Who to go to for help with ADHD medication

myeverything04

New Member
My difficult child was diagnosed with ADHD about a year ago. After trying all the 'non' medication ways to help her, we tried Focalin XR in May. Side effects were horrible so after 1 month we stopped it altogether. She started Adderall XR in October and the only side effect has been weight loss. She went from 66 lbs to 56 lbs in 8 weeks. Her pediatrician is concerned but not enough to take her off the medication, wants me to meet with a nutritionalist. Problem is my difficult child is not hungry. I can't force a child who is not hungry to eat. She is only on 10mg so we tried 5 mg but all her symptoms (hyperactivity, daydreaming, humming, etc) came back and she still doesn't eat. Her pediatrician doesn't seem too worried at this point but EVERYONE (me, my ex-husband, his new wife, my mom, my family, etc) is worried as she is pale and extremely thin (she is 4' 2" tall and only 56 lbs).

Who else besides her pediatrician can I take her too so I can figure out a good medication that will work for her?? My SO isn't as concerned as I am so I feel I have nowhere to turn. Thank you all so much
 

InsaneCdn

Well-Known Member
Well, I can't give so much advice on what to do about the medications, but I can give you some ideas about calories... I live in a household where 3 of us are on stims due to ADD/ADHD...

For kids who need enough medications to actually suppress appetite...
1) Think like you're feeding a pregnant woman - every bite must have maximum food value, and when you have a choice, pick more calories over less in the same healthy bite. Dried fruit has way more calories per bite than cooked fruit (e.g. applesauce), and cooked nas more calories per bite than fresh. So... applesauce instead of an apple, raisins instead of grapes...

2) If the medication is a classical stimulant (ritalin, concerta, lots of the others), it is given either in the morning, or 2/3 times per day. In this case, make breakfast the main meal of the day, and eat before medications. Include protein, high-fiber carbs, some fat, and whatever else can be added for flavor and interest and calories. Oatmeal with brown sugar and real cream. (in this situation, getting more calories is more important than getting less saturated fat!), bagel with cream cheese, french toast instead of toast, sausage/bacon/eggs for protein...

3) Always have favorite temptations hanging around... nuts, dried fruit, trail mix, heathy cookies (e.g. high in fiber, for starters), etc. A few bites taken often, really adds up. This includes getting permission for snacks at school - but check the school's policy on nuts.

4) When enough "food value" is getting into the kid (e.g. protein, fiber, fat, minerals, vitamins...), add some really fast calories, like quality chocolate. Or add that to the trail mix.

Just some things we've had to do at various points in time...
 
T

TeDo

Guest
Just a quick question. Who diagnosed the ADHD? I really hope it wasn't the pediatrician. You need to find a Child Psychiatrist to deal with medications. A neuropsychologist would be a good one to do a TRUE evaluation of her. What kind of behaviors was she displaying to begin with?

You have come to the right place for answers to pretty much any question you might have about her and her behavior. Welcome to our little corner of the world.
 

DDD

Well-Known Member
Welcome. Sorry you're having difficulty finding the right help. From your reading and her behaviors are you convinced that ADHD is the right diagnosis? Has there been better behavioral patterns since she went on the medication? If either answer is "no" then I would seek a child psychiatrist for advice. Pediatrians are often the first place we turn for help but "sometimes" they authomatically dispense ADHD medications as they don't have advanced training in more complex behavioral issues.

From far too many years experience with stimulant medications I know that very often the first one tried is not the best one for the child. Even within families the reactions to the same stimulant can really vary. Off the top of my head I would say that we used four or five different scripts before find ones that did not cause eating problems, sleeping problems headaches or meltdowns. Since ADHD medications are "quick in and quick out" it is not hard to try alternate medications...with MD approval, of course. I would insist that the MD explain each option (check it out on the web, too) and then try alternates.

At one time I had a difficult child who lost weight and appetite. Before finding a better medication I managed to get a big breakfast "down the hatch" before the medication took her appetite away. I send snacks with her to school so if she wasn't hungry for lunch she could eat something while in the cafeteria and then as soon as the medication effect began to wane she was offered a late dinner. It was tiring but it helped her stay nutriously sound. Soon after we tried a new medication and there were very few side effects and her eating patterns returned to normal. I hope you find the solution soon. Hugs. DDD
 

myeverything04

New Member
Thank you everyone who replied! Bare with me on the replies to your questions as they are kinda long -

My difficult child's history started with being born at 33 weeks and being a very hard baby to feed to begin with. We tried 6/7 different types of formulas before finding one she would take. Her eating improved at 6 months and she was a perfect eater until 3 when she began being picky. This is the same time I noticed she didn't sit for more than 5 mins to do anything (eat, play, watch TV, read stories). She was always running around being distructive and was in her own little world a lot, not paying any attention to anyone but herself. ADHD/ADD runs in my side of the family as both I and my sister have ADD so I was familiar enough with the signs to see some of them in her. She also had no attention span, which most children don't at age 3, but hers was non existant. At 4 I spoke to the pediatrician about ADHD but she informed me to wait until Kindergarten. In Kindergarten her teacher noticed right away that she was inattentive and easily distracted so both I and her school teacher filled out a questionairre/survey (sorry, I don't know the names of them) regarding her behavior. The results suggested that she had ADHD.

It was in December of 2009 that she was first diagnosed with ADHD by a counceling group in our community. This diagnosis was based on both the questionairres myself and her teacher filled out, and an observation the councelor made during a few visits to her school. For 6 months I tried all the non-medication ways of helping her cope (strict schedule, adjusting foods, getting her in activities to burn off energy, etc) but nothing was helping so we tried Focalin XR for 30 days - needless to say she had EVERY side effect possible - no sleeping, no eating, she became nasty and mean when the medication wore off, upset stomach, etc. So I pulled her from the Focalin XR (May 2011) but didn't try anything else as summer had just started and I didn't want her on the medication over the summer anyways.

In June 2011 her school informed me they were only "moving her" to 2nd grade based on her age and height but were not "promoting her" to 2nd grade (as her reading/math skills were at the level of a Kindergartener), I took her to a local children's hospital for a 2nd option on the ADHD. She was confirmed ADHD but also added Mathmatical and Reading dyslexia. It was only 3 weeks into this years school year (September 2011) when her teacher contacted me as difficult child was humming, talking excessively and inattentive so much that she was concerned. So that is when I tried the Adderall XR.

I have (as well as my ex-husband and his wife) noticed a huge improvement with her overall behavior while on the Adderall XR. She is able to play alone, which she NEVER did before, for 30+ minutes, can sit while doing homework, isn't getting into trouble for talking/daydreaming at school and just seems to be more in tune with what is going on. But her appetite is a complete disaster. Like I mentioned before, she is PICKY and now won't even eat the few things (salami, mac & cheese, pork chops, pb&j) she actually did like. So I'm trying to give her the high calorie foods but she won't eat anything except Cheese Itz and junk.

So, I'm at the point where I don't think the pediatrician is as concerned about her going from 66 to 56 lbs from October 11-now as I am and I have no clue where to turn now. My child means everything to me but I'm so confused at this point.

Thank you all again soooooo much for your support! It means a lot to know there are others out there who care as well

ps - I tried to download the spell check thing and it's not working so please disregard anything spelled wrong :)
 

soapbox

Member
Well... just my opinion, of course, but... either there is more than ADHD going on, or it is something else.

ADHD is not uncommon as an early diagnosis. Kid is inattentive, impulsive, etc. - must be ADHD, right? Well, not necessarily.
For example Auditory Processing Disorders (APD) often presents the same in-class symptoms as ADHD - not paying attention, not following instruction, distracted, etc. But... if you can't catch what the teacher is saying - either because of language processing difficulties, or because of things like auditory figure ground where the background-noise-filters don't work right... how much attention can you pay? and how can you do what you're asked, if you don't get the message? And then add in... that the other kids catch on REAL fast that you are "stupid", and... frustration, anxiety, and all sorts of other things can come in to the mix.

Not saying she's dealing with an Auditory Processing Disorders (APD). But I sure wouldn't gloss over it - get it tested (often have to fight for the auditory figure ground piece - or to get Auditory Processing Disorders (APD) testing at all, unless there are serious language processing deficits). This is just one example of an ADHD "plus" diagnosis...

Can you tell us more about her?
How are her motor skills - fine and gross?
You noted she's a picky eater and getting worse... might be partly sensory, might be partly medications reaction... history of picky eating? other sensory issues?
Language development?
Social skills?

Because, another possibility is something on the Pervasive Developmental Disorder (PDD) spectrum...
In which case, the approaches classically used for ADD/ADHD, don't generally work - it takes a whole different approach.
 

InsaneCdn

Well-Known Member
met04... ummm... just noticed your sig, because of the post on Buddy's thread, and...

Ummm... excuse me? I live in a part of Canada where we don't get nothing, generally, but even HERE, dyslexia alone would qualify for something. ADHD - not necessarily, but LDs are official disabilities, and must be treated as such.

Add to that... there are LOTS of things that commonly go with ADHD - from various LDs, to Developmental Coordination Disorder (DCD) to APDs to... (list goes on...). Soapbox has started describing some of these.

Maybe time for a comprehensive evaluation?
 

buddy

New Member
I found you ! OK now I get it.... Sorry somehow i missed your post, I dont know how I did that since I usually at least peak at everyone... yeah I am just that nosy...LOL

I have to agree with some of the others. I would really wonder about additional or different issues. "THEY" say 70% of kids diagnosed with adhd are misdiagnosed. My son, for example, has adhd listed by some folks, but it really describes the symptoms he shows which fall under his real diagnosis which is a temporal/frontal lobe injury. It also is associated with his autism.

If you possibly can, it would probably be helpful to get a really good comprehensive evaluation with a team of professionals or a neuropsychologist. Medication really only helps a child be in a place where you can start to do teh REAL work which means some special interventions depending on the diagnosis and skill deficits. (if it helps at all, I am so glad it does at least somewhat for us.... ) YOu say they said she did not qualify for an IEP or 504 but did she even ever have an evaluation? Let us know so we can help you if you are feeling she needs support in school that she is not getting.

You might want to start a thread that says something about your introducing your child and asking for input... you might get more replies if interested. Again, nice to meet you.

Now, did I fulfill your expectations of posting a LOT more??? LOL
 

myeverything04

New Member
Thank you everyone for your imput!

To answer some additional questions I think I am going to start a new thread as I also wonder if there is more than just ADHD or if it's the right diagnosis to start off with!
 
Top