my 8 yr old needs ur help!!

[confusedmama]

Ok, there is a lot to say and I'm hoping someone can give me advice. My daughter Raiven is 8 years old. I knew she was different as soon as she could talk and walk. She was always hyper and impulsive. When she was three I noticed her talking 2 herself, hitting herself in the head etc. She first saw her psychiatrist when. She was 4. She was diagnosed with severe ADHD and placed on ritilin. Over the course of the year she complained about voices and her dr attributed it 2 the ritilin. She tried adderal and had negative effects. Eventually she was placed on extended release ritilin and was up 2 50 mg a day, with clonidine at bedtime. She started showing signs of severe depression, aggression and anger and started hearing the voices and seeing "puffballs" again about 7 months ago. She has since been hospitalized 3 times and has been diagnosed with psychosis nos, bipolar nos, adhd, and odd. She is currently on 36 mg of concerta, 80 mg of geodon and .2 mg of clonidine. The geodon has managed 2 keep the voices and puffballs at bay 4 now. My true question is this: should I apply 4 ssi 4 her, and what are the chances she will be approved? I have missed so much work dealing with this I've almost lost my job. She has therapy every week and when she has bad days I'm all she wants. Plz plz help me.

[confusedmama]

I forgot 2 ask what exactly psychosis nos and bipolar nos means. They just threw on the anti psychotics and didn't explain much 2 me.

[Symora]

Hi Confusedmama, welcome to the forum :-)

Your situation sounds very specific and a professional will probably need to answer your questions. There are a few in the forum and I hope they will be along to address your questions. The rest of us are here to support you if you need it Mama...

[confusedmama]

Thanks Symora!

I hope someone can help because I have so many questions and where I live, what raiven is dealing with nobody seems familiar with. Even the doctors are shady with diagnosis cuz she is so young. I just shelled out 510 for geodon cuz insurance wouldn't cover it. She is my full time job. I love her with everything but I need help financially with her as well as support and answers.

[Symora]

Have you been in contact with your local Mental Heath Association. I don't know much about how they work in the States, which is where I assume you are, but they can perhaps help guide you....

[confusedmama]

Symora,

No, I've not contacted them but I think I will contact them. Any information helps at this point. Thank you so much. I actually feel like I can be at ease on here.

[musemuse]

Welcome confusedmama,

Sorry that your child is having so many problems.

What you could do also is take a letter from her doctor or copies of his workup sheets with you to SSI. I don't think you would have problems then. They will have the proof that they want.

I hope things workout for you and her. It so frustrating for you, I can imagine.

Are you raising her alone? I hope you have some support for yourself because it seems so difficult. You can certainly come her to talk sometimes, if you want, and maybe feel a little better yourself because you are not alone.

God be with you,

[confusedmama]

(Moderating note: Two threads have been merged, this is the second. )

I am writing because of my 8 yr old daughter. I've always known she was different. She was always extremely hyper and impulsive. She was diagnosed with severe adhd at age 5 and placed on ritilin. In the past 7 months she has been hearing voices that tell her 2 kill me and her sisters, they tell her 2 kill herself or hurt herself. She sees "puffballs" that pinch her when she doesn't do what the voices tell her 2 do. She pulls out her hair, bites herself, hits herself in the head and eventually just cries and screams at them 2 leave her alone. She has been hospitalized 3 times in the last 2 months and has been diagnosed with everything from adjustment disorder to psychosis nos, bipolar nos, adhd and odd. I've almost lost my hob I've missed so much work and its only getting more hectic. She has therapy and psychiatrist appointments weekly. She is on 36 mg of concerta, 80 mg of geodon, and .2 mg of clonidine. Should I apply 4 ssi bebefits 4 her? Does she even qualify? Plz help me. What does psychosis nos mean?

[confusedmama]

MuseMuse,

Yes, I do raise her alone. Her father has mental issues himself. He has bipolar and schizophrenia. That's what scares me. I do all I can for her, but sometimes it gets so hard. I'm the only one that can do drs appointments, I'm the 1 the is up sleepless nights because I'm scared of what she could do. I have seen positive effects from the geodon but without it the voices are right back. I just know I need to supplement my income cuz she just cannot function normally without medication or in a normal setting.

[Luna-]

Welcome to the forum, confusedmama.

Wow, I admire you!

Psychosis NOS (Not Otherwise Specified) is a category for a presentation of the symptom of psychosis, which does not fit the pattern of the other psychoses that are described and defined in the diagnostic manual. For example it could be neurological. Similarly Bipolar NOS is a category of bipolar which isn't one of the type already described. (At least there is recognition that the human mind is greater than our understanding of it and that psychiatric diagnosis isn't a finite business.) Exact diagnosis is probably harder in a child since they're developing and their brains are growing and changing.

I'm in South Africa so disability grants likely work differently where you are. But I can't see that she wouldn't qualify and it's worth pursuing, I think.

I wish I could suggest something to you, but you've already done what I could recommend. Perhaps someone else here has some ideas. I assume she had had a medical work-up, scans etc.

To my mind, your best tools are love and educating yourself. It must be dreadful for her and equally so for you. But we can provide support, a place to vent, cry or whatever.

[hell2breakfast]

I suggest farming her out to a happy, preferably young couple (relatives if possible) for at least a month with no visits to rule out environmental factors. Do this with the drs approval and supervision if possible. But you need help with this problem..."It takes a villiage to raise a child"

Also it seems that she is on a lot of meds, have you thought about a second opinion?

We are here for you, and wish the best for you and your child

[Luna-]

(I'm going to merge this thread with the one you posted in Schizophrenia and Psychosis, confusedmama, and move it over there. Again, welcome.)

[confusedmama]

Luna,

I didn't understand the whole merging thing. It doesn't show up what you said. I appreciate any feedback and I keep thinking of new questions. Such as, do "normal" kids have 2 take antipsychotics? I know she's not normal but is she "crazy"? It scares me cuz I want her to have a normal life, but unless she is medicated she just can't even function. Even with the geodon her mood swings are wild.

[confusedmama]

Luna,

Thank you so much. I'm sure there are going to be several times when I'm on here 2 cry. Sometimes I feel so alone and nobody around me understands. They all just say I'm the 1 that has the "bad kid". She's not bad...well ok, yes she's bad sometimes..really bad but she is my daughter. Nobody should be able 2 just say what they want about her. I get very defensive and protective over her. My boss even told me I should put her in a home!! Like wtf? Would u do that with ur child I wanted 2 say. I've been dealing with this all her life. 2 me its almost normal but other ppl think I'm crazy for letting her stay in my house when she's vocalized the voices tell her 2 kill me. I have however got my other 2 out of the house, at least 4 a few months. They r with family.

[confusedmama]

I won't send my 8 yr old off 2 live with someother person. I refuse. I am young, I'm 28. Her not having contact with me would kill her. It would break every last bit of happiness she has left. She is on a lot of medication but so far its the only thing that's kept the voices at bay. I appreciate ur opinion but shipping my daughter off is just NOT an option.

[hell2breakfast]

I won't send my 8 yr old off 2 live with someother person. I refuse. I am young, I'm 28. Her not having contact with me would kill her. It would break every last bit of happiness she has left. She is on a lot of medication but so far its the only thing that's kept the voices at bay. I appreciate ur opinion but shipping my daughter off is just NOT an option.

I'm sorry if I seemed blunt and insensitive But a temporary separation is the o:)nly bullet-proof way to determine if you are part of the problem. I wish you the best at any rate.

[confusedmama]

Hello!

She and I have been seperated, when she was hospitalized. This last time for almost 2 weeks. She had breakdowns there and heard the voices there as well. So I really don't think its me...but now that you've said that I'm upset. Could I be doing something wrong that's causing her psychosis?

[malign]

Well, whatever advice you might get, anywhere, mama, should probably be checked with the mental health professionals who are directly involved with your daughter's case. Random thoughts from people like us are just that.

I assume h2b is trying to help with his suggestion, but there's no way any of us can know for sure what will help you and your daughter. And it's no good if you get into a panic; just ask her doctors and see what they think.

[confusedmama]

Thank you 4 the feedback!

Her doctors and therapists don't think I have anything to do with it. They say its because her brain doesn't work the way most ppls brains. I'm just confused.

[malign]

From what I understand, a lot of it is brain chemistry.

I would suggest not trying to mess with words like 'normal' or 'crazy'.

What most people mean by those words is not very useful. After all, if you ended up deciding your daughter was whatever you mean by 'crazy', would you love her any less? Would you do anything differently?

I hope not. She's a child. She needs her mother, and you've been there for her. Even if she needs medication for life, so what? So do kids with diabetes; would you label them as 'not normal'? It's a challenge, that's all. With her mother on her side, she stands the same chance as any other kid.

[confusedmama]

Malign,

Of course I wouldn't love her any less!! She is my baby, and hell or high water I'm here with her, supporting her. I don't care if that means she has 2 live with me her entire life or if she will always need my help. I'm her mother and no matter what ill be here. Thank you so much for ur input.

[hell2breakfast]

Ok, there is a lot to say and I'm hoping someone can give me advice. My daughter Raiven is 8 years old. I knew she was different as soon as she could talk and walk. She was always hyper and impulsive. When she was three I noticed her talking 2 herself, hitting herself in the head etc. She first saw her psychiatrist when. She was 4. She was diagnosed with severe ADHD and placed on ritilin. Over the course of the year she complained about voices and her dr attributed it 2 the ritilin. She tried adderal and had negative effects. Eventually she was placed on extended release ritilin and was up 2 50 mg a day, with clonidine at bedtime. She started showing signs of severe depression, aggression and anger and started hearing the voices and seeing "puffballs" again about 7 months ago. She has since been hospitalized 3 times and has been diagnosed with psychosis nos, bipolar nos, adhd, and odd. She is currently on 36 mg of concerta, 80 mg of geodon and .2 mg of clonidine. The geodon has managed 2 keep the voices and puffballs at bay 4 now. My true question is this: should I apply 4 ssi 4 her, and what are the chances she will be approved? I have missed so much work dealing with this I've almost lost my job. She has therapy every week and when she has bad days I'm all she wants. Plz plz help me.

Of course you should apply for SSI assistance. That's what its there for people like you

[Symora]

I admire your courage, I really do. I have a niece who has two severely autistic boys, and I admire her so much as well - raising special needs kids takes grit. I raised my two daughers on my own, so I can appreciate the determination and persevance it takes to do this on your own. What you are doing is important... just don't forget yourself and your other children. If you burn out then there is nothing left, so do take advantage of any program that will allow you some respite....

We are here whenever you need :-)

[confusedmama]

Thank you so much. Its so nice just to have someone say I'm here if u need it. Well, let me start by saying I don't think what i do can be considered courageous! Its natural to me because I'm her mother. But I am becoming slowly burnt out. The last 8 months have taken soooo much out of me. So my oldest is getting on a plane tomorrow and heading to arizona to spend a few months with my parents and my youngest is with her dad for a few months. I know I've not been giving the other 2 the attention they deserve, but raiven consumes so much of my time and efforts. I know its not fair 2 them but I have 2 give her what she needs. Tonight was a rough night. Raiven triggered and became very sad and emotional. She started crying and has been crying for 3 hours now. Her sleeping meds should kick in soon. I gave her a chocolate bar as well. Seemed to help....thank you so much. I'm so thankful to everyone here. I feel at peace that there are ppl I can talk to without being looked at or viewed like I'm insane for keeping a child in my house that has vocalized killing me. So to everyone who has offered help and support, thank you!

[hell2breakfast]

Thank you so much. Its so nice just to have someone say I'm here if u need it. Well, let me start by saying I don't think what i do can be considered courageous! Its natural to me because I'm her mother. But I am becoming slowly burnt out. The last 8 months have taken soooo much out of me. So my oldest is getting on a plane tomorrow and heading to arizona to spend a few months with my parents and my youngest is with her dad for a few months. I know I've not been giving the other 2 the attention they deserve, but raiven consumes so much of my time and efforts. I know its not fair 2 them but I have 2 give her what she needs. Tonight was a rough night. Raiven triggered and became very sad and emotional. She started crying and has been crying for 3 hours now. Her sleeping meds should kick in soon. I gave her a chocolate bar as well. Seemed to help....thank you so much. I'm so thankful to everyone here. I feel at peace that there are ppl I can talk to without being looked at or viewed like I'm insane for keeping a child in my house that has vocalized killing me. So to everyone who has offered help and support, thank you!

Its sad that the one that might benefit the most from positive male exposure/contact is the one not getting it. But you know the situation better than anyone else. I hope this at least relieves some of the pressure you have been under and it is manifested in Raiven.