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

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#1 of 39 Old 08-30-2012, 07:01 AM - Thread Starter
 
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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.


Suz, mommy to 2 chess-playing, lightsaber-wielding boys

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#2 of 39 Old 08-30-2012, 09:35 AM
 
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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!

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#3 of 39 Old 08-30-2012, 11:35 AM - Thread Starter
 
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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.


Suz, mommy to 2 chess-playing, lightsaber-wielding boys

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#4 of 39 Old 08-30-2012, 11:50 AM
 
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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.
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#5 of 39 Old 08-30-2012, 11:54 AM - Thread Starter
 
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Yes, he is off wheat, dairy, and all chemicals. Whole foods, organic diet. I wish we had seen more results from it.

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#6 of 39 Old 08-30-2012, 12:05 PM
 
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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.

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#7 of 39 Old 08-30-2012, 12:10 PM
 
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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.
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#8 of 39 Old 08-30-2012, 12:11 PM
 
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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.

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#9 of 39 Old 08-30-2012, 12:13 PM
 
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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.

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#10 of 39 Old 08-30-2012, 12:32 PM
 
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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.  

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#11 of 39 Old 08-30-2012, 12:39 PM
 
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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.


There is no way to happiness, happiness is the way.
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#12 of 39 Old 08-30-2012, 12:48 PM
 
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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
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but everything has pros and cons  shrug.gif

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#13 of 39 Old 08-30-2012, 01:01 PM
 
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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.
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#14 of 39 Old 08-30-2012, 01:47 PM - Thread Starter
 
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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.

Suz, mommy to 2 chess-playing, lightsaber-wielding boys

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#15 of 39 Old 08-30-2012, 05:39 PM
 
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* 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!!

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#16 of 39 Old 08-30-2012, 05:44 PM
 
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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.

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#17 of 39 Old 08-30-2012, 05:57 PM
 
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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?
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#18 of 39 Old 08-30-2012, 07:27 PM - Thread Starter
 
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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.

Suz, mommy to 2 chess-playing, lightsaber-wielding boys

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#19 of 39 Old 08-30-2012, 07:30 PM
 
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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.

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#20 of 39 Old 08-30-2012, 07:35 PM
 
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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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#21 of 39 Old 08-30-2012, 08:00 PM
 
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Op,  we had a hard time deciding to give my ds medication when he was dx with epilepsy.  Although I know this is a different neurological disorder, we went went through much of the same fears about side effects.  When the neuro introduced the drugs, he handed us a number of sheet of side effects and asked us which we felt comfortable living with.  It took 3 different meds to find that worked for ds, and his current one has minimal to no side effects.  We also do regular blood tests for a couple of reasons- to monitor his health and to make sure it is still theraputic.   Some considerations we thought about were how is his condition effecting him with/ without the med?  What are the consequences of not treating is condition?  We also had a hard time with first two meds to the point that the bad outweighed the good, and that meant they were not for him.

 

Having sent ds to both a neurologist and a psychologist, I can tell you that they look at very different things when evaluating a patient- you would think since study the brain that there would be more overlap... but in our situation the 2 were never on the same page.  If your doctor thinks you need to see a neurologist, then they may want further testing like, mri or eeg, which could identify medical concerns.  A psychologist might focus more on therapies to help with behavior and stratagies for coping with situations.  For us, resolving medical issues with ds lead to resolving social/behavior stuff.  Ask your insurance what their criteria is for a neuro referral and share that with the dr..  Sometimes, it is simply that the Dr. did not use the right codes for the insurance... or so our neurologist has told me multiple times.   

 

I really hope your family and ds get the help you need to feel better whether it is medication or change of lifestyle.  

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#22 of 39 Old 08-30-2012, 08:43 PM
 
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OP-- here is a link to a thread I started. http://www.mothering.com/community/t/1358506/food-intolerances-and-behavior-issues-help. My son sounds a lot like yours and no doubt, two months ago would have easily been given an ODD diagnosis. Lots and lots of suggestions were offered to me. Maybe some of them might resonate with you.

Trust your mama instinct. I had a very strong feeling food was triggering my sons issues and have seen a lot of improvement in his mood and behavior addressing that even though he'd been gfcf for years. That said, I've used medication myself for anxiety and it was life changing and very positive for me, so I'm not opposed to meds either. I would have considered them for my son if I couldn't have gotten some relief for him and for me from his behavior and mood, but I had such a strong sense it was related to diet that I pursued that first. Good luck. You sound like a thoughtful mama.
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#23 of 39 Old 08-30-2012, 08:57 PM
 
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I just want to say one more thing about costs and how expensive it is to care for a child on the spectrum....I feel very strongly, so strongly sometimes about these issues, partly because they are an economic one.  Children whose parents can afford it get the best possible care.  Parents who can't really afford it, cut out as much of their other expenses to get their child what they think that they need.  Some times it is preyed upon...parents fears that their child won't develop without x treatment.  I have spent more unnecessary money, money I can't get back, trying many many different things, and we are by no means wealthy.  We essentially have no retirement fund, a low rainy day fund....just money spent on health and our old house!  It is an enormous cost that we were burdened with and now have to try to deal with in this tight recession.

 

My light, and what I hold onto, is that I am charged to help my child reach their highest and greatest pontential.  I am so grateful that I found our answers but the sad thing is that the solutions that ultimately worked for my child actually cost me very little out of my pocket.  My homeopath sees my child once every month initially and then every few months and charges 75 dollars for a session.  Her work is worth millions to me.  The costs were the out of pocket speech therapist, the OT who wouldn't work with insurance, the social skills group he "HAD" to have that made me petition my insurance for reembursement, and the company refusing to reemburse for costs despite appealing to the highest level, since his IEP already provided social skills work.  And the irony was that he didn't require any of these services any more when homeopathy and diet began to work.  I am happy to put the autism industry out of business.  And wish I had found Isopathy (most homeopaths don't use it and don't believe it necessary) 10 years ago when I first began using homeopathy.  I always wondered why the cure only went so far with us and stopped working.  I asked my homeopath if we could detox heavy metals from vaccines with isopathy and she said it wasn't necessary.  I wished I knew better.  I wish I had all the money I spent back and all the energy and time etc etc!

 

Where am I going with this...only to say I understand the burden of it all.  It is a huge responsibility both emotionally and the toll it takes on your relationship with your husband and finances.  I have been there.  Think about your costs and if you do consider investigating a more direct homeopathic approach it has always been the most inexpensive thing in my "tool box". 

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#24 of 39 Old 08-31-2012, 04:54 AM
 
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OP - One thing I just thought of - many kids who fall on the spectrum have sensory issues (that's where the OT would come in handy).  While I get that it's expensive and that if it's not covered by insurance, it's a no go.  However, the nice thing about sensory issues is that you can sometimes manage them yourself.  Get yourself a copy of "The Out Of Sync Child".  Once you are done that get "Out of Sync Child Has Fun" (if you are not a big reader - the the fun book as it gives a high level overview of sensory processing issues in the beginning). The Fun book has tons of sensory activities you can do with your son to help regulate his neurological system so that his behaviors will calm down a bit.  Keep in mind, if he does have SPD, then the behaviors (called stimming) won't go completely away but your goal is to make them less extreme.  The activities are fun like spraying shaving cream on a table and drawing, making a "insert your son's name here" sandwich - he's the meat and you lay him on the sofa or a bed and put pillows on his body (not face) and squish him.  Things like that.  I also have a wonderful sensory diet I'd be happy to share with you.  It's 3 pages of sensory activities to help calm kids with SPD.  Just PM me your email address and I'll send it over (and I'll send it over to anyone who would like it).


Walking to raise money for Apraxia - feel free to join me if you are in the area or donate http://www.apraxia-kids.org/southjerseywalk/juliefoxx
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#25 of 39 Old 08-31-2012, 05:45 AM
 
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OP - One thing I just thought of - many kids who fall on the spectrum have sensory issues (that's where the OT would come in handy).  While I get that it's expensive and that if it's not covered by insurance, it's a no go.  However, the nice thing about sensory issues is that you can sometimes manage them yourself.  Get yourself a copy of "The Out Of Sync Child".  Once you are done that get "Out of Sync Child Has Fun" (if you are not a big reader - the the fun book as it gives a high level overview of sensory processing issues in the beginning). The Fun book has tons of sensory activities you can do with your son to help regulate his neurological system so that his behaviors will calm down a bit.  Keep in mind, if he does have SPD, then the behaviors (called stimming) won't go completely away but your goal is to make them less extreme. 

GREAT BOOK!

 

I second it and have a copy both at home and at work. A sensory diet really helped my DD, as well as therapudic brushing (which is dependent on the child- she was tactilely defensive). We also use a weighted blanket and an indoor swing (IKEA) at home-- both have been easy to implement and inexpensive. For my DD and her particular needs- these were good solutions that I would not have thought of. Did they make some of the issues we were dealing with go away- no, but they did get better and her ability to self-regulate also improved. 

 

As for OT. Check with Easter Seals, nearby Childrens Hospitals, etc. Often they will do a sliding scale- esp. if insurance does not cover services. Most insurances dont cover under SPD, but will under the ASD spectrum. Have you contacted your local ASD parent group? Often they have a wealth of information on OTs, home programs, services, meds, school programs, social skill classes, etc that they can share with you. It can make a big difference too to just *talk* to someone that is facing issues that are similar to your own.

 

Even local universities often have ASD programs (if they have a teaching program) and/or afterschool groups for kiddos on the spectrum. Our area had a fabulous free play group that was run by OT doing a Masters program on ASD. It was not publicized, but when I called the local childrens rehabilitation clinic- they referred me. Call around and explain that you do not get school services for OT but are on a limited budget. See what they can dig up for you- you may be surprised! Some areas have more to offer than others, but I hope you are in an area that has more than you think. =]

 

Per the sensory stuff: also our area has 'Special Needs' nights at places like Jump N Play, bowling, movies , etc. This is a nice place to go and be able to do 'sensory' stuff (we have not done the movies, but the Jump N Play is fabulous for SPD!!) with other kiddos and families.

Sometimes it can be so isolating to face some of the challenges SN families do-- to be with other families can be therapudic all on its own!

 

I , too, agree with Melissa. If the Dr is suggesting medical testing. I would pursue what you are comfortable with. We have found that some testing has lead us to treat symptoms differently than we would have given different information. Both my DDs have had MRIs and EEGs (as well as other testing). They were informative and non-invasive while providing a wealth of information. She is also correct that any Dr you see will look at the same information and possibly give you a completely different treatment plan! You want to make sure you have all the information.

 

 

Yes, often the schools will not offer it if there is not an educational impact. Does your DS have an IEP or 504? I would look into that if you have a Dx. That will get you access to some supports in school and/or allow for some modifications that may relieve some stress that is spilling over at home. Even a social skills group through the school social worker could help.

 

Although diet did not make a difference in my DD. Have you looked at outside allergies? Like pollen? I know everyone in our family is suffering from seasonal allergies this time of year. Both DD take allergy meds to help control their reactions. Without the allergy meds, they dont sleep and *everything* escalates a lot faster. One DD simply can not handle the 'itchy ear/eye' that comes with allergies. Her quality of life is so much happier when she is not completely distracted by physical sensations. FWIW : we tried homeopathic remedies for seasonal allergies and again did not have positive results., though I do know they work for some people/families.

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#26 of 39 Old 08-31-2012, 06:28 AM
 
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Just so you totally understand where I'm coming from about homeopathy, it didn't initially work for us either.  We have used homeopathy for 10 years in our family, with 3 different homeopaths, all offering us powerful remedies at the time that were useful to a point and then would "stop" working.  Apparently this is a common issue with homeopathy today in much the same way that phamaceuticals either have the potential not to work for some people, only work partially or work and then stop working. 

 

I have witnessed the evolution of homeopathy as the spectrum epidemic exploded and digging and getting to the bottom of why homeopathy wasn't working for us I found a homeopath who was asking the same question and was using remedies in new and novel way.  A visionary I believe.  It is my orientation and how I look at life that keeps me digging and looking for answers through more alternative means because it is most resonant with my world view and view on healthy minds and bodies. 

 

I am a child and family therapist, social worker, in my professional background and I "dig" for answers as part of my nature ;)

 

Just want you to know where I'm coming from.  Maybe I had a high degree of tolerance for the family reactions that would ensue from my searching around.  I have a very respectful husband who admires my tenacity because I can be like a bulldog digging for a good bone.  I too worried about my child suffering but I also was staying at home with him, and able to implement very clear and specific behavioral plans that worked, as well as having developed good relationship at his school to ensure his care.  I also tried to take the long view, that if I could help him sort this out, and how he would need to care for his body now, I could teach him how to be healthy throughout his whole life.  That's the way that I talk about it with him, that we know how to help him be healthy, that the food he eats, the supplements he takes, the remedies too, help him be strong and clear headed and he will likely need to do this his whole life. 

 

I do believe that this is an incredibly toxic world we live in, unprecedented really, in that our children are now the 2nd or 3rd generation raised with chemicals on and in their food, their clothes, their furnishings, polluted air, have vaccine altered immune functioning and eating a diet very different from their ancestors high in processed grains and sugar and low on vegetables and well raised meats and raw dairy. 

 

My orientation sees not "different brains" or differently wired brains but bodies and minds struggling in this world we live in and my questions are about how can I help my child or anyone's child live more comfortably in this world the way that it is (since I can't always control these larger issues at play). 
 

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#27 of 39 Old 08-31-2012, 03:21 PM - Thread Starter
 
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I am really moved at all the help and support you all are providing.  Thank you so much for caring and trying to help us through this.

 

We are on vacation with family at the moment, and it's so stressful that at the moment I've given in and let Thomas play computer games, because it's a break I need.

 

I am wading through all the info in your posts... feeling a bit overwhelmed.  APToddlerMama, your personal thread is enlightening but also a lot to absorb.  I need some time to read through it without interruption, but if there was one thing that really made the difference, what was it?

 

For the poster who asked about classification, the school would not give him a 504 yet,saying he didn't need it til next year when testing begins. (He has a graphic organizer and other 504 accomodations without the official plan.)  Thomas does NOT want to stay in school.  I think we'll probably be home schooling by next year, but I pray that we're at a calmer place by then.

 

Yes, costs are scary.  I called my husband crying this morning about it, and my fear of not going in the correct direction.  livinglife, I want to be a bulldog... I am learning.  I will not give up.  I just want a little glimmer of hope... not this child who screams at me and hates everyone and is so dreadfully unhappy.  Sometimes I see the sweet kid within and I think, "but how do I keep him??  I don't want just a glimpse, I want him back for good!"

 

I will read this all again tonight when the kids are asleep.  I will be taking notes.  I will be learning from you all.

 

Suz


Suz, mommy to 2 chess-playing, lightsaber-wielding boys

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#28 of 39 Old 08-31-2012, 03:29 PM
 
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very best of luck - happy to talk to you about homeopathy if that is of help. Mary Aspinwall.

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#29 of 39 Old 08-31-2012, 04:41 PM
 
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For the poster who asked about classification, the school would not give him a 504 yet,saying he didn't need it til next year when testing begins. (He has a graphic organizer and other 504 accomodations without the official plan.)  

 

 

WHAT?!?!? That is illegal. Any child with a medical condition (PDD_NOS counts, as would anxiety and ODD) can get a 504. Starting as early as preschool, but absolutely in K and beyond.

 

A 504 gives you and your son more legal legroom when it comes to modifications and accommodations. You have a right to an official 504 plan. 

 

504 does not have to be anything to do with testing!!! (one of myDDs has a 504 and it will not change for testing in 3rd grade since her medical needs have no impact on testing).

 

Look at www.wrightslaw.com for info on IEPs (which you said your DS did not qualify for) and 504 (which your DS should qualify for). A 504 could get you access to a social skills class, social worker, and even OT if needed. A 504 cover medical needs that do not impact academic learning (no goals for a  504). It is a legal document that allows children with disabilities get equal access to education. It allows for modifications such as extra time, personal care needs, access to organizational tools, alternative assessment environment, personal aide, etc.

 

Our school tried to give my DD a medical management plan. Which is fine for asthma or an allergy--- but no way does that have the legal heft that a 504 does. A 504 covers both my child to make sure she gets the care she needs and also makes it very clear on who is responsible for what and exactly  what the schools responsibilites are. 

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#30 of 39 Old 08-31-2012, 07:49 PM
 
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When I've felt my most afraid is when my best answers come.  Usually, they were from digging, like you are now, on the internet.  Sometimes, I think, only half in jest, that I have a little angel on my shoulder, saying....go to that website, look up that topic.  By the way, if your Dan doctor is really expensive and out of pocket it is o.k. to fire him.  Do a cost benefit analysis and see if he is worth it.  For what it's worth to you, I didn't use a Dan doctor.  I did my own research and implemented a plan based on what made sense for us.  Yes the supplements cost money, the homeopathic consults cost money, and so does the specialized diet, but the Dan doctors in my area charge an obscene amount.  Does yours?  I suspect that you have hunches about who your child is, the glimmer of the real boy, when you see him and why.  I noticed over the years certain things about my child that fed my intuition about the right direction to take.  Search your heart and I bet the answers are there.  Sometimes it is helpful to have expert guidance.  Use it when necessary but it is o.k. to decide when that is, not, necessarily for every step in this process.

 

Good luck...
 

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