Bridget, who writes for And Miles To Go recently asked this question regarding the results of treating autistic-like tendencies with ADD medications:
“My second son “sits on the fence” of autism. It is very hard because he is not clearly defined (in psychological terms) into any one disorder. Help for him is nearly impossible to obtain due to this factor. He is in a developmental preschool right now and I am hoping that he will grow out of some of his hang-ups. I am interested to find out what exactly the medicine is doing for him (Jacob) in a positive sense because we very much would like to explore that option with our son if it is needed during school attendance. Does it do anything for rigidity in schedule and routines?”
First, I should clarify to those who are unfamiliar with Jacob, like Bridget’s son, mine straddles the autism spectrum, as well. Jacob has been twice evaluated by a pediatrician-referred developmental psychologist (in addition to a speech pathologist, special education teacher, school psychologist, social worker, and nurse) using the Social Communication Questionnaire and the Childhood Autism Rating Scale. Both scores, according to the developmental psychologist, are “close to the cut off” of the autism spectrum. Likewise, she notes that “Jacob continues to have a variety of quirky behaviors and difficulty with flexibility and needs for things to be ‘just so’ that often interferes with his interaction. Jacob does not meet formal criteria for a diagnosis on the autism spectrum but the behaviors continue to be a concern.”
There are a growing number of these children and parents, I feel, who have become caught in the middle. We are not “normal” families, but we cannot benefit from a conclusive diagnosis of Autism, which, for Jacob, would mean formal intervention in the means of school aides and therapy sessions. The best that we can hope for, at this point, is to have faith in a family counselor who can help us manage Jacob’s “quirks.”
For those of us with “straddlers,” we do not wish for our children to be autistic. We waver between being thankful that our children are considered “normal,” albeit high-maintenance, but we are also on the search for definitive answers. Because I am not able to call him autistic, I often wonder if I haven’t made a mountain out of a molehill in regards to Jacob’s behavior. Is it all in my mind? However, I cannot ignore the inescapable gut feeling that something is not quite right and has not been since Jacob was an infant (more specifically, since he was 15 months old).
To help manage Jacob’s impulsiveness and hyperactivity, the psychologist recommended we try him on several medications used to treat ADD. Ritalin was prescribed first and was given to Jacob twice a day in pill form. The downside to these twice-a-day medications, aside from school-aged kids having to take a pill while away from home, is that it creates a roller-coaster effect. Kids are brought down to “normal” but then start to shoot back up once the pill begins to wear off. They then plummet once another pill is taken. Ideally, Ritalin is supposed to last for eight hours. However, in a body such as Jacob’s that metabolizes everything rapidly, the effects of Ritalin were only lasting about two hours per pill.
Metadate was our second medication, and it is one I would not recommend. Unlike Ritalin, Metadate is a much bigger pill to swallow (quite literally), which is difficult for young children who have never had to swallow pills before, even when placed in a spoonful of applesauce or yogurt. Metadate, which is an extended-release stimulant, is given once a day. Unlike Ritalin, which caused an up-and-down effect but without taking away my son’s personality, Metadate, on several occasions, left Jacob catatonic. I quickly ended the medication after Jacob told me he did not like the way it made him feel. Obviously.
Jacob is now taking a 5 mg dose of Adderall once a day, and it has been the best match for us. Adderall allows Jacob the ability to control himself (with constant reminders from us) and takes his activity level down a notch without leaving him devoid of a personality. Adderall comes in capsule form, which can be easily opened and sprinkled on a spoonful of applesauce. I have also yet to see the moodiness that can sometimes occur as a result of the medication wearing off.
All of these medications require a 30-day assessment not only to check their effectiveness, but to check the patient’s weight loss, as well. Stimulant medications work as an appetite suppressant and for kids like Jacob, who have nary an ounce of fat to spare, even a ½ pound loss in a month shouldn’t be ignored. Jacob’s drink of choice is whole milk mixed with Carnation Instant Breakfast (loaded with sugar, but that’s another post altogether). It’s important to note that all medications are started at the lowest possible dose and can sometimes take weeks, if not months, to get just right.
Because these drugs are controlled substances, you must physically go to the pediatrician’s office each time you need a prescription filled. The pediatrician cannot call the pharmacy for a refill, nor will a health insurance company approve more than a month’s supply of pills. *Bridget, I will add that under no circumstances are you obligated to give your son ADD medication even if you have a prescription to do so. These medications are not like antibiotics, which must be taken entirely. You can stop the medication at any time if, as a parent, you feel the side effects are outweighing any positive outcomes.*
I am reluctant to say that any of these medications have helped with Jacob’s “rigidness.” With almost absolute certainly, I can say they have not. For the first time, however, I feel like I am able to communicate with Jacob; instead of a brick wall separating us, it’s just a heavy curtain. I was able to take Jacob school shopping yesterday with only a few reminders not to run off, topple displays, or climb under clothes racks. *Yes, I understand that this can be “normal” kid behavior, but it can be greatly exaccerbated in “straddlers.”* Also, I can’t emphasize enough how having Jacob in preschool helped. Children like ours crave structure and routine; they are lost without it (hence, why they might run away or climb under a clothes rack). Although I am nervous for him, I feel confident that Jacob will do well in Kindergarten now that he has been in a structured preschool environment, is close to turning six years old, and is doing well on his medication. We have also found a counseling service, covered by health insurance (!!), whose staff will advocate for its patients in the school environment. As always, a parent is her child’s biggest supporter. Our work is never done.
Medication alone is not the answer, although I suspect I don’t have to tell that to Bridget or any other parent whose child takes medication for ADD or to help relieve its symptoms. I would love to hear from other parents with “straddlers” like ours. Do you currently, or have you in the past used these medications, and what have been your opinions?
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3 comments
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August 20, 2007 at 10:29 pm
Mary Beth
I have a 7 year old son who was “diagnosed” ADD (nonhyperactive) about 6 months ago. Kevin as a baby was delayed in speech and language and had fine/gross motor difficulty and then difficulty focusing in school which was affecting his learning. Kevin has had some mild anxiety issues (afraid of dogs) but has never been a behavioral problem. He is not fixated on routines and can amuse himself without getting into trouble. He does fixate on Superheroes a little bit but can be redirected easily. He is loving and very comfortable with his family but can be aloof with others and has a hard time with complicated social issues. Kevin has never been a wanderer in fact I could take him to the mall without a stroller at 3 and he would stay with me and behave.
We did start Kevin on a medication called Daytrana which is a patch that he wears on his hip for 6-8 hours per day. We find that a small dose works best for kids who are not hyper. Since the medication Kevin has advanced his reading levels and can do homework with minimal assistance. He still gets language therapy in school(he is on the low end of normal in language processing now but still suffers from some pragmatic issues common with ADD kids) and has an IEP. I am now going to be taking him to a Wholistic pediatrician who treats just these kinds of kids (ADD, ADHD, OCD, ASD, LD etc). Hopefully we will begin a round of methylated cobalamin injections (vitamin B12) which has been shown to work wonders on kids with neurological issues. This doctor is not on our insurance and will cost 180 dollars an hour but I need a doctor who can guide us on this journey with Kevin, someone who knows and researches more than I do. Our pediatrician is great for regular “sick kid” stuff but I want the best guidance for us. My friend’s son who has Asperger’s goes to this doctor and she has been amazed at the results from the B12 shots. She says it has been the single best thing that they have ever done and she says this doctor is amazing. That being said I do feel the Daytrana has helped Kevin with his focus and so do his teachers. He does have a lack of appetite during the day but he gets really hungry when the patch has been off for about an hour. He took his patch off at 3:30 today and he ate steak, potatoes, green beans for dinner at 6:00 followed by a huge cupcake. That is the nice thing about the patch, I can control how long it is in his system!! (He will wake up tomorrow and have whole grain pancakes and a banana before his med kicks in!) Sorry to be so winded, hope I helped .
August 21, 2007 at 3:41 pm
Jen
No it is not the answer. I have many years experience working with behavioral disorders and parents need to be proactive as well as educated on what’s out there. Medication can help, but that is only if therapy and wonderful parents such as yourselves are part of the pie.
November 15, 2007 at 4:46 pm
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