i'Tourette's Syndrome a forever thing they all agree

[Jena]

hey

sooo yup me again pain in the butt.

so difficult child did full shut down this am. on me my throat hurts, i'm not eating anymore, dont' tell them. i'm going on liquid diet in new york etc.

yup real nightmare indeed. so at end of day i spoke to the head dr there therapist that's been working with us and she agrees that this thing is going to keep happening. each time difficult child's anxiety and other issues get unmanagable that throat muscle's going to tighten up and she'll shut down.

do we have a crystal ball? no, yet that's my thought and there's also. so incredibly sad. i have no clue what the future will hold. staying in the day.

i will not be flying her back here this is no point in that. we'll c working on getting a team of doctor's together that isn't going so well. lol surprise surprise.

also implementing home tutoring meet up group and also church each week etc. she's needs socialization. she isnt' medically stable yet so the horse back riding wont be happening.

 

[Steely]

Oh, I am so sorry - many, many hugs and prayers going your way..............
Are you in Portland?

 

[smallworld]

Jen, her body may have adjusted to her Zyprexa dose. There's a chance she could go up. You might want to ask if they've ever used Zyprexa doses higher than 7.5 mg. We once had to go up to 12.5 mg Zyprexa with M. Your daughter has very significant anxiety that needs to be addressed with significant doses of appropriate medication. Just a thought.

 

[Jena]

right now i am yes. yet i'll be flying back to ny on wed. monday we have doctor's all day. mri for her for a tethered cord possible issue the wetting bed ea. night and their checking her out to see if she's medically stable to fly. that's last word i heard.

so the team of docs thing isnt' working for me. so i'm on phone lining up singing lessons, riding when she can as well as having issues getting a home tutoring meet up group in place can't find any right now. i'm also lining up the church thing weekly with-sunday school piece.

thought if i can make home enticing maybe just maybe she'll calm. here's hoping

 

[HaoZi]

Are you willing to have the feeding tube placed again at local hospital if she shuts down at home? If so, does she know this?

 

[smallworld]

It is far better to ease the anxiety with medications than get her to eat with threats like the feeding tube, in my humble opinion. The feeding tube should not be used as a threat; it should be used for medical stabilization. See my Zyprexa comment above.

 

[HaoZi]

I agree the Zyprexa should be adjusted, but I also think if she believes she can get away with a liquid diet on her return that's exactly what she'll try for first when things get tough instead of trying to work through her other issues, she'll keep the focus on this one.

 

[Jena]

doctor's not me strongly advise to tapering down off the zyprexa they do not want her on it for long. i'll be able to get medication on other side if necessary. they said yes use threat of tube and portland. we'll c how it all goes.

 

[Jena]

doctor's exact words difficult child has a little food phobia, compiled with other pyschiatric issues sprinkled with extreme neediness for me! it's behavioral also. uh oh going home choke up anxiety, life here at ronald mcdonald is better etc. so so far got riding lessons set up in two weeks if she's medically cleared to go, person to clean my home which i heard is filth, working on singing lessons and sunday school and meet up homeschooling group, doctor's still working on that. been on phone for 5 hours and online. head hurts

 

[HaoZi]

I do hope she gets a handle on ways to deal with her anxiety without shutting down completely soon.

 

[smallworld]

Jen, if your daughter has bipolar disorder, Zyprexa treats that as well. If you read all the books about BiPolar (BP) in children, you will see that kids need medications plus therapy. Those medications include a mood stabilizer (Lithium, Depakote, Lamictal, Trileptal, Tegretol) plus an atypical antipsychotic like Zyprexa. There is very little chance you can stabilize a child with BiPolar (BP) without those medications. Why would you threaten that stability if you've gotten halfway there? I understand that Zyprexa -- like all the APs -- has side effects, but so does a long-term eating disorder that threatens your daughter's heart. You have to do a cost-benefit analysis, and I'd take medication side effects over a life-threatening heart condition.

 

[Jena]

wow ok breath!!! i know your saying that because you care. so i'm taking it that way. AGAIN doctor's told me this. i will get her medications on the other side. let's remember these guys are medical doctor's not pyschiatrists. I have NEVER threatened her well being at all. infact i should get an award yet i dont see one coming my way anytime soon lol.

i know you meant no harm you just got a little crazy in that last response to me. but i still love ya just breath please........ and yes i have always had medications on board and therapy. you already know that. their medical doctors' here they aren't comfortable in the pyschiatric medication place and world we live in. so to them taper down. that is why my pyschiatrist on other end whomever that new wonderful man will be will help guide me unless i gotta go back to my old guy.

 

[HaoZi]

Have you located one for her yet?

 

[Jena]

plus in all honesty these guys are literally the only place in the entire united states that has a protocol for treating a food phobia. they do know more than us when it comes to that piece. my little princess just has alot of other junk. they've treated far more than one child.

 

[Josie]

I don't understand why the doctors would suggest tapering off the Zyprexa when she 1) doesn't have her phobia completely under control now and 2) will be going back to a more stressful environment. If this is going to be a life long condition brought on by anxiety, why would they say to take her off her anxiety medication?

I get that Zyprexa is a heavy duty medication with some serious potential side effects, but not eating is a pretty serious already. When I think about side effects for medications, I think about what could happen and compare that with what is already happening without the medication.

Even if the re-emerging phobia is due to anxiety over going home, that means her anxiety is not controlled well enough, in my opinion.

This looks so much like Obsessive Compulsive Disorder (OCD) that I don't know why no one at either hospital has suggested CBT/ERP for her.

 

[Jena]

working working working on it!!! couldnt' find from new york what makes me think i'm going to find a new one from here lol. alot that dont take insurance want me. hmmmmm life is life. this kids' gotta learn to live in it somehow and so far in twelve years she hasnt done a very good job at it. mental illness or not she's gotta push herself. seriously though. it can't all be me anymore with her. we've been working diliigently at teaching her to speak up self advocate, be part of her treatment now at almost 12 she needs to be. also acceptance at who she is is key. that'll come in time. right now she's fighting her own self.

 

[Josie]

I guess I was getting a little crazy over it all, too while you and Smallworld were typing. LOL

I still think an Obsessive Compulsive Disorder (OCD) treatment center would be able to treat this.

I even talked to my daughter's therapist about her not eating meat, which I think is possibly part of her Obsessive Compulsive Disorder (OCD). He had a way to help with CBT/ERP. He made it clear there was the eating disorder way and the Obsessive Compulsive Disorder (OCD) way.

 

[Jena]

its' all good because i know how much you guys care. listen we get it the warrior kick butt mom's of the medication difficult child world. these doctor's haven't run across a true difficult child. i just got a call to a sudden mtg. update later. i just hate when ppl make it sound like i haven't jumped thru heaven and earth to help this child. that gets me a little umm pyscho lol

 

[smallworld]

Jen, I didn't mean any harm. I agree with Hope. If her phobia is not under control, it doesn't make any sense to wean her off Zyprexa. I have walked this road. I don't mean to scare you, but if you wean her off the Zyprexa, you will go back to square one and she will end up not eating again. At least keep her on the Zyprexa until you find a new doctor who can give you some guidance.

I also understand what you're saying about her taking ownership of her own problems, but give her a break. She is only 12. She needs medications to calm her anxiety down and THEN she will be able to access therapy. I've seen this happen with my own kids. It also takes a skilled professional and a lot of time and patience.

 

[HaoZi]

right now she's fighting her own self.

Never a fun thing to watch or do. *HUGS*