I am devastated

I’m so sorry that you had to go through that horrible experience. What dose of Prilosec is he on and is it a flavored compound made by your pharmacy? I’m sorry if I’ve already asked you this before, but I talk to too many people about this to keep track. This could well be the key to his problem. Also, could you give me his current weight?

I am SO sorry that you had such a terrible experience. I can understand and relate to how upsetting it all must have been. As a parent its so hard to live day to day with a distressed child and your so hoping and praying that a doctor – especially a specialist will be able to relieve you of some worry and take control of the situation for you. That is absolutely rediculous that he would suggest a. your child was trying to get attention and that b. you weren’t smart enough to decipher the difference!!! You should write a complaint letter never mind get a new PediGI. If your pedi recommended him I would make sure I passed on that you were EXTREMELY dissatified.

I’ll never forget how alone and frustrated I felt after seeing the GI specialist for the first time when Sophia was 6 months. In the long run it was a good experience because it was such a slap in the face that I realized that I was the one who had to be the advocate for my child and that no one not even a specialist was going to go the extra mile for her.

By the time the specialist was done treating me like one of the herd he had upped my daughters Prevacid, ordered an upper GI with a follow up probe if necessary. I was disgusted. . .the visit was a whole 20 minutes and he didn’t confirm or get into any of my concerns. My daughters issues were extreme irritability, some digestive irregularity, gassiness in the early months, a total and complete inability to lay down flat, back arching, projectile vomiting, no ability to self soothe at night (she slept on me for the first four months and then in a swing on HIGH for another three months), and constant night wakings (8-12Xs a night). The pedi gi said that the night wakings and extreme irritability weren’t typical of correctly treated reflux but he also discounted my questioning allergies. He said she’ll grow out of it all and bye bye. I waited two months to get in and three hours for that appt!!!!

Well you know what, she did grow out of it but we went through a lot of pain and suffering before that happened. It makes me so mad still when I think of all of the times I questioned doctors along the way and how none of them thought to examine all of the factors involved never mind consider our family unit as a whole. If I were you, I would go with my mothers instinct .. .thats what I did and it has never lead me astray. Despite my hubby’s wanting to, I did not agree to any testing. I also found a better pediatrician who was willing to work with me on the meds side of things and was also willing to examine other factors that were contributing to Sophia’s reflux and night wakings. I never went back to the GI again and have never felt bad about it.

The change wasn’t a quick fix but it did lead me to self-diagnosing Sophia with MSPI which lo and behold was the issue in the end. She stopped being irritable as much and the night wakings decreased dramatically once her diet was regulated. Shes been off meds since 18 months. You need someone in the medical profession that will work with you not lecture you. Your where the buck stops with your child and don’t feel bad about saying so. I would be leary of never testing if you’ve got known DGE going on but you know if hes symptomatic of that or not so its a call you need to make.. . if your uncomfortable with it, leave it as a possibility and find someone else who will have a respectful opinion on the matter. .. not just a general diagnosis like that yahoo you saw.

Have you ever tried omitting milk/soy from Mason’s diet? How bout pushing your pedi to refer you to a good allergist? As you can see by my dd’s symptoms they weren’t typical of MSPI but it was the case in the end. Even though its not the most popular route – I say always go the least invasive route first and then do testing when its absolutely necessary. Just because a pediGI who sees it as common place suggests testing doesn’t mean its absolutely necessary.

Big hugs. .. its gets better I promise.

~Liz

lovemysophia2006-2-1 13:58:21

I do agree with Ann Marie, find yourself a new Peds GI but before you go to another one since it typically does take a long time to get into one, get the PH probe done so you have some answers and you can bring the results to the new MD. When we bought Alexis to the Peds GI she was gainning weight fine, didn’t even spit up, and Upper GI showed everything was normal, but given her history of fighting bottles, not sleeping, arching the GI did agree to the reflux and started her on PPIs. We never did the PH probe since he believed she didn’t need it, but I truly wished we did to see the serverity of her reflux. I rather know what we were dealing with than the unknown.

We did get it covered by insurance even though Dylan was gaining weight. Our ped wrote the letter of medical necessity and we had it covered till over a year. At one point we did have to fight them a little, but it was still covered. There are laws in the state of CT that helped us as they were REQUIRED to cover it, so I would check the laws in the state that you are in.

Hang in there! You are doing a great job and you will get through this!

Ann Marie

What a stupid ped gi!!!!! He was so out of line. I am so sorry that he was your first experience of a ped gi. There are really some great ones out there! As for the ph probe it may help your case out with this dumb guy!

I’m so sorry to hear that your doc was such an ***!!! I too would do the tests- not to see if it’s behavioural (like your doc suggested), but to see how severe the reflux is and to make sure that his esophagus isn’t ulcerated (you’ll need to get a scope done for that, like Christine mentioned). I know how awful it is to wait so long for these appointments only to be dismissed by these idiot doctors who think they know everything, and tell you that everything is behavioural. My docs have also been suggesting that Hailey can’t be in pain because she’s on a high dose of losec, which is why I’m now waiting to see a new doc. I think sometimes (most times) we are actually the “experts” on this topic and know more than the docs. That being said, it’s so annoying how you have to stroke their egos and pretend like you’re the idiot and they’re g-d. I would find a new doctor for your little one as soon as you can. Hang in there!!