White Knuckling It..

Discussion in 'General Parenting' started by Catwmn, Dec 3, 2007.

  1. Catwmn

    Catwmn New Member

    Things in our household have gone to C*&P over the past week.

    I have been without internet due to a satellite issue so I've been checking email and doing minimal internet reading on my treo. Don't get me wrong...I'm THANKFUL for my treo but it's VERY hard to do message boards on, and practically useless for any type of internet research type stuff. Today the internet is working again sporadically so we'll see how long this lasts.

    Aaron's condition continues to deteriorate at a heartbreaking pace.

    He is now having MANY different types of seizures MANY times a day, and at night.

    His behavior is completely out of control, and I have had MANY emotional breakdowns this past weekend due to the highly stressful environment I find myself in now.

    I have called his Neurologist and his new Epileptologist and Neurosurgeon, AND Psychiatrist and NOBODY will help us. The Neurologist says this regression and behavior is "common" in a child with severe epilepsy and Autism Spectrum Disorder and it is basically something "I am going to have to learn how to deal with"..She seems to feel like as long as he is no longer having STATUS EPILEPTICUS episodes and ending up in the hospital that we have his seizures under "control"( his Epileptologist/Neurosurgeon also agrees with the Neurologist) but I SERIOUSLY beg to differ on that. .

    This of course has left me with one option. Putting him back in school. I haven't done it yet....but I have written a 4 page letter to the head of the Special Education Department requesting new testing for him and a new placement OUTSIDE of the general education classroom.(This letter is posted in the Special Education 101 forum and I would appreciate it if you could read it and let me know what you think.) We have a meeting on Wednesday morning to discuss options.

    This of course leaves me feeling like a horrible failure as a mother. I had such high hopes of homeschooling Aaron, but his behavior and aggression are so off the charts that he is a danger to me, as well as himself. (This child actually BIT me yesterday and drew blood!!) Saturday he got away from me in a parking lot and almost got hit by a car!!

    His Psychiatrist DID say that we could admit him to a residential treatment facility but just the thought of doing that makes me ill. Surely we haven't reached the point of institutionalizing him yet?? The psychiatric switched him from Risperdal to Seroquel, which is an atypical antipsychotic and he is on a pretty high dose, but it so far has had NO effect on him. So the Residential center is starting to look like where we will end up in the end.. Since we are on Medicaid this means he will go to a STATE Residential Treatment Center (RTC) (Which is in Dallas which is close to 300 miles from here) which is what makes me NOT want to do it. Those places are AWFUL. I would seriously rather handle this myself than ever put him in a place like that. How could I cope with my child being institutionalized 300 miles away from me???

    My hubby is basically useless to me for support lately....

    He is now making constant excuses to NOT be home so he just doesn't have to handle any of this...which leaves me here alone with 3 kids dealing with all of this by myself...which is completely unfair to me, and to the kids....

    When he is here he refuses to help me with Aaron and spends most of the time in the bedroom watching TV. Seriously...it's really pissing me off. But when I talk to him about it his excuse is..."but you handle all of this so much better than me.."

    Well of course I do...I don't have a choice!!

    This whole situation is seriously screwing up everything....it's ruining my marriage, and most of my friends are afraid to even come over because of the way Aaron has become...it has left me feeling very lonely and lost.

    I feel like I am living in a nightmare....white knuckling it through every day....looking forward to bedtime as soon as the kid wakes up....

    This isn't what I signed up for....not at all..

    So there it is....in a nutshell....
    Just really needed to vent..
  2. SearchingForRainbows

    SearchingForRainbows Active Member


    I'm so sorry!!! I really understand how you feel. Raising difficult children is the most difficult thing I've ever had to do. Nothing I've ever experienced compares to the pain, anger, sadness, loneliness, etc. that comes with raising difficult children.

    The one bit of advice that comes to mind right away is to get your husband on the same page with you. My husband and I learned the hard way that we have to parent as a team. Unless you and husband stick together, are consistent in setting limits, etc., you run the risk of having your difficult children use both of you to their full advantage.

    in my humble opinion, things will keep getting worse until you and your husband act as a unified front. If at all possible, find someone to take care of your difficult children and you and husband go out for dinner, coffee, etc. to talk. If you can't find anyone to watch them, try to talk when they are asleep. Don't let the stress and strain of raising difficult children ruin your marriage. The more time that goes by with you and husband angry at each other, upset with the situation, etc., the harder it will be for you to become close again.

    And, YOU ARE NOT A FAILURE AS A MOTHER!!! From what you've written here, you're an excellent:warrior:mom!!! You are trying to do everything you can to help your son.

    Unfortunately, I just looked at the time and I have to go. I know others will be along soon with more advice for you.

    Sending lots of hugs, WFEN
  3. Hound dog

    Hound dog Nana's are Beautiful

    I am so very sorry things are so tough on your right now.


    Are the docs working together on his medications? (I'm wondering if his seizure medications might not be working well with other medications and vice versa)

    As for husband, when you find you need a break and husband is there, leave difficult child with husband and go take a nice long walk. I used to do this with mine and they both managed to survive. lol And the break, even a short one, will do you good. Those walks helped me make it thru some pretty tough times.

    Many warm (((hugs)))
  4. nvts

    nvts Active Member

    I'm no doctor, but you said in your letter on the Spec. Ed forum that Aaron has a possible mass on his frontal lobe. Again: not a doctor., but isn't that where all of the behaviorable stuff is?

    in my humble opinion, if Aaron is a danger to himself or others, take him to the ER and let him bounce off the walls there. You'll get a better, quicker chance at a different neuro, new MRI's and a diff. psychiatrist looking at his case. I've never had to do this, but many on the board have when they're violent and have been able to get immediate help.

    Tell husband to knock it off, stop arm chair quarterbacking and get in the game. I went through the same cr@p with mine and it was making the situation worse. The kids were acting up more so that he'd at least give them negative attention.

    Big hugs from here!

  5. TerryJ2

    TerryJ2 Well-Known Member

    Gosh, what a mess.
    So sorry.
    I would sit down with-husband, calmly, and tell him he has no choice. He cannot sit and watch TV while you have a meltdown. He can watch TV for 1/2 hr a day, to relax, and then do chores or whatever else he is expected to do, just like any other member of the household. If you tell him he can't watch TV at all it will be too antagonistic, and besides, he does need to chill, just as every one does.
    Instead of saying something vague, like, "You've got to help me," be specific, and say, "I will be going to the store (for a walk, whatever) from 7-8:30 on Tues. and you will be here to take care of the kids. I really appreciate your help, honey."
    Give him a kiss on the cheek or pat him on the shoulder (it helps to "cement a contract" of sorts if you have physical contact--it will get his attention, too, since he's ADD) and make sure you make statements rather than asking questions.
    I've learned THAT the hard way! :smile:
    I do not think that putting your difficult child in school means you are a failure. It simply means that you are outsourcing, using resources wisely.
    Just reframe your thinking, and it will be a huge load off of your shoulders.
    As for the medications, I can't help you there ... it sounds like the docs have a completely diff mindset than you do. Does your difficult child zone out after ea episode? What do you do afterward?

  6. Josie

    Josie Active Member

    Seroquel and probably Risperdal increase the risk of seizures in people. Have his seizures increased while on these medications? Either way, I would question the doctors about this. I'm obviously not a doctor but it doesn't seem like a good choice for your son.

    My daughter is taking Seroquel and at one point, she was having crying spells. She had just started taking the Seroquel and the doctor thought it could be related to that. Seroquel even comes with the a/d warning now about how it can cause suicide and extreme changes in behaviour.

    Another thing you could try, in addition to trying to get help from doctors, is the girlfriend/CF diet. From what I read, it does help some children with autism. My own children are not autistic but one of them was diagnosis'ed ODD and one of them looked like she had ADHD until they went on the diet. Gluten intolerance/celiac disease is linked to seizures and schizophrenia in studies and there are many stories on the internet about it improving behaviour. In the studies, some schizophrenics symptoms are decreased or eliminated when put on the gluten free diet. From what I've read, some people's seizures go away on the diet but some people's don't.

    Have you found a support forum for people with epilepsy? You could find out there more about what is expected with seizures. I wouldn't find it acceptable to have multiple seizures but maybe that is part of it. My nephew was recently diagnosis'ed with seizures and has had quite a few while they wait for the medications to work.
  7. slsh

    slsh member since 1999

    Oh my gosh - I'm so sorry your family is going through this.

    When my son started having seizures, it took me 3 tries to find a neuro who would aggressively address it. I kid you not, I got virtually the *identical* garbage from the first 2 neuros: "Oh, your son has CP, of course he's going to have seizures, learn to live with it."

    Uh, no. Absolutely not. It's almost like they think a lesser quality of life is ok because there's some other diagnosis in there (CP for Boo, Autism Spectrum Disorders (ASD) for your kiddo). Where do they get off? And how many seizures a day/week/month would be acceptable for *their* kid, especially when there might possibly be a medication combination that would control them?

    I would strongly strongly *strongly* recommend that you find another neuro. I know that some seizures are very hard to control, but if I'm reading your son's medications right, he's only on 1 anti-seizure medication. That's just a half-hearted effort in my humble opinion.

    It took firing 2 neuros, finding our current guy, and a stepwise progression of increasing doses and adding new medications, but Boo's been (knock on wood) seizure free for almost 4 years. He's been on a 3-medication combo for over 5 years. While he wasn't seizing as frequently as your son is, he did have status seizures and we never were able to handle them at home. For a while there, I knew all the local ER docs, village EMTs, and police officers by first name.

    I really think that if you can find a doctor who is willing to work harder on seizure control, it would loosen up those white knuckles for you. We were blessed that Boo never has had behavior problems, but the seizures alone kept me in a state of terror for probably a solid 4 years. husband really didn't understand because he was *always* at work, though he would come and pick up the other kids while I stayed with- Boo. But I don't think he ever understood the stomach dropping fear... to this day, my stomach still lurches every time Boo's school calls even though he's been stable for so long.

    Anyway - a gentle hug to you. You are *not* a failure, not by any stretch of the imagination.
  8. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Please don't think you are a failure. Nothing could be further from the truth. I hope you can find a neuro. that will be more in sync with difficult child's needs. Sending prayers and hugs your way.
  9. Steely

    Steely Active Member

    I am SO sorry.....I know it must be incredibly hard! I would also be beside myself!
    PM me if you want to meet up, we are actually pretty close in distance, and I know the ropes of the mental health system in this area pretty well.

    Again, so sorry, and keep fighting the good fight.
  10. BestICan

    BestICan This community rocks.

    Oh, NO WAY. Unacceptable. I'm so angry for you.

    I'm so glad others are advising you to get some other opinions, because I really think your docs can do better.

    If the seizures are uncontrolled, and the seizures are influencing behavior (and oh do I know that one!) then somebody needs to try harder to get those seizures under control. Simple as that.

    Have you tried the forums at http://www.epilepsy.com/forum ?

    Nothing beats the wonderfully supportive and knowledgeable group here. But at epilepsy.com, there are a few forums that might apply to your problem too, including "diagnostic dilemmas" and "medication issues". I hope you get some answers.