When it really truly is "Medically Necessary" how do you deal with the ridicule?

[cdmommie]

My 13 month old daughter had to have a minor surgery a few weeks ago. We tried all the natural methods to help her, but in the end the chiropractor was the one who had to tell us, "You really need to listen to your ENT doctor now. I can't help any further and you need to do this to save your child's ears."
She has a rare genetic deformity that makes her more prone to infection. My sister and Aunt have it too. So to try and releive the pain and infection we had tubes put in her ears. One ear has been screwed up for about 6 months now. The tube surgery released the pressure of the fluid, but there was so much and it was so infected that the tube blocked and now both sides of the ear drum are filled with blood, granulation tissue and who knows what else. So we have to do the surgery again. And again I KNOW without a doubt that this is what has to be done. She has been so sick for so long because of this infection and it needs to be fixed. NOW.

So, yes, it is medically necessary. I hate it, but that's the way it is. You do what you have to do for your baby.

But the real problem is the grief I am getting over from others. I run in a very "natural" circle and some people are appaled that I am allowing SURGERY on my kid. They blame me for my baby's problems. I must not have seen the right Chiropractor. I must not have gone long enough. I must have feed her too much processed stuff. I must have let her cry in her crib too much.... the list goes on.

How do you deal when everyone blames you instead of supporting you when you need support more than ever?

I wish everything in nature was just pleasant and perfect, but the fact is that it is not and that is the reason we use medical science on occation. I DO NOT promote the over-use of medical care. But I do promote keeping kids as healthy (and hearing-loss free) as possible.

[OdinsMommy0409]

Such a great question that I face myself. All I can do for myself is know that I made the best and right decision for my son with all the information and treatment methods possible. I have moments where I wonder, but I remind myself that others have not been to the doctor appointments nor are as educated on DS's issues more than me.

[mum4boys]

That is a great question. I wish I had a wonderful answer to it. I have a child who has some major severe life time medical problems. When people hear what he has we get all the time how their great grandma changed her diet and was cured. Okay whatever, I pretty certain that their great grandma did not have what he has. We did go the natural route and unfortunately it did more harm then good. I feel like I am constantly defending our selves because of the course of treatment we have chosen (which means my child can walk versus not walking so it is huge). Anyway people we do not know we ignore or just shake or heads and go that is wonderful but friends and relatives we go into a 13 year conversation on what we have done and tried.

[fruitfulmomma]

We kinda ran into that with my husband when he needed surgery to remove his gall bladder. Yes, we tried all sorts of things but the organ was diseased. If we had known that years ago and started, maybe we could have saved it but we gave it over a year of trying while he was in almost constant pain from it. When I finally took him to the ER he was complaining of chest pains and had problems with the surgery because it was so hard they barely got it out with the laproscopic surgery. And he then got suggestions from a few people that we should have done x or y differently. Thanks.

OTOH when my baby was "late", it was my midwives fault and she should have been "doing something". Eh, sometimes you just can't win. Frankly my husband is under standing orders not to discuss my next pregnancy with anyone and I am serious enough that I am probably *not* going to even tell *him* the edd.

[dachshundqueen]

I always respond with my best very polite voice, "With all of the information we have, we have made the decision that this is in the best interest of our child. I understand and appreciate your concern, but this isn't up for discussion, now or in the future, thanks."

I make sure that I make eye contact and am very sincere. Only you, your partner, and the HCP in your life have the complete story and medical history, others don't - and you need to call them on that. If they continue, you may need to distance yourself even if only temporarily, for your own sanity.

I'm pretty natural minded, but my kid (really bad) and my father in law (life threatening, instant anaphalactic reaction) have reactions to insect bites so I am forced to hose my yard down in pesticides in the hot GA summers. I'd rather not and it's difficult for me to do, but I value their lives and cannot risk the alternative. So, I do the above.

Best,

Liz

[Altair]

Ohhh I had such a hard time with this when my father passed away this past year from brain cancer. If one more person told me as I ran back and forth weekly between NYC and PA caring for him and my disabled mother on hospice about their aunt/cousin/step-mother who cured her cancer with some diet or wellness center in mexico or crystal therapy or what else I could have screamed.

There is something particular about cancer that leads people to think it's always curable with good thoughts and alternative treatments. Makes the people who die from it look weak like they just didn't fight hard enough.

I think the same can be true of all sorts of childhood/pregnacy/birth ailments. It's just NOT anyone else's business what is or isn't medically necessary in your family, and I'm sorry people can't keep their rude thoughts to themselves.

[Purple*Lotus]

I am sorry you are going through that, OP It sounds like you made a very educated decision after trying alternatives.

The same thing happened to me when I had the carpal tunnel surgery. Everyone was shocked that I would do it, when their Mother's brother's ex mailman just took Vitamin B and was cured. Well, when two different neurologists *neither of whom perform the surgery so they don't have an interest in it* tell me that I will lose use of the left hand in 6 months, you better believe I am having the surgery And this was after I tried a variety of other ways to relieve the pain.

Originally Posted by fruitfulmomma

We kinda ran into that with my husband when he needed surgery to remove his gall bladder. Yes, we tried all sorts of things but the organ was diseased. If we had known that years ago and started, maybe we could have saved it but we gave it over a year of trying while he was in almost constant pain from it. When I finally took him to the ER he was complaining of chest pains and had problems with the surgery because it was so hard they barely got it out with the laproscopic surgery. And he then got suggestions from a few people that we should have done x or y differently. Thanks.

OTOH when my baby was "late", it was my midwives fault and she should have been "doing something". Eh, sometimes you just can't win. Frankly my husband is under standing orders not to discuss my next pregnancy with anyone and I am serious enough that I am probably *not* going to even tell *him* the edd.

I didn't hear anything when I had my gallbladder out, thank goodness. I am glad I did that to. It was too far gone by the time I knew.

Originally Posted by dachshundqueen

I always respond with my best very polite voice, "With all of the information we have, we have made the decision that this is in the best interest of our child. I understand and appreciate your concern, but this isn't up for discussion, now or in the future, thanks."

I make sure that I make eye contact and am very sincere. Only you, your partner, and the HCP in your life have the complete story and medical history, others don't - and you need to call them on that. If they continue, you may need to distance yourself even if only temporarily, for your own sanity.

I'm pretty natural minded, but my kid (really bad) and my father in law (life threatening, instant anaphalactic reaction) have reactions to insect bites so I am forced to hose my yard down in pesticides in the hot GA summers. I'd rather not and it's difficult for me to do, but I value their lives and cannot risk the alternative. So, I do the above.

Best,

Liz

I like your advice on what to say, it is direct and to the point!

[Panserbjorne]

If you truly believe that you made the right choice everyone else can pound sand. It really isn't anyone's business. Plain and simple. Sometimes it's hard to get to a place where we really believe that. I think that's what causes more problems than anything. They don't have to live with your decision. You do. Don't worry about what they think. You need to come from a place within yourself and not waver to external influences.

If you were asking for insight, input or help then they'd have the right to share. You aren't. Hold your place with integrity. Trust yourself. You did what you needed to do. End of story.

But in that I suggest you look at and change your language. It will empower you. You aren't "allowing" surgery. You are choosing it. YOU as the MOTHER have done the research and made an informed CHOICE.

And if they want to believe that you didn't see the right chiropractor or feed her the best diet, so what? Even if that were the case, friends would choose to support you where you are. IF they want to choose differently they are free to do so. I hope it works out for them. Right now you are doing what you need to do for your little one. That's all you need to worry about.

[MeepyCat]

Sadly, some people respond to difficult circumstances by casting furiously around for assurance that bad things will not happen to them. In some cases, this takes the form of suggesting that a better chiropractor, or more time could have fixed the problem, or that the whole nightmare was caused by processed foods, or CIO. If they can identify what you did wrong, they can sleep easier, knowing it won't happen to their own precious babes. It's a very human impulse, and it's annoying as all get out.

In your shoes, I'd be seriously tempted to flame out, and in the interests of avoiding actual flame, I would stop hanging out with those people. Find some other circle to move in. Maybe there's a support group for parents of kids with ENT issues, maybe there's a local playgroup that's a little less aggravating, maybe story time at the other branch of the library isn't populated by quite such frustrating people.

[ma2two]

Wow, that would make me angry to hear that from friends. I guess I would just not bring it up as a topic for discussion, so that they would never have a chance to upset me.

If you want to discuss it with them, I guess you should start out by saying it was due to a genetic defect. People who think they know all about something will probably realize they are uninformed about that.

[sbgrace]

Yuck.

Their reaction strikes me as really strange. Are they all brand new parents? These friends must have very little life experience. I don't know how you live long, and especially how you parent long, without realizing you can't control every outcome by your own decision making and will?

Can you find new friends? These sound incredibly narrow minded and judgmental. I couldn't stomach associating with that more than I had to. Assuming they have lived life a while I don't think this is a personality characteristic you'll change by example or any explanation you might offer.

If you must continue with them (I would rather have no friend than what you described) emphasize she's got a genetic issue with her ears and, therefore, her experience is likely not what they have or will face with their own kids. I don't think it will make a difference though. I'd move on from them personally. There are lots of neat people out there who won't react in this way.

[BookGoddess]

I think you've received good advice. Those friends aren't being very good to you. I don't think I could be friends with people who are that critical especially at a time you need support from them.

I would indicate with body language, verbal language that this is not something up for debate. You've considered all the choices and you've made a decision. End of story.

Originally Posted by MeepyCat

Sadly, some people respond to difficult circumstances by casting furiously around for assurance that bad things will not happen to them. In some cases, this takes the form of suggesting that a better chiropractor, or more time could have fixed the problem, or that the whole nightmare was caused by processed foods, or CIO. If they can identify what you did wrong, they can sleep easier, knowing it won't happen to their own precious babes. It's a very human impulse, and it's annoying as all get out.

:

[SquishyKitty]

Originally Posted by MeepyCat

Sadly, some people respond to difficult circumstances by casting furiously around for assurance that bad things will not happen to them. In some cases, this takes the form of suggesting that a better chiropractor, or more time could have fixed the problem, or that the whole nightmare was caused by processed foods, or CIO. If they can identify what you did wrong, they can sleep easier, knowing it won't happen to their own precious babes. It's a very human impulse, and it's annoying as all get out.

In your shoes, I'd be seriously tempted to flame out, and in the interests of avoiding actual flame, I would stop hanging out with those people. Find some other circle to move in. Maybe there's a support group for parents of kids with ENT issues, maybe there's a local playgroup that's a little less aggravating, maybe story time at the other branch of the library isn't populated by quite such frustrating people.

A thousand times, this.

It's very easy to pass on anecdotal evidence and come off as very judgemental when you haven't got all of the information, and aren't truly faced with such a situation.

The cancer comments are the worst and make me so furious whenver I hear of people having to deal with the comments.

[Just1More]

I would consider being as real as possible about the whole thing. Perhaps a,

"Do you realize this is a genetic condition? It involves a malformity. You don't fix malformities with diet. We're doing the best we can with our circumstances and knowledge, and a little support would be helpful. You know, you just can't know all the facts about another person's situation."

might make them think a little about their comments.

[Panserbjorne]

Originally Posted by Just1More

I would consider being as real as possible about the whole thing. Perhaps a,

"Do you realize this is a genetic condition? It involves a malformity. You don't fix malformities with diet. "

There will be people who don't believe that. Either way it's not relevant and there's no need to take a defensive position. The OP chose a path regardless of what anyone else's beliefs are and should be supported in that choice whether or not the "friends" agree.

[mbravebird]

I agree with pp who said that people are often looking for control -- assurances that they know how to avoid the same situation.

I've had two chiropractors suggest that they could fix my son's hemophilia. (Which is a genetic condition, carried on the X chromosome, expressed through the liver.)

My experience with illness is that aligned practitioners acknowledge the inherent health of the body, the inherent wisdom of the body, but also engage with the mystery and uncertainty in life in a curious and gentle way. Not everything can or should be fixed, and what's most important is that our attitudes do not reflect that rigidity. Because what really heals is tenderness, openness, and trust. Beyond the physical.

I know it's painful to hear that from your friends, and it makes you feel more alone. I wish for you a deeply supportive experience with someone who understands, and a peaceful time in deep support of your own child. Much warmth to you and your little one, and best wishes for a speedy recovery and relief. I wish I had more insight on how to set boundaries with your friends, other than to say your own alignment is the best boundary.

[KatWrangler]

People are weird.

[pacificbliss]

Wow, so many mamas here are much more patient than I am. Any person who had heard what you were going through with your baby day after day and week after week and said those things in response to the fact that your child needs surgery would be out. My friends are all very honest with me and I appreciate their input but they all realize there comes a time to just circle the wagons and offer support. If my baby was scheduled for surgery and a "friend" told me I must have fed him too much processed food they would be in for a real tongue lashing.

[heather+mike2005]

Originally Posted by pacificbliss

Wow, so many mamas here are much more patient than I am. Any person who had heard what you were going through with your baby day after day and week after week and said those things in response to the fact that your child needs surgery would be out. My friends are all very honest with me and I appreciate their input but they all realize there comes a time to just circle the wagons and offer support. If my baby was scheduled for surgery and a "friend" told me I must have fed him too much processed food they would be in for a real tongue lashing.

I agree 150%, pacificbliss! Well said. And you said it much nicer than I would have!

People can really, truly be unbeliveable. These people aren't true friends, cdmommie. I'd find a new circle. You and your daughter deserve better.

[KimPM]

This is one of my favorite quotes:

"Never criticize a man until you’ve walked a mile in his moccasins."

http://www.dictionary-quotes.com/nev...ndian-proverb/

Maybe you can quote it for them, saying something like,
"I try not to judge a person until I've walked a mile in their shoes."

If it helps at all, I'm glad I didn't listen to most everyone around me...then I'd actually believe it was all that breastfeeding that caused my son's eating problems. Sometimes you've just gotta tune other people out and stick with what you know is true. It might help to either avoid these "friends" or ask them not to comment on the situation any more.