Infantreflux.org | feel like i’m on a fishing expedition

This topic has 8 replies, 1 voice, and was last updated 20 years, 6 months ago by Anonymous.

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February 6, 2006 at 11:09 am #911

Anonymous
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Allergist appointment is tomorrow. Yes, we made an appt with another GI down at Children’s Hospital of Philadelphia (about an hours drive for us).

We tried Nutramigen (for a month) and it was HORRIBLE. WE also tried alimentum but in fairness, it was right after the Nutramigen incident with regular Enfamily in between (For a few days until he was projectile vomiting everything across the room). Then we started Alimentum. I do not think we gave it a long enough try to say for sure that “it didn’t work.” Can you get insurance to help pay for this as well? I don’t mean to sound ridiculous, I’m just scared of affording any of this formula for a long period of time. When we were on Nutramigen I was working fulltime. We recnetly made a decision due to all this choas and daycare (never seeing him andhaving to rely on others to report his symptoms) to go VERY part time. Weare budgeted down to the last dime. ANd we do not qualify for WIC. AGh. We’ll do what we have to do but it will send us back into “planning chaos.” I went part time to get away from all that!

We had a horrible night. Last two nights have been the worst ever. I’m so confused as to what’s going on. He had insane gas. At points during hte night he woke up every 20minutes and the longest stretch was 1.5hours. This is very abnormal b/c even with the reflux, he slept 6hours. He’s off meds for the ph probe on Thursday. …so i realize that could contribute but why gas? Did the meds help the gas? I thought it was for acid only! I just get more confused!

THank you to everyone who has replied. And yes, I do need to just accept what is going on. I do accept Mason for who he is. I am high maintainence, so i wouldn’t expect anyting else form my offspring ! My poor laid back husband! I think i would relax a little more once we get a doc taking us seriously and we get medical care that I feel is decent. I have so many firneds with babies right now and it does gethard when i hear how easy it is going for them! NOt taht i’d wish this on anyone! YOu know what I mean! So, maybe if I stopped wishing that I had it easier (or more accurately, that my SON had it easier!)…i would calm down!

February 6, 2006 at 2:12 pm #921

Anonymous
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I feel so bad you having to take your son off of his meds! That must be so hard on both of you. I know exactly what you mean about affording the formula! It is rediculous. Our insurance refused to cover nutramigen but all of them are different on this policy. We really don’t qualify for WIC either but in some cases they will let you have it if there is a special case like reflux. I have an appointment on thursday this week and I will let you know if I get it or not.

Oh and i found the nutramigen fiasco post. Sorry i just didn’t see it until after i posted here earlier!

February 6, 2006 at 4:38 pm #939

Anonymous
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kmay77 wrote: I am high maintainence, so i wouldn’t expect anyting else form my offspring ! My poor laid back husband!

This is us to a tee!

Yes, you can get insurance to cover formulas, but you really need to fight for it. I think in Laura’s intro she has a piece called going to the top. It has info on this subject.

Are you sure it was gas? I ask because I was convinced for a long time that Ally’s problems were gas related and they weren’t. Our ped explained to us that alot of the time the baby reacts to reflux as though it were gas due to burning at the base of the esophagus. Maybe it was because he’s off the meds?

February 8, 2006 at 3:41 pm #1161

Anonymous
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Hi. Just wanted to chime in that you are so not alone… reading your posts about your frustration I really can feel for you, having been there too. My son was also in the 95% growth, and we were also dismissed because he seemed healthy that way. They had no idea what we were going through. All I can say is keep trying, and don’t let them dismiss you or make you feel belittled, because YOU are the true expert, being with your son 24/7. We had to see 3 different GI docs before finally seeing a very helpful one when my sone was almost 1. I only wish I hadn’t been more persistant earlier so that we could have gotten there sooner. You also mentioned that your son is in EI. That is wonderful! Most kids don’t start that till much later, so you’ve got an advantage there – the EI therapists might possibly be really helpful to you in reccomending doctors/tests, or other resources, because they have seen other children with similar problems, and I think they actually understand things of this nature better than docs do. So, it sounds like you are doing the very best job possible already, and I wish you the best of luck finding the right docs and hope your little guy gets better and better. Glor

March 18, 2006 at 7:58 pm #4180

Anonymous
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With a few exceptions this sound like Tyler’s symptoms to a tee. Gaining weight (he is 95th percentile too) red around anus, red face, gassiness, sandifers the whole nine yards. We too are struggling for some validation. I saw that you said that you were about an hour from Philly. Wondering where you live. We are in the Lancaster area. We are looking for a good GI and I wanted to find out how things were with the one in Philly. Also if we are close it could be good support system. Hope things are improving for you.

March 20, 2006 at 12:03 pm #4266

Anonymous
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Just chiming in as another near-Philly refluxer with bad doc experiences. I feel like we should make a list of who’s good and who to avoid.

We drove from West Chester to Abington to see Dr.Baldassano. He was awful! We waited an hour to see him (after they called and asked us to come early because they had cancelations), he spent all of 5 minutes with us, told us to continue doing what we were doing (which wasn’t working) and come back in a month! When I mention our sleep issues he said that wasn’t due to reflux and that we were spoiling our DD.

So don’t see Dr. Baldassano! We’re scheduled to see Dr. Liacouras next week – have heard good things about him.

March 20, 2006 at 6:57 pm #4308

Anonymous
Inactive

FYI- Geissinger Children’s Hospital is very good. We saw Dr. Maksimak who TOTALLY CHANGED OUR LIFE! (It must be nice to be doctors that actually help…I certainly give them an ego boost when they help!). He actually discovered that it was old hardened stool that my son could not pass that was causing the arching, screaming and stiffening. He put us on Miralax and I have a totally different child. It was also contributing ot the reflux. He explained that when you’re plugged up in one end…it goes back up the other end. We still have a reflux issue maybe every other day or so. But we are off Reflux meds entirely and on constipation meds only.

March 20, 2006 at 7:03 pm #4309

hellbennt
Keymaster

(reminder for everyone to please post it all- the good, the bad & the best, here: Looking for GI: https://www.infantreflux.org/forum/forum_posts.asp?TID=660)

& here’s about fighting for insurance to cover formulas:Going to the Top: https://www.infantreflux.org/forum/forum_posts.asp?TID=2607&a mp;a mp;KW=going

hellbennt2006-3-20 19:4:57

March 20, 2006 at 8:19 pm #4313

Anonymous
Inactive

Great news for you and Mason! How often is he on Miralax and what dose? Miralax helped us greatly too.
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