need sympathy

Discussion in 'General Parenting' started by crenee, Aug 2, 2009.

  1. crenee

    crenee Guest

    Hi, folks.

    I'm looking for sympathy. I remember from when I used to use this forum a lot that you guys are wonderful about giving advice, and I welcome any, but I don't think there's a lot of help for my situation at the moment, so I'm mostly looking for a chance to vent to sympathetic ears.

    Quick bio:
    Me: quirky but "normal", usually upbeat.
    husband: Obsessive Compulsive Disorder (OCD), has problems with rage (directed against himself), has yet to find the perfect medication, although has had some success with his current cocktail.
    difficult child: C, 91/2: offical diagnosis, ADHD-not otherwise specified, although has no ADHD symptoms. Rather, has characteristics of Aspergers, bipolar, Sensory Integration Disorder (SID), and ODD, but not enough of any of the above to receive that diagnosis. Under the care of a child psychiatrist, takes Guanfacine and risperdal, which are helpful, but his behavior has cyclical ups and downs nonetheless. Homeschooled because he doesn't do well in group situations, very intelligent.
    easy child: B, almost 6. Adorable, funny, genius. Boys get along great most of the time, very close.

    Background--hubby laid off from job in April; our health insurance went with him. Now we're living on his unemployment and my parttime job (varies, between 15 and 30 hours a week.) When husband was first laid off, things were very, very good. husband didn't really like old job and was convinced that he'd be able to get another quickly. He was doing very well on his medications, and us all being together was nicer than it's EVER been since we had C. He was very interactive with the boys, very consistent, full of fun new ideas, and very helpful around the house. Took over most of the chores and homeschooling activities. What I didn't know was that after a month he stopped taking his medications because he ran out and without health insurance we simply couldn't afford them. I found out when he started having almost nonstop rages all day (and most of the night), and forced him to talk to his nurse-practitioner, who arranged for him to get his medications at an affordable price through their clinic. So he went back on them.

    Unfortunately, his medications have a VERY steep adjusting curve, and after going back on them (he started at full dose, which he needs to control his symptoms, but which is bad for his body, which really needs to build up tolerance gradually) he started sleeping 14-16 hours a day. And when he is awake, he's groggy and lethargic, and completely stopped being consistent with boys or even doing much with them at all, except letting them sit with him while he plays computer games. When I'm at work, he lets the boys watch lots of TV and play lots of computer games, both of which are usually very limited at our house, as I think C reacts badly to too much screen time.

    The he abruptly stopped sleeping at all, and started taking Ambien, which works, but makes him sleep lots of hours beside just at night, so things haven't improved much.

    Now to my dear difficult child, C. We've been buying 3 month supplies of C's medications, so we didn't run out for a while. When we finally did, we discovered that Guanafacine is dirt cheap, but Risperdal (or the generic, which is what he takes) costs $360 a month. We simply can't afford it. We talked to his DR., who gave us permission to cut the dose in half, which we can cover, but barely (he doesn't go to the clinic where husband gets his expensive medications cheap--and I've looked into a couple of programs, only to discover that we don't qualify for anything that can give us substanial cost savings.)

    So this is what we have: The most present parent sleeping all the time, being inconsistent when awake, feeding the boys junk because he can't bring himself to cook healthy, nutritious meals (although when I worked all day last Saturday, C took the initiative to make French toast for himself and his brother--and let B crack the eggs! because it was lunchtime and Dad was asleep.) I'm doing my best, but I'm working crazy hours just now, and tend not to be home much of the day some weeks. And when I am home, I've got to handle ALL the household work (not something I've ever had to do even when husband is employed full time--he's usually very good about helping out), gorcery shoopping, bill paying etc. I just can't be as present for the boys as I need to be. And C is is on a half dose of the medicine that I think does him the most good. And he's suffering.

    He's been going downhill now for about a month, but in the last 48 hours his behavior has really tanked. He was really psychotic today, violent and raging, SERIOUS megalomania, broke part of his bunk bed, tried to punch through a window (he doesn't realize it's plexiglass), etc. He's basicly acting the way he acted for the 6 months before we first took him to a doctor when he was 7. We've seen bits of this off oand on since he's been on the doseages of medication that he needs to be on, but it's been a very long time sonce we've had a day like today. husband has just retreated in despair, saying things like "I wish we'd never ever had kids" (to me, not to difficult child, thank goodness), which is NOT like him at all--he adores his children and is better with them than I am, when he's on top of his game..., so he's no earthly help (he's having a few mini rages again, despite the medication--C has always had the ability to do that to him...)

    C was supposed to start swim lessons tomorrow, which he's looked forward to all summer becuase we've been to poor to take him to the pool (swim lessons are free at our local public pool) and he loves swimming and is very good at it. But I don't see how we can possibly take him when he can't keep himself under control. I THINK he'd actually be alright as long as he was in the water, if he had a fairly lenient teacher willing to just more or less let him do his own thing, but there's a good chance there's be trouble as soon as he got out and before we could get him in the car to get home. Or before husband could get him in the car, I should say, because I'm about to work 3 eight hour days in a row. So B will go off to swim lessons and C won't be able to. And he's going to be absolutely devastated.

    I feel so bad for him, but I don't see what else can possibly be done right now, and that's why I'm looking for sympathy.


  2. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I'm so terribly sorry for all your pain and hard times right now. It is very difficult in this economy, but there COULD be help. Contact the drug companies. Yes, I'm serious. Often, they will find a way to help you purchase the medications that you need for everyone. Please--at least give that a try
  3. susiestar

    susiestar Roll With It

    I am sorry things are so tough. It really is hard to handle things in your position. I did find some avenues that might be helpful.

    If you go to it will take you to the Partnership for Prescription Assistance, a program designed to help people iwth the costs of medical care, specifiically prescription medication costs. Montel Williams is hte spokesperson for the group.

    When you go to the website, click on Prescription Assistance Programs. It will take you to a screen that will let you search for help based on various things, such as drug name. I put in risperdal and it came up with several programs.

    You also may want to consider a different atypical antipsychotic medication. Other medications of this type may work and may have even more options for help. Typically the help offered declines when the medication goes into generic availability.

    Sending lots of sympathy!
  4. Wiped Out

    Wiped Out Well-Known Member Staff Member

    I'm sorry things are so hard right now. This economy stinks and it makes me angry when people can't get the prescriptions they need. It just isn't right. There should be something in place so people can get their medications.
    Sending many hugs and much sympathy and prayers your way.
  5. nvts

    nvts Active Member

    Got 1 word for you: MEDICAID!!!

    There are Family Health Plus programs in every state. Trust me...I ended up doing this for my family when I was laid-off and husband lost his job. It's ok that you own your home, etc. it's strictly by your CURRENT income.

    It will cover all your medications, etc. and it's free. GO GO GO now!!!

    Let me know if I can help!

  6. FlipFlops

    FlipFlops Guest

    I don't have any great solutions to offer you but instead just my sympathy you asked for. I really wish your circumstances were different. I can't even imagine how hard it must be for you. Try to hang in there as best you can.
  7. FlipFlops

    FlipFlops Guest

    I just posted with nothing to offer you, but I thought of some links that should at least crack a smile for you. Sometimes on my worst days I like to surf youtube and look at completely silly stuff and ran across these. Make sure your volume is on. ;)
    [ame=""]YouTube - Singing Kitty[/ame]

    [ame=""]YouTube - The Farting Cat[/ame]
  8. Star*

    Star* call 911

    After reading your post I don't know if I want to send you sympathy or a plane ticket. WOW.

    The website that Susie has sent you to will help. ALSO --ALMOST any of the drug companies that you have prescriptions for have patient assistance hotlines and their applications, fill out what you can and take it to your doctor. They will send it in - you will have to provide some paperwork for each - but its worth it.

    If you don't qualify because you made too much - then go to NVTS's idea and get MEDICAID. Then start googling ALL the local area places that offer assistance for help, clothes, foodbanks, utilities.

    Check into LIHEAP - it will pay one electric bill in the winter or summer -

    This will be your last sympathy party:( - we are women who will empower you - and hug you - SO GET BUSY SISTER!!!! ;) If you have lived through what you posted then you are a warrior woman - and you can do eeeeeeetttttttttttttttt!!!!!!

  9. Star*

    Star* call 911

    As far as the swim classes?????? TAKE HIM ANYWAY - MAYBE if you explained all the stress IN YOUR HOME - they would have SYMPATHY for HIM and understand?????? JUST A THOUGHT.....beg them to work with him??

    Gosh I would = He could be the next Phelps....ya never know.

    Just keep him outta Columbia, SC. :tongue:
  10. susiestar

    susiestar Roll With It

    The website I gave you has many of the drug companies plans and other plans too. But if you don't see the drug co or drug name, then go to the website for the medicine and ask about the assistance programs.

    I even found one that may help ME with our copays (I cannot work and have huge pharmacy and doctor bills each month but because husband's income I can't get many of the assistance programs.)

    The state insurance plans for the kids are AWESOME! I would not ever have been able to get my son into a psychiatric hospital for his 4 month stay with-o that insurance. Our psychiatrist didn't even know the hospital had a program for kids his age! They are in different parts of the state, but still. And the medicaid paid every single penny. If he had been there another month he would have gotten a clothing stipend from them too. Our pediatricians really push parents to sign up because it means all medications will be paid 100%, and it means parents don't have to juggle to pay for the medications or for the heat or phone or food. They will pay for the resperidol and everything else. We actually got 3 portable nebulizers for my youngest. They put him on a program that sent new tubing every other month (2 sets each shipment) and sent a new machine every year.

    Just thought I would throw that in there.