Doctors. Can't live with them... An upset mommy story.

[Spryte]

Anyone have any experience with something like this? What would you think, how would you feel? I am having mixed feelings.

 

I'm sorry this is long, maybe too long to post here. Feel free to tell me to take this long-winded story elsewhere. I'm just upset and looking for unbiased thoughts on it. DH is not unbiased, nor any of my family or friends. They've also never dealt with anything remotely similar, and maybe some of you have?

 

My kiddo has severe allergies and asthma, and we see a specialist for this. We have been patients in the same office since 2006, and except for the first meeting, we have never seen the main doctor. Until recently, we saw one of the other docs, who moved out of town unexpectedly. We were upset at the change, but thought it might be a blessing in disguise.

 

Right before his long-term doctor moved, my kiddo started having some issues - I won't go into all the details here - and having some strange episodes of uncharacteristic behavior. One of these episodes happened in the specialist's office, although none of his usual doctor's were there to witness it, only a nurse practitioner whom we don't regularly see (we were there for allergy shots, not an actual appt).

 

After this episode, the worst we'd seen, we mobilized every resource we could. We saw the pediatrician, we went to a neurologist and had MRIs, EEGs, you name it, and had a psych evaluation that lasted more than 6 hours - and we did it all very quickly with the help of our pediatrician, thankfully. Everything came back normal. Whew. Well, we did learn that he's gifted, but we suspected that. :)

 

We then pulled in my doctor, who uses some alternative methods to help with environmental allergens, etc. She identified that he has high levels of toxins - VOCs, lead, mercury, cadmium, BPA. She is helping us to work through those issues, and support his system. She is not doing anything radical - mostly vitamins, organic foods, some glutathione IVs to reduce inflammation. And chelating for the metals, but we have not started that yet. She was the *only* one helping us at that point.

 

Things were calming down, but there was still a sense of underlying volatility to our kiddo. We met his new (specialist) doctor, and she seemed very helpful, and positive about our alternative practitioner as well. About a week later, the new doctor called and said that she had done some research, and to pull our son off of one of his allergy meds immediately, that it could cause the types of behavior he was exhibiting. We pulled him off, and the results were astounding. After 3 - 4 days of what seemed almost like withdrawal, we had our normal kid back. We felt great about this, obviously. But we plan to continue to address the heavy metals, toxins, and underlying inflammation that we know is impacting our kiddo.

 

Today, we had a follow up with the new specialist scheduled, the one who pulled our kiddo off the allergy med. We were looking forward to seeing her, my kiddo had drawn a picture of her and wanted to give it to her. But - our appt had been changed to the main doc in the practice, and son's new specialist was nowhere in sight.

 

The main doctor, who is highly respected and a great doctor, apparently has taken on our son's case because she is doing research into the allergy medicine and its effect on children. She has presented a paper on it, and has documented my son's episodes. All of that is fine. Although it would have been nice to know we were seeing her rather than the doc we expected. This doc has asked us to document more, and share our logs of these events and the relationship to the allergy med. Fine, also.

 

Actually, writing all this out - it really seems innocent and fine.

 

But I left with a bad taste in my mouth, because this doc is very adamant that we *not* pursue anything regarding the environmental toxins that we've identified. She had a lot of negative things to say about the test results that showed high levels of lead, mercury and cadmium. She did everything but state outright that she thinks my doctor is a quack. And when she learned that my doctor is a family practice doctor, she clearly dismissed her. She wanted to know why I had seen this doctor, and why we trust her, and asked me details of my own treatment with this doctor. (I was taken off guard and shared more than I wish I had, and now I feel upset about that.) And *then* she directed every comment to my DH.

 

I don't know if I'm more upset that she seemed to dismiss me, or more upset that she seems to think everything is absolutely fine now that son is off of this med, and we can just continue on. Even without the med that essentially turned my son into someone else, I am not happy with the state of his care. Every year, he develops more allergies - instead of outgrowing them. And the only answer we get from this particular practice is "allergy shots" which haven't helped, despite years of shots and anxiety for my kiddo. We get his epipens, and inhalers, and shots, and we avoid his allergens. But that's it. There are no answers, ever. And I know that's the way it goes sometimes but I am frustrated.

 

At least my semi-alternative doc is looking into what might be contributing to son's developing these allergies and exploring options to help him reduce his inflammation. What she's doing is not going to hurt. And it might help.

 

Now I feel a bit like the big wig doc wants our son for her case study, but really doesn't want us to do anything else that *might* help because it will muddy up the waters of her study. While all *I* want is to help my son. Feels like a conflict of interest.

 

Am I just over-reacting to all of this? Am I way off base here? Did this doc just rub me the wrong way because she addressed DH instead of me? What she's suggesting - that we wait to do anything else - isn't all bad. Yet I still feel... icky.

 

Ugh.

 

Is it too early for wine? Maybe I just need to relax after the earthquake and before the hurricane?

 

(And thanks, if you read all this.)

[T'smom]

I read it, but I don't have any advice....only :grouphug:. I'm sorry you're dealing with this.

[KS_]

I think you need to weigh all the information you have and make a decision you feel comfortable with. I definitely wouldn't discount a dr that wants to use alternative treatments just because the new dr doesn't care for them. If it is because she wants to use the info for her study and you pursuing more treatments makes that difficult for her, that's her problem. You need to do what's best for your son.

[Once Again]

:grouphug:

[DusksAngel]

I have a real problem with doctors who look down on another doctor, especially one who caught a problem. Ok, ok... especially when it's one that I really like (love). Nor do I like feeling that someone is playing the CYB game at the expense of my child. And when I'm the one home with said child all day, you deal with me. (steps off soapbox)

 

Can you schedule with a particular doctor? If your gut is telling you this doctor isn't looking out for your child's best interests, I wouldn't see them. Either see another doctor in that office or find a different practice.

[Sparkle]

Given that I'm not a medical professional, I think what you're doing with your son as far as "alternative" treatments sounds good. I'd be leery of what the new doctor is saying - it almost does seem like she has a conflict of interest. I just last night finished reading Slow Death by Rubber Duck, which is all about environmental toxins and what they do our bodies, so I think you are right on track with treating your ds as you have been doing.

[catz]

I personally think going a more holistic road can be EXTREMELY helpful for allergy/auto immune disorders. I had great luck with a chiro, acupuncture, and supplements, etc dealing with food sensitivities and anxiety after my first child was born.

 

Can you request the original doctor you were going to see? Or maybe even switch practices entirely? During that time having a doctor that was supportive of alternative medicine made a big difference to me. I did drop a couple docs due to that. I totally think you should be able to feel comfortable sharing with your doctor without judgment. And unless he thought looking into the environmental stuff was actually dangerous I can't imagine why he'd want you to disregard that info. I think some doctors have their heads so into their own ego they can't see outside their own bubble.

[melissel]

I have a real problem with doctors who look down on another doctor, especially one who caught a problem. Ok, ok... especially when it's one that I really like (love). Nor do I like feeling that someone is playing the CYB game at the expense of my child. And when I'm the one home with said child all day, you deal with me. (steps off soapbox)

 

Can you schedule with a particular doctor? If your gut is telling you this doctor isn't looking out for your child's best interests, I wouldn't see them. Either see another doctor in that office or find a different practice.

 

I completely agree. I would, from here on out, book only with the doctor you like. If they won't let you do that, I would write a nice long letter about why you're leaving the practice and hightail it out of there. Stand firm on what YOU know, mama.

[justamouse]

:grouphug::grouphug:

[celticmom]

The main doctor, who is highly respected and a great doctor, apparently has taken on our son's case because she is doing research into the allergy medicine and its effect on children. She has presented a paper on it, and has documented my son's episodes. All of that is fine. Although it would have been nice to know we were seeing her rather than the doc we expected. This doc has asked us to document more, and share our logs of these events and the relationship to the allergy med. Fine, also.

 

Actually, writing all this out - it really seems innocent and fine.

 

But I left with a bad taste in my mouth, because this doc is very adamant that we *not* pursue anything regarding the environmental toxins that we've identified. She had a lot of negative things to say about the test results that showed high levels of lead, mercury and cadmium. She did everything but state outright that she thinks my doctor is a quack. And when she learned that my doctor is a family practice doctor, she clearly dismissed her. She wanted to know why I had seen this doctor, and why we trust her, and asked me details of my own treatment with this doctor. (I was taken off guard and shared more than I wish I had, and now I feel upset about that.) And *then* she directed every comment to my DH.

 

 

At least my semi-alternative doc is looking into what might be contributing to son's developing these allergies and exploring options to help him reduce his inflammation. What she's doing is not going to hurt. And it might help.

 

Now I feel a bit like the big wig doc wants our son for her case study, but really doesn't want us to do anything else that *might* help because it will muddy up the waters of her study. While all *I* want is to help my son. Feels like a conflict of interest.

 

 

 

 

I think that it sounds like your intuition is warning you about this doctor. I would probably not take my child to that practice anymore and go exclusively to your doctor but I have a very low tolerance for any garbage from doctors.

[GailV]

I would be upset at a dr. who treated me dismissively. My dh would back me up on that -- we have no time for doctors who act as though they're God's gift to mankind. We're reasonably intelligent people who can learn more about the issues being discussed, and deserve to be treated as such.

 

I also would be peeved that she's dismissing your other doctor's treatment ideas. She (allergy specialist) would need to point me to very specific studies showing why she feels these should not be pursued. Simply implying, "Because I said so," isn't good enough. Having said that, there are some tests for toxins that I wonder about the effectiveness of, and would want to research before getting chelation done.

 

Overall, the more you can do to optimize your son's health, the better. If that means improving diet AND giving vitamins AND taking him of a certain med, well, duh, that's what needs to be done.

[celticmom]

I think you need to weigh all the information you have and make a decision you feel comfortable with. I definitely wouldn't discount a dr that wants to use alternative treatments just because the new dr doesn't care for them. If it is because she wants to use the info for her study and you pursuing more treatments makes that difficult for her, that's her problem. You need to do what's best for your son.

 

:iagree::iagree::iagree:

[Kim in Appalachia]

:grouphug:

 

It would be my guess that the doc in question really dislikes/distrusts alternative medicine. Every person has a bias, and so do docs. He should not be so dismissive, but if he honestly believes such doctors are harmful, then he believes he is being helpful by blasting the other doctor. I think it is rude, but he probably believes he is right.

 

I would not take it personally. You are the mom. You make the health decisions for your child. It sounds like you are doing a great job.

 

My guess is that because it is a large practice you won't get a choice about who you see, but if you do make your choice clear.

[Mrs Mungo]

Was the medication Singulair? There has been a lot of discussion on this board about kids who have had problems on that med, including my son.

 

I think you are going to have to come to terms with the fact that many mainstream doctors think alternative medicine, such as chelating, is quackery.

[Alte Veste Academy]

But I left with a bad taste in my mouth, because this doc is very adamant that we *not* pursue anything regarding the environmental toxins that we've identified. She had a lot of negative things to say about the test results that showed high levels of lead, mercury and cadmium. She did everything but state outright that she thinks my doctor is a quack. And when she learned that my doctor is a family practice doctor, she clearly dismissed her. She wanted to know why I had seen this doctor, and why we trust her, and asked me details of my own treatment with this doctor. (I was taken off guard and shared more than I wish I had, and now I feel upset about that.) And *then* she directed every comment to my DH.

 

I don't know if I'm more upset that she seemed to dismiss me, or more upset that she seems to think everything is absolutely fine now that son is off of this med, and we can just continue on.

 

Now I feel a bit like the big wig doc wants our son for her case study, but really doesn't want us to do anything else that *might* help because it will muddy up the waters of her study. While all *I* want is to help my son. Feels like a conflict of interest.

 

 

I would feel the same way you feel. I bolded what bothered me especially. I downright rolled my eyes when I saw that she stopped talking to you and spoke only to your husband. I don't do condescension. :glare:

 

I would thank her for her time and interest, then firmly state (ad nauseam, if necessary) that you would prefer to see the new specialist you walked in assuming you would see again. Smile nicely, through gritted teeth, if that is what is required.

 

If you live in the eastern time zone, it is not too early for wine. :D

 

ETA: I am not speaking at all to the issue of chelation or the other treatments for toxicity, as I'm wholly ignorant of these things. I'm just not a fan of this doctor's treatment of you.

Edited August 25, 2011 by Alte Veste Academy

[Laurie4b]

There is currently a lawsuit that people are watching in which a parent is suing an alternative practice doctor for doing chelation on their son. The parent, having researched things, found that there is no evidence for chelation in the case of behavior problems, autism. etc. AND that it carried risks. They had not been told this by the doctor.

 

So I would not assume that the doctor is only interested in her study. She may be genuinely concerned about the science behind the other recommendations.

 

We've made some forays into alternative medicine for one of our kids. I would do your research very, very carefully. Look for real research, not anecdotal studies. Look for risks. If you are just doing good nutrition, etc. then great. If you are doing something that won't cause any harm but might not help and all you'll lose is time and money, you may decide to go for it. However, if there are possible risks, such as with chelation, I would be very careful. Look for peer-reviewed articles in respected journals. If it's not there, you'll have to weigh all the risks.

 

The fact is, your alternative doc didn't know about the side-effects of this med. and you saw a huge improvement from that.

[Trresh]

What medicine was he taking? I have a friend with a DD that has had several 'weird' episodes lately. She's on a ton of meds to control allergies and asthma. I'd like to pass your story on to her.

[LibraryLover]

Chelating is seen by many medical folks (even those interested in alternative treatments) as dangerous quackery.

Edited August 25, 2011 by LibraryLover

[*********]

My guess is that because it is a large practice you won't get a choice about who you see, but if you do make your choice clear.

 

I have no experience with the size of a practice determining who I see for regular, non-sick visits. In fact, a year or so ago, our pediatrician (who was in practice by herself when we started going to her) added another doc and a PA to her staff. When I made Zee's yearly check up appt, I did not specify who I wanted to see; I just *assumed* (yeah, yeah :D) we'd see our regular pediatrician. I was less than happy when we showed up and were greeted by the PA that we had never met before. I mean, it very well may have been the only time he saw the dr. that year. I would have liked to see the dr. we have a relationship with, and who is familiar with my children's health history. Now, I just make sure to specifiy that I'd like an appt. with that dr. Even if it's a sick visit appt. for the same day, I ask if our dr. is available; of course she's not always on such short notice, but it doesn't hurt to ask.

 

If my pediatrician's office would not honor my request for a specific dr. for appts made well in advance, then we'd be finding another office. We pay quite well (both directly to our dr. via co-pay, as well as indirectly through our insurance premiums) for the dr's service. I see no reason why a request for a specific dr. shouldn't be honored with enough notice. Of course, there's also the possibility that the dr. I made the appt with will be called out on an emergency; in that case, I would expect a call to see if substiuting another dr. is ok, or if I would like to reschedule (provided there's enough time before our appt. for such a phone call).

 

Wow, I guess I feel strongly about this. :D We *have* left a practice in the past for just this reason.

[Jennifer3141]

I did do chelation therapy for myself when I was undergoing infertility treatment. DH is a traditional medicine doctor (who sometimes is skeptical of the skills of FPs too) and he thought I was nuts.

 

I don't think it made one ounce of difference and after I really studied the science behind it, I got pretty skeptical too.

 

It's also not something I would ever put a child through.

 

Ask for the research to review and pay particular attention to double blind studies.

[Danestress]

No. It's not to early for wine. It's almost 5. Close enough:)

 

Anyway, I don't think you need a doctor's permission to pursue whatever avenues you think are worth pursuing. It's great she got him off the allergy med that was causing so much trouble. Even so, you are the people (you and your DH) who need to make the decisions about what doctors to trust and what treatments to pursue. You can't make a doctor treat the way you want. But you don't have to. You already HAVE a doctor who wants to pursue the heavy medal and other toxins. So do it.

 

Just communicate that you are doing it next time you are in to see her. You want all your doctors to have the big picture. But if she really pitches a fit about it, you are able to say, "Hey, we are going to continue to pursue X alongside the other things you are offering. If that is a problem for you, let us know. But so far, we really feel good about what we have decided."

 

As far as her addressing your DH, I understand that can be annoying. I wouldn't let it under my skin.

[Parrothead]

And *then* she directed every comment to my DH.

 

 

Everything you said is of concern and I'd quietly look for another doctor. But the above would make me walk out and never ever go back.

[WishboneDawn]

 

But I left with a bad taste in my mouth, because this doc is very adamant that we *not* pursue anything regarding the environmental toxins that we've identified. She had a lot of negative things to say about the test results that showed high levels of lead, mercury and cadmium. She did everything but state outright that she thinks my doctor is a quack. And when she learned that my doctor is a family practice doctor, she clearly dismissed her. She wanted to know why I had seen this doctor, and why we trust her, and asked me details of my own treatment with this doctor. (I was taken off guard and shared more than I wish I had, and now I feel upset about that.) And *then* she directed every comment to my DH.

 

I'm going to take it from that doctors POV. She's just learned that you guys are seeing a doctor who, I assume from your description, is a conventionally trained doctor yet is advising that you seek alternative treatments.

 

Chelation therapy in conventional medicine is only used for the removal of lead and generally does not look like it does in alternative medicine. It also is not free from side effects although those are relatively uncommon when used in accordance with FDA regs.

 

Chelation in alternative medicine and used for things beyond lead poisoning in not supported by evidence and is viewed by many in medicine to be nothing more then a placebo. It uses the agents in conventional medicine but I'm unclear whether the actual process is the same.

 

So that doctor is looking at that and is alarmed. To her, your doctor is administering questionable tests (and often those heavy metal tests in alternative medicine ARE questionable) and then a therapy that is not without some risks when it appears the solution, or at least a good part of it, is in sight with the removal of the meds your son was on. Good conventional doctors have an obligation to a) evidence based treatments and b) to first, do no harm. To this doctor is likely seems as if your family doctor is stepping well over the line on both counts.

 

As to how she seemed to dismiss you, she may well have. She may have let her concern for your son and about how your family doctor is treating him override her manners. Or, you may have come across as dismissing her concerns and so she turned to your DH.

 

All that considered, I'd take a breath, step back and consider her concerns. Your family doctor may be taking the wrong road on this. There may well be a reason to take good hard look at what she's advising and do a lot of careful, skeptical research on chelation. The specialist cound and should have handled it much better but that doesn't mean she's wrong in this. Chelation, like ANY treatment, has the potential to harm. And that harm could be physical but it could be in the respect that it adds stress to your lives or the harm could even be financial.

 

Don't take her behavior as offense and feel free not to visit her again but DO take her concern as a warning.

 

Good luck! :grouphug:

[BeckyFL]

I, too, feel weird about the whole chelation thing. My bf spent thousands putting herself and her daughter through all of that and I really don't believe it accomplished one thing. Her dd has type 1 diabetes and the Dr. almost made her feel that this was going to help her. It gave them hope, but of course her diabetes is exactly the same. She was very defensive about anyone even suggesting anything negative about this Dr.

Keep your eyes open and do some research. The other Dr. may have been trying to help.

[Spryte]

Thank you all for your responses. I am still upset, and will reply more thoughtfully later, but for now wanted to say thanks for your time and thoughts.

 

The med was Singulair. I would never, never want any child of mine to touch that med again. Or loved adult, for that matter. I wish we had known of its potential effects, that we had connected the dots sooner. We would have taken our kiddo off of that med a lot sooner, or never started!

 

If it's not too early for wine, I think I think I'll go throw something on to cook for dinner that requires opening a new bottle of wine. :D

[WishboneDawn]

There is currently a lawsuit that people are watching in which a parent is suing an alternative practice doctor for doing chelation on their son. The parent, having researched things, found that there is no evidence for chelation in the case of behavior problems, autism. etc. AND that it carried risks. They had not been told this by the doctor.

 

 

This bears repeating. Chelation does deplete vitamins and can have side effects ranging from a headache to kidney failure. If your doctor is saying it's harmless then that's a red flag.

[cloversandlions]

I have a real problem with doctors who look down on another doctor, especially one who caught a problem. Ok, ok... especially when it's one that I really like (love). Nor do I like feeling that someone is playing the CYB game at the expense of my child. And when I'm the one home with said child all day, you deal with me. (steps off soapbox)

 

Can you schedule with a particular doctor? If your gut is telling you this doctor isn't looking out for your child's best interests, I wouldn't see them. Either see another doctor in that office or find a different practice.

 

:iagree: Unless you need to act immediately on advice contrary to what this doctor advises, I'd chew on it for a couple of days. However, I strongly believe that it's almost* always advisable to heed your intuition. Based on what you wrote, I can definitely see why you would be concerned. In fact, as soon as you wrote that the doctor did not want you to pursue the other issues, the possible conflict of interest was apparent to me. That doctor may have legitimate reasons to doubt those alternative therapies and even those test results (I'd research those on my own anyway), but she might also just want a clear-cut and untainted research study. If you eventually conclude the latter, I'd probably want to leave the practice entirely. I'd never feel completely able to trust their total commitment to helping my child.

 

 

 

*There have been a few instances where my intuition gets a little muddied by an occasional knee-jerk reaction, so I have learned to step back (time permitting), get past the emotion of the moment, and view it from a calmer perspective.

[Supertechmom]

HI!

 

I just wanted to address the allergy shot issue. My oldest made absolutely no head way on allergy shots until the year we went gluten free. You know the course of you start few times a weekly, move to one week, then two weeks, then go monthly.... Well, we never made it past 2 weeks for YEARS. The child was on inhalers/pills/syrup combos every day with those blasted shots with a little improvement. Then when we all had to go gluten free due to the baby's issues, we discovered he had problems with gluten as well. Within the year, he was off of allergy shots and medication. Now he has the typical hay fever symptoms for a few days each spring and fall. Our allergist said it made sense to him. If you are reacting to something to begin with, then other allergies are just going to continue piling up and seem horrible until the underlying main cause is found and treated. Our underlying cause was gluten. Maybe there is a cause for your kiddo that hasn't been touched on yet. Gluten did not show up on any allergy testing so it was out of left field for us. It was just by chance we discovered it. Just throwing that out there in case it may help as I know those allergies are miserable!! :grouphug:

[Spryte]

Still thinking of this... can't quite bring myself to cook dinner yet. :)

 

Ok, so reading this, I am thinking that yes, probably the mere mention of chelation started a downhill slide, maybe it pushed her buttons, and she felt she needed to address DH rather than me. That could be the case, and it definitely helps to understand that. It gives me a better feeling.

 

To clarify, so no one is worried, we haven't chelated with IV as of yet. But we were looking into it as a possibility. We will do more research, I promise. :) Other than chelation, then, what are the options for addressing high lead, mercury and cadmium? Are there options? We are open to any and all. I don't think *not* doing something about the lead is a good plan, so we need to find some treatment. We were using Chemet orally, but apparently he is not absorbing it well, and it's having little/no effect, so we have decided to wait till Nov to pursue treating for lead, etc. So there is time to research and plan for the next steps. Any help there is appreciated - ideas, experience, anything.

 

For now, we are basically following the recs in the book Healing the New Childhood Epidemics regarding allergies and asthma. That's per my doc, who has an alternative bent. We eat organic, no sugar, no dyes, gluten-free, avoid his allergens. He takes a great multivitamin, and omega-3s. Probiotics. It is not terribly radical, although we have given him glutathione via IV, but only after researching and confirming that we felt it was a good idea.

 

What I have echoing through my head now is this doctor saying, about my beloved doc (long relationship there, and I have watched her evolution to accepting alternative meds), "Anyone can grow any plant in their backyard and say it will cure your child." And more. Which is true, and there is definitely snake oil out there. Probably when she heard the C word (chelation), it took her mind to a level of alternative health care that DH and I have not explored.

 

[sigh] I just want my son to be healthy.

 

Thank you so much, each of you, for the support. And the concern, too. It's all helpful.

 

 

 

Oh! ...and we *just* went gluten-free, per the semi-alternative doc's rec. Gluten hasn't shown up on any of the testing we've done. Maybe it's going to be helpful, too. I hope so.

Edited August 25, 2011 by Spryte

[ChristineW]

There is currently a lawsuit that people are watching in which a parent is suing an alternative practice doctor for doing chelation on their son. The parent, having researched things, found that there is no evidence for chelation in the case of behavior problems, autism. etc. AND that it carried risks. They had not been told this by the doctor.

 

So I would not assume that the doctor is only interested in her study. She may be genuinely concerned about the science behind the other recommendations.

 

We've made some forays into alternative medicine for one of our kids. I would do your research very, very carefully. Look for real research, not anecdotal studies. Look for risks. If you are just doing good nutrition, etc. then great. If you are doing something that won't cause any harm but might not help and all you'll lose is time and money, you may decide to go for it. However, if there are possible risks, such as with chelation, I would be very careful. Look for peer-reviewed articles in respected journals. If it's not there, you'll have to weigh all the risks.

 

The fact is, your alternative doc didn't know about the side-effects of this med. and you saw a huge improvement from that.

 

:iagree: Whatever treatments your kid gets now probably won't mess up her study. She has the logs to document the adverse reaction to the old allergy medication. She's stating that he's ok now so she doesn't seem to be pushing a new drug that she can study so I don't see the conflict of interest here.

 

Aside from the horrible bedside manner do you have any reason not to trust the new doctor? She did catch a pretty serious mistake from the GP

[TravelingChris]

I am going to be blunt. I think it is highly doubtful that your son has all these toxin levels. Where do you live? Have you been letting your son eat paint chips of old paint? Lick lead pipes? Where is he getting poisoned with cadmium? Are any of you using oil paints and letting him get into them?

 

By the way, it is not only not unusual for an allergenic person to get more allergies, it is probably more frequent than not getting more allergies. Why? Allergies are the result of an overactive immune system that is misdirected. Having the allergen present kicks up the immune system even more. Eventually more things cause reactions. All of us in our family have ended up with more allergies that we started with. In my case, I started with one drug allergy and am now up to seven. It certainly isn't because of any metal poisoning or anything like that.

 

As others have mentioned, chelation doesn't help with allergies and it has potentially bad side effects. I can certainly understand why the doctor would warn you against doing something like that.

[bettyandbob]

Forget about the merits of chelation here. She's not showing you respect. If she has concerns about chelation she would share them in a professional manner. And she would not ignore you and talk to your dh.

 

If I was in your position I would either

1. find a new practice

2. schedule appointments only with the other doctor.

 

I've had my share of doctors who act dismissive. I had a highly respected neurologist almost overdose my dd on seizure meds. He was so arrogant. He refused to make any effort to truly dx dd. If I'd listened to him, dd would at best be still on siezure meds and having tons of siezures and most likely serious learning issues. Really, I think he might have killed her, because of his own stupid arrogance. I didn't listen. I had to beat down doors trying to convince our ped and other specialists to look a the problem differently. We found the problem dd hasn't seen a neurologist in 8 years, her siezures (hundreds a day) stopped 9 years ago based on new dx and new treatment plans.

 

Really, I won't deal with a dismissive or arrogant doctor. IME, such a doctor makes mistakes simply because he/she thinks she knows everything.

 

I've also done chelation with my oldest. It didn't hurt him, but I can't say it helped.

[Mommyof4ks]

It is annoying to have to see different docs without being consulted first. That is a problem with some specialty departments. We would see a different doc every time we took our son to the peds oncology department for years. On the one hand it was nice to get different perspectives on things, but I do understand how frustrating it is when you are being told totally different things by various docs. It is hard to decide what is best for your child. There is a reason it is called practicing medicine. :D

 

If taking your child off of the med made a big difference, then I would assume that was the culprit. That is not to say the vitamins and supplements are not helpful for his allergies, but do try to have an open mind about what to do as you move forward. It is hard in the moment, trust me I got angry more than once at the docs, but ultimately we are just trusting one person's opinion over another and hoping for the best. This is true of both modern medicine and alternative medicine. We have had success and failures over the years with both.

[WishboneDawn]

To clarify, so no one is worried, we haven't chelated with IV as of yet. But we were looking into it as a possibility. We will do more research, I promise. :) Other than chelation, then, what are the options for addressing high lead, mercury and cadmium? Are there options? We are open to any and all. I don't think *not* doing something about the lead is a good plan, so we need to find some treatment. We were using Chemet orally, but apparently he is not absorbing it well, and it's having little/no effect, so we have decided to wait till Nov to pursue treating for lead, etc. So there is time to research and plan for the next steps. Any help there is appreciated - ideas, experience, anything.

 

First, is this something another doctor has tested for and confirmed? Before going through with any treatment I'd want a second opinion and another round of tests from a different doctor. At the very least get a copy of test results and something about what the tests actually were and run that by another doctor to see if they have merit. This IS something that happens, people get diagnosed with having high levels of heavy metals while in reality, they don't.

 

What I have echoing through my head now is this doctor saying, about my beloved doc (long relationship there, and I have watched her evolution to accepting alternative meds), "Anyone can grow any plant in their backyard and say it will cure your child." And more. Which is true, and there is definitely snake oil out there. Probably when she heard the C word (chelation), it took her mind to a level of alternative health care that DH and I have not explored.

 

 

I suspect she got very concerned for you son and your family.

 

Another spin on this might be that although your initial visit didn't go well you might find that if you opened up to her a bit you might find she's a passionate advocate in the long run. What seems like a disadvantage in one meeting might be to your benefit in the long run. :)

[amo_mea_filiis.]

The med was Singulair.

 

That was the first thing I thought reading your post. My dd took singulair for years and had no problems. My ds has had a few different reactions to the drug, 2 of them being severely behavioral.

 

I'm really surprised that ANY Dr wouldn't know this. It really seems common knowledge at this point.

[CourtneyMI]

I am with dawn on this one. I think the doctor was more surprised about you being counseled on a potentially dangerous therapy rather than wanting to keep your son for her study. She didn't ask you to put your son back on the singulair did she? I think she just wants the help showing that this medicine can have potentially bad side effects on children.

 

A someone who has run that road before, with the severe asthma and allergies, you are going to be hard pressed to find a top notch doctor who doesn't believe they are God. Almost all of the great doctors I have encountered have a horrible bedside manner. My pediatric pulm was a God awful person but he kept me healthy and alive during puberty when the changes in hormones affected my asthma and allergies horribly. As gently as possible because I am truly not trying to be snippy, I would rather have someone treat my asthma and let me live my life as normally as possible than see someone who was second rate but nice. I have a lot of nice people in my life. I don't expect my doctor to be one of them.

 

Whatever you decide, I am sending :grouphug: and a lot of prayers your way. Asthma is so hard to control and terrifying for all involved. :grouphug::grouphug::grouphug:

[WishboneDawn]

I am going to be blunt. I think it is highly doubtful that your son has all these toxin levels. Where do you live? Have you been letting your son eat paint chips of old paint? Lick lead pipes? Where is he getting poisoned with cadmium? Are any of you using oil paints and letting him get into them?

 

:iagree: You may like your GP and have a very good relationship with her but please be as skeptical with her advice as you might be from a different doctor. It just sounds odd that your son would have all those high heavy metal levels.

 

I'll second CourtneyMI's post too. Sometimes we just get off on the wrong foot but other times a doctor's just no good with people. But, they can be absolutely excellent doctors.

[Spryte]

Thank you, again. I truly appreciate the responses.

 

I have to smile, gently and nodding in agreement, at some comments. TransientChris, you're absolutely right, we haven't been letting him eat old paint chips. :) He was exposed to high levels of BPA prior to his birth via epoxy resins in a high performance commercial paint. There were other toxin exposures (though we don't know them all) pre-birth as well. A lot of his issues are documented as resulting from these exposures, and thankfully they now advise against pregnant women coming in contact with these substances. There really is no way to know how many of his issues arise from those exposures though.

 

What I can do is get another opinion on the metals, and how to address them. That's easy enough. I do have the results (I keep copies of all lab work), and know that the doc ordered the tests twice, from different labs. But I might do some research on labs, independently.

 

Ultimately, aside from this visit which left me with mixed feelings, we've been happy with this particular practice. I think it threw me for a loop today when our appt was changed to the main doc, rather than our (new) regular doc. I understand that, in her eyes, my son is now a more interesting patient, and it's her practice. I understand why she wants us to type up our experience on Singulair (now that the med is "out" in this thread). And I appreciate getting another opinion, even though we didn't expect that today.

 

I'm edgy. It's the earthquake, the aftershock, Irene, and then seeing a different doc unexpectedly.

 

I'm not going to dismiss that I thought she could have handled it more gracefully, but hearing other viewpoints on alternative meds has helped me see that she probably had a knee jerk reaction, just as I had after the appt.

[linguistmama]

Is there a way to make sure you could see the doc you prefer at this practice?

 

Quackery ahead :D

 

I believe that in the book you mentioned they recommend IV chelation. I used the Cutler method on myself and it made a huge difference in how I feel. The Cutler method is small doses at regular intervals. He doesn't like the IV method because he thinks that it will pull the toxins out, the body won't be able to detox it all and what is left circulating will be redeposited in the brain. He also believes that there are fewer side affects by using a little at a time. I have no experience with the IV method, it may be wonderful, but I thought I would put that out there since you are asking for info. Feel free to pm me. Sometimes topics can get heated.

 

We also love homeopathy. :tongue_smilie:

[KidsHappen]

Since you are dealing with allergie issues and behavioral side effects of allergie medications, I thought I would mention that I am bi-polar and I have severe behavioral reactions to Allegra. So if your son is taking that as well you may want to consider a different med.

[jbemom]

I think you need to weigh all the information you have and make a decision you feel comfortable with. I definitely wouldn't discount a dr that wants to use alternative treatments just because the new dr doesn't care for them. If it is because she wants to use the info for her study and you pursuing more treatments makes that difficult for her, that's her problem. You need to do what's best for your son.

 

:iagree::iagree::iagree:

[RobinF]

I am going to be blunt. I think it is highly doubtful that your son has all these toxin levels. Where do you live? Have you been letting your son eat paint chips of old paint? Lick lead pipes? Where is he getting poisoned with cadmium? Are any of you using oil paints and letting him get into them?

 

 

 

 

Just to note, this isn't always the case. We have one child with high lead levels confirmed at one of the nations foremost children's hospitals and we could never link it with any known exposure to lead. It was and is still puzzling so just because you don't live in an old house with old pipes and paint doesn't mean there can't be lead exposure.

[kalanamak]

I'm going to take it from that doctors POV. She's just learned that you guys are seeing a doctor who, I assume from your description, is a conventionally trained doctor yet is advising that you seek alternative treatments.

 

 

 

What I have to say may have absolutely NOTHING to do with you, but as the conventionally trained doctor who has a high tolerance for alternative treatments, I'll tell you why.

 

Some people's personality moves them to alternative treatments. Some people do this to extreme. I cannot count the number of times I have not spoken up about it to someone because I am aware of their being WEDDED to alternative treatments, and I am desperate to keep their trust, just so I can hear about anything frankly dangerous.

 

Remember the recent threads about remaining cordial to the abusive SIL to keep SOME relationship with your daughter? Think of it in those terms. If a child were involved, I would be EXtra, super, duper, extremo careful to keep what rapport I could with a patient just to have SOME ear to the ground about this matter.

 

I have been warned by other doctors how "dangerous" this is, and how a simple 30 notice to avoid a charge of abandonment of care will take care of these patients, but I don't think it in their best interest. Do they take my non-committalness for support? Probably. Do I chart in very politic terms? Yes. But I don't "divorce" these patients. I'm sure more than one specialtist in my county thinks I'm a quack for this, but I think of myself less as a quack and more of a well-informed duck. :) This is the "art" of medicine.

 

Not that I am implying anything of this nature in your case. I have no idea. Medicine is veeeeeeeeeeeeeeeery complex, anything but the common and simple is lost over the internet.

[NoPlaceLikeHome]

Thank you all for your responses. I am still upset, and will reply more thoughtfully later, but for now wanted to say thanks for your time and thoughts.

 

The med was Singulair. I would never, never want any child of mine to touch that med again. Or loved adult, for that matter. I wish we had known of its potential effects, that we had connected the dots sooner. We would have taken our kiddo off of that med a lot sooner, or never started!

 

If it's not too early for wine, I think I think I'll go throw something on to cook for dinner that requires opening a new bottle of wine. :D

May I ask what happened on Singulair? I have heard of behavioral side effects. I have been taking for several years with no issues.

[Spryte]

Thanks for your perspective on this, kalanamak. It's appreciated.

 

It's been an interesting day.

 

Today, I left that appt with mixed feelings. Partly because we were redirected to a different doc in the practice with no notice - which felt odd, partly because that the doc today is asking for specific information from us to add to her study (she asked us to write it up, which is really okay with me, I have no issue with that). Partly because of her addressing DH and not me. And, because of the other reasons in my original post.

 

What I have now, and which I appreciate, is a better understanding of where our communication went wrong. And why she might have reacted in the way she did, although I do think she could have handled it in a better way.

 

And I have more research to do.

 

All in all... A interesting day.

[amo_mea_filiis.]

May I ask what happened on Singulair? I have heard of behavioral side effects. I have been taking for several years with no issues.

 

I know you were asking OP, but I'll tell you our experience.

 

Ds started singulair just before his diagnosis of asthma. He was a behavioral mess and non-verbal (before starting the med), so when his behavior became off the charts, beyond insane, I didn't put 2 and 2 together for a few days. The he developed a head to toe rash within 20 minutes of his nightly dose, so it was stopped.

 

Then he was diagnosed with asthma. His Pulmo. wasn't convinced that he had had such a strong reaction to a med that could be great for his asthma. Again his behavior was off the charts. Before stopping it, I brought him back to the pulmo. He tried to bite the Dr, screamed like he was being tortured, slammed his head on the floor, tried to attack the light switch, kicked all of us, didn't let the Dr or nurses near him, and was just nuts.

 

Stopped the meds and went back to the pulmo 2 weeks later. He was his normal. He tried to run out of the room, and insisted on messing with the lights. The difference was that he let the Dr check him out without hurting anyone. He didn't do it happily, but he did it. When the door was blocked to keep him in the room, he was mad, but he didn't try to kill anyone.

 

He will never try singulair again!

[sassyscrapperinid]

I think that it sounds like your intuition is warning you about this doctor. I would probably not take my child to that practice anymore and go exclusively to your doctor but I have a very low tolerance for any garbage from doctors.

 

I totally agree!!! :iagree:

[Spryte]

May I ask what happened on Singulair? I have heard of behavioral side effects. I have been taking for several years with no issues.

 

Behavioral issues. Night terrors and bad dreams. More behavioral issues.

 

He took it for years. The behavioral issues would come and go, mostly when we added in another allergy med in the late springs/early summers, Zyrtec (per allergist's advice, we did not add OTC meds without a doc's advice).

 

Doc today said she's finding about 3% of patients have this issue.

 

Maybe you are a lucky one without any issues.

 

Singulair did wonders for his eczema, though.

[Medstudent]

I'm going to take it from that doctors POV. She's just learned that you guys are seeing a doctor who, I assume from your description, is a conventionally trained doctor yet is advising that you seek alternative treatments.

 

Chelation therapy in conventional medicine is only used for the removal of lead and generally does not look like it does in alternative medicine. It also is not free from side effects although those are relatively uncommon when used in accordance with FDA regs.

 

Chelation in alternative medicine and used for things beyond lead poisoning in not supported by evidence and is viewed by many in medicine to be nothing more then a placebo. It uses the agents in conventional medicine but I'm unclear whether the actual process is the same.

 

So that doctor is looking at that and is alarmed. To her, your doctor is administering questionable tests (and often those heavy metal tests in alternative medicine ARE questionable) and then a therapy that is not without some risks when it appears the solution, or at least a good part of it, is in sight with the removal of the meds your son was on. Good conventional doctors have an obligation to a) evidence based treatments and b) to first, do no harm. To this doctor is likely seems as if your family doctor is stepping well over the line on both counts.

 

As to how she seemed to dismiss you, she may well have. She may have let her concern for your son and about how your family doctor is treating him override her manners. Or, you may have come across as dismissing her concerns and so she turned to your DH.

 

All that considered, I'd take a breath, step back and consider her concerns. Your family doctor may be taking the wrong road on this. There may well be a reason to take good hard look at what she's advising and do a lot of careful, skeptical research on chelation. The specialist cound and should have handled it much better but that doesn't mean she's wrong in this. Chelation, like ANY treatment, has the potential to harm. And that harm could be physical but it could be in the respect that it adds stress to your lives or the harm could even be financial.

 

Don't take her behavior as offense and feel free not to visit her again but DO take her concern as a warning.

 

Good luck! :grouphug:

 

:iagree: with parts of this.

 

I do think that your doctor was likely being more dismissive of the alternative therapy than of you as a person. Chelation is one of those things like fixing "subluxations" in chiropractic that have their limited use but can be downright dangerous (or just pointlessly expensive) when healthcare folks choose to use them beyond the scope of what they're meant for. Chelation is not a cure-all, and it's not supposed to be. If your FP is genuinely concerned that your son has a heavy metal tox that requires chelation, it might be helpful to get those lab records from there to your son's pediatrician/allergy doc just so that everyone has the same information. Traditional medical training is certainly big on the scientific method, double blinded studies and peer-reviewed journals, so i'm personally wary of any therapy that does not have solid evidence to justify it. If you don't want to do the research yourself or don't have access to those kinds of resources, ask your alternative doc to print you out some of the seminal studies done on the therapies you're considering, even if it's just vitamin therapy. Any physician worth his salt should be able to find some good, evidence-based resources for you.

 

As for a doctor not listening to you, not scheduling you for the person you actually want to see, and generally dismissing you: that's a totally legitimate reason to switch doctors or to at least be frustrated. No matter what she thinks of your alternative therapy choices, she should be able to talk to you in an intelligent, calm and educated manner and explain her point of view without being dismissive. I think drs' visits nowadays are so absurdly short that some of that bedside manner is lost in the rush of getting all the information, but you still shouldn't feel like your dr didn't even speak to you.

[Mrs Mungo]

May I ask what happened on Singulair? I have heard of behavioral side effects. I have been taking for several years with no issues.

 

My son became angry and aggressive, but he had been on it for a couple of years before the behavioral and mood issues started. I asked the pulmonologist about it, specifically. He said it was known to cause mood problems in kids. We took him off it. Once he'd been off it for a week he was back to his sweet self.