Your experience with medications (7 yr old)

[MLA]

daughter has a very difficult to manage regulatory processing disorder (here's some background info http://www.conductdisorders.com/community/threads/first-post-desperate-for-support.44680/ )

She's been on increasing doses of Abilify for the past year. We know it's helpful because when things start getting worse and we increase her dose, things improve. But even at its best, Abilify still doesn't help enough. daughter will be 7 in February, and takes 7.5 ml per day (half at night and half in the morning).

I've always wanted to try to include an anti anxiety but her neurodev. pediatrician is resistant because it will make things even more difficult to assess- when there are side effects, is it her disorder, is it one medication or another medication?? I understand but I *have* to do more for my daughter. She is in so much pain. She has zero tolerance for not getting what she wants or any physical/emotional discomfort. It must feel to her like her world will literally end if she doesn't get the answer she's looking for. And you can imagine how often a 6.5 year old does not get what she wants or feels uncomfortable.

I'm wondering what experiences you've had with medications for regulation/anxiety. She has traits of bipolar, adhd, asperger's, oppositional-defiant disorder, severe anxiety, motor planning issues, and more. When she's regulated, she is delightful, insightful and extremely compassionate and smart.

Before Abilify, we tried antidepressants and anti convulsants.

Any thoughts or help you could offer would be much appreciated.

MLA

 

[flutterby]

Before Abilify, you tried AD's and mood stabilizers. Did she have a negative reaction to them or were they just not helpful? They might be something that's helpful in conjuction with Abilify, but weren't enough on their own.

My daughter has always had major issues with mood regulation - although they didn't know how to label her for a very long time - and I can relate to what you are going through. Anxiety has always been the biggest issue in that regard for her. No one was talking medications at 7. When they were later, they couldn't give me any kind of a diagnosis but wanted to start throwing heavy duty medications and I was resistant. Finally, at the age of 10 we tried Lexapro. It helped with anxiety, but my daughter at that point was completely therapy and medication resistant and she swore it didn't help. I thought it did, but I think she was probably right as we have since learned that all AD's make her more depressed and intensely suicidal.

She is almost 18 now and I am still her main mood regulator. Everything is always so "big" with her - she feels much more intensely than others, both physically and emotionally. Seroquel has helped more than anything else, but it's still not enough. According to her psychiatrist, evidence has shown Seroquel helps with anxiety in adolescents. Your daughter is obviously not at that age yet and I don't know anything about the use of it in children her age. Plus, I would be leary of switching from a medication that does help to an unknown.

All of that said, my experience is that unless that monster anxiety is managed, your daughter is going to continue to struggle. A lot of people, including health care and mental health professionals, don't understand just how debilitating and pervasive it can be. Your daughter has been on Abilify long enough now to know how she responds to it and its side effects. I'm not sure how adding another medication at this point could confuse that. AD's are generally used for treating anxiety, along with a PRN medication if needed.

 

[flutterby]

I should add that while anxiety has always been by far my daughter's biggest issue, underscoring the anxiety is that she doesn't understand the world around her. Her anxiety is so big, however, that we couldn't even address that until we got the anxiety managed.

I talked until I was blue in the face about the need to manage her anxiety, but no one seemed to know what to do (have had way too many people tell me they've never seen a kid like her before) and then she became treatment and medication resistant for several years. If I could go back and do it over, I would insist on managing the anxiety at a much younger age. I can't say with certainty if she would be further along than she is now (and where we are now is that it will be years yet before psychiatrist and therapist think she will be able to function independently), but I believe she would be. Her anxiety was/is debilitating and controls every facet of her life.

 

[MLA]

Thanks flutterby. difficult child's (I'm used to daughter from the miscarriage site I used to be on!) regulation is tied primarily to sensory issues as is her anxiety. If she's hungry, needs to use the bathroom, tired or worried, she becomes dysregulated- which includes more anxiety. Anything that is a sensory fear (bathroom, teeth brushing, writing for homework) creates anxiety which leads to dysregulation. It's a terrible cycle.

The AD worked for a few weeks but then activated her. The anticonvulsant made things worse. Abilify has worked where other medications haven't but I think it's mostly run its course. I'm just curious what other medications people have used for children with similar issues.

Thank you,
MLA

 

[JJJ]

With Tigger, he has had some success with Ativan and Buspar. Inderol is another one that can help with anxiety.

 

[InsaneCdn]

I could be wrong, but your psychiatrist might be right - or partly right.

medications are usually not the front-line in addressing the issues and challenges our kids face.

I went back through your list on this post, plus the previous thread you linked to...
And this is what I see: bipolar,
adhd,
asperger's,
oppositional-defiant disorder,
severe anxiety,
motor planning issues,
and more.

From the prior post, add sensory processing disorder (SPD).

ODD ... well, that's a description of problem behavior, but there are no medications - nor interventions or accommodations or parent advice or anything else... we'll just call that a "placeholder". Yes, she is a challenge.

Anxiety... is frequently a secondary diagnosis with kids who have complex challenges, or whose challenges are unrecognized and not properly dealt with (accommodations/interventions/medications). Depression falls into the same category. At age 7, it's very hard to distinguish primary mood disorders from their "secondary" versions. The symptoms are identical... but the cause is not. For now? I'd be assuming this is secondary. medications "may" help, but won't solve the problem until the reason for the anxiety is known.

Which Aspergers' traits does she show? in particular, does she have challenges with social skills, peer relationships, etc?

Because... ADHD can be a stand-alone diagnosis but Aspies often have ADHD symptoms.
So can sensory processing disorder (SPD).
So can "motor planning issues" or Developmental Coordination Disorder (DCD) or "clumsy child syndrome" or whatever other label you want on that.

ADHD interventions, accommodations and/or medications "can" help ADHD symptoms.
sensory processing disorder (SPD) interventions and accommodations help sensory processing disorder (SPD) symptoms (in particular, Occupational Therapist (OT) therapies, and things that OTs can teach you to do at home). medications don't help sensory processing disorder (SPD).
Developmental Coordination Disorder (DCD) interventions and accommodations help Developmental Coordination Disorder (DCD) symptoms (again, Occupational Therapist (OT) stuff, no medications)

So... what is the source of the anxiety?

For my difficult child, it was two things. It took us YEARS to get to the bottom of either of them.
1) social skills issues (complex, coumpounded by missing dxes and totally wrong interventions and accommodations), and
2) Auditory Processing Disorders (APD) - auditory processing disorder, in our case "auditory figure ground".

Neither of those respond to medications either.

I can't speak to the bipolar possibility... our MH/MI challenges were limited to anxiety and depression.

Can you remind us who did the evaluations and gave the dxes? and how long ago?

 

[MLA]

Thanks InsaneCdn. She is not diagnosed with most of those things you (I) listed. I'm a former clinical social worker so I know that she presents with clusters of traits that look like all those things. She started in Occupational Therapist (OT) and social work when she was just shy of three yrs. An initial Occupational Therapist (OT) evaluation concluded that she had sensory processing disorder (SPD) and motor planning (she was initially brought into EI due to poor articulation- common with motor planning). At that time I didn't realize that her inability to self sooth was more than just her being a challenging kid.

She's been formerly tested by a neurologist and also by a neurodevelopmental pediatrician. No one is saying that she is on the spectrum. My boss is somewhat of an expert on Asperger's and always comments that girls are harder to diagnose and she thinks it's a possibility with difficult child. But none of her doctors or therapists have diagnosis her with that. She does have trouble socially, but not always. It depends how regulated she is.

The worst is how she interacts with easy child, who is five. She is obsessed with her, like a stalker. If easy child does not want to play, difficult child puts the entire weight of the world on that rejection, bullying her until she relents (poor difficult child- the weight of the world is on her so often). Then when they play, difficult child is constantly jealous and needs to control everything. Poor easy child. She is growing up in the most unhealthy environment. Last night I had husband just take her out of the house so she could get a break from her sister. She still loves her so much and just wants her sister to be consistently "easy" (which is how she is sometimes- like living with an unpredictable alcoholic).

Thanks for listening. I'm feeling pretty hopeless at the moment.
MLA

 

[InsaneCdn]

Two things... maybe.

She's old enough now to be tested for the full spectrum of APDs. It might be worth looking into. If she is dealing with Auditory Processing Disorders (APD) on top of all the other stuff... well, we've been there done that.

Have you tried adjusting your parenting to treat her "as though" she were Aspie, even though there is no diagnosis?
We did... and difficult child responded MUCH better than we anticipated.

Have you read "the explosive child"?

 

[lovelyboy]

I agree with the other posters.....My son has much the same bunch of symptoms!
It truely sounds as if you might need a fresh look at your difficult child from a medical point of view? some one who really listens to you and all your concerns.......
The psychiatrist stucks to her diagnosis that my son has Pervasive Developmental Disorder (PDD) not otherwise specified ( Aspie - lite ),with traids of Obsessive Compulsive Disorder (OCD) and anxiety.....He also have Autism Spectrum Disorders (ASD) and sensory integration disorder, motorplanning stuff exct.
Kids on the spectrum usually do have sensory issues, Auditory Processing Disorders (APD), anxiety, ODD behavior ( because they dont understand context), mood disregulation, Obsessive Compulsive Disorder (OCD) traids exct. When you put ALL these together, you usually end up with Autism Spectrum Disorders (ASD)....
My son was put on AD.....but still had bad temper meltdowns, so the neuro added Risperdal.....The psychiatrist now wants to change the Risperdal to Abilify, because he picked up alot of weight. This helped alot!!!! We got our family life back, well allmost, still need to have bounderies in place, routines, exct.

A VERY important thing to remember with Abilify or Risperdal, please listen carefully, the neuro and clinical psychologist confirmed this: If the dosage is to HIGH.....the irritibility can get worse! My son is only on 0.25 ml Risperdal and is 9 years old...it works great! the moment we up the medications, he gets more irritable and anxious!

 

[BusynMember]

Do you live in the US?

If so, I'd get a second opinion. In fact, I always get a second opinion. As a child AND adult, anxiety, Generalized Anxiety Disorder (GAD), and panic disorder were and still are (if unmanaged) HUGE symptoms for me. But even when they are under control, and mostly they have been for the last twenty years due to both medications and all sorts of great anxiety-oriented therapy (therapy is very helpful for anxiety), I still have other things going on as well. Since I'm not a kid...lol...I've had only about ohhhhhhhh twenty diagnoses and one is mood dysregulation disorder (which started out as depression, then bipolar II).

Your daughter is very young and in my opinion and with my experience with my son, I'd want to make sure a lot of professionals, including a neuropsychologist agreed that anxiety is the main disorder and that something else isn't causing the anxiety. Has s he seen many professionals? Have a few questions for you that will help us give you better support:

1/How was her infancy? Did she cuddle?

2/Did she meet her milestones on time, especially speech?

3/Does she play appropriately with toys?

4/How does she relate to her same age peers?

5/Does s he have any obsessive interests?

6/Anything odd about her family history or pregnancy?

7/Is she overly sensitive to touch, foods, loud noise, crowds?

8/Any psychiatric problems or neurological differences on either side of her genetic family tree? This is huge. A lot of things are inherited.

9/Lastly, can she transition well from one activity to another?

My son saw many professionals because he was difficult to figure out. Once a neuropsychologist did ten hours of testing and nailed it down, I just knew he had it right and things went way uphill from there. Our "vague" kids are very hard to parent and to teach and to deal with when they are young. I am not sure, in hindsight, I would have put him on so many medications. None helped for the long run and he had many bad reactions and is obese to this day from the Risperdal/Zyprexa/Lithium/Seroquel days. Sometimes, with us, it seemed he was doing much better because he was so sedated. If you ask him about it today, he says "I was a zombie." He has been medication free for eight years and is much better off the medications. Most of his early diagnosis. were not correct.

I would try to n ail down a "working" diagnosis ( chances are your son's diagnosis. will change t hrough the years) so that you can get help in the community and school. Yes, the label is important. Some labels galvanize help and others don't. Second opinions always seem to bring up things the other guy missed. Any particular reason that, at seven, she hasn't seen a neuropsychologist or a psychiatrist?

I hope you can find the right path for your precious child Never stop trying to find it. Never take only one professionals word for it either. Good luck

 

[MLA]

Thanks Lovelyboy and Midwest Mom,

We've had lots of opinions. She actually did see a neuropsychologist. He was the one who prescribed ADs and then anticonvulsants (both made her worse). Her primary diagnosis isn't anxiety. She just has a lot of anxiety. Her primary diagnosis is regulatory sensory processing disorder. I am in the midwest too, just outside of Chicago. She's been seen by the tops in the field. She started on a very low dose of Abilify but has had to increase everytime she outgrows her dose. So far no increase has resulted in worsening behavior (when we tried to go down on her dose, that's when we had a huge problem).

To answer your questions,
1/How was her infancy? Did she cuddle?
Impossible to sooth. Didn't want to be held unless she was nursing (and was a very squirmy nurser). First time seeking a hug for comfort was when she was three yrs.

2/Did she meet her milestones on time, especially speech?
Advanced language skills- full sentences by just over 1 yr. But terrible artic. Only I could understand her till good speech tx

3/Does she play appropriately with toys?
Now yes, when she was younger, motor planning made this hard

4/How does she relate to her same age peers?
She's incredibly friendly to strangers- does great making friends at the mall, etc.. Not as good when she spends a lot of time with someone. Misses some social cues. Her lack of regulation makes her less attractive to other kids- cries a lot, controlling, easily injured, etc..

5/Does s he have any obsessive interests?
No. Just gets stuck on any random thought or need and if she can't have it, cannot move on

6/Anything odd about her family history or pregnancy?
I have a bipolar teenage niece. Some anxiety in the family history. Addiction on husband's side (not husband). Several miscarriages before difficult child was born. She was a result of ivf + pgd. Pregnancy and delivery were normal.

7/Is she overly sensitive to touch, foods, loud noise, crowds?
Yes. Mostly sensitive to internal sensory issues, like bathroom and hunger. But in general, very hypersensitive to all sensory input.

8/Any psychiatric problems or neurological differences on either side of her genetic family tree? This is huge. A lot of things are inherited.
I'm aware... See #6


9/Lastly, can she transition well from one activity to another?
No.

I'm open to anything. My gut tells me, based on my own clinical experience as a therapist and years of working with children, that we're on target with her diagnosis. The only thing I'm unsure of is if she's an aspie or not. I'm interested in possibly adding an antianxiety to her Abilify but her dr is resistant.

I'm sorry to know that you've all been through so much with your own children. Thank you for taking the time to ask questions and share thoughts.

MLA

 

[lovelyboy]

I agree....This is a tough one!!!!
From what you have answered this sounds ALOT like my youngest boy! He has just turned 5.
He has huge sensory integration and regulation problems, together with auditory prosessing disorder...I had him at psychiatrist twice and neuro once! I was worried about Asperger...he never ever made eye contact and only through intensive ST started making eye contact... I also took him to a SI occupational therapist who also made huge difference.
We had to do brushing with him to decrease tactile defensiveness...did you try this?
I will also strongly advise a good ST who is trained in auditory prosessing disorder...This usually goes hand in hand with sensory dysregulation.
I assume her hearing, and eyes has been checked? I also assume she already had an EEG and MRI, to rule out any neuro stuff?
To get the Aspie diagnose, the main issues is usually poor quility of social relations...not inability to make friends, but they "mess" their friendships up by being bossy, demanding or just inappropriate..finds it difficult to handle conflict and read social context and clues. Also very high levels of anxiety and obsessive thoughts or behaviour....Dont like sudden hugs, likes to control their environment in need for stability and less anxiety. Struggles to follow more abstract discussions or sudden expectations for change.
I will follow this thread! Hope you get more answers to your questions!

 

[MLA]

Thank you, lovelyboy. Everything you listed for Aspie is dead on with difficult child. I'll bring it up with her sw and ndp. Not sure how an aspie diagnosis would impact her tx...

MLA

 

[HaoZi]

Well, you see my daughter's diagnosis's, and she uses Topamax for her anxiety.

 

[InsaneCdn]

Knowing whether she is Aspie or not will not affect medications or other therapies much.
But it WILL enable you, and others who work with her such as school etc, to approach her differently.
It provides a "reason" for many things - which in turn changes (should change) the actions of those who work with her.
When there is a reason for the behavior, school can't claim "she could if she wanted to"... because she truly can't.
Aspie diagnosis should get her accommodations and interventions - for example, advance notice of transitions, help with transitioning, all sorts of ways to make the day more of a "known" than an "unknown". Which, of course, reduces anxiety.
We've found that "reduction in anxiety" was the biggest advantage from most of our dxes... even difficult child understands himself better, and now it makes sense why we're trying to teach him certain skills etc., so he is more cooperative...

 

[MLA]

We are probably the luckiest people in the world regarding the support difficult child receives at school. They could not do more or be more understanding. They see her many strengths and accommodate in every way possible, trying new interventions when something isn't working. I get emails frequently from her team (yes, team!)- amazing communication. And they absolutely respect my thoughts and relationship with difficult child.

Life at home is unbearable but I'm able to count my blessings where they are (thank you for reminding me). After two weeks home for winter break, I'm so looking forward to giving easy child a break from her sister.

I'm still going to look into the idea of an Aspie diagnosis... Any better understanding we all have will make a difference.

Thank you.
MLA

 

[InsaneCdn]

If you like having a whole collection of books... try reading "Be Different" by John Elder Robinson. It's written by an Aspie... for parents and teachers and other adults who work with Aspies. We found it useful.

I'm assuming you've read The Explosive Child by Ross Greene (I think...)

At home - assume burn-out from school. Assume she needs routine, a predictable schedule. We discovered fatigue was a factor. Start a journal... what happens, when, what happened "before" and "after", what else was going on that day and the next day... trends show up better when you document them. Often the problem isn't the "trigger" - it's fatigue, hunger, overstimulation, anxiety...

 

[MLA]

Believe it or not, I haven't read The Explosive Child yet- but you are the 100th recommendation so it is now officially on the list. As far as predictability and structure at home- got that down. But yes, difficult child works so hard to stay regulated at school (which works *most* of the day) that she has nothing left once she's home. The two weeks off were hell, though. Way too much free-play with her sister, which they both love and need but which never ends well. Plus she's had pink eye and a cold. When she's even the tiniest bit sick her medications are 80% less effective.

I'm praying that once we get back into the school routine things will improve. But I'm still thinking a lot about pressing for an anti-anxiety to be added to her Abilify.