Quillivant XR...UPDATE #2 Paging auntie😃

[Deleted]

Hi all!

DD was diagnosed with ADHD Inattentive and Aspergers this week. We started her on 4ml of Quillivant XR this morning.

So far what I've seen is hyper focus, but on things like tv shows and anger towards her Dad. She's talking a million miles an hour. Any experience or suggestions for when I talk to the Dr on Monday?

Thanks,
Steph

Update: We gave the meds a month per doctor's orders. It obviously wasn't the right fit. She was less fidgety and less all over the place, but she was agitated all the time. She's about to be kicked out of daycare due to constant meltdowns. Last week, without the meds, she was meltdown free 3 out of 4 days at daycare. Obviously 3 good days isn't enough, but they're giving her another chance.

I'm at a loss. I don't know how to help or where to go. All the opportunities offered aren't covered by insurance and cost too much out of pocket. I have an appointment with a "behavioral health" center, but I'm not sure that's the right fit. Any advice? Thoughts? Hair pats?

[auntie]

May 30, 2015 14:33:34 GMT -5 @evilin68 said:

Hi all!

DD was diagnosed with ADHD Inattentive and Aspergers this week.


Why were you given an Aspergers dx? This is no longer an official DSM dx. DS was dxd with Aspergers 16 years ago; his psychiatrist and psychologist still use the terminology as DS self identifies having grown up with it, but they have changed his dx paperwork and coding to ASD to reflect the current DSM-5. In school, he was always classified on his IEP under Autism.


We started her on 4ml of Quillivant XR this morning.


How old is your DD? This dose is 20mg of stimulant. If your DD is very young or if she's hypersensitive to psychoactive meds (as many on spectrum are) this could be too high a dose. 

Or maybe she's one of those people who doesn't do well on this medication. DS does great on Adderall, but Concerta (like Ritalin and Quillivant) make him anxious and emotionally one hot mess. 


It could be, too, that the medication wasn't properly reconstituted or mixed and that she got too much or too little of the active ingredient. I avoid liquids, especially suspensions, for this reason.


Or it could be that the stimulant made her more aware and more anxious which exacerbated the ASD tendency to get "stuck". DS can only do well on a stimulant if he has something for anxiety on board. TBH, his SSRI does as much for focus as his Adderall.




So far what I've seen is hyper focus, but on things like tv shows and anger towards her Dad.


Usually "hyperfocus" is seen as a deficit in ADHD rather than the side effect of a medication. If she's angry with dad, maybe this is emotional lability as a side effect of the meds. Generally attention to electronics like TV, computers or gaming are not considered when looking at attention.


She's talking a million miles an hour. Any experience or suggestions for when I talk to the Dr on Monday?


Are you certain of the ADHD dx? Typically those who actually have ADHD have a paradoxical reaction to stimulants that calms them down. Sometimes, when you don't get that reaction, it's because the ADHD-like behaviors have some other cause- mood disorder, prenatal drug exposure, ASD, Specific LD etc.

Hope you heard back from her doctor today.

[Deleted]

Jun 1, 2015 10:20:19 GMT -5 auntie said:

May 30, 2015 14:33:34 GMT -5 @evilin68 said:

Hi all!

DD was diagnosed with ADHD Inattentive and Aspergers this week.


Why were you given an Aspergers dx? This is no longer an official DSM dx. DS was dxd with Aspergers 16 years ago; his psychiatrist and psychologist still use the terminology as DS self identifies having grown up with it, but they have changed his dx paperwork and coding to ASD to reflect the current DSM-5. In school, he was always classified on his IEP under Autism.

The actual dx is ADHD. The Aspergers was discussed because her GADS scores identify her as having Aspergers. 
We started her on 4ml of Quillivant XR this morning.


How old is your DD? This dose is 20mg of stimulant. If your DD is very young or if she's hypersensitive to psychoactive meds (as many on spectrum are) this could be too high a dose. 

Or maybe she's one of those people who doesn't do well on this medication. DS does great on Adderall, but Concerta (like Ritalin and Quillivant) make him anxious and emotionally one hot mess. 


It could be, too, that the medication wasn't properly reconstituted or mixed and that she got too much or too little of the active ingredient. I avoid liquids, especially suspensions, for this reason.


Or it could be that the stimulant made her more aware and more anxious which exacerbated the ASD tendency to get "stuck". DS can only do well on a stimulant if he has something for anxiety on board. TBH, his SSRI does as much for focus as his Adderall.

She's 6. We gave her the rx dose on Saturday and DD mentioned, when asked how she was feeling, that her heart was beating fast and her palms were itchy. On Sunday we took her down to 3ml and she did much better. It was easier to keep her from any "meltdowns", she wasn't fidgeting, and she followed directions.



So far what I've seen is hyper focus, but on things like tv shows and anger towards her Dad.


Usually "hyperfocus" is seen as a deficit in ADHD rather than the side effect of a medication. If she's angry with dad, maybe this is emotional lability as a side effect of the meds. Generally attention to electronics like TV, computers or gaming are not considered when looking at attention.

What I mean by hyper focus is that she was actually paying attention to her shows and not running all over grabbing stuffed animals and trying to do 4 things at once. The doctor did mention that this medicine might make anger/sadness more pronounced.


She's talking a million miles an hour. Any experience or suggestions for when I talk to the Dr on Monday?


Are you certain of the ADHD dx? Typically those who actually have ADHD have a paradoxical reaction to stimulants that calms them down. Sometimes, when you don't get that reaction, it's because the ADHD-like behaviors have some other cause- mood disorder, prenatal drug exposure, ASD, Specific LD etc.

Hope you heard back from her doctor today.

I'm certain. She also has markers for ODD so that could be part of it. I have a call in to her doctor and an NP that specializes in children with these dx. Thanks for getting back to me. I'll let you know how it goes.

[Deleted]

I apologize if I come off short. I'm a bit frazzled. Sorry and thank you again!

[auntie]

In some kids, ASD can be mistaken for ODD- they can look a lot alike.

Good luck; I hope you get answers sooner rather than later.

[auntie]

May 30, 2015 14:33:34 GMT -5 @evilin68 said:

Update: We gave the meds a month per doctor's orders. It obviously wasn't the right fit. She was less fidgety and less all over the place, but she was agitated all the time. She's about to be kicked out of daycare due to constant meltdowns. Last week, without the meds, she was meltdown free 3 out of 4 days at daycare. Obviously 3 good days isn't enough, but they're giving her another chance.

I'm at a loss. I don't know how to help or where to go. All the opportunities offered aren't covered by insurance and cost too much out of pocket. I have an appointment with a "behavioral health" center, but I'm not sure that's the right fit. Any advice? Thoughts? Hair pats?

Hi Steph-

Sorry it wasn't a good fit. 

How old is your DD? 

You have some options, depending on what you and your physician are comfortable trialing. Methylphenidate is the active ingredient for Ritalin, Concerta and Daytrana- so they'd probably not be a good one to try. You could try another stimulant like Dexedrine, Adderall or Vyvanse. Some kids, like mine, do better on the dexedrine-like meds than the Ritalin-like ones. For others, it's the other way 'round. 

Or you could trial a Provigil which is sometimes prescribed for ADHD. Strattera is another option- it's not a stimulant and is supposed to help around anxiety. The old-line antihypertensives are sometimes used for attention and hyperactivity- Tenex and Clonidine most often. There are newer long-acting versions- Intuniv and Kapvay- developed for ADHD.

Some kids can be OK with a stimulant if they take it with something for anxiety. For a kid who acts out in the form of meltdowns, a neuroleptic might be suggested- Risperdal often. Or an SSRI if there's a lot on anxiety and compulsive thoughts.

You could also have someone observe her in her day care setting to look for antecedents to the meltdowns. It could be there are predictable times when she needs more support to maintain the expected behavior. Or it could be that she needs a different kind of day care set up- maybe something more structured or with few kids per adult.

Getting help is hard. I get it. None of DS's clinicians take insurance- not his dev pedi, psychologist or psychiatrist. The behavioral health center could be good or bad. FWIW, ADHD is a behavioral condition, so they should be qualified to manage it medically and with behavior mods. If they "get" ASD in girls that's great. Often you have to seek out a clinic affiliated with a pediatric teaching hospital to find people who take insurance and understand a female presentation of ASD.

[Deleted]

Paging auntie!

We have an update! Things haven't gotten better. Her therapist told me that she isn't on the spectrum and doesn't have ADHD. This is without her doing ANY tests. The therapist said she has ODD and IED. I was told I didn't put her in timeout early enough and now I'd have to for everything. For any misbehaving she lost "privileges" That boiled down to giving her "3 hots and a cot" if necessary. The therapist also told me that Lil should only wear what I decided, eat what I decided, and sleep where I decided. If Lil lost everything (toys, stuffies, books, her bed, etc.) she could read educational books and write reports on them. When she wasn't doing that she should be doing chores. All. The. Time.


Every appointment was a nightmare. Lil and I both felt like we were being punished. I ended her treatment with this woman. It wasn't working and there was no love involved. It all seemed very cold and cruel.

After another rough year at school, we redid the tests they gave us last year and a handful of others. I found a doctor in the same behavioral office and she was tested today. I also have to fill out more of the tests we did before.

Wish us luck that we get some definitive answers!
Steph