DD finally with a dx of ADHD inattentive with characteristics of hyperactivity, depression, ODD and anxiety

[MyReese]

Hi! New here. My 9 yr old daughter finally got the dx of ADHD inattentive, with characteristics of hyperactivity (spinning in circles and bouncing off beds and furniture), depression, ODD and anxiety. Her pediatrician prescribed Focalin 10mg (she is tall and skinny, only 34th percentile in weight with a bird appetite unless it is sugar). We are both nervous to start the medication tomorrow. She is in 3rd grade, hates her teacher and has started getting into trouble at school. Home has always been a struggle with anger, emotions, focus, following directions, defiance, etc. The therapist believes ADD is the root of her problems and believes we will see improvements in all areas if we get the ADD treated/under control. She will still see the therapist every other week. My husband fought this for a while, saying, "you won't put my daughter on meds and label her." He finally threw in the towel and asked for help. I have high hopes we can all feel good again Any advice, success stories, words of wisdom? TIA!

[anirush]

One of my grandsons was on it all through grade school with great results. Made the honor roll. The other could not do stimulants. Made him angry. Won't know until you try. Feel sorry for kids who are constantly in trouble. Not good for their self esteem.

[Hidden]

That’s great that you have made the first step. The only thing I’d say with experience of my son who also had anxiety is that stimulants exacerbate this usually. Stimulants target focus but often mess everything else like mood and make kids more anxious - this has been the case with my son and also when you look at the side effects list you will see this as well.

Dexmethylphenidate- Focalin is pretty much what my son was on but under different brand name but his was Methylpenidate. For him everything went worse not better in this medication- the worst 8 months of his and ours life as doctor kept saying that what he has been suffering wasn’t caused by the medication. Surprisingly when we stopped medication all the terrible suffering stoped- he could eat again, he could sleep again, his mood improved (on Atomoxetine), he stopped being anxious, his tics stopped, he stopped suffering from rebound.

Rebound is a big problem for kids on stimulants so watch out for this.

If she has anxiety then maybe non stimulants would be better?

However every child is different and it well may be that for your daughter Focalin will be just what she needs.

What ifs say- start with he smallest possible dose and don’t go up if you think that symptom control is already good enough for you.

My sons doctor racked his dose very quickly up to 30 mg methylpenidate which really made him a little mad man. Consultant insisted that that’s the maintenance dose. My son actually was good on 5mg and I told the doctor this and he was so dismissive and said that it’s not possible as this wouldn’t work at 5mg. So basically be tuned in with your child and believe what you see, observe your child, record sleep patterns and eating etc. don’t go up with he dose if you are happy

[MaudQ]

My kid takes Adderall, Guanfacine and fluoxetine (Prozac). She started on Ritalin but it made her anxious and irritable. She was on it for one day, we told the doctor and the doctor switched the prescription. The adderall does affect her appetite. We worked with her psychiatrist and ped to monitor her weight - she’s now in the low normal range. I take Ritalin and it makes me feel calmer. People have very different responses to medication; it can take some trial and error.

One thing that helped us a lot was parent coaching: our kids therapist would do parent sessions with just us. Changing our mindset and behavior was huge and really helpful.

[eva2022]

We also just made the decision to start our child taking medicine to help with the symptoms of ADHD. Within a few days, he self-reported that he was “learning how to focus on only one thing at a time” (unprompted) and “learning how to make friends at school” (unprompted). It’s not a miracle cure-we have a LOT of other supports in place. Medicine gives our child the two seconds it takes to make a decision instead of an immediate reaction. He still REALLY needs the other supports that we provide for him at home and at school.

Two books have been very helpful for me:

12 Principles for Raising a Child with ADHD

Straight Talk About Psychiatric Medication for Kids

The first is very helpful with setting up a home and school environment that enables a child to succeed, the second made me feel VERY confident in our decision to help our child through medicine.

Best of luck! This community has been a big support for me.

[Lion_Creek]

My 9 year old who is very very petite started on Focalin a little over three months ago. It has been life changing! She loves how much easier it is for her to pay attention, get her work done in class, not argue, and not vocally stim. Her teacher is very impressed with the improvement, too, and reports that it hasn't impeded her spunky personality, just made things easier in the classroom. We make sure she gets a big breakfast and eats a big dinner and dessert in case she doesn't eat much at lunch when we can't monitor. She hasn't lost weight, continues to grow, and seems to be doing fine. It's not like she doesn't have ADHD anymore, but it's much much easier for her to manage it and do what she wants to do without getting scolded as much. We waited two years before starting medication, and I'm so glad we didn't wait longer.

[NYCmom2]

My 10 year old is on Focalin (Dexmethylphenidate) and doing great! every person reacts differently.

We make sure he has a big breakfast since his appetite fades as the medicine activates in the morning. I pack a bag filled with anything he will eat at school and he will peck at it a little. When I pick him up I have a tasty lunch and special snack ready - he gets the snack once he’s eaten his lunch. And that has worked to keep the calories up.

By dinner time he’s genuinely hungry and the medication begins to wear off.

My advice is get the homework done immediately after school and ready for bed as early as possible. Once the medication wears off they’re so tired they just want to veg and watch a cartoon or play quietly.

Keep after school activities and demands to a minimum and let them relax and play as much as possible. The medication has been a huge game changer for my kid but it does take an energetic toll on them. School, focus, and meeting demands takes a huge effort for kids with ADHD; celebrate any small victory and don’t add new demands right away.

As the Dr monitors and possibly adjusts the medication keep track of behavior changes and bring up any concerns you may have with the Dr. It’s a little trial and error when finding the right medication and dosage so be patient but advocate if you’re concerned.

A podcast I enjoy is Beautifully Complex: Navigating Neurodiverse Parenting

[MyReese]

Thank you all for sharing your experiences and words of wisdom. We didn't get to start Friday like I planned due to a lot going on, but we started her first dose today. She was still combative today for a bit, compulsive with her mouth saying, "I hate you" when she didn't get her way. She also just wanted to veg all day in bed. I did get her out for a little bit of a walk and golf cart ride. I'm sure the medicine could take some time to work if it works for her. She has eaten her normal bird diet too which is good. lol

[Aspen797]

So glad you found this forum! It’s a welcoming, safe space. I wanted to share a couple of books/authors who have been helpful. Jessica Minahan/The Behavior Code has lots of great insights online and podcast as well. She is great at explaining how anxiety drives difficult behaviors and how to change the story. Ross Greene/Lives in the Balance/explosive child—is great at explaining easily frustrated and defiant behaviors and strategies that defuse and heal. Also want to note that guanfacine, a non-stimulant ADHD medication, is sometimes helpful for anxious/irritable ADD. A child psychiatrist or developmental pediatrician (healthychildren.org/English... often has more experience and tools at their disposal, so don’t give up or feel deflated if the first medication does not check all the boxes.

[MyReese in reply to Aspen797]

thank you! She had a rage episode today due to being told no to eating more candy. She had some Easter candy after breakfast, but wanted more. I said no, that I feel she’d had enough, so she got mad, threw the candy that was in her hand and said she hated me.. I then asked for her phone and the rage began. I started up the stairs to get her phone, so she was grabbing me and hit me. It went downhill from there. We tussled over the phone which made me fall backwards, hitting my face on the bathroom door trim. She told me she hated me so much, wished I’d die and she hopes she can grow up without a mom like I did. (My father passed away when I was a child. I lost my mom in my early thirties). I can’t help but feel hatred toward her too when we go through these rage episodes. I guess I let the rage get to me where I react negatively too. I hate this!

[Aspen797 in reply to MyReese]

I’m so sorry you both had such a horrible morning. The struggle is real. Sometimes these patterns develop and it feels never ending. But it isn’t so. Medication, therapy, and 504’s and IEP’s all work together and can really help. When our son was defiant it was such a struggle. Having a behavior trained therapist who coached me in positive parenting techniques really helped me (and him) tremendously. Triple P parenting online is free through many local groups or super reasonable on their website as an alternative.

A first step was moving away from personal demands by relying on a co-developed written schedule and using a lot of built in ‘first we do this, then you get that”. First we get dressed and pack backpack, then we eat breakfast; first we do an hour of our homework, then we have TV, etc. Instead of ‘No, you can’t have X” It’s “yes, you can have x after you do y”. We also used planned ignoring—any fussing or back talk we would walk away without replying, leave the room, go to the car, etc. and remind ourselves that every argument is an opportunity for learning and that by not responding we aren’t giving in, we are teaching the skill of how to sit with and accept his uncomfortable feelings (the word ‘no’) without arguing. Consequences are reasonable and established and understood beforehand and are administered when all is calm, not at the time. The lives in the balance website is really helpful on explaining how to work with your child on creating boundaries and consequences. A website that describes the escalation cycle and how behavioral principles can help break it is here: pendletonpsych.com/therapy-....

Also check out Tilt Parenting podcast, book, or online forum. It’s a welcoming and reaffirming place. You need to connect with others in similar circumstances and nurture yourself while you nurture your relationship with your child.

Hang in there. With all of the right supports it gets better.

[MyReese in reply to Aspen797]

Wow! You really sound like you have walked a mile through this and have great tools. Thank you! I feel like I have so little time with work, learning more about her and how to deal with the ADHD. So much to learn and not enough time. Such is life. lol

[NYCmom2]

I hope it’s going well! Any updates more than two weeks into the journey?

[MyReese in reply to NYCmom2]

it’s not going well at home:(. Teacher says there’s a notable difference in she can get Ella redirected better and be able to stop at the warning, but there’s still some issues with a certain classmate. We see the pediatrician tomorrow for a follow up, thankfully. and the psychologist on Saturday. Home is really hard.

Thank you for checking in. This is such a hard journey.

[NYCmom2 in reply to MyReese]

It is a challenging journey that requires patience and commitment. It does get better. You will form deep bonds and understanding with others on a similar journey and every grows from the process.

The positive news is that there is some positive change at school! Many specialist will say behavior often improves at school first, which is what we need, followed by improvement while at home. Stay the course!

A parenting support group/courses (also books etc) that I benefited from immensely susanstiffelman.com/

ADHD Documentary: The Disrupters

It helps to not feel alone. Lots of people are on a similar path!

[MyReese in reply to NYCmom2]

Thank you! Her pediatrician doubled her meds, so she is now taking 20mg daily of generic Focalin which we started 4/29. So far, she appears more relaxed at home and easier to talk to. There was an incident at school yesterday though:(. The incident wasn’t horrible, however, still an incident. We are trying to praise her a lot. I’m tired. It’s really hard to help someone else with issues when I suffer from anxiety and depression myself.

[NYCmom2 in reply to MyReese]

So true! I get anxious extrapolating my son’s present day behaviors into the future. But when I reflect I can honestly say he’s improved and is maturing slooowly. Baby steps!

When I schedule self care into my day I feel so much better. As simple as a rest in my room with the lights low or blocking out time to go for a walk, see a friend, exercise or read a book. Helps me reset.

I was diagnosed with ADHD at age 40. Getting treatment and stimulants has allowed me to manage my life and help my kids without as much stress and anxiety.