Do I give up so soon? New to the medication route

[mamanet]

First time posting -
Need some advice with our experience so far with chlonodine. My ds is 7 and they have not diagnosis him with anything so far. They suspected sensory issues, anxiety and aspergers except when evaluated he had lots of the traits but not enough for the diagnosis. So to make a terribly long story short my son's main issue is his moodiness and aggression. I have rejected medication up to this point (3yrs in) and have tried lots of other things that have helped improve his behavior. He went from major meltdowns daily (3-4x) to 1 meltdown once a month. He can have minor things everyday where I intervene or assist him to keep him calm. I am home schooling him because his 1st meltdown of the year was pretty severe, grab a hold of kid and said he was going to kill him. School was pushing to either get rid of him to Special Education class or have me medicate. I was not willing to do either so I home school. However, my ds wants to go to school and do all the normal things all kids do. Which leads me to I guess my only alternative, that if I want him mainstreamed that I will have to medicate to keep him there. So..... here I am. I have done alot of reading and I am scared to death of the medications. His dr knows how reluctant I am about medicating so she is willing to try less severe medications maybe to ease me in or something. And finally my question! What do I do? We started him on the chlonodine patch .1mg because sometimes this can help kids with-impulse control and aggression. He has been on for 4 days and pretty much sleeps 4-6 hrs. during the day, looks terrible, dark circles under eyes and even when he just wakes us he doesn't look rested. Do I keep him on this? Will he adjust and not be so sleepy? I haven't seen any change in his temperment. He just mostly seems tired and doesn't have hardly any energy. He will play for about 45 minutes and then he has to stop and cover up and lay down. What do I do? I wanted so badly to have this medication work on him and now I am so disappointed. I do not want to put my son on respirdol which is what dr would have done if I was ok with it. I am scared about what this can do to his brain and how it is going to effect him. He is my perfect little boy and it breaks my heart to medicate him.

Any suggestions and support would be greatly appreciated.
Sorry so long-
N

 

[BusynMember]

Ok, I have some questions that could help us help you. Welcome to the board. I'm one mom who medicated my son and, in retrospect, I am NOT a fan of medications as a first-try solution. If interested, read on. I have lots of opinions...lol...and lots of experience with all this.

1/Who has diagnosed him? Has he ever seen a neuropsychologist? If he has not, my first bit of advice is to take him to one. This sort of evaluation is way more intensive and in my opinion way more helpful than any other type of professional. I would not hold off on this because the earlier the child gets INTERVENTIONS (not medication) the better the child does in the long run.

2/Are there any psychiatric problems like serious mood disorders on either side of your little guy's family tree? Anyone diagnosed with depression or bipolar? These are inherited and often passed along and look different in kids than in adults.

3/Here's where I ask a ton of questions...lol.
How was his early development in these areas:
Did he speak on time and appropriately?
Did he make good eye contact with both you and strangers?
Does he know how to interact appropriately with his peers?
Can he have a good give and take conversation or does he sort of monologue about his own interests and then space out when it's not about his interests.
Does he have an intense, focused interests that he can tell you everything about (and does).
Any repetitious, quirky behaviors such as mouth noises, high pitched sounds, arm flapping, rocking, echoing words that others say or that he hears on television, touching himself.
How does he do with transitions? Does stopping one activity and moving on to another cause raging?
Does he have "literal thinking?" Is he inflexible?
Did he always play appropriately with toys or did he ignore them or line them up or take them apart? How is his imagination?

Ok, here is my opinion as a mom of an atypical child.
My son was saved by special attention in public school (Special Education). He had many social and life skill deficits that were addressed intensively and he is now doing so well that he is not only mainstreamed, but is doing GREAT as a mainstremed child. Special Education can be a lifesaver and many kids need it. My child would not have had the opportunities to learn not only academics, but social skills and life skills if I had homeschooled him. I did for a year, but could see that he wasn't learning better how to interact with others so we put him back in school. My son's aid taught him how to take notes and to figure out "the big picture." She taught him how to behave in social situations and now he can pass. None of this would have happened at home, even if he had gone ahead academically. I also put my son in the Special Olympics, even though he is not cognitively delayed. He certainly HAS social skill and life skill delays. He loves it and it keeps him very active. There isn't one thing other kids do that my son can not or does not do. He has learned to swim like a pro and can rollerblade with the best. He has friends now, both from his old Special Education classes and kids who are typical kids.
Anyhow, I'll get off my soap box. Obviously, you know more about your boy than I do. I put less stock in what classroom my son is in than how much he can get out of it. I do not medicate my son. He is doing well; he does NOT need medications. I don't think they are the first answer with many of our kids. HOWEVER my son has gotten tons of school interventions and community interventions, which you aren't entitled to in Wisconsin unless your child goes to public school. I can't believe that this is the same child that we adopted at age two--the one who could barely function and who had massive tantrums.
Kids with sensory issues, which my son has too, tend to get desensitized better if they get interventions. At one time, my son at PT, Occupational Therapist (OT) and Social Skills AND Speech in school, even though his speech was fine. The speech was to help teach him how to hold a give-and-take conversation.
My son is on the high end of the autism spectrum. I hope you do decide upon a neuropsychologist evaluation to see what's going on with your child, and, no matter what you decide, I wish you luck. Sorry this was so long. I tend to get wordy. I'm a writer

 

[KTMom91]

When I finally agreed to medications for Miss KT, it was because I had exhausted everything else I could think of. She was in the 4th grade when she started on Ritalin. It didn't solve all her problems, but it settled her down enough to focus in class and not alienate people at recess. Miss KT was prescribed clonodine at one time, but I wasn't comfortable with the side effects, so she never started taking it. She's taken Risperdal for nearly two years now, and it's helped her quite a bit. JMO.

Welcome to the board, mamanet.

 

[mamanet]

Thank you for the response and your input. I tried to answer all of the questions.
How was his early development in these areas:
Did he speak on time and appropriately? yes
Did he make good eye contact with both you and strangers? not really and didn't always respond to someone talking to him- however he now does talk initiate conversation with others
Does he know how to interact appropriately with his peers? yes, but isn't able to go with the flow. He has a great imagination but I think he has to direct most of the play.
Can he have a good give and take conversation or does he sort of monologue about his own interests and then space out when it's not about his interests. No - he usually wants to stop talking when we try to talk
Does he have an intense, focused interests that he can tell you everything about (and does). I don't think so -he love playmobil toys - any kind.
Any repetitious, quirky behaviors such as mouth noises, high pitched sounds, arm flapping, rocking, echoing words that others say or that he hears on television, touching himself. He does like to shred newspaper and loves to "cut weeds" by swinging a stick around.
How does he do with transitions? He is better now but we prepare him and he is doing better with changes. Does stopping one activity and moving on to another cause raging? It happened more in kindergarten then this year. He is actually doing well with changes and since I took him out of school he has been doing more outside the home. ex. He never liked going to his grandparents house (because of set up of there home is small and there main rooms are all open). However now he will go without a fuss.
Does he have "literal thinking?" No Is he inflexible? yes but this is improving also
Did he always play appropriately with toys or did he ignore them or line them up or take them apart? He love to throw his toys pretty much until they broke. Now he plays with them appropriately.
How is his imagination? Excellent- he likes to tell stories, draw pics about them and can build just about anything from anything in our home. ex. x-mas -huge family gathering 40+ in our home he decides to be an elf. He found a green t-shirt, red shorts,

Medications is not my first choice. We have tried vitamins(Truehope), inisotol, choline, Fish oils, changings in his diet (dairy free now), chiropractor care, counseling (continues)and a homeopathic physician. He continues to recieve Occupational Therapist (OT) from ps. He has had a neuropsychologist exam and we come back with a diagnosis: Possible aspergers, atypical temperment and watch for possible mood disorder in the future. I did have his thyroid ck and that came back ok. We do not have a hx of any depression or bi-polar.

Have I missed anything that I should try. I think part of me wanted to go ahead and try the medications now to prove to everyone that he doesn't need them. I don't know. I have such mixed feelings about it all.

N

 

[DDD]

I guess you know that although the CD family is a wonderful caring group of parents...we don't always agree on which course makes the most sense
so be prepared!

My "claim to fame" in the family is that I am older than dirt and have
over forty years experience dealing with difficult child issues. Even four decades does not guarantee worthwhile guidance.

Since I'm in the midst of preparing the prime rib dinner that I was too pooped to cook yesterday, I'll be rather abrupt. Just remember I am one of the "good guys".

Exactly WHO is the Physician you are following? If it is a Pediatrician, in my humble opinion that is a mistake. If it is a General Practioner, in my humble opinion that also is a mistake. If your son is being seen by an experienced Child Psychiatrist
with input from a Child Psychologist...you are on track.

Regarding medications, all of us on the Board realize that what works for one does not work for another. It is not like aspirin when you are dealing with difficult child issues. Just because you don't like the idea of medications does not mean that it is in the best interest of your child to avoid medications. Some
kids NEED medications or they end up being outside of the normal loop of
childhood........and subsequently don't blend later as teens or adults.

So tell us exactly who you are using as the expert. PLEASE don't tell us
that the educators are leading your choices because even though many of our members are dedicated and experienced teachers...teachers and school counselors are NOT qualified to dictate or suggest treatment plans for difficult child's.

Hang in there. We are glad you found us. We are genuinely sorry that you had to even look our way. After seven years in this CD family I can assure you......we are good guys who want to support and help. DDD

 

[susiestar]

Welcome, Mamanet! I am glad to have you here, but so sorry you need to be here, if you know what I mean.

It sure sounds like you have tried just about everything you could think of besides medicine. This question is rather simplistic, but it does get a point across:

If your child was diabetic and you worked with his diet and exercise and everything, but it still was not "right", would you refuse to give him medication if the very first medicine you tried did not work?

I KNOW that it is not that simple. I truly do. But it is one way to view the problem at hand.

My son is an Aspie, and on some days might not completely qualify for the diagnosis. Ddpends on how well he liked the instructor.

If you are very concerned about the medicine, then call the doctor and talk about these issues. If you do have an Aspie on your hands, he may or may not need medication. It is generally used to treat symptoms rather than try to "fix" the problem.

Wiz (my son) bounces all OVER if he doesn't take his ADHD medications. And he is on other medications for toher things.) it takes a lot of trial and error (this is why they are still "practicing" medicine, LOL!)

The best advice I can probably give is to follow your instincts. We came with instincts to help our children survive. If we listen to them, usually we will go the right way iwith our kids.

 

[BusynMember]

Thanks for the answers. First of all, you seem timid about labels. Trust me, they HELP your child get the help he needs. You know your child is atypical because you are here. It won't change him to wait and hope he suddenly becomes like others his age. That almost never happens. We have to work hard to find answers and seek out interventions for our kids. in my opinion medications should be a last resort and only once the professionals are sure what they are dealing with. in my opinion doctors hand out medications too fast. Ok...read on if you're still with me...
I really think you should take him to a neuropsychologist still. Even though he is improving, he still may not be a "typical" kid. If not, you will see things as he gets older that sets him apart from his peers. I wouldn't risk it. And in my opinion I wouldn't give him any medications until he is completely evaluated. If you don't know what is wrong with him, and he hasn't been thoroughly tested yet, then how can a doctor know what to give him? Just give him drugs? I did this with my son and I'm really sorry I didn't hold off longer, until they gave me an answer that made sense. As it turns out, he needed interventions more than medications and he doesn't want to take medications now. And he doesn't have meltdowns anymore so there is no need for them. He has done really well SINCE his evaluation and correct diagnosis and interventions. I am no expert, but I have a child on the spectrum. It is possible your son does have Aspergers. If so, he is going to need a lot of extra stuff that you may not be able to provide at home, although it does sound like he is improving. This is the norm for spectrum kids. They do improve, however they have serious problems, especially social problems and sometimes life skill problems, as adults, even if they are very bright. I'd take a look at Tony Attwoods website--he has some good books. But since he hasn't been evaluated, I'm getting ahead of myself. Make the neuropsychologist appointment. You can find them at Children and University hospital. It really can be the difference between the full, rich life and a limited one for your boy. Take care, and I added a few links below that you may want to look at!

http://www.tonyattwood.com.au/

http://www.childbrain.com/pddassess.html

http://www.aspergersyndrome.org/

 

[susiestar]

I TOTALLY agree with MWM that medications should NOT be the first thing you try, AND that you should have some idea of what is going on BEFORE medications are given.

When my daughter was in 4th grade she started having problems. I made appointment for her with a psychiatrist (with the md) to have an evaluation started and to start to figure out what was going on.

That doctor turned out to be a physicians assitant (NO bias against them, but when I make an appointment I want to KNOW if I am seeing a PA. I think it makes a BIG diff if the PA is doing the beginnign evaluation or a doctor it. We left that practice PDQ.

On advice from others here on the board, I INSISTED on having her seen by a pediatric neurologist and to have a sleep deprived EEG doen for her. I didn't think she was ADHD inattentive type. Gut level feeling that thsi was NOT the answer.

After we got into the neuro and got tests done, I got one of those "we need you to come in on day X at 3 pm to talke about the tests. (That is NEVER a good sign, just in my opinion).

And we found out she has epilepsy. The neuro feels she CLEARLY does not have ADHD. He is tops with her. We never actually started the strattera and I am very glad for that.

It IS a big step, deciding to use medicines. Whatever you decide, I am sending lots of hugs and supports~.

 

[Marguerite]

I can hear MWM thinking. She & I are often on the same wavelength when it comes to Asperger's/Pervasive Developmental Disorder (PDD) diagnosis of most kinds. And both of us have kids who were first diagnosed with something else.

Labels - they can help get better understanding from officials, they can help get more appropriate understanding and support from school. I agree, that for you they don't make a blind bit of difference, your son is still your son and no different the day after a diagnosis than he was the day before. The diagnosis is not for us - it's for everyone else. And if you have a kid who others consider a bit odd or different anyway, then a diagnosis explains it for people who need an explanation.

I do think Asperger's may have been ruled out a bit too soon. Beside, understanding of Asperger's is always changing over time. I encourage people to keep an open mind and maybe, where appropriate, to use Asperger's as a working hypothesis.

medications - we had different results to MWM. It's very subjective, really. I point people at Temple Grandin and her views on medications. She recommends the "Wow" approach - if you try a medication and say, "Wow! What an improvement!" then you're onto something worth sticking with. But if you try a medication and don't notice much change, or only see things worse, then generally it's a good indication to drop it. Obviously you have to keep medical needs in mind here, a kid can often feel sluggish when on anti-epileptic medications, for example, but if they're needed to block epileptic fits, then you need it even if you feel worse.

We were advised to put difficult child 3 on medications when he was 3. We did - even though we had family and friends criticising us a great deal. We persisted in the face of disapproval, because the difference was so wonderful and dramatic. We had a "Wow!" response. difficult child 3 had not been talking, more than a word or two (all nouns). easy child was away for a week's camp. She came back and said, "Mon Dieu, he's talking in sentences!"

It's difficult sometimes to get a clear diagnosis when your child is young. Also, an especially bright child is more difficult to diagnose because they so badly want to fit in, they adapt. This adaptation isn't true "recovery", it's a veneer. It's like the swan gliding serenely on the lake - unless you look under the surface of the water, you will never know there is a lot of furious activity going on down there, to maintain that semblance of serenity.

You sound like you're doing a lot of things right. Unless those medications are needed pharmacologically for something needing to be kept stable, I would discuss the observed side effects with the doctor. If it's not likely to be just a short-term transient thing, I would ask for justification for keeping him on it. There ARE other medications for ADHD, there ARE other medications for other disorders. Sometimes it's just a matter of trying different things to find what works.

We were lucky. Plus, we've had our medication disasters (including one as recent as last week). I've also questioned the diagnosis a few times, just to make sure it's still applicable.

Sometimes my son amazes me. Just a few minutes ago we sent him to do one of his chores - let the hens out and go into the hutch to change their water and check their food supply. husband called out to difficult child 3, "They might not want to come out. I just threw in a kilo of very rancid, rotten minced beef. You would have thought it was a kilo of snails!"
difficult child 3 quickly replied, "It's not a case of them not wanting to come out. It's me, not wanting to go in there!"
Quick. Unusually so, when it comes to clever use of words. But it shows just how fast he is learning, which again shows the remarkable adaptability you can get with these kids, as they get older and more confident (and more desperate to blend in).

He still did his chores without arguing - we warned him that a storm was on the way and doing the job now would be more pleasant, than waiting until the hail hit. We use logic and support still, to ensure effective task-changing.

Mainstream or not mainstream - he wants to try a mainstream school, which is a good sign. But WHY does he want to? Is he wanting the sort of things that TV shows and books describe school to be? What are his expectations? He could be horribly disappointed. And also frustrated.

It could be worth a try, I would investigate the possibility of part-time attendance as transition to mainstream. That way it would be a gentle slide into it and you could (either of you) pull the plug any time it's not working.

My own prejudice these days is geared towards home schooling if you can, where you have a difficult child whose learning style is not very compatible with mainstream methods. For instance, difficult child 3 (and difficult child 1) both did better (due to their increased difficulty transitioning) with staying on one subject until the week's work for that topic was completed. Then they would move to another subject and do THAT lot for the week. And so on. In this way they might spend an entire day just doing Maths, or just working on Chemistry. It has been more efficient for them, they have got through the work much more effectively.

But every kid is different. This is what worked FOR US.

medications again - our kids have done well on ADHD medications (dexamphetamine) but badly on other ADHD medications (ritalin/Concerta/Adderal). Some foods aggravated the problems (ie caffeine; oranges) and for some kids, diet can be a big issue.

Keep a diary of him, what you observe, what you have found to be good, what you have found to be bad.

Get a copy of "The Explosive Child" by Ross Greene. It gets discussed a lot on this site, it's a darn good book regardless of the diagnosis. I use it on easy child kids, I use it on parents, I use it on Dept of Education. I use it on schools, politicians, teachers. Anyone. Makes my life a lot easier. Makes my children much easier to handle. Makes us all happier.

And keep challenging the diagnosis. I think you've only got te tip of the iceberg here.

Marg

 

[compassion]

I am someone who was very determined NOT to medicate or label my kids. My son is now 18 ADHD and never been medicatec. He also chooses not to go that route even tough focus is hard for him in classroom setting, about 20 mnutes is what he can sustain.
My daughter I also chose to not medicte until her behavior got so extrem and scary at age 15. She is now on Abilify and Lactimal and it helps alot. She is sitll and alwsy will be an incredible high energy person who needs conatant situmlation but the rages she had sincea ge 3 seem much better. She also was seriusly self mdicating with drugs and alcholhol and is gling to frequent AA meetings as well as weekly therapy and biweekly psychiatrist appointments.
It is not etiher /or. it is greif process. I felt so adamntly not to medicate or go the mainstream medical route. I take what I like and leave the rest.
My experince is if it really is a nerochemical factor that medication is necessary. I do not think this is very common My readings putit at aobut 1% for bipolar.
Compassion

 

[lillians]

i to was adament,,no medications,, well i changed soon enough,, people need to fit someplace in this world young and old,, some of our children do not will not ever unless stable,, medications work ,, horrid as it is,, we do not know long term what they will do,, only that while we are here on earth we all need acceptance and if we behave badly no one wants us other that the bad guys to do bad works,,so if medications create a shorter more acceptable life ,,so be it,,home schooling is also a hard one for me,, because its so protected from reality ,,altho i have tryed it along with anything else i could try,, my daughter had mega proper diagnosis but so far no medications,, and we can barely live with her,, so medications will be next i promise--good luck!!

 

[Wiped Out]

Welcome!
I was one who didn't think I wanted my difficult child on medications. They were suggested to us when he was 4 (at the time we thought it was just ADHD). husband having taught younger children than me said he'd rather try it before kindergarten started so he wouldn't be a disadvantage. Even though that first medication isn't what turned out to be what he needed I know he did need medications. My son on medications vs. my son not on medications is a completely different person. He still is very much a difficult child but without medications he has 0 control!

It truly is an individual decision. All of our kids are so different. It took us a long time to find a combination of medications to help our difficult child.