Jena

New Member
hi to all,

I just had to ask a question. I was just wondering does anyone else have a child with whom exhibits average functioning behaviors at certain time frames during day/week?

I think that's why this is all so confusing for me. Only 6 mos. ago my little girl was outside riding her bike, we had just moved here (even had a cast on her arm) and happy with new friends, etc.

Now 2 mos. after that it all crashed without warning, without a shift or change (it was a new school but she entered in great and was happy for first few weeks). all of a sudden the emotional neediness, the extreme anxiety, sleepless nights again, sensory stuff.

I think that's why i always feel like Im loosing it somewhat. She wasn't even on medication's for that 2 mos. time frame that she was fine. Then suddenly i go up to school and it's happening again the demand an immediate re-evaluation and she needs immediate intervention.

anyway i took a shot cleaned her off medications, was working with her on my own with breathing exercises and i thought ok maybe i was loosing my mind past year diff. diagnosis, diff medication's, diff doctors.

anyway anyone else experience this? dont' get me wrong i love the moments when she's anxiety free (sensory is almost all the time with little things) but when I can just be with her and enjoy her without worrying what to do for her) it is confusing though.

Thanks,
Jen
 

Jena

New Member
also sorry she had been on seroquel for 4 mos. and she was doing well on it then suddenly she gained an extreme amt. of weight, got a rash and the medication's just seemed to stop working. that's what brought me to clean her out and proceed medication free. she was also on clonidine at night.
 

klmno

Active Member
Sorry to hear you are going through this- yes, there are times my difficult child is highly functioning and times I don't know where he is- mentally. We are trying to sort through it -is it bipolar or some other cause of cycling- how much is effected/caused by medications (not all of it is- this is why he was put on medications)- how much is manipulation, etc.

I feel for you- unfortunately, I can't give you THE ANSWER, because we're looking for it too. The best advice I can give, which you've prabably already gotten, is log everything or do whatever else it takes to try to find the "pattern" or triggers, whether its medications, season, allergies, a social or family happening, anything and everything.

Hang in there- we're all in the same boat in some ways!! I've even gotten to a point where I'm reporting that my difficult child spent time cleaning and trrying to teach himself to play piano to the docs. Not because I think this is abnormal or a psychiatric issue, but because it appeared uncharacteristic and I'm trying to watch for any LITTLE sign- well, what else can you do?
 

Jena

New Member
Hi,

Thanks so funny you mentioned manipulation i think the same exact thing sometimes. Afterall wipe away the medications, their insecurities and behaviors and you have a kid, just a simple kid. I was just truly wondering if other parents had that same experience. I think that is why my family is so confused about this as well. Nice to hear (well not nice) but comforting to hear that this is experienced. I did log stuff but right now i'm trying to locate a hospital for her. They want complete pyschological/pyschiatric evalation done. Finding one that takes our insurance isn't easy. Found wonderful program it's 5k to walk in, that doesn't include testing with neuro psychiatric. it could go up to 15 20k. Money i do not have.

i know it's hard i wish you luck as well.
Jen
 

klmno

Active Member
You can get neuro psychiatric testing done out-patient. Ours ran about $1500- insurance covered a little more thanhalf. This was supposed to be full testing, but was about 2 years ago. Do you feel she needs to be in a psychiatric hospital for any other reason?
 

smallworld

Moderator
How much Seroquel was she taking when it suddenly stopped working?

Did she have strep throat around the time she got worse?
 

Jena

New Member
She was on 25 mg. i believe it was of seroquel when it stopped working. she was not sick at the time. she actually hasnt' had an ailment medically in about a year which is really odd to me.

no she doens't need to be hospitalized for crisis intervention or anything, she muddles through her uncomfortable days in school. extreme anxiety in a.m. leading up to our departure, extreme anxiety at night before bed worried about school, etc.

her symptoms which as i stated are not always happening at same time:

sensory issues - doesn't like loud noises, reg. noises vacuum stereo. doesn't like to sit on carpet has to put blanket down, doesn't like to feel certain things on feet, showers a big prodution. bunch of others, materials, etc.

obsessive behaviors - obsesses about stuff, is relentless then turns into some type of either anger or anxiety about whatever she is obsessing about. she makes little circles on her bed when she gets nervous and can't sleep. i asked her once why she said it makes her feel better. the circle gets dirty she said then has to find a new one?

germ issues - those come and go depending on level of anxiety; chking expiration dates, etc.

sleep issues - before medications' would be up alot sometimes till 3 a.m. drawing coloring pictures eyes dialated wild stuff.

social issues; does not know how to initiate conversation with new people has made maybe one or two friends; we moved though don't know if had effect. yet even in her old school was withdrawn

emotionally unstable moments of sheer happiness of just being very sad at times or quiet sort of withdrawn

emotional neediness almost always

anxiety alot all the time

likes routine,hates to not know what's coming next.

i think i missed a few but that's a brief overview

oh and not an affectionate child by any means hugs me and dad that's about it.
 

smallworld

Moderator
The reason Seroquel stopped working is because your daughter was taking an extremely low dose. Our psychiatrist told us that the body gets better and better at processing Seroquel the longer you're on it so you need to get the dose high enough to make any difference at all. Instead of stopping it, the psychiatrist should have increased the dose. Anxiety is typically dosed at up to 100 mg. Bipolar Disorder typically requires doses of 400 to 800 mg.

What did the rash look like? Are you sure it was from Seroquel?
 

Jena

New Member
we were or at least the pediatrician. psychiatric was sure of it, also major weight gain as well 2 sizes she started having issues with that.. she's been on what seems to me alot of diff. drugs. with no clear diagnosis.
 

TerryJ2

Well-Known Member
Sounds like a cpl things going on --sensory and bipolar, maybe. Poor thing.

I used to have a lot of sensory issues when I was a kid ... had to smooth out every single wrinkle in my sheets in the middle of the night (I still have no idea why); hated anything scratchy, still do ... some kids are just born like that. But your daughter sounds like she's letting her sensory issues control her, if you know what I mean.

been there done that with-my difficult child, but not to that extreme. I know what you mean about how everything is going well and the all of a sudden it changes. with-us it's more in line with-food allergies, too much stimulation, and manipulation. When my son goes along for a while doing very well, we slack off on discipline, in effect, forgetting his special needs, and then his behavior reminds us we have to crack down. Everything with-these kids is exaggerated beyond what "normal" might be.

Having said that, I also agree that it is a good idea to think about these kids as just being kids, rather than a collection of symptoms, or as a condition. But sometimes it's so hard! When we have good days, and my son is "up" and fun and funny, and he does one little thing that is odd or out of line, it helps me to put it in perspective with-just being a kid. But the rest of the time ...
 

Jena

New Member
her new pediatric pysch. because we are almost at 2 mos. now on abilify and her anxiety is increasing, sleep patterns improved somewhat
 

smallworld

Moderator
Do you remember what the rash looked like?

FWIW, SSRIs like Paxil and Lexapro can make kids with mood disorders much worse (it's happened to all three of my kids). As I said before, Seroquel will only work for anxiety/mood issues if at a high enough dose (unless you're only using it for sleep).
 

Jena

New Member
i began with a great hospital here in new york did the 3 4 session testing thing, pyschiatric testing and came out of Obsessive Compulsive Disorder (OCD)/anxiety disorder. then from there she was medicated, yet it didnt improve. so i think there were about 3 other doctor's to follow, bio feedback machines to assist in teaching her to calm herself which didnt work. so its' been two yeras of nothing making sense.

latest guy diagnosed her with anxiety disorder and bi polar.
 

Jena

New Member
oh wow wish id' found this site sooner she flew into 3 dy manic episode with lexapro what a nightmare that was and wait she went to school after being up for those amt. of hours. then when i took her off it was horrible poor thing was up in the middle of the night ripping food out of cabinets playing with barbies wrecking living room. never again. lexapro so so bad. i dotn' remember what the rash looked like.
 

smallworld

Moderator
My youngest daughter has a severe anxiety disorder that did not respond positively to Prozac (in the same medication family as Paxil and Lexapro). She is doing beautifully on Zyprexa (in the same medication family as Seroquel and Abilify). We have had to increase the dose several times over the last 1.5 years. The only side effect she's had is weight gain (very typical for atypical antipsychotics). Long term we are worried about other side effects. We meet with her psychiatrist next week to see if we can come up with other medication options. The point is it can take many medication tweaks and changes to properly address a child's symptoms, particularly if they are severe.
 

smallworld

Moderator
I also wanted to mention that there's a side effect to atypical antipsychotics like Abilify of aktathisia, which is a feeling of internal and external restlessness. A child may be incapable of sitting still and may feel a sensation of discomfort akin to anxiety or agitation. This side effect is often mistaken for anxiety or agitation rather than a side effect of the medication. Do you think your difficult child may be experiencing akathisia?
 

Jena

New Member
her new pyschiatrist. he felt abilify wasn't doing the trick and now after her showing symptoms of so many different things, and being on so many diff. medications' it was time to go to a hospital and have a complete evaluation done for her. seemed to make sense.
 

Jena

New Member
no i don't think so because the anxiety behaviors seem to be the exact same as they have been in past. and she's not restless or a behavior problem. in school at all just depressed and withdrawn the teacher and schl. pysch said. she sits alone at snack time other kids are up and talking and eating and she sits alone staring at her desk. same thing at lunch and recess its' so sad
 
Top