not sure how to help her

[Jena]

hi to everyone,

sorry i haven't been in much i've been trying so hard to journal and to get stuff done.

im kinda sad about difficult child. i spoke to teacher today she said she's doing ok she's surviving. i think the teacher is looking forward to end of year to be quite honest.

difficult child has been doing the anxiety nurse thing again this week. the weeks are all so different there are good weeks then bad weeks. she hasn't slept this week either. she finally crashed tonight.

she flew sunday, monday, partial on tuesday about 1 a.m., wed 1 a.m. sunday and monday were all nighters. tonight she crashed hard and cried at dinner was very weepy and sad.

she spoke of her old school and neighborhood prior to this one. and how happy she was etc. weird thing is she wasn't at all, anxiety was thru the roof, that's when the sh*t hit the fan so to speak pretty badly. so i spoke to her about that stuff and she shut down immediately with i dot'n want to talk about it. i said ti's ok i just want you to know that it was the same baby as it was here. we are working on it.

then i asked her is it frustrating how you feel inside? she started crying and said yes. then i don't want to talk about it again so i backed off and just hugged her alot older difficult child made her laugh adn i gave her a cupcake.

in the lunchroom she now sits facing the wall so she can eat her lunch because she is too paranoid and anxiety ridden about other kids watching her. in class she barely gets by, recess has turned into a good thing she is actually socializing somewhat even on bad days, well bad days she goes to nurse actualy during recess.

columbia said she is critically depressed, anxiety ridden but their not ready to say bi polar. i watch the swings all week. i shake my head sleeplessly and just don't get it any of it. my confusion is worse than ever before. i want an answer a true answer yet columbia doesn't seem to me at least that their minds are open to bi polar even. she explains difficult child's sleep as i had stated before as asleep disorder. i do not believe this is it. yet i will do the study to rule it out. there are too many other variables at play. the mood swings, the lack of focus, the anxiety, the highs and lows.

so i heard there is a study going on in pittsburgh i'm out of money but i'm thinking of trying to cal them to see what the deal is there. it's a team of doctors who truly spend time with your child to get Occupational Therapist (OT) know them not an outpatient 3 dy run of neuropsychologist testing.

i want to help her i truly do yet i know deep down inside she's not good and it's coming out so often now on the outside.

the antipyschotic drugs are bad. i saw it on a special. bi polar is so new now and it's never been tested on kids the drugs so dr.s are prescribing it not truly knowing what the side effects will be.

some kids are actually having tics come up they did a study ten years down the road after the medication has been stopped and was out of system. not to scare anyone but this stuff is no joke.

in my opinion there needs to be more funding and more research done on this topic so that we the parents have better answers for our little people who are also the future.

Jen

 

[smallworld]

Jen, I think it's irresponsible to put out a blanket statement that antipsychotics are bad. It is certainly true that the atypical antipsychotics have not been around that many years, and the long-term neurodevelopmental effects on children are not known. But taking any medication -- even Tylenol for a fever -- involves a balancing act between risk and benefit.

Some children and adults need APs to treat hallucinations. Some need them to control mania. Because of the side-effect profile, I'm certainly not happy that I have two children on APs. But Zyprexa literally saved my daughter's life when she refused to eat from a fear of choking. And Seroquel was the first medication to put a dent in my son's treatment-resistant depression with which he lived for more than two years.

If anyone is interested in seeing the PBS program Jen mentioned, here's a link to view it online:

http://www.pbs.org/wgbh/pages/frontline/medicatedchild/

 

[LittleDudesMom]

Jen,

I know it must be so incredibly difficult to watch difficult child suffering so. It makes me sad just to hear about the lunchroom seating - it pulls at my mommy heart.

I must tell you that I agree with smallworld regarding ap's. Seroquel was a go*send for my son!

I agree with you that there needs to be more research on effective and safe medications for children. But we need to be cautious about not making blanket statements about medications and treatments. Remember that all our children are different and their treatments (therapies, medication, etc.) vary widely.

I hope you find some answers soon for difficult child. It's wonderful to hear that easy child steps in and tries to help her sister! Hugs.

Sharon

 

[susiestar]

I am sorry your daughter is in such a sad state. It is certainly hard on a mommy heart, isn't it?

I also think it is unwise to say antipsychotics are bad as a blanket statement. There are some serious risks and side effects to them. The same is true for EVERY medication, and even for most foods. It is a tightrope we walk.

Without antipsychotics my difficult child would have spent years in a hospital or other institutional setting, rather than at home going to school. They were crucial with his antidepressants to keep him from killing himself. They let him have a life that he could enjoy.

I agree that we don't know enough about many medications.

I hope your daughter gets better soon.

 

[BusynMember]

My kid had scary side effects on ap's. I know that doesn't have to happen, but he had those movement problems on both Risperdal and Zyprexa and the worst part is that, when he was just having symptoms, feeling sick, before he started the movements, the psychiatrists poo-pooed it as "a virus." I think it's smart to research all medications and weigh your own idea of what is best for your child. My son didn't have those affects on Seroquel, but it turned out he didn't need it either...so the right diagnosis. is important. I'd go to Pittsburgh. (((Hugs))) to you.

 

[Jena]

hi,

many of you have gotten to know me so very well and so i tend to type with-o always fully engaging brain.

i just wanted to say and i'm sure you guys knew what i meant when i made that comment about the a typical antipyschotics. smallworld suzie i know that they do work for many children and i wasn't under cutting that at all and i'm so glad that their working for yours, truly. i think the way i should of phrased it was that there has been so little research and testing (absolutely none on children) and it's incredibly hard for us parents to make these decisions based on no stats, no clinical trials to know ok how is this going to affect my kid ten years down the road? it's hard for us and i really do think that there needs to be so so much more testing and research into this particular disorder. it seems that there is such controversary over it, some say nope doens't exist others say yup. bottom line is a kid is either functioning on a fairly average level with behaviors for that particular age range or they aren't. it's clear cut black and white.

this whole dmv whatever to try to see if they have it i think needs to be revised as well as other children exhibit different behaviors. how can you possibly have one standardized way of ruling out these types of disorders if we're stil in teh process of learnign about it?

also i have Occupational Therapist (OT) say i know alot of parents go through alot worse than i. kids are grabbing knives in the middle of the night threatening their parents i cannot even imagine. difficult child doesn't exhibit those behaviors right now. all we've seen is alot of anger and rage getting physical with other kids now occassionally stomping of feet slamming doors broke one toy hit me once her threshold on certain days for "no" from me is non existant.

yet is her quality of life good enough right now? that she is experiencing diarrhea in school daily, that she faces wall in lunchroom to eat, that each night she can't calm down enough to sleep that it seems like her little heart is so sensitive there is almost no filtering system like most of us and even children have to some extent. just seems like life hits her head on every little incident.

i'm aggrivated i guess. times a wasting, she's 9 now at 100 pounds way too much for her age. she overeats maybe it's the depression end of it, she's always anxiety ridden always insecure views herself very negatively. the school says oh just give it time? i said give it time?? time for what till she's 12 and popping pills possibly. they keep viewing it like she's adjusting to new school and neighborhood this past year we have been here and tha'Tourette's Syndrome what it's all about. that's just an added stress she didn't need. yet these thigns these behaviors have been exhibited and are only getting worse for years.

the sleep thing totally throws me for a loop. what defines mania?? i look it up grandiose thoughts, not needing as much sleep, etc. this is what i see. moments when difficult child is ontop of the world doens't happen much but it does. it seems to bounce from one thing to the next with her mood wise. i feel like we're never in the same mood for long. before it flips again on me and her.

sleep disorders. i looked them up, doctor and i spoke of it. ok i guess i'll put her throuhg more testing regarding that even though she's mentally done i also think that that is affecting her she's super sensitive now she thinks she has problems big ones. none of the sleep disorders fit her at all. they all state kid can't function the next day yet difficult child can. she's anxiety ridden but she can. is that normal for a child to get one or two hours of sleep and go all day and into the next night with out any major problems????

so many questions not enough answers.

 

[DammitJanet]

Jen...

depression and anxiety can cause mood swings. Personally I dont care what they call the disorder...just treat it!

I also dont like the blanket statement about AP's. While I dont particularly like them for myself, they do have their place. I have taken seroquel successfully in small doses for sleep with no ill effects.

In my opinion you are running in circles trying to find the magic answer. It just isnt always there. If your child is having trouble sleeping, ask for something else to help with sleep. If your child is depressed, ask about something for that. You will never know if something helps if you dont try it.

 

[Jena]

hi,

ok i get you didn't like statement wow sorry again. but if you read last thing i wrote i kinda covered that with an apology

anyway yup i get what your saying. i still want diagnosis though. i am moving forward wtih trying to find new pysch and therapist to help her. yet pre puberty's approaching. i guess that is my fear. once that hits i won't be able to figure out what's up either way.

they can't give her anything else for sleep we have already tried 3 different medications with no success or severe side effects.

as far as depression goes i can't get her any drugs til i get new doctor with prescription pad. oh how i wish i had my own prescription pad. circles yes i am. magic answer not so much i dont' think there will be any one magic answer. yet i think that diagnosing bi polar does infact take several years and maybe several doctor's and evaluations. which is frustrating for her and i especially her yet maybe them being careful i should be thankful for.

we have tried the ssri's they fly her into mania. the a typical's dont' work. so i'm not quite sure what the next doctor will say. yes i agree we won't know until we try. yet to date we have been on 8 diff medications with no marked improvement.

 

[smallworld]

Jen, how about finding a child psychiatrist who does integrated care -- medication management AND weekly psychotherapy (in other words, no separate therapy with a psychologist). That way the psychiatrist who writes the prescriptions will also be observing her frequently to refine the diagnosis. We've done this with our three kids, and it's worked out beautifully. My older daughter has been stable for 1.5 years. My younger daughter has improved, but we're still tweaking medications. And my son is making tremendous progress for the first time in years.