New Here - 6yo with Dual Personalities

[flutterby96]

Hi, I was actually here briefly 2 years ago when my difficult child, Tuna, was diagnosis with ODD. Weeeeee're baaaack! )-: Now it's a diagnosis of Anxiety Disorder not otherwise specified & mood disorder. She started on Abilify 2mg & Remeron 15mg and we had a different kid overnight. It was great, we thought all our problems were solved. How dumb is that! That was last spring. Then summer hit, and it all went to pot. This year, first grade is going great - at school. The teachers can't believe she's the same kid who had such troubles last year.

But, home is a different story. I cannot believe the way she reacts to us! She is so hateful in her speech - and, it's over the littlest things: asking her if she wants milk or juice for dinner, telling her she needs to get a bath, praising her brother in front of her. It's also completely inconsistent! We've yet to find any kind of commonality in the things that set her off. I feel like the worst mother alive because, even though I know that most of this is beyond her control, I still blame her & avoid being around her.

We've gotten in with a good counselor to help us with our parenting skills, but her psychiatrists are a joke! My husband lost his job right after her diagnosis in the spring, so now we're on the state medical insurance plan and their providers are so understaffed & overwhelmed that it's not like we're getting great care. And, I don't even know what to ask for half the time, in terms of services.

Anyway, I'm not sure exactly what I'm asking for, or what I'm expecting. I just thought it might help to know that I'm not alone. So, thanks for reading this.

 

[BusynMember]

Hi and welcome.

I just wanted you to be aware that university hospital psychiatrists (and they are often the best there are) almost always take Medicaid. They are not only usually superior to county services, but they are often even better than high priced private psychiatrists in practice for themselves. That's where we always take our kids and Medicaid is never a problem.

 

[Wiped Out]

Welcome Flutterby,

You are definitely not alone and will find much support here. I have to get up for work in a bit or I'd write more. I'll try to pop in later for a better welcome!

 

[smallworld]

Hi, there's a chance the medication doses just aren't high enough. My daughter has severe anxiety and was melting down quite a bit at home. She actually was taking 15 mg Remeron (with Zyprexa, in the same family as Abilify), and we needed to increase it to 45 mg Remeron. She's doing a whole lot better now. Your daughter's Abilify dose is also very low as well. Please talk to the psychiatrist about your daughter's behavior and the doses.

 

[TPaul]

Welcome back to the board!!! It does help to have someplace to go that will listen and understand what we are going through.

 

[graceupongrace]

Welcome, fb96.

Many of us experience the "Jekyll and Hyde" syndrome. been there done that, trust me! Sometimes it's all our kids can do to hold it together during the day, and they come home where they feel "safe" (emotionally) and unload on us. It's no fun being at the bottom of that particular funnel.

Hugs.

 

[flutterby96]

UPDATE: Lost state-health insurance, so "Tuna" has been off-medications since before Christmas. She is deteriorating rapidly, even at school which was her "good" time. Erratic & severe mood swings rapidly throughout the day. Won't fall asleep til after midnight, despite being awakened for school at 7am - she is exhausted, but her body won't let her sleep. Just started her on 2mg Melatonin (Time-Release Capsules) last night but she's still having a hard time falling asleep. Should I increase dosage? She's almost 7yo, weighs 65lbs & is very tall for her age.

 

[flutterby]

I can't answer about the melatonin, but contact the pharmaceutical company about prescription assistance.

 

[tiredmommy]

Truly, she needs to be seen by a board cerified psychiatrist. Was she weaned off the medications? She sounds highly unstable to me and may need a brief inpatient stay. You need to get her back on the state insurance asap! Plus, I doubt melatonin will help in the long run... it tends to lose it's effectiveness after awhile.

 

[Calista]

If you can't see a decent psychiatrist, and trust me when I say that even with the best insurance they are hard to find, then you might want to consider a psychopharmacologist. They cannot prescribe in all states, like Texas, but they can make recommendations that you can take to your pedi who can write for them and follow for side effects, etc...

If there is a University near you with a PhD psychiatric program you might want to call them and see if they have a low cost clinic. The practitioners are PhD students followed closely by their professors. They often have access to psychiatrists throught "the back door." Also, if you can get an evaluation and an accurate diagnosis from them or school or anyone, then you can take that back to your pedi and he may have some medication ideas that are diagnosis specific.

Try MHMR. They should see you even without a payor source and may even be able to help get your medicaid back in place.

 

[Calista]

by the way. Abilify is rarely prescribed by itself. It needs a helper. Especially with the anxiety.

 

[smallworld]

I recommend contacting the National Alliance on Mental Illness (NAMI) to locate the nearest mental health clinic in your area for free or low-cost mental health care. The contact information for the Arizona state chapter of NAMI and local affiliate offices can be found at www.namiaz.org. The NAMI staff should also be able to tell you how to reinstate your state-health insurance.

These websites provide information about free or low-cost prescription assistance:

www.needymeds.org
www.themedicineprogram.com

Hang in there.

 

[flutterby96]

Thank you, all! I'm so grateful for the info/support. My husband & I do not see eye-to-eye when it comes to the medications issue. He is concerned about the side effects the medications were having on her (extreme hunger/weight gain, low energy levels), so I reluctantly gave in when it seemed the medications weren't "helping" anymore. Good grief, how insane is that?!?! They were probably at least keeping much of this at bay. Even now, with all that's going on, I feel that he is in denial about the depth of her issues. I have a sib who wasn't diagnosis bipolar til after a few inpatients in her teens, and I don't want to see my difficult child suffer through a miserable childhood like that - no diagnosis, no medications, no resources, no support.

It's hard because we got on state insurance when my husband lost his job but now we make too much money (hard to figure that one since I'm the only one working & I deliver pizzas 4 nights a week) to qualify. I'm working on getting her onto another program for people in our situation that requires a small monthly premium, but the red-tape is exhausting!!!

We live in the Phoenix metro area and I was referred to a clinic at a hospital for some sort of assessment (Psycho/Behavioral/Developmental something or other??), but by the time I called they weren't accepting new patients & have a 2 year waiting list. Thinking about contacting the university medication school in Tucson, even though its 2 1/2 hours away. Might be worth it.

You've all given me somethings to think about. I think my biggest struggle right now is feeling like husband & I are not united on this. We've talked & talked & talked about it, but it seems like he doesn't grasp how "far gone" she is. He is also primary care-giver now, which makes it difficult because he doesn't seem to know how to handle her & is very intimidated/overwhelmed by her.

I'm rambling, I know. Sometimes I think this is the only place where people will listen & not judge. Thanks for that.

 

[smallworld]

Sometimes it takes a while to get the medication combo right. If the medications cause unwanted side effects, you and husband need to agree to go back to the psychiatrist and ask for a medication combo that reduces her symptoms AND at the same time does not cause a lot of bad side effects. A psychiatrist should be able to work with you on this. It is far better than what is happening now to your difficult child.

 

[totoro]

Hi and so sorry for having to be here again.
I have some info about Tucson. Good and bad...
You can PM me if you want to know anything. I know the ins and outs about a lot of the Doctors...
I do know a lot of the psychiatrist's travel down here from Phoenix to work. Contact me though if you want to chat about SO. AZ. and the help down here.

Hang in there you will find something.

 

[flutterby96]

THANK YOU, THANK YOU, THANK YOU!!! I cannot say it enough! I'm so thankful for this board & all the wisdom/advice available. It's truly a Godsend right now.

husband & I had a decent conversation about medications last night and he is now in agreement that she has to be on something. The melatonin is helping her fall asleep a little faster, and she's not so difficult in the mornings the past few days. I know that's not all of it, but it's a start and I'm thankful for that.

totoro, thank you for your offer - I will PM you. I know this is a non-denom board, but I do pray for all of us each night that God would grant us strength, wisdom, and most of all... peace in dealing with our children. HTH!

 

[flutterby96]

Update: So, apparently a family of 4 cannot gross > $1800/month or you get bumped from state health insurance. And, apparently there's now an "enrollment cap" in place for the KidsCare program (where you pay a small premium for kids-only coverage for low-income families). ARGH!!! What now?!!?!?

 

[totoro]

Here are a few programs that I have looked into, they have groups etc, down in my parts as well.
Unfortunately we have tons of Autism help here but not much for Mental Illness. You have to search.
But it is out there.

 

[flutterby96]

UPDATE: "Tuna" has been having a rought couple of months since my hubby returned to work in March. Her new psychiatrist took her off the Remeron, saying that it wasn't doing anything except making her tired & hungry all the time. So, now she's on just the 5mg of Abilify daily. We've discussed adding an SSRI like Celexa or Prozac to her regimen to help raise her moods. Thoughts? Suggestions? Also, we are in desperate need of a parent support group in the West Valley of Phx. I've looked at the NAMI site & some other local ones - if anyone has any suggestions or recommendations, please feel free to PM me. Thank you!!!

 

[susiestar]

Welcome back! It is nice to hear from you again!

I am a little confused. You have her medications different in the post and in your signature. Is she taking just abilify? Is she taking it or are you unable to afford it? In your sig you say no medications because you can't afford them, So I am not sure.

If $ is a problem, be sure to tell the doctor. Often there are older medications that are in generic that can be at least tried. It is better to try an older medication that you can afford than to get prescriptions for newer medications that you cannot afford to give as prescribed. If you don't tell the doctor they won't know. Docs get a LOT of pressure from drug reps to rx the latest and greatest new thang, whether it works or not. I have to keep riding my daughter's neurologist because he either wants to rx the most expensive new drug or an old drug no one makes and costs more than the new drug. He drives me nuts that way!

You have Tuna's diagnosis's listed ans Anxiety not otherwise specified and Mood Disorder. Has she ever been on a mood stabilizer? If she is thought to have a mood disorder I would want her on a mood stabilizer first to see if that would help. If the first one doesn't help I would try another couple of them. If she has early onset bipolar and you put her on a medication like prozac she is NOT going to do well. It will make things much worse. She may do poorly on prozac anyway. Many of the ssri/snri medications do NOT work properly in kids. My daughter is NOT bipolar in any way, shape or form. She is a very even tempered child. We put her on prozac to help with PTSD years ago when my difficult child was at his worst. It made her high. As a kite. My sweet little rule follower who NEVER got into trouble because the teacher would be disappointed with her broke into song when the teacher tried to start a lesson after lunch and led her classmates in a conga line type dance. TOTALLY not in character for her! It stopped a few days after we stopped the prozac. Zoloft did very similar things though she was a bit more belligerent.

If your daughter's mood disorder is actually bipolar (many docs do not want to "label" a kid with this for some reason) it likely will take a lot longer to get over the effects of the medication. Some docs will tell you that this is the right medication to start treatment for bipolar if the patient is depressed. It is not. The guidelines for rx'ing to treat bipolar say to start with 1 mood stabilizer and then a 2nd may be needed, and an antipsychotic can be added next. Once the patients mood is stable, stimulants or antidepressants can be added slowly and cautiously if symptoms are still present.

For many medications it takes 6-8 weeks at the therapeutic dose to see the full effect. So it is a real juggling act. Someone will be able to give you a link to the prescribing guidelines for bipolar, or they are in the book, "The Bipolar Child" by Papalous. I recommend reading this book. It has a lot of info that can be useful even if your child is not bipolar (or it was useful to me.). Bipolar is not just 'up' and 'down' moods. Some people with bipolar get stuck in a mixed state that is some of both. It can be really hard to see if that is what you are dealing with.

Has Tuna ever been to a neuropsychologist for testing? They do extremely in depth testing, 10-12 hours worth over several sessions if they are being really thorough, and can often really pinpoint the proper diagnosis. Or had a multidisciplinary evaluation (docs from several specialties each examine and test her and work together to figure out what is going on)? You can find either of these at major children's hospitals or university hospitals usually. in my opinion you should probably try to find one of these as soon as you can. It will make treating her more effective because you and the doctor won't be guessing what you are dealing with.

I know I am writing a book here, but I have just a couple more things. Have you read "The Explosive Child" by Ross Greene and "What Your Explosive Child Is Trying To Tell You" by Dr. Douglas Riley? Many of us highly recommend them. The Explosive Child is kind of our "bible" around here. It works on kids regardless of their diagnosis (and on husbands. shhh! Don't tell my husband!). Dr. Riley's book helps a lot also. He pops in here sometimes and has great ideas and info.

I also recommend that you write a Parent Report. There is an outline that moms who were here before I came created. It helps you keep ALL the info about your child in one place and lets you give the professionals you work with info on your difficult child and family in a clear document. The outline is in the FAQ/Board Help section under the title "Multidisciplinary Evaluation/Parent Input". This is an invaluable tool. Just don't try to do it all in one sitting!

My last idea is to have Tuna evaluated for sensory integration problems. Sometimes our brains don't process input from our senses properly. It can cause all kinds of problems. A private Occupational Therapist (OT) can evaluate this and teach you how to help. It can make HUGE improvements, sometimes very dramatically. Treatment for this does not involve medication or anything invasive. Schools do have Occupational Therapist (OT)'s, but they only look for how sensory problems impact school, not how they impact her entire life. So seeing a private Occupational Therapist (OT) is important. One primary therapy is brushing. It is fairly easy but MUST be taught by an Occupational Therapist (OT). IF done wrong it can cause real problems.

(((hugs))) It is good to see you again. don't be such a stranger!