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Don't want to medicate, but feeling at the end of my rope

post #1 of 39
Thread Starter 

I have a 7 year old with mild PDD, along with ODD and anxiety.  His violent behavior has escalated to the point that the biochemical approach (vitamins and herbs) along with behavioral therapy no longer seems sufficient.  I have pressure from my husband and my family to medicate him.  And I'm starting to think they are right.  But I know the side efffects from the drugs can be dreadful.  It's so hard to know what to do.  His behaviors are destroying are family, and I'm not saying that in a melodramatic way.  We see our ped in two weeks for our physical.  He's a top DAN doctor but even he has been insinuating it may be time to try meds. 

 

Is there anyone else who's been through this?  I'm afraid that I'm so tired and upset that I'll make the wrong decision for my kid. 

 

Thanks for any input.

post #2 of 39

Aw honey, your post made me want to crawl through the computer and give you a big hug.  I get where you are coming from, truly I do. 

 

Let me ask you a question.  Have you ever given your child tylenol or motrin?   Or even taken it yourself?  Have you ever read the side effects? (http://www.drugs.com/sfx/tylenol-side-effects.html) (http://www.drugs.com/sfx/motrin-pm-side-effects.html).  Scary stuff no?  I'll bet you haven't had any side effects have you?  

 

Here's the thing... side effects are never a guarantee - just a warning.  Yes, they are scary.  However, many medications, the side effects go away fairly quickly and while they can be scary at the time, rarely have a lasting effect (baring very rare reactions).  The flip side is quality of life.  

 

Ask your child what he thinks of his behaviors.  Would he like help with them.  

 

My son has severe ADHD.  We went the natural route with diet and supplements and while it helps with the more extreme behaviors, it didn't stop his ADHD.  We saw several specialists and last year, when a world renown researcher sat us down (after 2 days of intense testing) and told us "I rarely diagnose ADHD as I feel it's overdiagnosed.  I also am a big supporter of alternative medicine with children when appropriate.  That being said, your son has severe ADHD and needs medication desperately".  We said okay and started the meds.  

 

Yes, we've had some bumps with side effects.  We switched meds 3x.  Some side effects with stimulants are stunting growth (he grew 1.25 inch and gained 1.5lbs in 6 months on the meds - he's still a stringbean); lack of sleep (in bed at 8:30 and sleeps till morning - occassional trouble falling asleep but with a 1mg dose of melatonin he's as right as rain);  tics (nope); aggression (nope); heart problems (tested before and during - he's good); allergic reaction (nope).

 

I asked him the other day if he liked his "attention" medicine.  He told me yes.  I asked him why and he told me "I can think Mommy and see things around me."  Prior to meds - it was like the world was on fast forward so he rarely took notice of his environment.  Now, he can enjoy a bird or a leaf or a nice breeze.

 

Sit down with a trusted professional and go over your options.  Good luck!

post #3 of 39
Thread Starter 

Thank you for your kind message.  I had my husband read it too. 

 

Of course, I wish there was something else that could be done.  But he's miserable... at the moment he's in his room screaming with my husband trying to calm him.  All the books read and vitamins administered are not helping us.

 

We'll talk about it with his doc.  Thank you for giving us some hope.

post #4 of 39
You didn't mention his diet. Is he completely off gluten and dairy? Before meds, I'd try diet. There was another mother whose 3 year had behavioral problems that were corrected with diet.

I wish you all the best and hope you feel comfortable with your decision.
post #5 of 39
Thread Starter 
Yes, he is off wheat, dairy, and all chemicals. Whole foods, organic diet. I wish we had seen more results from it.
post #6 of 39

I would also approach the issue with diet, taking all gluten and dairy out of his diet.  My child was also extremely anxious and would melt down at the drop of a hat.  He as well has PDD-NOS.  On a gluten dairy free diet as well as doing a thorough detoxification (via isopathy, a form of homeopathy) and receiving b12 supplements he can now regulate his mood easily.  He's sad irritable and grumpy at times to be sure, like anyone else, but he no longer has extreme reactions, which used to be very severe.  The turn around occurred very quickly when we removed gluten and dairy.  It took two weeks to see a change in his ability to control his own emotions.  He says his thinking is more clear and he's now embarrassed at the way he used to act. 

 

I know you'll hear those whose experience led the to medications but there are also many who have successfully found alternatives.  My kiddo has been on nothing stronger then an antibiotic in his life.  No judgements, just try to feel your way through things yourself and don't be pressured.  Usually moms know the right course of action.  Trust yourself and what you have observed about your child's reactions to foods, times he seems better etc.  Often, parents will remember when they think about it, that their spectrum child suddenly improves, makes better eye contact, has more emotional range, when they are feverish and not holding down foods.  Interesting, yes?  Ask yourself if your child is drawn to starches, breads, sugary cereals, milk, cheese and yogurt.  That would be describing so many kids on the spectrum.  Often kids are drawn to what they are "addicted" to and give them a "high" which would be a "glutamate" high. 

Since you are working with a biomedical person maybe they have already worked with you on this?  I know that for my son, he truly needs a low glutamate diet.  Too much glutamate and he looks very very spectrumy (no impulse control, anxious, confused, silly, irritable and unhappy).  On the diet, he looks like a cool dude kind of kid with a concrete learning style. 

 

Good luck in your quest for relief.

post #7 of 39
I am surprised there was not a difference. Are you sure he is 100% free of those items? Some people feel yogurt does not count, for example, or clarfied butter. That all counts.

What kind of screaming? Could he have migraines? My son has always gotten migraines from sugar, artificial flavors, artificial colors, and artificial sweetners.
post #8 of 39

O.K....I didn't see the above.  How long has he been on the diet?  It can take some people six full months to clear gluten out of their system. 

 

Does your Dan doctor know about Isopathy?  Ask him about Dr. Tinnus Smitts work in Denmark with children on the autism spectrum.  He worked in conjuction with biomedical specialists using homeopathic principles to detoxify suspected toxins blocking a cure or creating symptoms.  My child has used this CEASE system with a practioner in Cambridge massachusetts and it has worked miracles.  Homeopathic preparations of all his vaccines were given in all potencies and each successive clearing created more relief from symptoms. 

 

It is an alternative.  I recommend it because we have found GREAT success with it.  It is NOT traditional homeopathy, it is using homeopathic principals to create remedies from the toxic substances themselves.  It is called Isopathy.

post #9 of 39

bygones - a lot of people like to vilify mediation but it really can mean the difference between a happy childhood and a really terrible childhood (says the woman who grew up with ADD and no meds).    One thing that has really struck me is the high number of children with things like OCD, ADHD, and the other alphabet diagnosis and drug use and suicide.  The numbers are through the roof vs. the neuro typical population.  Kids try to self medicate (lord knows I did my share... unsuccessfully I might add) and when that doesn't work, often fall into a great depression.  I get wanting to go the all natural route but it sounds like you have done all the right things.  Your child's (like mine) brain is wired differently and needs chemical influences to work in an effective and healthy manner.

post #10 of 39

Dear Lord people, she has tried going the natural route.  She has tried diet.  She has tried supplements.  I find it incredibly offensive that you would question her ability as a parent to restrict her child's diet properly.  I doubt very highly someone who is so hesitant to use medication would do things in a careless nature as you have suggested.   She is seeing a DAN doctor.  I'm sure their doctor has made sure they did the diet correctly.  

post #11 of 39

I am going to 100% agree with Spotted Fox here. Mama, you have TRIED, you really did, now it may be time to try meds. By agreeing to try meds you are not signing your child up to a daily medication for the rest of their life. You are doing a trial of medication at this point in the child's life when all other resources have been exhausted. 

 

 

I get not wanting to medicate it, I really do. I was against meds for DD1 for years. Finally early this year she came to me and said that she didn't want to feel like this anymore, she was done. I listened to her. She is now on meds and we ALL could be not happier with the results. My biggest regret is that I did not do it years ago. DD1 needs medication to feel more "normal", she needs medication i order to be happy. Maybe not forever, maybe forever. I don't know. I am not looking long term, for now, we are just focused on the present.

post #12 of 39
For my dd, who is on the autism spectrum and has anxiety disorder, diet makes NO difference at all. None. Zero.

Implying that if only another parent did what you did their child's problem would go away is not supportive.

For some children, modern medicines mean that they do not have to suffer. As difficult as the current situation is for the family, what is it like for the child? Is any one here seriously suggesting that the mother should continue to let her child suffer rather than allowing appropriate medical treatment, which in his case may be medication?

I
post #13 of 39
I understand that she's tried some or all of what is being suggested instead of medication. If there was something overlooked or done wrong it can be corrected before giving up and going the medication route. I had an in depth discussion with a mom of an ADHD boy who told me she wished she had tried a little harder before trying meds, because she felt the meds took her son away from her. I know this is frustrating, but I am trying to save the OP later regret
If everything we all can come up with has been done to no effect, and she confirms that(!), *then* I will let you talk all you want about medication.
post #14 of 39
Thread Starter 
I want to thank everyone for their help and support. Trust me, I see both sides of this. It would be wonderful if a solution was clear. I often pray that God will close certain doors and open the right window for this kid.

To answer someone's question, Thomas has been off gluten since age 2. Dairy is more recent; 6 months ago. We are vigilant about his diet. No chemicals, dyes, etc.

Thomas is being treated homeopathically (Vaccinosis and Metrex) but I am not familiar with isopathy. I will definitely ask our doctor about it, as well as the B12 shots.

Someone asks about the screaming. It is in direct reaction to stress. I don't think headaches are involved. Our doc wanted him checked by a neurologist, but we haven't been able to get insurance to pay for the tests he wants. We're now trying to get neuropsych testing through the mental health route, but I'm not sure that's really going to help us.

I'm grateful for all the different opinions, because I'm stuck in my head now and it's got me considering options.
post #15 of 39

* HUGS*

 

I wish I could give you a hug too!

 

Question per the screaming--- have you looked at OT? I know one of my DDs did well post OT and we still implement some of the techniques our OTs used. DD had a dx of PDD-NOS and SPD. She would get overstimulated/overwhelmed/stressed out and simply shut down which appeared as hearing loss (it is not). OT helped a lot.

DD had no changes in behavior with diet restrictions. 

 

A lot of kiddos do OT and meds combination. As a PP said, if  meds dont work you can stop taking them or try a different med. Watch for side-effects and start low. There is nothing saying that he will always have to take them or  take a certain med, etc. 

 

Also, as a Spec.Education teacher I have seen meds change kids lives for the better. Which is why I chimed in. Yes, diet works for some. Yes, behavior therapy works for others. and Yes, meds work for still others. Or a combination of the above. There is no 'right' solution for each kiddo. You have to do what is best for your individual situation.

 

Violent behaviors can be frustrating to everyone-- the kiddos included. Long-term issues can affect self-esteem and relationships.  I would definitely try a trusted Dr. suggestions that would make your DS and your family's quality of life better. Also know that if something does not work (diet, behavior mod, meds, etc) to try something new. So may people are against one thing or another due to personal opinions or circumstances, but honestly every family will take different routes to helping their child in the best way they can. Also over the years or as a child gets older a new approach may be needed and that is OK.

 

As a family, everyone tries to do what is best for their kids, their family, their own peace of mind, at that time. 

 

Keep us posted and I hope  you, your family, and your DS find something that helps soon!!

post #16 of 39

Absolutely, I understand being in your head, trying hard to think through the options.  It feels funny to me that people on this board who have used medications successfully after using more alternative methods seem to think they are being attacked if those of us who have found alternative medicine to have our answers encourage more questions, dialogue and counsel patience.

 

Obviously, the OP feels the tug of both sides.  Clearly all of us here do because we live in the "modern" world where such medicines exist but we also know other ways and methods and are willing to use them.  Sometimes, my wise homeopath counsels, it is important to allow a child to "have their symptoms" especially if you see a progression to health and healing and know that they have made progress.  It is important in showing the way to the "next healing remedy".  That's the homeopathic method.  Since he is being treated and these are "POWERFUL" medicines in and of themselves as acknowledged by most of the european world and india there may be next steps that are clarifying.  Because I was patient it took finally six months to progress through my son's isopathic treatment (where every vaccine he took was cleared, as well as strep infection for facial ticking and a few of what Dr. Smitts calls "universal miasmic" remedies) where he is no longer acting out behaviorally.  It took another six months to see these changes cement.  I didn't have a "screaming" child (oy, that's tough) but my first thought given my orientation and what has worked for me is that I would want to find a homeopathic remedy that would address this issue.  Maybe your Dan doctor has heard of Dr. Smitts.  He was highly regarded in Europe and passed away a few years ago, but, has trained many people in his work.

 

Personally, I will add that I am not a person to be "silenced" or willing to tip toe about sharing my own experiences because someone else felt beaten by other's in deciding to medicate.  I have my experience too which has been incredibly hard won just like the other posters, and I am so very very grateful to be in this good place with a son doing well.  I am happy to share it but by doing so I am not denigrating anyone else.  How an being myself denigrate anyone else!  I think this kind of reaction is overly sensitive and a projection....if you felt put down you want to spare the OP from such feelings.  There is no intention from me certainly to create this feeling in anyone else when I certainly have felt my own battle scars.  We all are the "heroes" of our own story, is my best friend's (the psychologist) saying.  I trust that the OP will be the hero of her own story and win her own battle scars.  If I offer any info that is useful and resonates I am HAPPY to share it and our different choices all work, no one is being left to suffer, as she is certainly a good mom, and searching for her OWN answers.

 

And, naturally, I want to pipe in for Pek64, many people do in fact do the diet incorrectly, or allow their children to cheat.  I have also met parents who don't know where the "hidden" casein and gluten are on labels.  It is a typical mistake and natural to ask this if she wants to be helpful.

post #17 of 39
Two additional things to consider.

1. Apples and pears (organic) may be waxed with something that has dairy and soy. It was in a thread here
I'll try to find it for you, or maybe someone else remembers. That can be transferred to other produce, as well.

2. Organic and Kosher foods can contain Neotame, a version of aspartame, and do not have to list it on the label. Also cattle feed can have it included (organic, too) and not have to disclose it. Google Neotame or go to farmwars.info (I think).

I hope you know to look for whey and casein on the labels. If it were me, I'd make sure the dairy was completely eliminated before giving up on a natural approach.

Gluten can be found in oats and other grains related to wheat, so you need to be diligent there. And gluten free oats sometimes still have gluten.

Did he have colic as a baby?
post #18 of 39
Thread Starter 
Thanks for here hug, KC. I need it! No, Thomas didn't qualify for OT. The evaluator admitted there were some red flags (him starting the eval by saying "it's so quiet in here, I can hear the air" and his anxiety in loud classrooms) but they only qualify if thy think it profoundly affects his educational experience. And frankly, the district has too many classified kids to deal with. I never considered trying to get OT outside of the school. Our insurance is dreadful, but maybe I'll talk to the doc about OT. I'm willing to try anything.

Pek, yes he had terrible colic as a baby. Both nervous and gastrointestinal colic, and then the vaccine reactions on top of that... Thomas sometimes screamed for up to 8 hours a day.

Thank you for the info -- I had never heard of neotame. Sometimes I feel like eveything is a landmine for Thomas.

Livinglfe, I would consider seeing a homeopath too who was skilled in that type of homeopathy, even if our doc wasn't knowledgable on it. It's all difficult living paycheck to paycheck. My husband is willing for us to take out a loan for the right treatment... But he is so burnt right now because he feels none of the "natural" remedies have worked. I understand his frustration.

I think at this point, I'm going in with my list of queries and potentials to the doc. And we'll see what he says. Thank you to everyone for sharing your experiences and support.
post #19 of 39
Quote:
Originally Posted by pek64 View Post

If everything we all can come up with has been done to no effect, and she confirms that(!), *then* I will let you talk all you want about medication.

 

 

 You don't have the right or the power to "let" people on this board talk or not talk about something, including medication.

 

The very most important thing this board needs to be is supportive of the mothers who post here. It is not a forum to push a particular plan of treatment.

 

None of us knows each others children, and none of us are qualified to diagnose a special needs child or declare a plan of treatment. The most we can do is provide a safe space for moms to talk about what they are going through and what they are feeling, and share what has worked with our own child -- but that needs to be done gently and respectfully and with the full understanding that different things work for different kids.

 

I feel very strongly about keeping this board a safe space for moms of special needs kids.

post #20 of 39
Just asked my son if he could hear the air when he had sugar, and he said "yeah!". Light, sound and motion are bothersome and upsetting to someone with a migraine. Sugar and anything artifical are migraine inducers for my son. Fruit and fruit juices are fine. Honey and maple syrup he can tolerate in small amounts (tiny amounts).

One more thing to consider (as if you didn't have enough).
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