Tobie and her posse heading to the GI appointment.
Tobie here:
So Cole’s GI appt today wasn’t as fulfilling as Paige’s eye appt yesterday. In fact, the more I replay the appt in my mind, the more annoyed I become. We have been dealing with the same GI crew (doc and nurse practioner) the entire time since Cole was discharged from the hospital last year for weight concerns. We have been dealing with the same issues for soooo long now. Suddenly today it’s like GI woke up and actually heard me (us). All of a sudden the things we’ve been telling them are serious and need attention. Huh? I actually videotaped Cole pooping a few months ago so they could see how much agony he is in and they didn’t want to see it. Today I say he screams when he poops (nothing new) and our GI team says that shouldn’t be happening and can have long-term issues if we don’t resolve this and I’m supposed to call them if the new laxative doesn’t work. I tell them that Cole still eats like a bird (nothing new) and suddenly we’re referred to the PCH feeding clinic that I tried to get Cole into last year but I was told he wasn’t eligible for because he never had a feeding tube. Because if we don’t fix Cole’s eating issues now, he’ll have eating aversions that will carry forward to childhood, possible adulthood. We have had three? four? feeding specialists who have done absolutely nothing to help Cole eat solids. Also I was told today that Cole might need to see an allergist if he doesn’t start eating well soon to see if there are any underlying food allergies. We already have seen an allergy specialist on our own through our pediatrician (who actually acts on our concerns). Hello? GI? Are you listening to us at all? The best part of this story….there’s a six month waiting list to get into the feeding clinic. Thanks GI. Eric thinks we should discontinue seeing GI. I’m not so sure. I’d like to tell Cole when he’s in high school and 5′4″ weighing 120 lbs with a 270lb 6′6″ little brother that I did everything I could to help his growth. The good news: Cole had a huge jump in his growth curve these last few weeks (remember he’s now on the growth chart for actual age). Maybe he’ll continue this weight gain, start eating, and we’ll not need GI anymore. Wishful thinking? Worked for Paige….
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I am right there with you on all things you said in this post. The frustrations with GI’S Ours just keeps wanting to put in a feeding tube and not fixing or controling the main issue REFLUX. What do you give cole for calories aside from food? Our little man was just at the GI Mon. and weighed 20lbs. UGGG! Always the same thing!. Tracy
I’m so sorry that you guys have these ongoing frustrations w/ docs… and can relate since our own peed tends to flip around like that. There have been times when I’ve thought about switching docs in order to get 2nd opinions, and yet it doesn’t seem worth it to go through the entire history and all that we’ve been through. (And my guess is that there is not other GI’s nearby, given the specialty.) As a side note, Lessa is still under 20 lbs. Neither girl eats a lot (although peas seem to be a favorite now). But neither have huge constipation issues, either.
I am sorry….It seems like that happens a lot….I am assuming that you think Cole might be chronically constipated? It took me months to convince our GI that Sammy’s constipation was not typical and since he didn’t eat, couldn’t be treated with the common food remedies…I got so mad when various Drs kept telling me to give him blueberries or juice…It was like they weren’t even pretending to listen…b/c if they were then they would know he wasn’t eating solids and fluids were still so difficult to get in him….needles to say when he was 11 months old (and probably the 10th time I had verbalized concerns over crying while pooping, grunting so hard he was covered in sweat..etc….)that the Dr ordered an x -ray of his bowel….sure enough his stool was backed up into his small intestines…( and that wasn’t even a bad day)he was started on Medicine right away…. its still difficult to manage, but better….Its really important because think about it, I don’t know about you, but I wouldn’t want to eat if I was constantly backed up either…. In our case Sammy had another underlying problem diagnosed before the constipation that probably was contributing to it, so I believe that the Dr should have listened to me earlier….anyways, I am SOOOOO sorry that its taken so long to get heard, but its probably better that they get looked into….and the feeding, we started the paper work in June for a feeding clinic and our apt is mid Oct…..Sammy has been doing better so I am torn….you know how they are they eat “well” ( well being relative) one week and terrible the next, I don’t want to cancel it and then 4 months later, be like oh no, its not really getting better…..I still don’t know what we are going to do…for now the apt is on the books- Good luck deciding what to do…I hope the Drs. Can help speed the process since its their fault they didn’t listen to you earlier….
Aaargh, that sounds so frustrating. I will do some wishful thinking on Cole’s behalf!
I have a strong feeling that we are (have been) seeing the same GI dr.:(
My husband is like Eric and doesn’t want to go back anymore!
I haven’t posted in a long time but I thougth I would this time. Ella came home on a feeding tube and she was supposed to be seen by the PCH feeding clinic and IT NEVER HAPPENEND!!!! Some guy named John (who I think was in charge at the time) never called us untiI I called him. Supposedly he is soooo busy that he can’t call people or try to get them in. When he did finally call (3 months later) I had aleady worked with Ella so much that she was off the feeding tube, so I told him he was worthless and that I did all the work he should have been doing. When we went back for an eval. she was not eating solids well ( an anversion to textures) so the dr. recommended the feeding clinic again. I let her know what happened last time so she called herself and told them to put Ella at the top of the list for services. Well, another 3 months slipped by with no calls (even after I repeatedly called) , with me working hard with Ella to get her to eat (she would only eat for me), and she is fine now. We eventually got a call from John ready to set up a schedule for her and I let him have it.
Enough of my experiences with the GI people. I would agree with Eric on this one. Maybe bring it up with your pediatrician instead since they listen to you and maybe he/she can recommend a different GI dr. Are you getting EI services? They should be able to get you into speech therapy, even though it is not a speech issue but more of a feeding issue. We were eligible for that but they didn’t have a person available.
good luck
Suzan
g/g/b born 8-21-2005
my 24 week miracles
Is there another GI team you could see? Perhaps someone recommended by your Peed? These GI’s are obviously not listening. If he doesn’t get out of that pooping pain now, you’re going to have serious withholding issues when it comes to potty training!!! (My friend with a 5 yr old is having these issues!). Hugs!
PS> I LOVE these pictures!
Off the subject, I just figured out that the pictures are not longer water marked, is the added security a feature of your new Home?”
What an amazing journey you and your family have been on. I enjoyed reading your blog tonight. I can only imagine how high your highs have been and how low your lows. I cried when I read about your loss and thanked God that you are all doing so well now.
Like Sabrina said above, do your best to get the pooping issues resolved now. My son would push so hard he would vomit and nothing would come out the back side. He didn’t potty train until I forced him into it at 4.5 yrs. I felt like I had to scream at the Peed to get him to realize it wasn’t just a matter of giving him prune juice! My son is 7 yrs now and we’ve been seeing a Peed GI for almost a year. Not regular all the time yet, but SO much better!
I love the labeled picture!
Tob - it was great seeing you and the kids - and meeting Jessica. I can see why you all adore her. Just know it WILL be okay. Monday will come and go and you’ll make it. I’ll be thinking about you. xoxo