**Note to self**DOCTORS DO NOT WANT TO HELP!

[Handsomesmomma]

You know I really don't expect much from our ped with regards to Jonathan's allergies/eczema, but I DO expect a hell of a lot more from a specialist!!!
We have been to see him four times in the past six months and all he is interested in is giving me more and more medication to make the symptoms go away. He is not at all interested in pinpointing the triggers that exacerbate the problem at all. Actually at Friday's appt he just came right out and told not to drive myself crazy trying to track down all of the allergens. I could not believe what I was hearing so I actually had to repeat what he said back to me for confirmation.
Yup I heard him right :

I so badly wanted to tell him that HE should come and take care of Jonathan while he is awake all night scratching and crying and cannot be consoled. Or maybe he would rather fight him all day while I am trying to change him or put lotion on him for the millionth time or maybe he'd like to be the lucky one that has to look at his sore red skin for the past 14 months.
To tell me just to forget about solving my son's problem is just ignorant as far as I am concerned. All he wants to do is "put a bandaid on it." He gave me yet another new Rx for a special mix of Aquaphor that contains menthol and FIFTY times the strength of the steroid(2.5%) he is using now. He wants him to use it twice a day. We are now using .05% steroid only when needed, not daily. I refuse to give him steroids twice a day!

I have been keeping a food diary for the past month of everything we eat (nursing) and have found a few things that I am pretty sure bother him. Tomato and corn are pretty definite even though he tested negative to corn I think he is sensitive to it.


It just PISSES ME OFF TO NO END! He was not interested in testing him for anything else now either. We suspect dust and mold too so we are taking steps to make that better in the house including buying items for our mattress/boxspring and pillows and really trying to keep up on the dust.

This may be something that is chronic and lifelong with him so I am really trying to be conservative with meds just in case, esp steroids.

I guess I really should have seen this coming

I am SO getting a second opinion!!! We go for a well baby with his ped next month (YAY ) and I am going to see if she will order an ALCAT.

[changingseasons]

Just wanted to send some hugs. I have SO been there, with almost every single doc we've seen. It's really frustrating. Why can't these 'professionals' be even half as concerned about getting your LO healthy as you are? It boggles the mind.

[Chinese Pistache]

That is just so insane, and yet completely unsurprising.

I hope hope hope you get the ALCAT scrip!

[ellasmama2007]

it just sucks!!! i cant even say anything else...

[4Blessings]

Not every doctor is a good match for every patient.

Sometimes it takes a few tries. Or a dozen to find a good one. BTDT.

Good luck!

[ASusan]

So sorry this happened to you. And, I am grateful for the forum here because there seem to be so many more answers given by moms than by MDs.

Was this an allergist you went to? Please tell me no.
It sounds like the pediatric dermatologist that I went to last month.
I won't hold my breath waiting for our ped allergist appointment, scheduled for Nov.

[Handsomesmomma]

Yes this is our allergist that we have been to four times in the past six months! He is the one that tested my son originally on our initial visit when he tested positive to peanut, wheat, egg yolk and white and milk. He is also the one that commented that at that time he had moderate to severe eczema. He is well known in our area too and we have to travel one hour each way to see him. It just frustrates the hell out of me that I am trying SO hard to help my son and he is so cavalier about it!!! Why the hell am I not eating wheat, peanut, egg and dairy since we are just going to medicate him to such an extreme. I know the next time I see him in Oct and say again that I am not following his recommendations he is going to call me on it. I did not give him the ton of Zyrtec that they recommended either and he was not thrilled with that either. I called our health insurance too to see if I can actually see another allergist w/o a referral from our ped and that is a big no go too! Well at least I will get some use out of that well baby visit next month
I actually had to fight back tears when he was saying that and inside of me I was like "I am already crazy with all of this and you are just making it SO much worse!!!"

He does lots of research in his office and I always see ads for it. He was way more interested in the fact that Jonathan had a fever and his skin looked beautiful due to the fever and the eczema returned with a vengeance after he was well. I heard him discussing with a colleague the idea of a study about it since he had only heard of this once before. I really think he is just in it to document it.

I have no intentions of going to a dermatologist again either. That was a HUGE waste of time as far as I am concerned.

Thanks for the hugs ladies I have learned WAY more from all of you in the short time I have been here

[ACsMom]

Wow. I'm so sorry you're having to go through this. Doctors in this country do not seem to be "healers." They only have a couple of tools in their toolbox (pills and procedures) and if you're not helped by either one of those, then they treat you like it's your fault. And it would bother me if the doc was looking at my child like an interesting new species of insect, something to be "studied." Uggh. I hope you are able to find someone who can help you guys.

Sending you prayers and empathy and

[LaurieG]

Mama. I totally know your frustration!!

[mommydancer]

I was given the same advice...just feed him lots of different things, and stop trying to figure out what he reacts to . I went (Huh?) "but doesn't continually exposing him to an allergen sensitize his system and continually cause inflammation and damage?" His response? "Well, yes. But it's just too hard to figure it out. No one on the planet will be able to tell you everything your son reacts to." I just felt really failed and disrespected. Here I have been going without so many things...for over a year now...and this guy is going to tell me it's too hard. Thanks for the support. Obviously I am "up" for the challenge of things that are hard. I wish they could be more supportive when we're trying so hard ourselves. I am really sorry this is going on. I sure hope you find a way to switch.

[Handsomesmomma]

"Well, yes. But it's just too hard to figure it out. No one on the planet will be able to tell you everything your son reacts to."

If I had been told that I seriously would have just got up, said our work here is done and left!
I cannot believe someone actually said that to you. Do you still see him?
That is just so insensitive and callous!

[pokeymama]

I hope this quoting works!

[QUOTE=Handsomesmomma;11753699] I know the next time I see him in Oct and say again that I am not following his recommendations he is going to call me on it. I did not give him the ton of Zyrtec that they recommended either and he was not thrilled with that either. [QUOTE/]

I don't know if you've seen my CPS sob story but one of the agreements I made before they closed the case was that I would follow all of the doctors recommendations rigorously. I don't know if I would have done that if we had a mainstream ped, though. She's holistic and got us the ELISA testing, but one time I told her we hadn't started epsom salt baths when he turned up with staph that she told CPS. (I just delayed a few days because we were out of town and had forgotten to get epsom salts at the store, so I waited until we got home.)

We are also doing Zyrtec to try and relieve the itching and she thought we had stopped doing that as well. We had, temporarily, but started again when we realized John had rotavirus and it wasn't an allergic reaction. We have tried to switch off the Zyrtec, as John was still itching, but he was worse without it, so we started back up again. We are familiar with withdrawl itching, so it could be that, but we'll stay on it for now if it keeps the itching from getting worse. Better than steroids!

Originally Posted by Handsomesmomma

He does lots of research in his office and I always see ads for it. He was way more interested in the fact that Jonathan had a fever and his skin looked beautiful due to the fever and the eczema returned with a vengeance after he was well. I heard him discussing with a colleague the idea of a study about it since he had only heard of this once before. I really think he is just in it to document it.

That's very interesting, as John's eczema started clearing big time when he got sick, too, but then came back. We had thought it was due to the Zyrtec (which puzzled me, as I didn't think it would affect the rash, just perhaps the itching), but when we started that again, it didn't clear again. I have this very naive theory that his immune system had bigger fish to fry and "ignored" his sensitivities until the virus was gone.

Anyway, my sympathies! DH has mentioned about going to an allergist, but I think the ped is really doing all that an allergist would do, perhaps more since she's holistic and trying to treat the cause.

[WC_hapamama]

re: eczema clearing during illness... that doesn't surprise me. Eczema is an immune response, and if the immune system is busy fighting something else it might give the skin a break.

I had a similar experience with a dermatology PA... more willing to treat the symptoms than finding what's causing the symptoms.

That said, we've since found a wonderful allergist.

[elmh23]

Has he tried testing for any enviormental allergens? My kid looks HORRIBLE when Juniper is blooming and he's outside in shorts/short sleeves. The rest of the time, he's great. If Jonathan is allergic to SEVERAL things that all bloom throught out the year or mold and your house has mold, then his skin will look really bad. Can you get a new allergist? That one isn't doing his job if he isn't looking at enviormentals and mold as a possibility.

[mommydancer]

Originally Posted by Handsomesmomma

If I had been told that I seriously would have just got up, said our work here is done and left!
I cannot believe someone actually said that to you. Do you still see him?
That is just so insensitive and callous!

No, they have a way of closing your file when you stand up to them. I told him I hoped he was wrong about that, but if he was correct that it meant he and his cohorts weren't doing their job...that lots of kids have food reactions and someone ought to be studying it. Then his face got like and : The one benefit of going to see the guy was that it cemented my pediatrician's belief that I have tried what specialists he's asked me to and none of them can help. So now when I ask for something or disagree w/ him about something, he's respecting my position more. Like I've shown him I am reasonable and know something.