Back on-line and the DX's are starting to sink in.

[totoro]

Well our computer's little engine exploded... sounds like my gfg. So it was about 2 weeks without any connection to the world. ( besides our small town paper!)
Anyway gfg's final summary report with the nuero-psych is in another week. But so far with all of the driving/testing long days... he feels pretty confident that she... ADHD, MDD (major depressive disorder) and SID. He is going to elaborate on any other issues he may feel she has next week, after he goes over all of the tests and his findings and studies of her with his colleagues... sigh. (isn't this enough?)
The only really cool part was we were able to catch a kind of meduim explosion with violence from start to finish on video, and we showed it to him and our other counselor and they both agreed it was awesome to see and helped really understand a lot!!! She didn't realize it was on, until the end!!!
The other funny part was to sit and watch my gfg go through all of the tests and to realise just how freaking antsy and fidgety she is! She was up on the table within 15 minutes of the first round of tests, shoes off, socks off in his face, lying all over the tests!!! He had to try really hard not to crack up, it was pretty cute and funy. She was spinning circles on her back legs in the air, I had to cover my mouth to not lose it!!! [img]/ubbthreads/images/graemlins/rofl.gif[/img]
Our wrap around counselor/psych agrees with the dx but she thinks the mdd is bipolar, which scare us. I would rather start with mdd, at least that is a little less severe?!?!!? I know these things can go haywire when puberty hits but we are hanging on to these young years and trying to get some help now so we can help her when that roller coaster ride starts (scary).
So who knows this has been SO tiring and we haven't even started treatment yet and we are paying SO much because of out of network and deductibles..etc and now I am having a hard time sleeping, especially when dh is out of town for work...

But, she loves pre-school! The Waldorf program she is in seems to be really good for her. Fingers crossed. She breaks down after school, but has kept it together so far at school and could care less about leaving me!!!

She loves her OT and the counselor/psych. We will not continue with the nuero-psych after the final eval is over. It ends up being a 7 hour day for one apt. And we have no sitter for her sister, so far we have scheduled those apts. when dh has been in town but he works out of town for a week or more at a time. The nuero-psych also wants her to see a Psychiatrist anyway for the depression, so we have to look into that...

So all in all we kind of new this was going to be the dx but it still hurts so bad to finally hear the words. I think it will hurt again next week when we go for the final treatment eval/dx apt. I always feel like I am going to fall apart...
I keep flashing back to my Mom's depression and her taking her life at 29 yo, and hearing my gfg has depression is so freaking scary! It rips my heart out. I know we can help her and we will do what is best, but what if none of it is enough??????
When she tells me she wants to die or aske me to kill her, I feel like we are living in a nightmare. How do I get her out? Safely?

I guess I can only do one day at a time kind of thing and I think of each of these processes like a chapter in a book, I have to finish this chapter to continue on to the next one or it will ruin the story, there is no jumping ahead. Even if I don't like the way the story is going. :thumb-down:

I just needed a big BOO-HOO for myself. I know you guy's have been through lot's of things like this- someone send a little hope. I feel so alone some days- the whole are you happy question??? I also just found out there are no support groups in my area, the counselor said she has a huge case load of kids, so if I wanted to start one!!! Maybe one day, sounds like a lot right now???

I am really trying not to be angry and bitter I just thought that I had left all of my garbage behind when I get rid of my screwed up family, seems like the genes have followed me...

Anyway so sorry, I am just feeling a little lost right now, my dh has been a rock but I don't want to put it all on him all of the time. I am SO greatful for this site.
I will find out what test everyone has given gfg, it has been a whirlwind, and post them, someone can tell me if they are BS or what. HA HA
Thanks for listening it is nice to be back-

I also learned the "hold" it has been very helpful, she actually feels better. Fisrt time it lasted over 30 minutes and she spit all over me and bruised the heck out of my sternum, but each time since she knows it is going to help her calm down and I think she appreciates it. One time she even asked me to hold her!!! [img]/ubbthreads/images/graemlins/9-07bravo.gif[/img]

[Dammit Janet]

Hey...I read your post and I dont often post over here because I dont have littlies but your post really got to me.

Please dont feel so sad. I think your generation of kids with these disorders have the best hope so far. And its getting better all the time! Even when my son was your gfg's age they didnt know what bipolar was in kids where I live and they sure didnt know what it was when I was a kid.

Back when I was growing up, you got depression and bipolar on your 18th birthday with your cake and ice cream. Somehow it knew when the birthday was because no one under 18 could be depressed or have bipolar. LOL.

So youre in a much better position now for getting better help and treatment. I have a lot of faith that in the next years that inroads will be made that may change even more how we are treated.

All is not lost.

[totoro]

Dammit Janet thank you.... I know and I just need to get over this hurdle. The begining of the long road ahead. It also makes me think alot about my own issues... I have lots of hope for my little hummingbird!!!

[Ltlredhen]

Try and look at this time as the beginning of your journey of getting help for your gfg. You recognize and acknowledge there is a problem and that is a big first step. Try and take things one day at a time and not look 5 or 10 years down the road. This is what helps me get by.

I am so glad that your gfg likes school. It sure makes it easier. My gfg is still having some transition problems after school but nothing like at the first of the school year. Hopefully things will ease up for you in that regard.

Let us know how the rest of the evaluation goes.

[img]/ubbthreads/images/graemlins/warrior.gif[/img]

Donna

[tiredmommy]

The most important thing to remember is that she is still the same child as before the diagnosis. The medical community is much better prepared today to help your daughter than they were to help your mother. I understand a little bit about gene pool resentment and guilt. I first came here because I thought Duckie may have early onset bipolar, like my mother. I was so angry! I had made it through my childhood relatively unscathed. It seemed unfair that my child be burdened by a genetic predisposition that I myself had beat! I was angry and I grieved that she was not "normal". When I was finished, I put my anger, grief and guilt away. I didn't have the energy to deal with those emotions and help my child at the same time. You will reach that point too. {{{Hugs}}}

[smallworld]

Totoro,

Once the neuropsych report is complete, it's also really important to locate and have your GFG evaluated by a board-certified child psychiatrist who has experience treating kids with both unipolar and bipolar depression. And I mean evaluated, not just accept the dx of the neuropsych. The fact of the matter is that at least 30 percent (and it may be higher) of children diagnosed with MDD actually go on to have bipolar disorder (we've been told this by the pdocs who treat my children and this information is also in The Bipolar Child by Demitri and Janice Papolos). There is also a syndrome called Severe Mood and Behavioral Dysregulation, which is being studied at NIMH by Dr. Ellen Leibenluft. Dr. Leibenluft believes children with SMD present with a combination of symptoms akin to an irritable ADHD. They are equally as impaired and trial as many meds as children with bipolar disorder. And they sometimes respond positively to the meds that treat bipolar disorder.

The reason it's so critical to get a best guestimate (and I say guestimate because it's really hard to pinpoint a dx on a young child, who in terms of growth and development is a moving target) on what's going on with your GFG is because meds that treat ADHD (stimulants) and meds that treat MDD (antidepressants) frequently make children with bipolar disorder much worse. This happened to both my GsFG. My daughter was dxed with MDD at age 10 and took the SSRI Paxil. She completely flipped out on Paxil and now is improving on mood stabilizers, the meds that treat bipolar disorder. My son was dxed with ADHD and anxiety. He had many bad reactions to both stimulants and SSRIs and also is doing better on mood stabilizers.

I'm really not trying to cast doubt on any dxes the neuropsych is giving your GFG. I'm just trying to share our experiences in the hopes that it will open your mind to all the options out there.

Best of luck to you.

[totoro]

Tiredmommy I do have hope that I will "let it all go" but I wonder where do you get the energy??? Where do any of us get the energy to constantly do this???
I am not saying I want to give up or I am done but some days I feel so tired after 5 years of this and we haven't even started treatment yet. How do I get motivated to try new things when that is all we have been doing for the past 3 years???
Does it just keep coming from within??? It scares me to think how tired we feel already and it is just the begining.
I know I need a break it has been months since I have gone out with a friend or my husband without the kids. This is just so consuming right now, I guess we find out how strong we can be??? One more hurdle.
Thank you for sharing

[tiredmommy]

You need to make time to care for you. Your daughter needs at your best to offer her the best guidance possible. How does a warrior parent do it? They don't have a choice. You come to the realization that life gave your child a bushel of lemons. You learn to make lemonade because wallowing in the pain of having a gfg cannot be an option any longer.
You need to read and educate yourself to be your child's advocate. Start figuring out what works and doesn't work. Only talk to supportive people and take "helpful" friends and family in small doses only. Being a parent to a gfg is more of a marathon than a sprint, you need to pace yourself.

[Dammit Janet]

You also learn to start dealing with the daily grind of gfgdom as kinda a normal thing. Right now you are in the "oh my goodness, there is an elephant in the living room" phase! The elephant seems enormous and you cant imagine how anyone can tell you to get it out of the house. Well you deal with that elephant and remove him piece by piece. I think the story is you eat the elephant spoonful by spoonful but I cant remember why anyones eating an elephant...lol.

Try to find people who can handle sitting for your child. Be it a friend, family member, other sitter...someone. Make a date nite out with DH at least once a month and dont talk about kids. Take a bubble bath while the kids are asleep or away. Read a good book. Eat ice cream. Play outside with the kids. Be silly...blow bubbles. All this will help you get thru the trying times.

Hugs.

[SRL]

Good for you, Warrior Mom. You've accomplished a great deal in a short amount of time!

Unless the dx is so obvious that it's slapping you in the face (and I would guess the kid on the table spinning circles with their legs in the air = ADHD/sensory seeking is a pretty good example of that) it's a good idea to take these diagnoses when a child is young and consider them to be "working diagnoses". That is, you take them home, live with them awhile, do some research and rub shoulders with parents of kids with the same dx's and see if they do truly fit. Sometimes the diagnosticians get it right the first time, sometimes they are in the neighborhood and the dx's need a little tweaking, and sometimes dx's can be dropped if the child responds well to appropriate interventions. There's no predicting that for sure now but by getting a very thorough multidisciplinary evaluation you stand a better chance of getting closer to the mark.

My mother had bipolar (suicidal) and my father had schizophrenic tendencies and I can't tell you how that haunted me through my young adult years and in the earlier years of my parenting. It's been a great surprise to me and my sibling that neither of us struggles with issues along those lines and none of the grandchildren so far seem to either thus far. My gfg's disorder tends to be closely associated with some of the issues from the other side of the family. Genetics are important but they aren't everything so don't let the family history paralyze you or set up a silent expectation for your daughter. Certainly don't ignore the family history but don't bank on it either! The one difference between my upbringing and my children's is that they have a stable homelife and parents with the time, resources and committment to do their darndest to help them overcome. The sooner you can channel your energies away from anger and bitterness (we all go through it!) into something positive, the better off you and your child will be.

I agree with TM about the bushel of lemons: if there's one thing in life that has taught me life isn't fair and to not sit around expecting that it's been my gfg. I think what struck me the hardest when he was younger wasn't how much trouble he was causing us but how hard it was to live in his shoes. As a little boy he was such a paradox--the happiest, most good natured of my children whose mood would turn on a dime to be incredibly angry and difficult. It made me so sad because I just know that this disorder robbed him from being a good natured, easy going kid. I have grieved for him in the past and no doubt I will grieve for him again in the future, but it's important to not let that be the wallowing kind of grief or else you get stuck in the muck.

Time to myself is critical to maintain. When the kids were young I got out at least once every weekend when my husband was home to watch the kids--usually once that would be with a friend to the coffee shop. I always had a project going on to keep my mind engaged elsewhere (church, writing, hobby, etc). I did my best to get enough sleep otherwise I didn't have the resources to cope well. Some moms seek relief through exercise and honestly a good number of our moms have sought out counseling and/medications to help.

I think you will find a big difference in results when you are pouring in tons of energy into a child without knowing what issues they have vs. having a good grasp on their issues. I just think back to my son's sensory issues alone and how much time and energy it took me to deal with those meltdowns, administer consequences, follow through, and recover only to be back to the same spot a week later because none of those things I was doing could have ever helped him. That same amount of time and energy spent taking a kid to therapy and shopping for the right equipment to have a variety of sensory input at home was time well spent however.

Hang in there. Things are going to get a lot better.