausted by the end of the day, that she’d sleep like a rock all night long–another thing GERD babies don’t normally do, and that tricked my docs at first! I had also asked the doc why that the first few days on the new formula/dose of med my dd would seem better, and then get worse again, she said that there’s a “honeymoon” period at first with a change, but when the body gets back used to it again, it kickds back in.

Good luck with the tests and specialist. Just keep pushing the pedi for the referral, many people on the board have had success will emailing/faxing their docs too, so you can also try that!

[Anonymous]

Are you in the Milwaukee area? My GI is willing to listen to the parents suggestions, do testing, and prescribes a good dose. My daughter was on 15 mg of prevacid at 3 months, 22.5 somewhere in between, and 30 mg at 8 months. If you want her contact info, please PM me. While she is very quick in her appointments, she gets the job done.

[Anonymous]

I agree with Denise about the honeymoon phase. Most diseases/conditions have this when they are starting to be regulated. Also the exhaustion is true as well. I remember at 7wks old Cooper screamed for almost 24hrs straight (right before we went on a family beach trip no less) but by the t ime I took him into the doc he was sound asleep b/c of the exhaustion and almost slept for another 24hrs and much of our beach trip. He either screamed for hours or slept for hours from the exhaustion so they are both true. Be strong, you are doing such a great job for your lo despite eveyrthing being against you. Good Luck.

[Anonymous]

Great job fighting for your little one. If you are considering Minneapolis, I know of a gal on this board (I don’t know if she comes around much anymore) but she had a doctor she had really great luck with. I think I still have her email address. Just PM me and I will try to find it if you are interested. Good luck!!

Robin

[Anonymous]

You are doing a GREAT job getting help for your baby!!

I hear you on not caring about money anymore. When insurance stopped covering our Neocate we starting charging up credit cards (I had lost my job from missing so much work with him) to keep Landen on it. He’s still on it. We didn’t think twice about using savings, CC’s, whatever money came our way for Neocate. My DH sold his 4wheeler (something he had since he was 16) for 400 dollars one week to buy a few cases of Neocate when we were in a real pinch. I had SO many people tell me that I needed to just put him on goat’s milk or try this or that type of milk. Landen cannot tolerate ANYTHING but Neocate to this day. I just thank God for it b/c he wouldn’t be alive without it!!

I also think your theories are correct. For us, if Landen seemed to have a good day, I think it was God trying his best not to give us more than we could handle. We had a 2 year old, lots of bills, little money and I have a chronic migraine condition which requires me to be on lots of meds including seizure meds. I am supposed to get at least 8 hrs of rest on the seizure meds (hahahaha- RIGHT) and I was on the verge of passing out all of the time until he was 5 months old b/c he never slept more than 5 mins at a time. I was a zombie!!! So take the good days and rest as much as you can until this is under control. I think a PPI (can’t remember if you are on one) at a good dose and a hypo or elemental formula will help things a lot!!

Good luck!! You will learn everything you need from this site. I would have died without it!!

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