Guanficine help!

[toastie]

I probably butchered the spelling of it.

Friends of ours have a 7 yo DD on guanficine. She is hard of hearing and has some form of ASD. Adopted from china at 4, she was abandoned at 3 months old so some of her behavior is institutional autism.

She was started on guanficine because of her "mania". She would have periods of time where she would knock everything off shelves, anything that has pieces she will take apart and occasionally destroy. She is food obsessed, poor eye contact, nonverbal. She knows about 2-300 signs but only offers them when prompted. She will either scale furniture and appliances or come lead you to what she wants. On the flip side she is the sweetest kid. She also self harms a bit with picking. She won't pick unless there is a wound, but bug bites, scratches, etc she will just pick at. She is so gentle and she loves to cuddle and sit with you.

She was on the extended release of guanficine but was chewing the pills. The neuro has said she doesn't have ASD and that switching the end formulatiOn will "cure" her. She started this new med last week. She is now having random periods of AGGRESSION. She just scratched the heck out of me, bit me, her mom her dad and my husband. She's hitting herself in the head and just not her self. These periods of rage and aggression are followed by periods of extreme exhaustion. She finished her rage and sAt on my dh's lap and picked at a piece of pizza, literally scratched at it with her finger. Until she dozed off.

We don't have much experience with behavior stuff, but she is not doing this intentionally. She has this look on her face like she needs to do this she doesn't know why and she cannot stop.

Any insight? We are very close with the family and they are coming to us for advice. Our dr warned us that since my sons have epilepsy behavior meds could make seizures worse and we don't know her true background I threw that out as a possibility because of the extreme exhaustion that follows

And just an FYI this is not a judgy post. This is a my heart is breaking because something is going on with her and she can't tell us. We are all on the same page of helping her.

[akafred]

Is her blood pressure being checked regularly? Are the rageful episodes happening more when the med would be in effect or as/after it wears off? I have heard of people having high bp and rages as a rebound when the med wears off. Typically guanfacine is given to help kids who have rages.

[toastie]

May 22, 2017 21:27:58 GMT -5 akafred said:

Is her blood pressure being checked regularly? Are the rageful episodes happening more when the med would be in effect or as/after it wears off? I have heard of people having high bp and rages as a rebound when the med wears off. Typically guanfacine is given to help kids who have rages.

Thank you! Her bp isn't checked regularly but your cluing in about it wearing off may be the ticket.  The neuro said when she was chewing the extended release form she could be getting over dosed because it was releasing all the meds at once. so now she is in the multiple dose regular release medication.  We are wondering if she is experiencing withdrawal from dose change.  

She has had no appetite, lethargic, fits of rage, self injuring, and just this look of panic and confusion in he face, she hasn't been herself.

i recently withdrew from cymbalta and as soon as you said wearing off it clicked. I know it's supposedly not supposed to be a severe withdraw, but every kid is different and they refuse to acknowledge cymbalta discontinuation syndrome even though the CDC keeps a fact sheet on it!

[freezorburn]

I don't know anything about this stuff, but please keep us updated. Praying for the family that they can find some balance.

[mrsbuttinski]

Not a fan of Intuniv. It's just a new patent of a very old generic HBP medication- Tenex (aka guanficine). Not sure if chewing the pill is an issue, but certainly they could try 2X daily dosing with the generic shorter acting medication- that can be crushed and put in applesauce or something.

Intuniv is sometimes used in younger kids who present with hyperactivity. Not sure I would include "mania" as an indication. Does she have an ADHD dx? Because this is a med for HBP, it can have the side effect of making the person really tired and lethargic. DS hated how it made him feel; I hated how it brought nothing to the party except to make my kid feel miserable.

Stimulants are the first line medication for ADHD, but they can exacerbate picking. BTW, for many on spectrum picking is more of an OCD-type behavior than a SIB. Often there's a sensory piece to it as well- picking because a scab "feels funny" or is pulling as it heals. Sometimes preventing the scab with ointment and covering it can prevent picking.

Picking behavior often improves on SSRIs.

She sounds like a complex kid. I wonder if they'd do better partnered with a dev pedi/psychiatrist team. Why a neurologist? CHOP's adoption clinic might have resources as well.

[toastie]

May 23, 2017 6:34:09 GMT -5 mrsbuttinski said:

Not a fan of Intuniv. It's just a new patent of a very old generic HBP medication- Tenex (aka guanficine). Not sure if chewing the pill is an issue, but certainly they could try 2X daily dosing with the generic shorter acting medication- that can be crushed and put in applesauce or something.


This what they just switched to. She takes meds fine, but chews them all she doesn't understand swalowing them.

Intuniv is sometimes used in younger kids who present with hyperactivity. Not sure I would include "mania" as an indication. Does she have an ADHD dx? Because this is a med for HBP, it can have the side effect of making the person really tired and lethargic. DS hated how it made him feel; I hated how it brought nothing to the party except to make my kid feel miserable.


She has been on the meds for about 6 months with great improvement just very up and down.

Stimulants are the first line medication for ADHD, but they can exacerbate picking. BTW, for many on spectrum picking is more of an OCD-type behavior than a SIB. Often there's a sensory piece to it as well- picking because a scab "feels funny" or is pulling as it heals. Sometimes preventing the scab with ointment and covering it can prevent picking.

Picking behavior often improves on SSRIs.

She sounds like a complex kid. I wonder if they'd do better partnered with a dev pedi/psychiatrist team. Why a neurologist? CHOP's adoption clinic might have resources as well.

They have crappy insurance because of private coverage so they are very limited with where they can go.  CHOP would be difficult outside of. A yearly visit, its 2.5 hours away and 2 of their children are still foster children and their caseworker is not. A fan of them so she rarely gives them permission to take them out of state.  

They saw a neuro neuro at the demanding of their regular pedi. They are also in a district that keeps kids in district and they are really failing her.  The ironic thing is 2 of ds1's classmates just transferred to her school so it's considered wonderful.  She's a smart cookie but is so unpredictable. She is EXTREMELY impulsive beyond what I've ever seen in my son so it's out of my experience.  She loves iPads/iPhones and even while playing with them, will turn and throw it into the floor impulsively. They freak out that it's broken. She takes covers and cases off obsessively.  And she is an eloped made much worse by her orphanage use when she is someplace that feels institutioshe panics and bolts on top over natural tendency to run. 

At school she has at least 2-3 people attending her at all times.  She has still managed to get scissors at least 10 times this year and destroy the clothing she was wearing, cut her hair, flush things down the toilet.  As of right now she has an educational diagnosis of ASD from her last district, and microtia which causes her heard of hearing.

I have been slowly urging a developmental pedi.  We took ds1 last week and I'm hoping to use that to kind of point the way.

[toastie]

Apologies for the horrible spelling! The iPad makes it so difficult to reply!

[bubbalicious]

Just for reference we use Intuniv to smooth the edges from a stimulant am and pm dose. Those transitions can be tough between doses. A long acting stimulant sounds like a better go to but this could be an issue with anxiety. I personally think a DP versed in ADHD in really young kids is the best route.

How are the academics?

[bubbalicious]

These huges outbursts could be helped by meds but you need to pair with significant behavioral therapy. She will only get stronger and most providers shy away from aggression.

[toastie]

May 23, 2017 11:58:12 GMT -5 bubbalicious said:

These huges outbursts could be helped by meds but you need to pair with significant behavioral therapy. She will only get stronger and most providers shy away from aggression.

She has only started this behavior in the last week.  The neuro changed her from the extended release to the regular version and 3-4 days later she is a different child.  

I would say it's possible it's puberty, hormones, but it's just seems too coincidental.  It's like use went to sleep and woke up as a different child.  So in her case it seems as if the meds are what causes the outbursts.

[toastie]

May 23, 2017 11:54:42 GMT -5 bubbalicious said:

Just for reference we use Intuniv to smooth the edges from a stimulant am and pm dose. Those transitions can be tough between doses. A long acting stimulant sounds like a better go to but this could be an issue with anxiety. I personally think a DP versed in ADHD in really young kids is the best route.

How are the academics?

I'm not sure, academics are low on the totem pole, she's very similar to my kids in that they're focusing on life skills, how to be a student, etc and academics are just icing on the top.

usually she can sit down and do a math worksheet with some promoting and help with focus.  However since Saturday she can't even sit down. She will pick her iPad up and smash herself in the head with it, come sit on your lap and turn around and scratch you like she's trying to unearth your skeleton.  I tried holding her hands and giving her some deep pressure input and she just tried to latch on my hands with her teeth as hard as possible.

she was adopted 3.5 years ago.  In the summer I spend at least every Friday with her, I babysit, I spend lots of time with her she her esy program is over but my boys have school.  She has lived with multiple different children and UNTIL saturday she has NEVER bitten or scratched or injured in any way, anyone. 

[toastie]

Yesterday she fell asleep in school for 3.5 hours! mok called to check on her at school and the teacher said she was just about to call her. She is now running into walls bent over head first as hard as she can and fighting them when they try to stop her, throwing furniture, attacking the other students, attackingnthe teachers. Paras, and therapists.

Mom and I talked last night and I told her that if today was just as bad or worse personally I would take her to the ER. She has escalated to the point of being a danger to herself and others and something hasn't to be going on. So when she got this news from the teacher they decided they were heading to the ER.

The neuro refused to acknowledge it and even called and cancelled the emergency appointment mom managed to snag.

[mrsbuttinski]

They need different doctors.

I'm glad they're headed to an er, but if they don't have a pediatric psychiatrist on-call, they might not get the help they need. She's a little young for puberty, but it is possible hormones are starting to reveal other mental health concerns.

It might make sense to clear all meds out of her system in a psych unit and then trial them there. A lot of kids I know on spectrum or with similar behaviors do best with a small amount of an atypical antipsychotic on board.

[mrsbuttinski]

Is the hospital in Mountainside an option?

[akafred]

Ugh! I'm so sorry. That must feel so scary for her and her loved ones. Clearly she needs a new dr.Hopefully the hospital visit will be a good start.

[toastie]

They took her to a decent children's hospital. Not CHOP level but not some small local one either.

They had a psychiatrist and neuro on call and did lots of
Blood work and monitoring. They set up tons of specialist over the next week so that she could avoid the trauma of being admitted. Hospitals/hospital beds are very triggering for her ptsd from orphanage life

She is home for the rest of the week and unmediated. She seems back to herself pre meds, wild, impulsive, sensory seeking, but NON VIOLENT!!!!Their neurologist fired them claiming that the parents want her to be a miracle worker when we all know that neuro didn't want to do the hard work required. The new hospital wants her cotreated with neuro and psych because of her craniofacial differences, her orphanage background and her ASD/ADHD. They were advised on how to stop the meds and what to look for and given The drs private number To call if they see any complicAtions or can't get appointments with drs by tomorrow. They set up an MRI for her because she has never had one and like I mentioned has microtia of both ears. They also did a short eeg in the hospital and said it was abnormal but not indicative of anything specific seizure wise but they are glad to have it as a baseline. And we know Abnormal kids often have abnormal eegs. But if she has another rage episode they want her to go to the local er immediately and have an eeg done to see wha his happening during the specific episodes. And the dr gave them all paperwork to bring with them if this happens so that he can get the results immediately.

And unfortunately children's specialized in Mountainside is not really an option with neuro. Our develolmwnrL pedi we saw there actually told us not to waste our time on their neuro. That they only really manage epilepsy med monitoring.