To Medicate or Not - that is my question

[breezy1077]

Ok, I need your advice with pros and cons regarding medicating ASD son.

My DS-7 has PDD-NOS an ASD. so far we have avoided medication. Now his teacher with the "team" of parapros and intervention specialist has suggested for the second time medication to help my son in class. I don't have any bias one way or another about medication. The decision not to medicate has been a logical one to this point. My son is allergic to a couple medicines and has a family history (on my side) of opposite reactions to medication. ie. we'll bounce off the walls when sedated (it's actually kind of weird and funny at the same time), or get sleepy on non-drowsy meds.

The suggestion for meds was not done in my opinion to make their job in the classroom easier. I feel they genuinely care about him and want to do what's best. The meds would be to help him focus. Not sure what meds would do that. He has trouble with sensory issues whenever surrounded with peers, so school is difficult.

At home, he's able to focus and can sit with me for over an hour quietly when reading. So hyper is not a word I'd use for him. But, he loooves other kids and whenever he's around even one other child, his manic behavior gradually increases.

ok fellow DISers - any advice?

 

[BeckyScott]

Yeah, umm, here's my reaction-

I don't know a single teacher or para who has gone to med school.

(maybe that's a requirement in Ohio?)

So that would be the end of that conversation.

You should NOT feel pressured by the school to medicate. If they bring it up again and you just want to play nice and get them off your back, tell them you have discussed it with his doctor and that it isn't an option.

Now, if you feel that medicating him is what you want to do and you believe it is something to consider...

We had youngest DS (autism) on Concerta and it was a disaster. He almost completely quit eating, we were almost having to force-feed him. He was in preschool, and lost 10 pounds in two months, and that was with me pushing Boost drinks into him a couple times a day. On top of that, it didn't change his behavior one bit. So that was the end of that.

On the other hand, oldest DS (ADHD) has been on Adderall, a low dose, for a little over a year now, and it's a mixed bag. He is doing really well in school, really really well, and we are very happy with that. But he "comes down" off of it at about 4:30-5:00 every day and it's like he's possessed by Satan. I joke that his teacher should be paying for the Adderall, cause she's getting all the benefit and I'm getting the torture. My plan is to pull him off the Adderall over the summer and start Feingold on him and see if we can go that route.

 

[Ohiomomof2]

It is so tough to make these decisions isn't it? My DS is 13 and ADHD, ODD & High functioning Autistic. We tried many different methods before we decided to have him use medication to help him function. It is the best thing we have done for him. Does your DS have any intervention at school? Have you consulted a psychologist? We are in the Westerville area and would be happy to recommend a few excellent Dr.'s in the Columbus area if you want.

At the end of the day you have to make the right choices for you. Every child is different and has different needs. Good luck to you!

 

[bookwormde]

Breezy1077


First it is in most cases it is a serious violation of IDEA to make this type of recommendation, since it can be seen as “pressure” which is 100% a violation. Usually if it is mentioned at all (a lot of district outright forbid it for the above reason) it is as an “example” of what has been helpful with other students.

I am one who believes that medications should be used (particularly those which have such serious potential side effects as are typical in these cases) only after all other options and supports have been attempted at an appropriate level or if the child is a danger to himself or herself or someone else.

Furthermore only an MD who is highly experience and up to date with spectrum children should be prescribing these medications.

The difference you describe between home and school almost always has only one source, anxiety. It sound like your child is getting nowhere near the level of support that he needs at school. Does he have a 1 on 1 para, is he receiving at least 8 hours per week of social skill/theory of mind/ EF individual/small group instruction by an instructor who is experience and current in this field. Has there been an sensory “audit” done and have all the adjustments to his environment been made and verified for effectiveness, does your school have a comprehensive bullying policy (like recommended in Perfect Target), has your child’s academic curriculum been adapted to a visual format, have all the teacher and staff who interact with him been trained in spectrum children by independent educators and “get it” so they do not heighten his anxiety. If these are not is place for at least a year then I would not in the slightest way consider medications.



Bookwormde

 

[KirstenB]

Ok, I need your advice with pros and cons regarding medicating ASD son.

My DS-7 has PDD-NOS an ASD. so far we have avoided medication. Now his teacher with the "team" of parapros and intervention specialist has suggested for the second time medication to help my son in class. I don't have any bias one way or another about medication. The decision not to medicate has been a logical one to this point. My son is allergic to a couple medicines and has a family history (on my side) of opposite reactions to medication. ie. we'll bounce off the walls when sedated (it's actually kind of weird and funny at the same time), or get sleepy on non-drowsy meds.

The suggestion for meds was not done in my opinion to make their job in the classroom easier. I feel they genuinely care about him and want to do what's best. The meds would be to help him focus. Not sure what meds would do that. He has trouble with sensory issues whenever surrounded with peers, so school is difficult.

At home, he's able to focus and can sit with me for over an hour quietly when reading. So hyper is not a word I'd use for him. But, he loooves other kids and whenever he's around even one other child, his manic behavior gradually increases.

ok fellow DISers - any advice?

Our older dd is 10. She's not on the spectrum, but has lots of sensory issues. She has a LOT of trouble focusing in school, but has never been hyper. To help her focus, she's on an ADD med Concerta. So far, we've had to increase it, but she's had no side effects.

I have every faith these teachers of your son's are fully aware they're stepping over the line in recommending meds. They can get in a lot of trouble for that, so all I can say is they must really care about him, and he maybe is having a noticeably hard time focusing. I have a friend who's a teacher. When Andi was in third grade I called her at home, and mentioned Andi's teachers were saying she wasn't paying attention, etc. I'd heard it every year, but her teachers never recommended anything to me. My teacher friend told me they could get in big trouble for recommending any specific remedies, so she told me privately Andi should be tested for ADD. Anyway, maybe you might think about starting with his pediatrician, or a child psychiatrist. They gave us diagnostic forms to fill out, then gave them to Andi's teachers. We decided to try meds, but there are other treatments too.
Good luck with however you handle this.

 

[Forevryoung]

My plan is to pull him off the Adderall over the summer and start Feingold on him and see if we can go that route.

Go for it, if it works for your family.

http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=8747098&dopt=Abstract

just one of many (putting in both sides)

I've been medicated for 7 years, can't imagine my life any better

 

[westernmom]

Would you consider medicating your child if the school hadn't suggested it? Do you feel your child needs medication during non-school hours?

My 5 yo ds, while not on the spectrum (he has C-PTSD), has such severe anxiety that he looks like he has ADHD (which he does not, already had that ruled out). He also has some pretty major sensory issues. He can not focus/sit still in school to save himself. He tends to wander. We're working with the school on a more comprehensive sensory routine (among other things). And, he's already on three different medications - just not for focus (for mood swings, insomnia, rage). The decision to medicate our 5 yo was to help him 24/7, not just during school hours.

Now, let me say, I do understand medicating a child only during school hours. My oldest has ADD. Medication has been great in helping him focus. He says he can tell when he forgot to take his meds as he can't focus at all.

Interestingly enough, I had one teacher at my 5 yo's school suggest that we take him off all meds. Again, talk about over-stepping your bounds. I reminded her of the time we tried to lower his meds by one-half of one pill. It was a disaster - he got violent at school. (I'm thinking, how could you forget?) I made it clear that any medication decisions were to be made by his psychiatrist.

All my best - I know how difficult that decision is.

 

[tweedlemom]

Go with your gut. We put our PDD NOS DS6 on Daytrana 3 months ago and the difference is like night and day. I'm glad we waited, because we wanted to try all other options. But I am also glad that we finally went and tried the patch, because he has benefitted from it greatly. Good luck with your decision.

 

[mjlewis23]

Go for it, if it works for your family.

http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=8747098&dopt=Abstract

just one of many (putting in both sides)

I've been medicated for 7 years, can't imagine my life any better

Not to be combative at all, but there has been more recent studies that have made pediatricians look twice at the whole ADD/food additive issue.

http://www.feingold.org/Research/PDFstudies/AAP08.pdf

I would post the direct link to the American Academy of Pediatrics site, but you need a subscription to view. Some children (like my own) have an actual neurological reaction to the chemicals that are in our food. When my daughter was in kindergarten, the teachers told me that she had the intellectual level of a 3 1/2 year old, but I knew she knew the answers to the questions they were acting when we did them at home. She could just not focus at school. I, too, struggled with the medication issue. Then I found Feingold. I figured what could it hurt to give it a try? My pediatrician all but called me crazy and a bad parent for depriving her of these foods. (I guess feeding my child grilled chicken and broccoli instead of chicken nuggets and french fries is bad parenting). So, against his advice, I tried it anyways. What happened over the next 3 weeks was nothing short of miraculous. All of a sudden I had a child who could pay attention, was social with others, and behavioral difficulties almost completely disappeared. What sealed the deal for us was when her speech teacher accidentally gave her a single marshmallow (they have blue dye in them to make them appear whiter). She turned into a complete monster before the teacher's eyes. Turned everyone in the school into a believer!

Ever since that incident we have been additive free. DD made up a year and 1/2 intellectually in the 6 months that followed. That was 2 1/2 years ago. She still struggles with focus issues at times, but she is very smart and has scored around 100% on all of her spelling tests this year and just brought home a math test where she scored 95%. So, for us, the ADD was mostly a constant reaction to the foods she was exposed to. Oh, and I then fired her peditrician.

To OP, I wish you all of the luck in the world in your decision. I know this is a very difficult decision for any parent. If the diet wouldn't have worked for us, I would not hesitate to go the medication route. There is nothing worse than to see your child struggle. To BeckyScott, if you want any more info on my Feingold experience, feel free to PM me.

Michelle

 

[graygables]

My 2 still at home are dxed w/ Asperger's and ADHD/ODD (but "probable bipolar"). We homeschool, so that makes a bit of a difference, but the OT suggested we look into medication. Here's my take on it: what if there ever comes a time when the medication is not available? What if there is ever a time that the medication is too expensive and my adult child doesn't have insurance coverage? I need my girls to learn to cope with their issues without depending on meds. Children have had HFA, ADHD, PDD, etc for years without being diagnosed or medicated and they learned to live with it. Only in the last 25 years or so of publicly funded social programming (public school) has it become an issue. When my parents generation and my generation were in school, teachers adapted, kids adapted, everyone found their own way.

That said, as my youngest ages and if her dx does turn to bipolar, then we will look into meds as that is a disorder that will progressively worsen without them unlike HFA or ADHD and for which modified coping strategies aren't as effective.

Another thing to keep in mind is medical insurance and when the child is old enough to have to get his/her own, prescriptions and diagnoses from childhood can make that impossible or be rendered "pre-existing" meaning they get no coverage for anything related to their disorders.

 

[breezy1077]

Thanks to everyone for their responses. Each of you have given me something to think about, and for that I'm very grateful. I will keep you posted on what happens. Meanwhile, I'm grateful to anyone who can share their thoughts and experiences.

 

[Forevryoung]

Michelle (mjlewis23),
Not disagreeing at all- it works for some individuals/families. And I'm glad that you have seen dramatic improvement in your daughter.


Added: I read the article abstract and it states, "The results are hard to follow and somewhat inconsistent." I understand that they pulled "significant" statistics from small changes but I'm just wondering what that means. After doing research myself for the past 6 years, I am skeptical of "small changes" that prove "statistically significant" (just skeptical in the fact that I desire to scrutinize the research closer)

 

[BeckyScott]

Forevr- not to be disagreeable either, but the article you linked to is over 10 years old... at least Michelle's is "new" information...

I would much rather try out dietary changes than have my son on a psychotropic drug. He may still need the Adderall, but we need to at least try.

It might be easier at our house, since youngest DS's allergies were recently discovered and we've done major changes in the grocery-buying here. Adding Feingold to a house, when the other sibling is already gluten free, casein free, soy free, allergic to onion, egg, blueberry, pineapple, apple, cocoa, nuts.... pshaw, what's adding Feingold on top of that?

I know that both my kids go nuts on red food coloring, so it's a fairly easy jump to think that additives are a problem. And the AAP newsletter, to quote- "Thus, the overall findings of the study are clear and require that even we skeptics, who have long doubted parental claims of the effects of various foods on the behavior of their children, admit we might have been wrong." For them, that is a huge leap.

 

[bookwormde]

One of the things that are often forgotten is that spectrum individuals have a “hard” wiring variant not a process (neurochemical) variant. The things that affect the neurochemical process (drugs, food products, persistent stresses etc) have the same effect as on neurotypical individuals. Where the differences are that are children are much more “exhibiting” of these impacts because of the social and other issues that they have.
This is why they are a good “laboratory” for these types of “experiments” since results are not distorted by social constraints. Also parents of spectrum children tend to be much more “tuned in” to the nuances of their children’s moods and behaviors.

It is just important to remember that anytime you “mess with” the neurochemical process that there age both benefits and side effects. This is true if it is drugs, diet changes or persistent environmental changes etc.

The advantages of changing the neurochemical process by diet or environmental change is that in most cases the changes are much slower and less acute, therefore giving an easier pre/post analysis and giving the child more self aware adaptive ability.

You also have to remember that virtually all drug studies are in some measure supported by the industry so you have to review them in that light. Not that most of the researchers are not honorable, they are just within a “society” with certain expectations and perceptions.

bookwormde

 

[mjlewis23]

Forevryoung,

I can completely understand your skepticism. I was a pre-med student for 3 years before I switched majors. I am skeptical of most of the things in medical journals as well . We all should be. The researchers can skew anything to what they want it to say.

I know it doesn't work for everyone. There are *alot* of kids out there whose ADD/ADHD is not caused by allergic reactions to food. So the studies may never be conclusive on the issue. However, if no-one had told me about the Feingold program, my child would not have been the child she is today, I am sure of that. So, as often as I can, I share our experience hoping it will help someone. If I can help just one family see their "real child" behind those symptoms, it is so worth it.

Wanted to add: Good for you for doing your research on this topic! It's great that you made a well-informed decision for medication. I wish everyone would be so well informed before just taking a doctor's advice on anything, not just this issue.

Michelle

 

[DevilDuckie]

If the education professionals think it is worth pursuing I would bring it up to the doctors and see what *they* think. It cannot hurt to discuss it. I am NOT advocating one decision or another and certainly not suggesting that the teachers know best for sure, but it is worth considering, even if you ultimately decided against it.

 

[LauraVV]

At home, he's able to focus and can sit with me for over an hour quietly when reading. So hyper is not a word I'd use for him. But, he loooves other kids and whenever he's around even one other child, his manic behavior gradually increases.

I'm not anti-medication at all. But...since your son does well at home I'm wondering if it would help if they took him for a walk every hour or so. I just wonder if it would help to take "sensory break" to gather himself.

 

[breezy1077]

I'm not anti-medication at all. But...since your son does well at home I'm wondering if it would help if they took him for a walk every hour or so. I just wonder if it would help to take "sensory break" to gather himself.

They already do that quite a bit. I don't know if it's every hour, but they send him periodically to do his "job" of carrying a backpack full of books to the office. The parapros also take him for walks around the building at least a couple times each day. I can look into seeing if they can increase this activity though. I hadn't thought to increase it.

 

[breezy1077]

I just received an email from his teacher who was responding to an issue I'd emailed her about. She brought up that he has a hard time distinguishing real life from fantasy. Would medication help with that too?

 

[ecki]

I just happened to run across this article in the NY Times:

Psychiatry Handbook Linked to Drug Industry

http://well.blogs.nytimes.com/2008/05/06/psychiatry-handbook-linked-to-drug-industry/