Desperate for guidance!! | ADHD Information

I am new here and desperately looking for some help!!

I have a recently turned 5 year old who was just diagnosed with ADHD last week.  He was started on Ritalin 2.5mg twice a day and the first day was AMAZING.  Both schools he's in said they saw a night and day difference... so of course we started doing a victory dance. 

Well, since then I've stopped dancing.  Every night last week he was terrible at home.  Horribly irritable and irrational and crying all the time.  I thought maybe the medication was just wearing off and making him feel worse... like a rebound or something??  Well then this weekend I had an opportunity to observe him medicated all day.  Personally, I think he seems more irritable on the medication.   He has no no tolerance for anything to go wrong and was crying all the time.  Now he is DEFINITELY calmer, less well um... hyper, less angry, and less agressive so all of those are great news but I am not seeing a miracle cure. He's still arguing a lot and questioning authority every chance he gets.

A little background... 

My son was diangosed with PDD-NOS when he was 2.5 by a private psych.  He was undiagnosed at 3.5 through a comprehensive evaluation at Children's Hospital's Autism Clinic.  At 4.5 that original private psych changed his diangosis to Aspergers which we are currently using to get him services through our insurance and the county.  I get so many conflicting opinions as to whether or not he's on the spectrum... everyone has their own thoughts.  At this point I could care less about labels...  we just treat the symptoms. He's in two different social skills groups (one led by a psych and the other by a ST) and we have a behavioral specialist who works with us. 

His main issue is problems socializing with peers.  He's AWESOME with adults... but sucks with kids.  He's very gifted... IQ tests in the 140+... and has no delays speech, fine, or gross motor wise.  He's been reading for over 2 years now and loves math.  But playing with other kids... well that seems to send him into an anxiety attach most of the time... he's clueless!! 

He always was the most easy going compliant little boy you'd ever meet... especially for a child questionably on the spectrum.  Gradually over the past 9-12 months thats changed.  Our ped brought up ADHD at his 4 year well check last year but it wasn't something I was ready to pursue at that time so we just watched him.  It started at home where he got incredibly oppositional, argumentative, impulsive, and was constantly on the go.  By about October that started filtering into the schools and the teachers were complaining too.   He'd constantly be in other kids faces trying to make them angry.  He couldn't sit still AT ALL.  He'd refuse to do anything they told him to and argued everything.  He's an EXTREME perfectionist and the slightest mistake would send him into a tizzy.  A few montsh ago he started taking picking on his little brother to a new level too... to the point of actually seeming to want to hurt him.  That's what led us to take him to be re-evaluated.

Well the developmental ped last week told us either this is an anxiety or mood disorder or ADHD and that Ritalin would be diagnostic... either it would make it worse which meant disorder or it would help which meant ADHD.  She really felt ADHD based on teacher discriptoins.  So here we are a week later and honestly I don't know if I think its helping or not.  Both schools are saying yes... awesome results.  Our regular ped says he just needs his dose upped (and medication changed to something sustained release... he said he hates "classic" Ritalin)... when we were in on Friday for an ear infection. But me... I am not sure??  I am supposed to call the developmental ped tomorrow with and update and advice for changes.

Is is normal for medication to cause a rocky start??  Or should we be seeing more dramatic effects if it was working?? 

 

very common for a rocky start. Did you say he also has an ear infection? Can I suggest you wait until that clears before you attempt to figure out meds? It very easily could be too low of a dose. Extended release do tend to be "smoother", but are more likely to cause "rebound". Try to be patient it is so hard to sort out. Especially in situations like your with multiple diagnoses and they're not even sure about what those are. Hang in you'll sort it out. Keep reading, keep asking questions...........................He's got tubes in so the ear infection just drained out and shouldn't have caused him too much of a problem.  I was just out of Ciprodex (we have a standing order to use for situations like this) and they made me bring him in before renewing that   So he's not really sick. 

alot of meds cause a rocky start and it takes 2 weeks IMO and my MDs before you can truly evaluate, unless side effects are horrible. You say the school is seeing much progress. How about socially? Are they seeing any progress socially? We go by the *if the good outweights the bad* line of thinking, then the med is doing its job.

 

I think the sustained release is a better option myself. My son has been on the adderall and the adderall xr . The XR was much better, though caused rebound. But rebound can be worked thru and helped. Now he is on Vyvanse and the rebound has slowly subsided. We have some days that are worse but I know what works to help him thru it (protein snack, and some coke or other caffineated beverage seem to help him, also quiet time ).

Good luck and hope things work out for you and your little guy. Please keep us posted.

I would say if the irritability & irrational emotions continue and you know he's not sick, you may want to seek a change in meds.  Our DS was dx about the time he turned 5 also (in Nov) and he started out by taking Adderall.  By the end of the 2nd week we had to change meds because he became so angry & aggressive.  We are now in a different group of meds with Methylin and Daytrana and he seems to tolerate them much better.  We don't have a "perfect fit" yet and it's been 3 months but we're getting closer.  From everything I've read here, the meds shouldn't change your child, just the behaviors that come from having ADHD (opposition, impulsiveness, hyperness, etc...).  Good luck!

I never even considered giving him some sort of caffiene to help in the afternoon.  What an intersting idea!!  I have SOOOOO much to learn about all of this still   My child won't touch pop... says its too bubbley and it hurts (he does have pretty nasty reflux so I'm guessing that aggrevates it)... are there other options that aren't sugar loaded but still have some caffeine boost to them??

As for is this helping him socially... no... but I think that comes back to his other underlying issues.  The psychologist who leads his social skills group (we didn't use him at all in this process because our insurance doesn't cover him diagnostically so he had no clue he was put on meds) said he noticed a huge difference this afternoon with Jason being more compliant and less distracted BUT also said Jason was still non-relational by choice.  Jason just doesn't care much about other kids... truthfully other children make him anxious.  He LOVES adults and LOVES attention from adults... can't get enough... but not kids.  Makes me sad watching him fail miserably trying to interact with kids his age.  We have him in two social skills groups and are hoping that things will click for him eventually as he gets older. 

Both schools said he had an awesome day again today!!   This afternoon hasn't been easy but it hasn't been impossible either.  I guess I'll just take the school success and go with it. 

I just want to thank everyone for all of their openness. We are starting to accept that our 5-year-old son may be ADHD. We thought it was just an immaturity thing; but over time -- and now with a couple of visits to a child psychologist under our belt -- we're starting to see symptoms of ADHD more clearly. He's as smart as a whip and can pay attention, but is very impulsive and hyper. He can do all the activities asked of him in preschool, but has trouble interacting appropriately with his peers. He tends to get their attention more physically than verbally; he can't seem to sit still; doesn't do well when he has to wait his turn or stand in line; etc. Also, his temper tantrums seem to be stronger than other kids his age -- but not sure if that's related to ADHD or not??? Would appreciate any advice to someone just starting down this path ... When do you start thinking about medication/asking the psychologist to consider it? Do you tell your friends or keep it within your family? What other challenges do you face? Thanks to all!I just also read your other post. You are right 5 is pretty young for a diagnosis, but it happens. Has he had a neuropsych eval. If he is already reading and above grade level he may struggle even more in Kindergarten. Nothing harder on and ADHD'er than boredom! May be worth spenidng the next few months trying to get as many answers as you can. There are doctors that will prescribe meds at 5, but most meds are approved for 6-12 year olds. As far as who you tell, everyone is different on this. Some tell everyone, some tell no one. It really depends on the atmosphere around you on that. If you're surrounded by skeptics, you'll only get frustrated. If you havea good support it's invaluable. My opinion is to be upfront with school, most teachers want to help........otehres will strongly disagree with this......very much a personal decision.................

Hi MominKC,

I too am in the KC area!  And my 5 yr old son was just recently diagnosed with ADHD and started meds.  We also thought it was immaturity, and when that hasn't improved, we started thinking about what else it could be.  We thought about meds when he began having real difficulties that started affecting his quality of life.  He has done great since we started!

We dealt with all the same issues you listed, tantrums, physical behavior, inability to wait his turn, stand in line, sit still, etc.  But, his focus and hyperness have improved so much since we started meds it is unbelievable.

As far as who we told, we only told people we thought wouldn't label or judge him.  The school knows, and some family and close friends.  Other than that, no one else knows.

This board has been a great resource for me - hope it is for you too!  Kind of cool that you are in the same area too!

We've been very open about the ADHD diagnosis with my son... but honestly after going through all the autism stuff ADHD seems "normal" to me.  Not that I am ashamed of anything to do with my son but its much easier to say he has ADHD than questionably Aspergers. 

His teachers have been VITAL throughout this entire process of getting him evaluated so we've been very open with them about the results.  We've really been blessed with some amazing people in our lives... well accept for dh's family but I digress on that one

Have you considered that it may not be ADHD at all, but PANDAS instead. Especially if he has had lots of ear infections, or strep infections. PANDAS??  Whats that??  He's had chronic ear infecitons... tubes twice and adeniods out.  Still gets ei's with tubes.  Many infections have been antibiotic resistant.  What does that have to do with ADHD??