Considering Meds, HELP ME

You have my sympathy over your confusion.  Giving meds to our children is a huge undertaking for us.  The dosage you were given for your child is a low one.  It will probably have to be increased.  Doctors start with a low dose and increase because every child adjusts to them differently and needs a different amount.  You may see a skinny 6 yr old taking 54 mgs  of concerta and an older heavier child taking less.  It depends completely on the individual.  The same goes for which stim.  Where my child can't tolerate adderal but does well on concerta; your child may be just the opposite.

  No, the stims aren't addicting.  Adjustments are made as the child matures and his body chemistry changes.  As for the 4 pm  meds.  They are for what is called rebound.  This is the time period when the dosage wears off.  Their symptoms may intensify.  Not all children suffer from rebound.  Here we have a low dose afternoon med but only use it if we will be out for the evening .  At home my child can handle not having the med in his system.

    We use guanfacine to help my child sleep.[he never slept more than 2 hrs at a time] It also helps control his anxiety[oftenly a co morbid condition]  Then we added melantonin[OCD].  This has enabled him to sleep all through the night.

   Have the meds changed his personality?  Once we found the right one for him, the answer is no.  He is just more able to be the person he really is.

   As for not knowing the long term ramifications of using stims.  Most are ritalin , packaged in different forms.  Ritalin has been around for over 60 yrs.  It's side effects and long term usages have been well documented.

  I applaud you for wanting to know as much as you can about adhd.  Have you checked out the CHADD website?  They have the most uptodate and factual info around.  Good luck

Meds work in about 85% of cases of ADHD. Some difficulties come when there is a co-existing anxiety, tic or other problems. Also if the child is misdiagnosed and has some issue that is mimicing ADHD (like bipolar) there can be bad side effects of the meds.

Keep in mind that on these pages you are more likely to see people still trying to work things out with treatment. Those who have success initially don't tend to search for answers. The good thing is that there are many here who have had different experiences and can lend support and help.

Stimulants are in and out of the system quickly so no long term issues. 18mg of concerta is the lowest starting dose and only about 20% of kids respond to this low dose. It is a good place to start to make sure there are no side effects. Most kids in the early clinical trials responded to 36 or 54mgs of concerta (this was before the 27mg dose was available).  A trial can be stopped at any time.

These meds are not addictive if taken orally and in therapeutic doses. In fact proper treatment of ADHD reduces the high rate of substance abuse among people with ADHD.

My oldest is  happy, social, well liked, but is inattentive and just needed a little help through the school hours. Each year was getting a little worse with her poor organization skills and her auditory issues. Concerta (36mg) was great, but swallowing the pills was such a struggle that I asked to change to something that could be sprinkled. We changed to focalin. Focalin (20mg) is also great for her, no appetite, rebound or sleep issues. She just can now "hear" the teacher better, finishes all her assignments and does not lose them any more. She is going into honors history and english next year and is taking pre-algebra this summer to get into the honors math class (on the testing she missed by 3 points to get into honors math). She is a smart student who was struggling and unnecesarily stressing over it. Now she is proud of herself and more confident than ever.

My youngest was on concerta (27mg) with good results as well. The problem was that because she was skinny before meds, we are really sinsitive to any weight loss and she did no gain weight for many months. We took a break to gain weight and started her on focalin. She is still gaining weight . THe guanfacine she is on is for behavior issues and the focalin covers the school concentration issues.

Sorry for the length of this.

we are an english family that lives in spain and i dont know what an iep is

in his school he has a speech therapist twice a week, a special needs teacher 4 times a week, an extra learning teacher twice a week and the school psychologist at his disposal.

in spain its law that each school has these specialists and so i am lucky as it is all free.

however it is all done in spanish and valenciano and i help him in english at home bit WOW its HARD

if i stopped the meds would he be back to his usual self as i have met people and read that these drugs can affect the personality.

its all a hard life and you know what really bugs me.......i dint smoke or even take one shot of alcohol when i was pregnant and i know and have seen mums who drank smoked took drugs and their kids are fine.

i dont feel bad for me as he is special and funny and very indigo but i worry what he will do if and when i am not around as he has such an innocent and pure outlook on life and that makes me sad x

forgive me if i seem a little devils advocate but i am in a spin.

my 8 yr old has add, language disorder, and learning difficulties, on top of this he is in a foreign school where he has to speak/learn 2 languages and then english at home, in total 3 languages.

he is a good, happy, sociable and well liked child, at school and at home.

major problems are concentration, memory, retaining and recalling information and academically behind.

however he is happy with his life and is at the moment coping with his struggles.

i must admit as he has got older he has gotten better rather than worse, however school work gets harder as we get older.

my main concern is that he has been finally prescribed 18mg of concerta and i dont want to give it too him becasue of the scandals etc etc.

i read these pages, and please forgive me as i dont wish to offend, but i see so many changes of meds and then having to take another medicine to give appetite, and then after 4 mths children are increasing the meds because their body has grown accustomed to it, and i cant say i am sure of what to do.

is it the answer to give these meds and keep increasing them everytime the body grows used to the dose, for me this is just like an addiction, and it scares me because i dont know what to do.

should i give him the meds, will i have to increase, will he have a low come 5pm in the afternoon, will his personality change, will his body become addicted to these powerful amphetamines and all the other meds he has to take to give him an appetite or to help his highs and lows.

at the moment i have a happy manageable child who enjoys school and loves life and who has friends but who struggles terribly due to memory and concentration.

i am lost in two worlds of what to do for the best and in no way am i critisizing anybody who gives their child meds, it just worries me what to do and where do we stop, afterall the whole truth is that we dont know what long term damage these drugs do, and it doesnt matter how politely we put it but they are stimulants.....amphetamines......drugs.

any advice anybody, please

thanks so much all of you for your advice

just another point....can kids outgrow these difficulties or what happens x

It is thought that DHD difficulties follow into adult life in 40-60% of people. Some ADHD kids may just need more time for brain maturity. We take a break every year to see what affect maturity has on the symptoms and see if a dose adjustment is needed (it also helps confirm that the med is still really needed).

This is a tough journey you are on. You and your son will find a way through. You have made such an effort to educate yourself so that you can give him the best help posible.

it seems to me that add/adhd doesnt just come on its own there is always something else to complicate the issue, but thats life i suppose.

Dr Jef,

 Ritlin has been around for mor ethan 60 yrs.  It's potential side efects and safety  record are well known and documented.

  As for neurofeedback,  I have witnessed temporary positive rsults but no long term results.  Although the field has promise, I don't think that the benefits to the adhder outweigh the costs of money, time ,etc.

   For those who can tolerate them, the combination of meds and behavioral odification has been proven to give the best results for treatment of adhd.

One issue with neurofeedback is that it is hard to do blinded studies to get solid and reliable data, so we are stuck with data that can be biased by all the usual things that cause unintended bias in a study. It can be very expensive to "try out" if you insurance does not cover it.

A co-worker's son went through this and seemed to see some benefit, but it did not last. Again, this "n of 1" is no more reliable for application to the population than any other individual's results.

".....if i stopped the meds would he be back to his usual self as i have met people and read that these drugs can affect the personality."  my own experience as an adult taking stimulant meds for inattentive add, there is absolutely no effect on my personality...as others have said, its effect is gone when the meds leave your system. 

after reading DrADHD's plug for neurofeedback as an alternative to meds, I googled "neurofeedback adhd" and came up with an article by a Duke Univ. professor which seemed pretty balanced and pointed out there are mixed views on neurofeedback effectiveness and also highlighted a clinical trial which found that a program of neurofeedback with medication turned out more effective than medication alone.   But then, it seems universally accepted that meds alone won't be as effective as meds in conjuction with additional support...be it counseling, coaching, cognitive behavioral therapy, neurofeedback...and let's not overlook that first source of support most of us got... a caring and supportive mother!

• DRUG X may cause a severe allergic reaction which may include: hives, facial swelling, asthma (wheezing) and shock.
• Do not use DRUG X if you are allergic to DRUG X or pain reliever/fever reducer
• Seek medical help right away if an allergic reaction occurs or redness or swelling is present, if new symptoms occur, or ringing in the ears or loss of hearing occurs.
• Keep DRUG X out of reach of children. In case of overdose, get medical help or contact a Poison Control Center right away.

The best thing about trying other things first for us, was that we knew how much benefit a positive reinforcement behavior plan and and IEP could help. We did not add meds until we got as much out of the other approaches as we could. This way we did not go through second guessing our decisions and not knowing which changes caused the benefits and which were of no help. The only bad thing was that our youngest was failing school and had anxiety and depression before we got through the diagnostic process and started looking for answers.

Dr. Jeff

   People may also listen mroe if you dont trash proven methods like meds. If you have to bad mouth other methods to sell yours it takes something away. Most methods have proven that a combination of meds and these other therapies are best.

Regarding the response to DrJeff by Maxdad.  Sorry I haven't been able to reply, but my login wouldn't work.  Now I am called DrJeffrey.

First of all, I am a psychologist, not a medical doctor, which is why I have a somewhat different slant than MD's, and why I have an interest in non-medication treatment for ADD.  Second, Mr. MAxdad, if you actually read my post carefully, you would see that you overeacted and didn't really address the issues I posted. 

In terms of 60 years of Ritalin use being some kind of evidence it is safe, there is something called science that makes no assumptions until something is proven.  The issue of Ritalin being safe for long term use is very different than using it for a year or two.  You failed to address the satement form the PDR, which is generally the bottom line guideline for medications. The quote about "sufficient data on safety and efficacy of long term ritalin use in children are not yet available, etc" was from the PDR. 

The fact that you couldn't poke around on the Home Page of the website at Oregon State and see the first selection which is Final Reports ("The Final Reports include the key questions addressed in the report, inclusion criteria, methods, results and synthesis, evidence tables, figures, and appendices. Reports are updated regularly.")  Sorry that you were in such a hurry to insult me that you didn't even take the logical step of searchina a bit.  If you check out the final reports, there is a long list of medications to choose from.  there you can find the information I mentioned about stimulants for ADD.  If you still can't find it, let me know and I'll e-mail you the page link.

The quote that you listed from U of Oregon was not about LONG TERM use of medication for ADD/ADHD.  The head of adolescent Psychiatery at UCLA mentioned that initial response to meds is quite high, but that after several years of use the number of successful users drops to 55 to 60%.   He reviewed all the evidence available for this figure. 

Your comment about almost all of the Neurofeedback studies have been done by Neurofeedback clinicians is true.  But who do you think funds all the studies on various medications for ADD?  the exceedingly deep pockets of the pharmaceutical companies, who also do not publish the studies that are not supportive of their meds. And don't think that the carrot of millions of $ of research money dosen's influence the researchers who compete intensely for those funds.

Maybe you don't think reduced growth is a problem, but many do.  And don't you think that if something has the ability to interfere with normal growth, it may have other negative effects on the body of developing children?  Sleep problems you also shrug off, but there is good evidence that ADD itself is linked to sleep difficulty, and most reasonaable people agree that adequate sleep is very important for children. Likewise appetite problems, which you shrug off - any parent knows that the concern over proper nutrition is very important for developing children. and poor appetite equals poor nutrition.

If you will look closely, I said "even cardiac problems and death if one is susceptible", which means that if one has a certain previously existing heart disorder, stimulant meds can cause death.  And, the PDR once again indicates that cardiac problems are a concern.  I didn't make this stuff up, and you didn't read carefully.

Did I leave anything out? 

Furthermore, you really missed my main point entirely.  I am not anti drug, but I am anti open mindedness.  I take these issues very seriously, and am well informed.  And I do know that a lot of people are concerned about their children taking medications for their whole lives.  And Ritalin is the most studied of all.  None of the other meds  have been around as long, so the evidence that they are safe is even less. 

Health insurance often covers neurofeedback, so the expense is not that great.  The best thing is there are no side effects whatsoever.  And in the hands of an experienced therapist, Neurofeedback is very effective.

DrJeffrey (formerly DrJeff)

P.S. I probably left out a few points, but I gotta go, I have a clinic to run.   

Maxdad:

Thank you for your somewhat tempered response compared to your previous ones.  Although I was kind of getting fond of the Dr Jughead title.

OK, we are finally at a point of agreement.  Your last paragraph was (sorry I don't use the cool window for your quote, but I don't know how to do that.  Is it something available on this format?):

"If you were truly open-minded you would acknowledge with some level of balance that medication treatment for ADD is effective and beneficial. Instead, you choose to provide references that only highlight out-of-context risks. If your purpose was not to introduce fear and/or doubt then why even include anything related to medication treatment? Why not just discuss the facts relevant to neurofeedback?

Can neurofeedback as a treatment option stand on it’s own two feet?

Saying that neurofeedback is an alternative treatment option for those who are concerned with medication treatment is fair. But doing so and highlighting only negative references to medication treatment is just as biased as those evil pharms funding research."

This is pretty much my point of view.  I just wish more epeople had a balanced view between things like Neurofeedback and Medications, and other possible therapies.  Yes, medications are effective when they don't produce too many side effects - no doubt about it.  I never said they weren't.  My original post was in response to the title: "Considering meds, help me!"  I simply threw out a possible option to consider in the light of what seem like valid concerns about medications.  It seems if someone is asking for help about meds, there is some concern already. 

Perhaps it is the case that the mere mention of any other therapeutic approach other than medication is viewed as some kind of heresy by certain people.  

I  even said I didn't mean to sound like medication bashing.  I also said that I assume readers are familiar with the various problems with medications, then gave a few examples. 

As accurately as I can state it, my point is this:  Let's be fair.  Medication is not the perfect solution for ADD for all persons for various reasons.  There are valid concerns, as there are for most any medicine, even aspirin.  I believe that a well informed consumer should know what these concerns are, then make an informed choice. Furthermore, I agree that the research for Neurofeedback is not as voluminous as it needs to be. (there are a number of reasons for this, most of which has to do with available money to fund research.  although if one looks carefully at the various studies the evidence is quite impressive.) But let's be fair.  Yes, Neurofeedback needs more research until it is patently accepted as the first line therapy for ADD.  But it is worth looking into when medication is not a good option, which is the case for many for vaious reasons. 

The points I brought up about medications are totally accurate, and come from medication industry sources.  I am sorry I didn't lay out a totally balanced case with the many pros and cons of meds, etc.  but this is not the place for that.  And as we know, we can toss back and forth minutae about details of research until the cows come home, without really getting anywhere. If my comments about the concerns about medication seem like fear mongering, I apologise.  If you look back over my earlier posts I think you will see that they were pretty gently presented.

However, I must admit to surprise at the very defensive and aggressive response to the mere mention of some negative facts about meds. 

By the way, I am willing to bet that the few persons whose family members died because they had an unknown heart condition that mixed very poorly with stimulant meds aren't quite as complacent about that potential effect as you are. Perhaps that is out of context according to you.  However, the context changes when it is your son or daughter who has died.   I just want people to be informed, to weigh options, and to make choices accordingly.  It is clear that most people are not very up to date on the Neurofeedback research and other therapies that can offer help.  It is my main aim to simply introduce these possibilities into the mainstream.   

You seem like an intelligent fellow.  Can we maintain a civil tone and discuss this thoughtfully? (If you agree to that, you can still call me Dr Jughead.)

DrJeffrey