Home › Forums › Infant Reflux Support › Boo-Hoo! I need YOU! › Where do these Dr.’s come from??????
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March 6, 2007 at 1:22 pm #26690
Anonymous
InactiveOk, I think I may have calmed down enough to write this post!!!
Yesterday we went to our follow up appt. with the allergist and found out we were seeing a new doc. After waiting an 1 hour 20 min and that was just in the room the doc comes in. It was the same doc that sat in with the head allergist in his last appt. and did not know what a pomegrante was (come on an allergist that doesn’t know what a food is). Anyways he starts right off that because Trevor is now 19 months old that his symptoms are no longer allergies/intolerances related ie. arching his back, unable to sleep, mucus in stools, constipation, diarhea, refusing to eat, etc. He didn’t come out and say it but it appeared he was leaning towards behavoral. What does this dr think that a 19 month old is going to walk in and tell him my gut is killing me!!!!! I told him that I disagree because if you remove the food that is being introduced and go back to the few foods he can eat within 24 to 48 hours he is back to his old self sleeping 12 hours at night & taking almost (2) 2 hour naps. He then says it is all coincidence everytime this happens.
Then he asked what was he able to eat since his last appt and I said apples. I told him the first time he was unable to eat them but when we came back through to try again that he is doing ok on them. He said that was considence too because it is impossible for anyone to have an allergy/intolerance to apples. Come on I am sure there are people out there that has problems with them. He also told he that he can not be MSPI anymore at this age that the only thing he might be is lactose intolerant to take him off the Neocate and put him on a soy formula.
He also said that he wished that there was a placibo for foods to give him. Does he think that someone at this age is going to do this everytime a new food is given to him. This kid comes up and tells me “to share” what I am eating or licks his lips at what you are eating because he wants it!!!! I told him we do not have a problem giving him food it is what happens after. I told him he has had a runny nose for 2 1/2 months and the ped thought it was an enviromental allergy he said no a cold end of converstation. I told him the meds they gave him had corn syrup in them and every single time we gave it to him 1-1/2 hours later he was screaming in pain. We took the meds away and it quit. He looked at me like I was from some other planet. I explained that he was able to eat pinto beans for 5-6 weeks and then something went wrong. It took 4 days before he was better. I asked does this usually happens because this is twice that it did and he said no coincidence.
We talked about his weight because he lost some again & he thinks it is fine because the last time he made a jump on the charts. I explained to him for 14 months he never gained any and then one time he does and nobody wants to see him again.
This was about a 5 min conversation so I started to get into with him & tell him I was done with appt. I told him that we have done all this on our own for 19mths & we sure didn’t need his help now. That this hospital is a complete run around like the others pushing us back and forth to different depts hoping that one day he will out grow it. He then has the balls to say there is no charge for this appt.
I just don’t get it because 2-1/2 months ago the dr said don’t expect any improvment for a couple years and then he should outgrow it. Stick to the basic foods and keep rotating and this loser just comes in and says this! Did I miss something that says at 19 months kids no longer have medical problems?
We have pretty much used up our options on drs in our area & we were not thrilled with the head dr before this guy. I just don’t know what to do for him anymore. Every time I look at my sons face I feel like I have failed him. It is so depressing to keep walking away & have no encourgement, help & support for any drs. I worry every day what kind of problems he might have when he gets older because I don’t know what I am doing anymore!!!
K&T’s Mom 2007-3-6 13:47:41 March 6, 2007 at 1:40 pm #26692Inactive
How sad for you and your little boy. I feel so bad for you. I have heard of at least one or two babies on this board who were allergic to apples, so evidently it’s possible. How could this doctor believe that everything is a coincidence?
Did you happen to see the latest threads on allergies. I’ll see if I can find them for you. Maybe they will help some.
https://www.infantreflux.org/forum/forum_posts.asp?TID=7728
Has anyone ever considered that he may have IBS (Irritable Bowel Syndrome)? I talked to a mom a few months ago who’s infant had reflux and IBS. I didn’t know babies could have that but she said her little girl did. The consipation and diarrhea makes me think of that, although that can certainly be from MSPI as well.
Has he ever been tested for Celiac?
I’m sorry….I wish I could be more helpful. I hope some of the other moms here will have some better advice for you. I’ll say a prayer for Trevor.
March 6, 2007 at 1:57 pm #26693InactiveChristine
We are going to “one of the best hospitals in the country” that is what I have been told and the only thing they have tested him for is CF (thankfully it came back negative). This is our 3rd allergist, GI & ped. He was tested for Celiac when he was 10mths old it it too came back negative. The head allergist talked to us about it in Dec that he hadn’t ruled it out but then this guy had nothing to say. From what I have been told that they need to be on a diet prior to testing and he wasn’t at the time only Neocate.
Thanks for the suggestion on IBS…I’ll do some research on it.
March 6, 2007 at 2:04 pm #26694InactiveI’m so sorry that you had to go through this. I know from our experience as well what a terrible letdown and disappointment it is to wait for these appointments, and then to be told that it’s behavioural. Actually, a letdown and diappointment is a major understatement. This same thing happened to us at our last GI appointment, and I was so frustrated and felt so lost and defeated by the whole thing that I actually CRIED in front of the doc. I was mortified.
We’ve also been through so many doctors and specialists that I often feel like we’ve exhausted our options. But I also know that there has to be someone out there who is willing to take a look at our situation and try to help us.
I also post on another board, and there’s a mom on there who has a daughter with reflux and allergy symptoms. She’s over 3 years old, and her last visit with her regular GI ended with them telling her that there’s nothing wrong, it’s behavioural etc. She got in to see a new GI who thought that things weren’t right and that more testing was warranted, and after another endoscopy, they found out that she has a really bad case of EE!!! If that mom hadn’t kept going and pushed for yet another docs opinion, then they might never have found out.
Please don’t let this doctor discourage you. There is someone out there to help Trevor.
About the behavioural piece, this is something that really makes me angry. I know what parts of Hailey’s behaviour is “behavioural” and which parts come from the fact that she has reflux or that something is bothering her. I’m sure you know that too. Mothers can tell when their kids are playing them for attention, and how can you will yourself to have diarrhea or constipation?!
Sounds like you just got a bad doc who made his conclusion after reading Trevor’s file before you even got into the room.
I would PM Anne (or look up some of her old posts), and see if she can help you out at all. Lucas has had symptoms similar to Trevor from what I understand (sleep problems being a big one), and allergy tests came back negative, but I believe that her allergist recognizes that there are severe intolerances that he is dealing with. (Sorry Anne if I’m misquoting!)
HUGS.
March 6, 2007 at 2:13 pm #26697InactiveI just wanted to add that we are also apparently going to “one of the best children’s hospitals in the world”. Funny!
We go to sick kids hospital in Toronto.
I often wonder if they don’t take our case seriously because they’re so used to seeing very very sick children, and reflux just isn’t a big deal to them.
We started out going to a smaller hospital, and our ped GI there felt that our case was too severe for her to manage.
We’ve seen 3 ped GIs, a chief of pediatrics who specializes in feeding problems, an infant psychiatrist, a pediatric psychologist who specializes in feeding problems, a naturopath, an osteopath, 2 OTs, a PT, an SLP, and 3 different dieticians. Because we’ve been seen by one of the GIs from the “best” team in our city, no other GIs want to take us on at this point, and even when they do, our file, complete with the previous doctor’s comments that there’s nothing wrong, the mother is crazy, and the child has behavioural problems go along too, so they’ve probably formed their opinion before we even get there.
But I figure there has to be someone out there that will do the testing that Hailey needs (a probe and a sleep study) so we have to keep on looking.
Anyhow, my point is that sometimes what is considered the best of the best, aren’t the best by our standards.
Where do you live and where are you going now? Maybe someone on the site can help you to find a good allergist that they’ve had luck with and with decent bedside manners.
March 6, 2007 at 2:23 pm #26700InactiveLori
I almost lost it infornt of him and cried yesterday too! Yesterday driving back home my dh said nothing but held my hand because I was such a mess. He keeps saying it is a waste of time to go to these appts. I try and tell him from reading things on here that there are people that do get help. I came home yesterday & thought that it might be me that is crazy because of how they make you feel. I look at Trevor and cry because of what a miserable life he has had and why am I not getting him the help he needs.
Something in the me keeps coming back to EE even though he had and endoscopy done when he was 10 months old. I tried to tell him that I am with him 24/7 and I know when something is not right.
Thanks for all the support.
March 6, 2007 at 2:32 pm #26703InactiveIt sounds like we are going through the same things. We have seen the Chief of Peds at one hospital. At our current hospital the GI & Allergist are the heads too. We only have seen one dietican & that was the biggest waste of money I have done.
I think you are correct by saying that sometimes what is considered the best of the best, aren’t the best by our standards. So true!!!!
We are going to the University of Michigan-Motts Childrens.
It amazes me how you do it sometimes!!!
Darlene
March 6, 2007 at 2:58 pm #26704InactiveLike I said, don’t give up. Even though it is so frustrating to wait for these appointments only to be belittled. But you are not crazy. Also, Trevor is your second child, and you have an idea of what a “normal” experience is like. I don’t much about EE but I don’t think it will usually show up if they’re on neocate only. I could be wrong, but I think that the allergic food needs to be ingested for the eos cells to build up and be seen. I know that if Hailey is still like this by age 2 then I intend to do another scope. Right now the GI won’t do it, but I refuse to take no for an answer.
Our last GI appointment we were really put down and belittled by the GI, and I really carried the stress from that appointment around with me for a few days. I finally decided to brush it off and move on, and keep looking for help.
You are a strong person and a great mom, and Trevor is lucky that you are trying so hard to help him.
HUGS.
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