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Special Needs 3 year old taking adult doses of psych meds

My daughter is 3 years 9 months old and is the size of a 5 year old. She has been diagnosed with Autism, ADHD, Insomnia, Central hypotonia and a genetic mutation on the RAI1 gene.
She started taking sedatives at 19 months old (Ambien) and a benzodiazipene (Klonipen) for aggression and self harming (head banging, biting, hair pulling [hers], pulling her nails off completely and inserted things in anus and vagina). These seemed to help but she grew a tolerance within 6 months (maxxed out Ambien @ 10mgs and Klonipen at 0.5 mgs). The meds were weaned and Clonidine/Trazodone (sleep) and Risperdol (behavior) was started around her 2nd birthday. She has been on these since then (18 months using). These medications have lost their efficacy at Clonidine 0.3 mgs @bedtime, Trazodone 150 mgs @bedtime and Risperdol 4 mgs divided doses.
About a week ago she began having hallucinations (confirmed on mri) during a 10 hour psychotic episode. The childrens hospital ER doctor could not admit her because of how violent she was and the mobile psychiatric crisis team could not place her because 4 years old is the minimum age limit for short term psychiatric hospitalization so she was sedated using Geodon (bipolar/schizophrenic medication) and Ativan (benzodiazipene).
She was sent home with a prescription for Geodon at 10mgs (20mg capsule with administration of half of the contents) twice daily. We followed up with her geneticist who continued the prescription and referred her to a child psychiatrist whom we saw yesterday. Told him the Geodon helped immensely and he wanted to place her on Dexidrene for the daytime (taken 2-3 times a day) and wanted to wean the Geodon and replace with Abilify or Seroquel (this one would be taken twice a day).
He is not making any decisions until he speaks to her geneticist at some point today or tomorrow and then will call in the prescriptions.

This is exhausting and there is really no one for me to talk to about my fears for her future or advice on what to do next.
I am scared and confused. There is very limited data for how to medicate a child like her so I really have to go along with what they think is best.
I am posting to see if there is anyone out there who has advice.

**Yes, I am aware that these medications are not meant for a 3 year old BUT in her genetic syndrome they are commonly used. I have sought 2nd and 3rd opinions and because her syndrome and case is so rare they don't really have much to offer**
2 Responses
189897 tn?1441130118
   Oh, boy, I can understand why you would be so concerned.  To be going through this with a  little one is so scary.  However, I  like what the new doc is doing.  The meds are less evasive.  I think that he is hopefully going the right way.  
   On another note, have you talked with your local school district about getting her into the system?  She certainly would qualify for early intervention, and its possible that some of the time spent with other kids would be good for her (and you).
13167 tn?1327197724
Cheesecake,  you have a lot on your plate right now.  I read through your profile and am amazed at how you  keep putting one foot in front of the other.

I spent a couple minutes reading through RAI1 and Smith-Megenis,  and it seems like many of the symptoms aren't related to RAI1?  

(Is she diagnosed with Smith-Megenis?)

I'm always concerned when I see a child diagnosed with a disorder (in this case,  RAI1) and then diagnosed with disorders that are symptoms of the original diagnosis.  So you've got the original genetic diagnosis that is confirmed through a lab test,  and then following,  diagnosis for Autism,  ADHD, insomnia, and central hypotonia.  

I guess my concern is,  when you have such a laundry list of different diagnoses,  and there are individual and various treatments for those disorders that include in some cases things as simple as reducing anxiety,  you can lose focus on what the root problem is.

Do you have a community of support with families of other individuals with RAI1?  Are there specific doctors who treat that genetic abnormality?  Otherwise it just seems like you have to try to treat all these disorders in kind of a scattershot way,  instead of recognizing they are symptoms of this one disorder.

Best wishes.  The PRISMS website you referenced seems very helpful and hopeful.
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