Medication confusion: My daughter is 1... - CHADD's ADHD Pare...

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Medication confusion

Jalapenochips profile image
23 Replies

My daughter is 15 with Adhd, dyslexia and anxiety. We've tried Methylphenidate, Metadate, Adderrall, Vyvanse, Concerta and the old patch. These were tried at different ages but most caused more anger, not enough sleep, losing weight and loss of almost all short term working memory. We have not found what will work for adhd and have not tried any anxiety medication yet. She's on Medi-Cal and I feel like we haven't had the best experts to hone in on her specific needs. It's been about 8 years and we're still lost : (

Any advice is welcome : ) If anyone has a teen girl with similar diagnosis's please share what you've tried. I realize what works for one doesn't mean it fits for my girl but your story may shed light on something. Thanks!

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Jalapenochips
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Jalapenochips profile image
Jalapenochips

I forgot to say she also had ADP

Onthemove1971 profile image
Onthemove1971

Has she tried any non stimulants? Like Guanfacine? This will not help with impulsive behavior but should help with the other symptoms.

Good luck!

Jalapenochips profile image
Jalapenochips in reply toOnthemove1971

No, she hasn't tried Guanfacine. Thanks, I'll bring that up to her medication doctor

From my son’s experience (but he is only 10) non stimulant Atomoxetine works just fine for him. I disagree that non stimulants don’t help with impulsiveness.

If anything in my son’s case stimulants didn’t help with impulsiveness and in fact made him more impulsive than ever. I mean we could have a long discussion what kind of impulsiveness etc 😄Also stuff is blurred a bit because in my son’s case Atomoxetine causes slight irritability but that’s really easily manageable.

However on stimulants my son suffered from all side effects - from common to rare, including aggression (yes, you can say aggression is a lack of impulse control, so to be honest now him being slightly irritable- I can live with that!), rebound, weird neurological stuff such as tics and so on…And he developed anxiety on stimulants.

If your daughter is a teenager and is dealing with puberty, hormonal changes etc then non stimulant would make sense as all non stimulants are somewhat anti depressants as well and help with anxiety.

Each non stimulant works on slightly different neurotransmitters so if your daughter tries one and it’s not good then she should try another one. But it will be a long process- you need to give it a go for about 6 weeks.

For example in US you have Qelbree and this is not yet licensed in Europe but in US it has been used with success for a good few years now. You could ask here specific questions to parents, for example asking exactly about experience of parents of teenage girls with using Qelbree and see what they say.

Okaythanks profile image
Okaythanks

You could ask her doctor about antidepressants. I think fluoxetine is sometimes used for adhd and it would help with the anxiety too.

Jalapenochips profile image
Jalapenochips in reply toOkaythanks

Thanks : ) yes, I think she needs some type of anxiety medication too

MaudQ profile image
MaudQ

I would definitely ask your psychiatrist about non stimulant medications. Also, I would explore medication for the anxiety. Anxiety can also affect working memory, focus, emotional regulation and such.

Jalapenochips profile image
Jalapenochips in reply toMaudQ

Yes, that's exactly what I'm going to do now : )

violinteacher profile image
violinteacher

I am really only at the beginning of supporting my adolescent girl - she’ll be 13 later this month and was diagnosed a year and a half ago with ADHD, anxiety and depression. We are on Medicaid, and we were so fortunate that our nurse practitioner also happened to be the parent of a teen girl with ADHD. The NP also has sense transitioned to being a mental health specialist, so she’s been a key support for us.

Here is what she helped with:

1. Genetic testing for medication (pharmacogenetic testing). Testing out of pocket through a hospital/clinic is less than $200 I believe. I had to pay for mine a few years ago, but Medicaid covered my daughters. This is a huge lifelong help - it shows us how well she’ll process various mood medications and stimulants, and offers a guide to what is a safe starting dose. We have been saved so many months of “try this and try that” because of this $200 test.

2. My daughter is slim, and our NP immediately ruled out stimulants until it wouldn’t interfere with weight gain and appetite. So we have tried a few non-stimulants, and anxiety support medications. What we found works best for her is Qelbree (truly amazing. Two weeks of mild side effects as she stabilized on it, and now nothing negative). She takes it at night because it does have a slight drowsy effect that made her really groggy in class when taking it in the morning. Biggest downside: if she skips doses she’ll end up throwing up at day. For her, who has had issues with us and hiding her medication, this is actually been a positive step. She can immediately recognize the stress her body experiences without the Qelbree support, and she is holding herself accountable so much better.

3. Fluoxetine is what she takes for anxiety. Arriving at this took a few tries with options and doses, and we largely worked with her genetic testing results to guide us. She also really is happy with this and with the lack of side effects.

Jalapenochips profile image
Jalapenochips in reply toviolinteacher

Wow! This is really good to know : ) My niece/daughter has Medi-Cal and they wouldn't do the genetic testing and Qelbree probably isn't one of the approved medications because of medi-cal. We have Kaiser and I've been with them my whole life but never needed any specialty help. We've tried nothing but stimulants because the doctors ask me what we want to try instead of suggesting. After 7 years of trying they still haven't guided us to any different path : ( I hope I can get that pharmacogenetic testing. I would have did it years ago if someone in the medical field would help me how to do it. I'll pay whatever it takes to help her find a balance 🙏🥰

amandamelinda profile image
amandamelinda

That’s so incredibly frustrating, I’m sure! I’m a licensed MFT (I am NOT a doctor) and specialize in ADHD. I have worked with clients who appear to have intolerances to several medications. There is a service available that can test to see which medications may not work for you/your child. The thing is that not all psychiatrists/physicians will work with these companies. Worth checking though!

I also second other comments here - it may be helpful to focus on supporting her anxiety rather than the ADHD right now.

genesight.com/

Jalapenochips profile image
Jalapenochips in reply toamandamelinda

Thanks! I reached out to Kaiser for the genesight testing twice and they say no. I'm trying to see how to get a test like this outside Kaiser where I can pay out of pocket. Yes, I'm going to focus on the anxiety now : )

amandamelinda profile image
amandamelinda in reply toJalapenochips

check out genesight.com They should have some options for out of pocket or MediCal

Jalapenochips profile image
Jalapenochips in reply toamandamelinda

I did call Jeanne site and they said that it Hass to go through a doctor : (

Jalapenochips profile image
Jalapenochips in reply toJalapenochips

genesight

Fish1fish profile image
Fish1fish

Similar boat! Stimulants made our daughter more aggressive and angry.

Echoing what was already said about gene testing, that confirmed that stimulants were not a good fit for her. Switched to Guanafcine plus modifying our own behaviours seems to be working well enough.

Jalapenochips profile image
Jalapenochips in reply toFish1fish

Thanks : ) I think that's where we're headed next

LAJ12345 profile image
LAJ12345

healthunlocked.com/adhd-par...

Please read my comments about diet , nutrition and using multinutrients for adhd. These have been very effective for my son and I think they should be the first thing to try for young people but doctors won’t usually recommend them.

They start about half way down this recent post. LAJ

Yellow-cello profile image
Yellow-cello

I just wanted to chime in and give a different take on genesight testing. We paid to have it done for my son and, long story short, our new psychiatrist told us studies now show it’s a 50/50 chance each medication result is correct. After several failed medications in the “green zone”, my son is now thriving on the only one in the “red zone”. Basically, it’s a coin flip. Might work if you luck out but for us it prolonged our search for an effective med and was a waste of money. Switching psychiatrists was the best decision made for him.

Peerandparent profile image
Peerandparent

My anxiety is mostly a direct result of the consequences of living with ADHD. Controlling and managing the ADHD is the most effective way to manage my anxiety.

While trying more and different approaches to medication, also make sure you're doing everything non-medical you can think of.

Regular physical exercise can make an immense difference, as can relaxation and mindfulness WHEN A REGULAR PART OF THE DAILY ROUTINE. It took me a long time to figure out that waiting until I was having a panic attack to try relaxation was... Counterproductive is probably the polite way of putting it.

See what structure you can add to their environment and routine. I try to do the same things in the same order when I get home, and because of that I almost never have to go hunting for my keys (except for that one time I accidentally left them in my freezer). My mantra with my son on our way home from his school is "What do you need to do when we get home?" Doing things in the same order every day can make it harder to forget things like unpacking your lunchbox, or checking the mail, or brushing your teeth.

Having a tidy environment (or maintaining it at least) may be an unrealistic goal, but there could be a few strategic areas that stay tidy for a specific purpose (e.g. place to study, place to put backpack, etc.)

Adding a buffer in the schedule for planning can be important. I make sure I think about tomorrow's meals before bed so I'm not scrambling to figure out what to feed my kids 15min before dinner. In my son's case, making sure he takes a couple minutes at bedtime to make sure his library books are put away, that he has clothes for tomorrow, and so on, makes the morning routine smoother.

Figuring out what works can be hard; every home has different dynamics. As you figure out strategies, do your best to be consistent. As much as we ADHDers rebel against structure, we benefit greatly from it, especially if we have a hand in creating it.

Peerandparent profile image
Peerandparent in reply toPeerandparent

Oh, and alarms! I use them far more than my calendar, because the alarms can be snoozed. I've got about a dozen or so daily alarms, as well as weekly and monthly reminders.

Most of my alarms are for routine things, like taking a lunch break at work, going home on time, prepping meals, going to bed on time, paying bills, cleaning, picking up the kids from school... Basically anything that can slip my mind.

I can also have fun coming up with interesting and entertaining alarm sounds and music :-)

Yellow-cello profile image
Yellow-cello in reply toPeerandparent

Wow, I had to respond because your post sounds a lot like me. I’ve been in treatment for general anxiety but as I think about it, my revved up feeling is mostly related to trying to stay on top of my very good but full life- full of a lot of little but important things to remember and do for our family of five! I do all of these strategies (alarms, etc) but I had an easy time in school and never considered that I might have adhd. My kids are all slowly getting diagnosed (none of them are hyper so it’s taken a while). Wondering if I should consider adhd med for anxiety for myself…

ADHD_DAD profile image
ADHD_DAD in reply toPeerandparent

I do not wish to highjack this discussion, but I wanted to reply to thank you for this very practical and helpful advice. If you've read my (infrequent) replies, you know our journey. Briefly, we are now greater than 10 years into it and have had great success managing my (now 17) son's ADHD with meds, accommodations at school (in our case, a change to small, private school was required) and lifestyle changes (including repetitive routines). It has been so successful that my son is consistently summa cum laude at school which has opened the door to very good college choices. We, therefore, worry how he will function in that setting and without his mom substituting for his executive function. Your replies above have been very reassuring and I "screenshotted" them and texted them to him (in short sections in multiple texts) as a sort of "how to" guide. I really feel like many of your coping mechanisms can be useful to him as he transitions to more independence. I love your use of alarms and think it would be very helpful to him (though he startles easily, so we'll see). I am glad that you have found such effective tools and that are able to pass them along to your own child. Thank you again for your advice and good luck to you.

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