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Autism - Support Across the Spectrum Autism - Support Across the Spectrum

Doctors Don't *ALWAYS* Know Best

Posted by on Apr. 30, 2014 at 6:27 AM
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1 mom liked this

Let me share my story with you.  There are several nurses and practitioners who work in the office of my son's pediatrician.  The doctor who primarly sees my son, has prescribed him with things that he reacted horribly to.  Given the information I give her about my son and my numerous concerns, she never should have made those mistakes.  I was naive and ignorant, but not anymore!  I blame myself more than his doctor, because each time she prescribed these things, I had nagging doubts, and I didn't do the research I should have done prior to letting her medicate him.  But never again. Here's what happened:

  • She stated on several occasions that my son may be autistic.  She diagnosed him with ADHD and depression.  For ADHD, he takes Vyvanse, and this has been the only thing that helps him during school hours.  He went from doing nothing in class, to making very good grades--he made a complete 180 in a very short time.  No complaints here, other than she mentioned NOTHING about therapy, and he needs therapy in addition to the meds.  Meds alone won't help him long-term!
  • For his depression, about 2-3 months after being prescribed Vyvanse, she prescribed him Zoloft (sertraline), which I later found out is known to be problematic in children.  Here's why she should have known better: 1. We had reason to believe my son is autistic (and we now know he is). 2. She knew this medication was known to have bad side-effects, especially with children. 3. My son already complained of severe nightmares.  And what do you think happened?  My son started having hallucinations, increasingly severe nightmares, and he was becoming very violent.  I took him off the Zoloft and scheduled an appointment, letting her know what happened.  When I told her about my findings, she said, "Yes, the sertraline can have bad effects in children."  But why hadn't she discussed this when I asked about the risks and side-effects?  Immediately after taking him off Zoloft, the hallucinations stopped, the violent behavior stopped, and the severity of the nightmares lessened back to their normal intensity.  My son didn't have depression.  His little body and mind is worn out from never getting good, restful sleep.  His emotions are erratic because he is never rested.  He has more behavioral problems than he should, because the human body NEEDS good quality sleep to perform! 
  • The second instance was with clonidine.  Each and every doctor's appointment, I would tell her about my son's nightmares, insomnia, and about his chronic constipation.  Yet, she precribed him a medication that can cause hallucinations, insomnia, nightmares, and constipation!! Excuse my language, but what the hell is wrong with this woman?!  She even wanted to 'up' his dosage to "help" him sleep.

I am floored and disgusted by the level of incompetence.  Not to mention, I kept telling her about his severe and chronic nightmares, his other sleep problems... And I kept saying, "I don't want to medicate my son so heavily.", "Are there any other options?", "Can we get a referral to a specialist?", but I always got the run around, hesitation, and even rude questions. 

So this is why I say, doctors do NOT always know best.  They DO NOT always have the patients best interests at heart...  And if you are on Medicaid, the treatment is even worse (Not to mention, statistics show minorities receive lesser quality healthcare--whether covered by Medicaid, Medicare, or private insurance). 

So my point and advice is that sometimes, you have to trust your gut, your instincts, and your intutions.  Even a great doctor isn't infallible, and no one knows your child better than you do!  If you have concerns, voice them.  Don't allow yourself to be pushed into something you're uncomfortable with.  Ask questions, DO YOUR RESEARCH!  A good doctor will take his or her time, answer your questions, and address any concerns you may have.

It's been 3-4 nights on melatonin (NO sleep meds/clonidine), and my son is nightmare free, he sleeps through the ENTIRE night (whereas he use to get up 4 or more times a night, or just lay there awake), and he wakes up happy and alert!!!

Being a parent requires excellent multitasking skills, the cunning of Sherlock Holmes, the patience of Buddha, the nerves of the Man of Steel, and encyclopedia-like knowledge for the innumerable amount of  why's," "but, why's," and "how's?" each child has stored up, then releases the moment they learn to speak.

by on Apr. 30, 2014 at 6:27 AM
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Replies (1-10):
TheJerseyGirl
by Michele on Apr. 30, 2014 at 6:35 AM
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 Thank goodness we never had to medicate D.

No, doctors don't always know best, and what a shame it is to find that out with our children as the examples.

I'm happy you are finding things to help him on your own!

Meditating-Mama
by New Member on Apr. 30, 2014 at 6:38 AM


Quoting TheJerseyGirl:

 Thank goodness we never had to medicate D.

No, doctors don't always know best, and what a shame it is to find that out with our children as the examples.

I'm happy you are finding things to help him on your own!

I'm glad you didn't.  I wish I hadn't had to learn the hard way at the expense of my son, but I take comfort in knowing I can tell other moms of my experiences and hopefully help them make more informed and better decisions for their children. 

And thank you so much.  We--my son and I--are happy, too!

SamMom912
by Gold Member on Apr. 30, 2014 at 7:50 AM

I just want to add a few things.. a pediatrician isnt exactly the best person to be perscribing mental health medication. Im hoping this is a developmental pediatrician, but if it were, then I would have hoped they would have been able to support or deny your suggestion that he may be on the spectrum. I really believe a child psychiatrist is the only person who should be Rxing meds for the brain. They are the experts. I dont take my car into the guys at jiffy lube to install a new engine.. I bring it to a mechanic. :) 

I agree that IF you had brought up these nightmares and the sleeplessness before she perscribed an SSRI for your son then I can still see why she may have perscribed. These are side effects, there is no guarantee that your son would increase these behaviors, side effects happen to a small amount of people on the drug.. if someone in the control group of a drug study has a stomachache from bad fish.. and they report the medication gave the a stomach ache.. then stomach ache becomes a side effect.. side effects are typically a small percentage of a control group if they are minor side effects... it is simply a probability. There are BIG warnings--- like the one for suicidality on the bottle of SSRIs.. since it is a MAJOR side effect (in teens) The dr was trying to figure out if the benefit was worth the risk of side effects? That Im not sure. How long did he remain on the drug? How long did your poor son have to endure these horrid side effects? Supposedly, the side effects can subside after 4-6 weeks on an SSRI, and the benefits of the SSRI are seen after 3 weeks. So, your Dr may have been trying to see if the benefits outweighed the side effects and if the side effects were going to subside.

As far as your needing to do some research, I wholeheartedly agree. Yes, as his mom you need to read on anything a Dr prescribes, or mentions or suggests or diagnosis. That is absoultely your respinsibility. The 2 of you together care for your son. Your Dr has the medical expertese.. where you are your sons expert! :)

Im iffy on your "gut"... Listen, I find medicating my child to be one of the scariest decisions I will ever have to make. (hopefully-- ok, at least to date) our guts are something to consider, but I can say my gut constantly reacts to being nervous... My gut feels like this when I get on an airplane.. LOL.. that doesnt mean Im never going to fly. So, yes, guts are helpful to listen to.. but I think its our minds job to calm our gut and remind our gut who makes the educated decision... LOL...

I also want to say "nice job" on deciding what to do for your son. I am so glad that you were an active participant in figuring out the SSRIs and the Beta's were not a good path for youe son and wanted to try something else. I think it is really hard to make these decisions... so kudos to you for standing up for what you believed to be the best course of action for your son.

  

Nickmom1118
by Nicole on Apr. 30, 2014 at 8:13 AM
1 mom liked this
That is awful! I have switched primary dr because she wouldn't treat at all. Everything was typical and if my kids got sick, she didn't do anything. So, I also learned that I have to go with my gut. Our new dr asks about Nick even if I go for my other kid and makes sure I have all the info needed to help him.

We are their advocates and that means medical care too.

I guess I'm just completely agreeing with you and giving why.

Hugs and I'm glad that you are figuring things out and D is happy!
wildchild.com
by Janine on Apr. 30, 2014 at 8:23 AM
1 mom liked this
So true doctors don't always know what's best.
indyrunner
by Member on Apr. 30, 2014 at 9:22 AM

I'm sorry you went through those bad experiences.  

I heard something the other day (not really newsworthy, but it seemed to strike me and stay with me).  Science comes first and then medicine.  You have to have so many different scientific studies and double-blind, placebo-controlled studies, across multiple populations and control for just about everything, before medicine will accept the science.  It doesn't mean that the science is wrong (or right) because it hasn't been fully verified yet.  

This comment doesn't really apply direcly to your situatuon, but I do think it applies to the statement that "doctors aren't always right."  I get that medicine needs to be evidence-based before it can be applied to a large population, but what gets me are the doctors who aren't open to the possibility of specific science until it is evidence-based.

shajdinyak
by Member on Apr. 30, 2014 at 9:28 AM
1 mom liked this
We have been using a naturopathic doctor but are still not where we want to be.
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mypbandj
by Jen on Apr. 30, 2014 at 9:59 AM
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I've never ever given doctors the God Card like many people do. They aren't God and they don't know everything. It amazes me how much power people give them, especially when it comes to their children. I believe very much in going to people who specialize in the area I want to know about. I think of my kids pediatrician as a broad and very general doctor. I may run some questions by him but I don't take advice from him on childbirth, breastfeeding, car seats or parenting. And when my kid broke his foot, we skipped the ped and went to an orthopedic dr. When he had an eye issue, skipped the ped and went to the opthamologist. Ear issue, skipped the ped and saw an ENT. ADHD and ASD issue, we skipped the ped and went to many other drs including a psychiatrist and neuropsychologist.

And even with those speciality drs, I still take what they say with a critical ear. If something doesn't seem right I don't hesitate to find a second opinion.

Maybe I learned to do this from my mother who raised a medically fragile child. She taught me to never be afraid to stand up to something you don like. Her little girl was on seizure meds and had to be poked a lot for blood draws. After having witnessed her getting poked multiple times by several nurses who couldn't get the blood, she learned to tell them, you get one try and then if you don't get it, you're calling in someone from phlebotomy.

When my toddler was hospitalized the nurses insisted she have her temp taken rectally. Well my baby was already feeling traumatized from the catheter that I wouldn't allow it. There was no reason why they couldn't get her temp under her arm. So I told them no. They were irritated but I didn't care. I am my child's advocate. Doctors have a license to practice medicine, not a license to do whatever they want. You can say no.

I'm glad you're figuring it out. Doctors aren't god. They don't know everything. And they do make mistakes. It's up to us to pay attention to our own care and our children's too, we have to be our doctors partner and not just grant them ultimate authority.
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sunshinepraying
by Bronze Member on Apr. 30, 2014 at 10:11 AM
That's horrible. I'm so glad he's doing better now. I agree with you..doctors don't always know best. At DS's appt with the psychiatrist yesterday, I brought up that I want DS to start seeing a therapist. It wasn't until I mentioned it, but then the doctor started talking about how therapy is the most important thing needed..that meds alone can't do the trick and therapy is more important than meds.
.beautifulrose.
by Member on Apr. 30, 2014 at 11:23 AM
My son had a horrible doctor as a newborn. We switched when he was just 2 months old because I had a gut feeling that we should. My husband and my mom thought I was overacting, but when we switched, his new pediatrician told us that the tests and suggestions his previous dr gave us were completely unnecessary.

I'm sorry your son was put through all that. You are right, doctors do not always know best and research is important these days, especially when it comes to medication. I'm happy to hear your son is now doing well and finally getting some rest :)
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