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Old 01-05-2012, 08:33 PM   #1
robin09
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Advice on Meds needed please

I'm desperate, and I know you can't give out medical help, but I need advice so badly.... Funny thing, we got a call from our dd dr. and the first thing DH said was to go to the disboards!

Background: DD13 has aspergers, ocd, capd, sensory issues, problems with her eyesight, lack of fine motor control,... She had extremee problems with sleeping, eating... so the dr's put her on seroquel about 4 years ago. She gained weight with it (which was well needed). They tried all adhd medicine but they made her violent and nasty, which is why we tested her for CAPD, beccause it's mistaken so many times for adhd.

Last month we took her to her eye dr. and DD eyesight is weakening even more. She told us that seroquel can affect the eyes. We saw DD therapist this week who put a call into her psychiatrist. TOday we got a call to take her off the seroquel and start her on Prozac.. I'm so worried about this, I've been checking online about side affects, safety... Does anyone have any experience?

I know her OCDs are getting worse.. touching tapping, not being able to throw anything away.. so we were looking at another medicine anyway.. as you can tell my mind is in a million places... any advice?
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Old 01-06-2012, 12:51 AM   #2
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The problem with relying on medicines long term is that the underlying issue is often inadequately dealt with (along with serious side effects). Does she fully underhand the gifts and challenges that her neurology creates and does she except them.
I would refocus on making her "comfortable" with herself and in the world so her anxiety and the associated manifestations that you describe will diminish. This will do a lot more than any drug.
If you do need some help with mood issues, Zoloft is probably the most mild with the least side effect issues.
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Old 01-06-2012, 08:55 AM   #3
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Our 13 yr old has anxiety and insomnia, and takes zoloft and trazadone at night. The combination seems to have really helped both symptoms without any side effects. She also has ADD, so takes Concerta during the day, but I wanted to suggest the first combination as something you could consider instead of the Prozac.
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Old 01-06-2012, 09:33 AM   #4
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I truly appreciate bot of your responses.... Bookwormde, I agree with you about the long term affects and am truly worried about them. DD is still growing and doesn't understand alot about our world. She is extremely brilliant, but lives in fantasy.. ie: transformers, pokemon, batman... they are all real. SHe doesn't understand meanness in people, but also doesn't understand when she is bullied, she is extremely unique and gentle. BUT her ocd's right now are getting the best of her, I understand she needs to control her environment, but it's getting out of hand. Touching tapping, looking back to make sure nothing is dropped, going back to check... refusing to throw anything out, all out of control.. I'm at a loss.

Kirsten, DD also has anxiety issues and sleeping issues, without the seroquel, she couldn't fall asleep or stay asleep. Getting to sleep is still an issue, but at least now she'll sleep once she falls asleep. ADHD medicine did nothing to help her, just triggered more anger and violence. I appreciate your suggestions and will definitely look into them, I'm extremely concerned about Prozac and don't think I want her on it. But she has to be taken off the seroquel due to her eyesight... So much to think about and it's all so frustrating... but thankyou!
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Old 01-06-2012, 09:51 AM   #5
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Unfortunately, meds given by physicians don't come with a guarantee. Sometimes they work for us, sometimes they don't.

I guess that's why so many drugs are in existence.

Try to be patient, & don't stress! Your child will be thankful in adulthood that she has a parent as concerned and loving as you.

If this helps - we had 2 choices - get rid of our overactive OCD puppy, or use Prozac. He is approaching his first birthday next week. The Prozac helped him get to a point where he isn't unmanageable. He's still his cute little self, only calmer.
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Old 01-06-2012, 09:59 AM   #6
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Obviously, your DD's doc has final say. But if the Seraquel was helping, but creating issues with her eyesight, why not try one of the other atypical anti-psychotics? Abilify and Risperdal are in that same class as Seraquel, but might not have the same side effects in your DD.

If the ADHD meds (I'm assuming you tried one of the standard stimulant meds) aggravated the mood issues, then an SSRI might not be the best alternative to try. I know in a child with a mood disorder, both of those types of meds can worsen mood and activate mania.

My recommendation would be to ask your DD's doc about Abilify. My DD had better luck with that than the Risperdal.
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Old 01-06-2012, 09:59 AM   #7
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Quote:
Originally Posted by I Love Pluto View Post
Unfortunately, meds given by physicians don't come with a guarantee. Sometimes they work for us, sometimes they don't.

I guess that's why so many drugs are in existence.

Try to be patient, & don't stress! Your child will be thankful in adulthood that she has a parent as concerned and loving as you.

If this helps - we had 2 choices - get rid of our overactive OCD puppy, or use Prozac. He is approaching his first birthday next week. The Prozac helped him get to a point where he isn't unmanageable. He's still his cute little self, only calmer.
Thankyou, I totally understand that there are no guarantees. My issue is I don't want it to do any harm and I want to get all the info out on the table so I can make an educated decision. The Drs are human and can make a mistake, I need to know that I am doing the right thing....
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Old 01-06-2012, 10:16 AM   #8
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You are a FANTASTIC parent!

The world need more of you!
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Old 01-06-2012, 11:56 AM   #9
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Have you ever looked into Melatonin as a sleep aid? My DD13 (Aspie) needs it in order to get to sleep in under 2 hours.

Has she ever had vitamin levels checked? Kids on the spectrum have higher incidences of GI problems than the general population and GI problems can result in deficiencies. I'm mentioning this because in my own case, my vitamin A had gotten so low for such a long time that it was affecting my vision (I'm a self diagnosed Aspie BTW).

Her Obsessive Compulsive issues had gotten way out of hand this past year. Her psychiatrist said typically he starts with Prozac or Zoloft for young teens and put her on Zoloft because she has a sister who responded well to it (he usually goes for Prozac first). OMG it was like a switch was flipped. Suddenly she was able to function again (she was at the point where the school actually said they didn't know if they would be able to teach her because they couldn't even get her in the classroom half the time). She's now working on CBT which is something that wasn't at all possible for her to cope with before beginning Zoloft.

My biggest piece of advice: Breathe!!!! Don't forget your own sanity. Set aside 10 minutes each day where nobody is allowed to disturb you and do something for you, even if it's just going for a walk or reading a book or putting on nailpolish or finishing off a box of cookies in private. If you have to lock yourself in the bathroom to do it then do it. I know how easy it is to get burned out when your child is in a constant state of meltdown. You can't be any good to her if you're not taking care of yourself. If 10 minutes doesn't work then at least strive for 5. Just make sure to not forget about you so that you CAN be there for her and the rest of your family.
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Old 01-06-2012, 12:20 PM   #10
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Quote:
Originally Posted by clanmcculloch View Post
Have you ever looked into Melatonin as a sleep aid? My DD13 (Aspie) needs it in order to get to sleep in under 2 hours.

Has she ever had vitamin levels checked? Kids on the spectrum have higher incidences of GI problems than the general population and GI problems can result in deficiencies. I'm mentioning this because in my own case, my vitamin A had gotten so low for such a long time that it was affecting my vision (I'm a self diagnosed Aspie BTW).

Her Obsessive Compulsive issues had gotten way out of hand this past year. Her psychiatrist said typically he starts with Prozac or Zoloft for young teens and put her on Zoloft because she has a sister who responded well to it (he usually goes for Prozac first). OMG it was like a switch was flipped. Suddenly she was able to function again (she was at the point where the school actually said they didn't know if they would be able to teach her because they couldn't even get her in the classroom half the time). She's now working on CBT which is something that wasn't at all possible for her to cope with before beginning Zoloft.

My biggest piece of advice: Breathe!!!! Don't forget your own sanity. Set aside 10 minutes each day where nobody is allowed to disturb you and do something for you, even if it's just going for a walk or reading a book or putting on nailpolish or finishing off a box of cookies in private. If you have to lock yourself in the bathroom to do it then do it. I know how easy it is to get burned out when your child is in a constant state of meltdown. You can't be any good to her if you're not taking care of yourself. If 10 minutes doesn't work then at least strive for 5. Just make sure to not forget about you so that you CAN be there for her and the rest of your family.
Thankyou for your words, it's soo hard to find 5 minutes for myself, and I appreciate you realizing that. Between DD13 and taking care of my MIL I'm quickly losing my mind, and have been daydreaming of running away...

As for the melatonin, we did that years ago, but she built up an immunity to it. Even as a baby she didn't sleep, the drs thought I exaggerated and at that time called her a "high maintenance baby".

We have removed all color dyes from her diet and has been dye free for the last 7 years, and her behavior is better for it.

We ran the gamut of adhd medicine and all that happened was that she became violent and nasty, with the exception of strattera which literally did nothing for her.

We started her on Seroquel about 4 years ago, with much doubt.. medicines scare me big time. but for the first time in her life, she slept. It doesn't help her fall asleep any longer, but at least she stays asleep instead of waking every hour or so. Her levels have never been tested, and when I asked, I was told it didn't need to be done for seroquel. I'm at such a loss, Prozac seems to be such a strong medication.... I just want to run away...
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Old 01-10-2012, 11:05 AM   #11
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Have you seen a DAN! doctor (biomedical/functional medicine doctor) to do tons of labs to find out where she is out of balance? Our complicated kids end up with complicated labs.....low zinc, low vit. D, too much yeast, too many toxins etc. These imblances lead to neurological problems. All those ADHD meds etc. often make things worse or cover up other issues. It is a long process to figure everything out but it can be well worth it. HUGS!
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Old 01-10-2012, 01:03 PM   #12
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Quote:
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Have you seen a DAN! doctor (biomedical/functional medicine doctor) to do tons of labs to find out where she is out of balance? Our complicated kids end up with complicated labs.....low zinc, low vit. D, too much yeast, too many toxins etc. These imblances lead to neurological problems. All those ADHD meds etc. often make things worse or cover up other issues. It is a long process to figure everything out but it can be well worth it. HUGS!
No I haven';t, I don't think I would even be able to find one up here in upstate NY. I live in a small village, an hour from binhamton, 2 hours from Albany.. It's soo hard finding anyone that is knowledgable... I'm so frustrated..
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Old 01-10-2012, 01:33 PM   #13
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Quote:
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No I haven';t, I don't think I would even be able to find one up here in upstate NY. I live in a small village, an hour from binhamton, 2 hours from Albany.. It's soo hard finding anyone that is knowledgable... I'm so frustrated..
One of the top DAN! doctors in the country is in Rhinebeck, NY.
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Old 01-10-2012, 02:22 PM   #14
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have you tried benadryl to help sleep? I take it sometimes to help sleep. it also has a soothing/calming effect, too.
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