Waiting & trying to survive (his RAGE) Anyone with Fetal Alcohol Effects (FAE) experience? (not sure that's it)

Discussion in 'General Parenting' started by Weary for Hope, Aug 7, 2011.

  1. I haven't been on here for a while, but reading through your posts reminds me how much everyone is going through. You people give me courage. Thank you for supporting one another and the advice given!

    It's hard to know what to say. My son was finally fully evaluated by the school but we are waiting for the psychiatric results (2 more weeks, we heard). It's taking forever.
    He has huge rages...I had a crises on my visit to California with him and had to take him into emergency....he freaked out when he didn't get frozen yogurt, was screaming, climbing over the seats and choking himself, chanting in a childlike way, "frozen yogurt...frozen yogurt" (Had another 1-2 horrible crises earlier in the trip as well)

    Sometimes he says he doesn't want to live. It must be awful to be him. I just want him well and whole.

    Today I had to call 911 - 4 cops came and he had to go to emergency (psychiatric) with my husband in an ambulance (this was a first). difficult child threw over our glass top coffee table and it completely shattered. It's hard waiting for answers when your son is so unpredictable and incapable of handling upsetting emotions that you feel unsafe when he starts to whine.

    I think there are anxiety/depression issues. But there is prenatal drug use (and possibly alcohol, we are finally figuring out). We knew there was heavy cocaine use.... but now possibly heroin and alcohol. I think Fetal Alcohol Effects (FAE), not Fetal Alcohol Syndrome (FAS) (no physical characteristics).

    Anyone with knowledge of Fetal Alcohol Effects (FAE)/Fetal Alcohol Syndrome (FAS) - and how to recognize it (Fetal Alcohol Effects (FAE) in particular)?
    Once we get some answers, I'll post and let you know.
    Just needed to get this out in the meantime and receive any advice/help you can give.
    It's so exhausting, as you know. How do you love your kid when it feels like they've destroyed your life? My only answer is that it has to come from God...I am empty. difficult child not constantly horrific, but it's getting worse and worse and more and more frequent. When he's good - he is just great. But these bad episodes are taking over our lives. We are desperate and waiting.

    Thanks for listening.


    Me and husband - 40, trying to survive
    1 adopted son (at 3), almost 11
    rage, defiant - HELP!
     
  2. TeDo

    TeDo Guest

    I am so sorry you are going through all this. I don't remember the whole scenario from previous posts so forgive me for asking questions. Is it neuropsychologist results you are waiting for? If it was a regular Child Psychiatrist, you should have walked out of the office with at least a preliminary diagnosis. Has your son ever been seen by anyone else? Is he currently on any medications? Has he ever been diagnosis with anything before?

    You are doing the right thing by calling 911 or taking him to the ER. You are creating a paper trail for services, hopefully. What do they do once he gets there? Have you ever asked that they admit him? It might do you all some good. He can start getting SOME help and you can get a break. Are you seeing a therapist yourself? If not, you really should. A person can only handle so much and you have your plate full. Make sure you take care of you.

    I don't know anything about Fetal Alcohol Effects (FAE)/FES so I'm sorry I can't help you there.

    {{{{(((HUGS)))}}}} to you all. Stick around longer and you will find lots of support and experience. I am very serious when I say there really isn't ANYTHING that someone here hasn't had to deal with. More {{{{(((HUGS)))}}}}

    :hugs::Grouphug::group-hug:
     
  3. HaoZi

    HaoZi Guest

    I'm sorry to hear there's no improvement. I have no experience with Fetal Alcohol Effects (FAE) or Fetal Alcohol Syndrome (FAS), but I know what you mean about having that instant involuntary cringe as soon as you hear a certain tone of voice, frustrated noise, etc. It does wear you down and it doesn't take long. Sometimes it helps to remember that it's a disability. Not always, some days it doesn't help at all, I know. Sometimes the best part of the day is watching them sleep, reminding you why you love them (and enjoying the quiet).
     
  4. InsaneCdn

    InsaneCdn Well-Known Member

    {{ hugs }}

    No experience with Fetal Alcohol Effects (FAE) or pre-natal drug use - and those could easily be factors...

    BUT - experience with pre-teen/teen boy depression... could also be major factor...

    Depression can be primary - and cause all sorts of issues.
    OR, depression can be secondary - too many other unmet needs for too long, plus education issues and/or bullying... and the result can be depression on top of it all.
    Tough thing with male depression (and especially young male) is that it doesn't necessarily present the way we "expect"... rage, violence, and other extreme behavior can be signs of severe depression.
    And then... add in... at his age, hormones may be kicking in as well and complicating things.
    Plus... its almost time for school to start again - and if school is as negative an experience as it is for many difficult children then this looming over his head is enough to send both anxiety and depression soaring.

    Two more weeks for results?!
    I can understand "two more weeks" for a full, formal, printed report - but if there are major flags showing up on that report that need intervention, surely they could start without the formal report? (they "can" here in Canada, but that doesn't mean they "will") - we got a "verbal" report that told us which referrals to ask the family doctor for, while we were waiting for the report.

    psychiatric hospital sequence is always tough (we haven't had to go there ... yet). Hopefully THEY can come up with something to add to the picture too.

    {{ hugs }}
     
  5. Tedo, - school hired basic psychiatrist. once we get his stuff - we will need to get our own psychiatrist...we can't use the school one. School hired psychi can't prescribe medications. But in emergency in Ca, I was given ativan for my son. Today my husband heard that ativan isn't recommended for kids. I don't know! We have never had drugs for him before - don't know anything about them. So, I've used the ativan for a few emergencies, but geez, but him to take it is another issue in itself. (finally began hiding in icecream sandwich) but he refused it today. He has only received some play therapy and been seen by school psychologist. What do you recommend? (as far as extra evaluations/where to turn besides psychiatrist) They are putting an iep in place - I am grateful. He starts middle school 9/1 and puberty is around the corner. (he just got his first zit)

    I am so sorry you are going through all this. I don't remember the whole scenario from previous posts so forgive me for asking questions. Is it neuropsychologist results you are waiting for? If it was a regular Child Psychiatrist, you should have walked out of the office with at least a preliminary diagnosis. Has your son ever been seen by anyone else? Is he currently on any medications? Has he ever been diagnosis with anything before?
     
  6. 2 more weeks! We were in Ontario (Canada) temporarily - not long enough to get health care (though my son and husband are Cdn) fall of 2009. We had to wait to get health care here....been trying to wait on school because of finances...but we've been waiting forEVER! We are getting ideas of resources though. I just wish it weren't so darn slow. Yeah - school is TOUGH. And he was bullied when we lived in one location. Here, his best friend become is arch enemy (bad influence).

    Thanks for your responses.
     
  7. keista

    keista New Member

    :consoling: So sorry you're going through this. Hopefully he'll get a preliminary diagnosis at the hospital and maybe even some medication. Your sig doesn't indicate any medications. Tough to medicate when there is no diagnosis (thank goodness you've gotten through some evaluations at least), but when a person is going through THAT MUCH turmoil, in my opinion medication is not an option, it's a MUST.

    Yes, I'm aware that there are conditions that there is no medication for (Fetal Alcohol Effects (FAE)/Fetal Alcohol Syndrome (FAS)) but there is a good likelihood that there's more to the picture than just one diagnosis. AND just like the ativan, most medications are not approved for kids. That does not mean that they are not successfully used in kids. When I first started medicating, and we were 0 for 2 on the FDA approved medications, my biggest concern was that insurance wouldn't cover the psychiatrist's next choice. It was, without a hitch.

    Keeping you all in my thoughts and prayers.
     
  8. TeDo

    TeDo Guest

    You don't need to wait for their diagnostic stuff to make an appointment with a Child Psychiatrist. Find one NOW and just tell them about whatever the school hired done and that the report is coming then go on to tell them about the rages: what causes them, how he acts, how many times he's been to an ER, etc. I don't know how much stock I'd put into a school-hired psychiatrist (unless they're a neuropsychologist). I've never heard of a school paying for a psychiatrist and no, you wouldn't be able to use them as a personal psychiatrist and they shouldn't be prescribing medications for him. Who prescribed the Ativan? I haven't heard anything about it for kids one way or the other. What I believe about any medication depends on who I hear it from and their experience (personal OR professional). It doesn't sound like therapy of any kind is going to work with him quite yet.

    Find a Child Psychiatrist NOW. This has gone on long enough. If his rages are as bad as they sound, ask the ER to admit him or refer you to somewhere that they can. You can't continue the way you are. It's time to become Warrior Mom.
     
  9. InsaneCdn

    InsaneCdn Well-Known Member

    Not all the details are clear... across two threads, as well.
    But it sounds like the rage has been escalating - not static since you got him.

    Was there a particular time when you saw a turning point? where the frequency and intensity started to really ramp up?
    You might not know the details behind it, but if there was a "turning point", there may be one or more "events" at that point in his life that were enough to put him "over the edge". You may not even be aware of the events... it may be things at school and/or with peers out of school and/or other people. Or it could be the accumulation of moves etc. that were the "last straw".
    If there IS a turning point, document as much as you know about what went on in his life for the year before that, if you can. It will be useful to the psychiatrist and others.
     
  10. HaoZi

    HaoZi Guest

    Ativan can be addictive, that might be why they hesitate to give it. I've been on it for panic attacks. Someone here once suggested half a Chlor-tab (Walmart brand is fine) as a PRN to help calm, and we've had some luck with that (for both of us!). For whatever reason certain antihistamines can be useful for more than just allergies.
     
  11. BeachPeace

    BeachPeace Guest

    Yes -
    I live this daily.
    My son Blue has brain damage / Fetal Alcohol Effects (FAE) - was methamphetamine exposed as well as alcohol. He has no physical features of "classic Fetal Alcohol Syndrome (FAS)" which is common in kids who were drug exposed.
    My recommendation is to also see a Neurologist - Fetal Alcohol Effects (FAE) is not a psychiatric disease - it is a neurological development disorder.
    There is no "cure", but behavior can be managed and medications may be used. It is also common for kids with Fetal Alcohol Effects (FAE), Fetal Alcohol Syndrome (FAS), and ARND to also have seizure disorders - we were not aware of our son's seizure disorder until he had an EEG.
    My son is adopted as well.
    Clonidine has been the recent addition for the rages and it seems to be working very well.
     
  12. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I adopted two children who were alcohol/drug exposed in utero. One had so many issues, he couldn't live with us. He also had attachment problems and sexual issues and was dangerous.

    My other son was obviously damaged by the pre-natal drug/alcohol use. There is almost no way not to have a lot of problems related to that so whatever may be the norm for teens etc. is going to be worse for him. If he has brain damage due to alcohol (this is the case with both Fetal Alcohol Effects (FAE) and Fetal Alcohol Syndrome (FAS)), he will need close supervision all his life and also good people surrouninding him to help him make good decisions and not get into trouble. Fetal Alcohol Effects (FAE)/Fetal Alcohol Syndrome (FAS) kids usually can't learn from their mistakes. My son was lucky...he got off with only autistic spectrum disorder and learning disabilities in spite of having crack in his system at birth (and we know if birthmother said "yes" to crack, she didn't say "no" to alcohol). I have read that alcohol is actually the worse poison of all for an unborn baby. medications never helped much. He does better medications free and, considering his early start in life, he is doing very well.

    Do not blame yourself. Do not blame professionals who may not understand the cruel affects of alcohol/drug exposure in utero and may just try to pass it off as something like ADHD. I suggest seeing a neuropsychologist who will be able to see all of your child's strengths and deficits (that were caused by the drug ingestion). Then I'd see a psychiatrist after that, but only one who is familiar with alcohol affects/drug affects...and how these kids usually behave as t hey grow (although they are all different, there are similarities). Maybe get in touch with an Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE) group in your area to compare notes on how best to parent your child....or even just an adoptive parent group can be very helpful. Most of them have seen it all/tried it all...and have good advice and a shoulder to cry on.

    Good luck with on journey and please keep us posted.

    https://www.cnsproductions.com/pdf/Young.pdf
     
  13. pepperidge

    pepperidge New Member

    Hmm, sounds kind of familiar, unfortunately. I do have experience with Fetal Alcohol Effects (FAE).

    Two things: to the extent that it is Fetal Alcohol Effects (FAE) or mental illness (the two can coexist), he is most likely doing the best he can. When you think of him try mentally revising his developmental age to about 1/2 of what he is. Also realize that consequences are probably not going to get you anywhere at all at this stage until he is in a better place. Think change the environment so he is successful. Do a web search and go the come on over to Fetal Alcohol Syndrome (FAS) site (if you can't find it I will search for it). Read Diane Malbin, an expert on Fetal Alcohol Effects (FAE).

    I think some medication is in order. I would think something like Risperdal would really help get the rages under control. I would start there and get to a child psychiarist pronto for a rx.

    I suspect that the I don't want to live is a reflection of the fact that he knows how out of control he is and how miserable he is making you.

    Probalby only a child dev specialist might be able to do the physical feature assessment that would might help rule in/out Fetal Alcohol Effects (FAE). The physcial features can be subtle. But if it were me, I wouldn't worry so much about that because frankly you aren't going to do too much different. medications will still be used to address symptoms, etc. It might help you have reasonable expectations. But you know, I think with great parenting and school intervention there is a great deal of hope. If you suspect any kind of learning issues, I think a neuropsychologist test would be of far greater use.

    Be very wary of the SSRI class of drugs. They can really loosen inhibitions which is not what you want. I think Risperdal would help you get the rages under control and then you can assess depression.

    good luck, I have been there and am now seeing a light at the end of tunnel.

    Try to find a child psychiatrist that has a bit of a child development background. If you can find one that knows a whole lot about Fetal Alcohol Effects (FAE) let me know!

    If you can revised your expectations and start where he is--which is not pretty, admittedly, you might be able to break into the cycle of rage and poor self esteem.

    Have you ruled in'/out Reactive Attachment Disorder (RAD)?
     
  14. pepperidge

    pepperidge New Member

    Are you on the west coast? U of Wash is well regarded in the area of Fetal Alcohol Effects (FAE).

    Have you read the explosive child? it might help you with but the talk part of it may not be very accessible at this point.

    Other thing that i have learned is that it helps to have routine, routine, black and white. Anytime there was room for negotiation and I said no, then we got explosion. If you always have 1/2 hour of tv have it. if you always stop at x for y, you have to stop at x. Write down a list of things at night. we have take shower, 1/2 hour of reading, etc then tv. but the list is written down, they can check things off, then tv. If I make the mistake of adding something to the list, it is a major deal/explosion time. Don't know if that applies to your son, but it has really helped in dealing with mine.

    I am surprised that they didn't give you Rispderal at the emergency. Do you have a family doctor? Maybe they would feel comfortable prescribing that? It can either be given on a daily basis (which is what we did for a while) or on a PRN basis.
     
  15. AnnieO

    AnnieO Shooting from the Hip

    :hugs:

    I have 2 that are likely both Fetal Alcohol Effects (FAE), though only one has been diagnosis'd Fetal Alcohol Syndrome (FAS).

    Anyway... O has horrible huge rages. J only cries when he's angry. In fact I've never seen him show anger in any way other than by crying. It would be easy (and wrong) to say that he never is angry.

    O has been diagnosis'd bipolar... So, knowing that both kids are about 99% likely Fetal Alcohol Effects (FAE), I've seen two sides of the same coin. For O, risperidone worked really well - 0.25 mg in the AM, 0.25 after school and 0.5 at bed time - night and day. Till she started refusing to take it.

    J was diagnosis'd ADHD, by one visit to a psychiatrist at age 7, put on 18mg Concerta by his pediatrician at bio mom's request, when that didn't work it was 27mg, then 54mg... And he was a B.R.A.T. on the Concerta (plus crashed at night so he didn't wake, we had to finally remove the carpet in his room). We got residential, had new pediatrician wean him off - and not only is his behavior better, but his grades are, too. He needs interventions, not stimulants.

    Oh, yes. O on SSRIs was HORRIBLE. Just a thought on that.
     
  16. pepperidge

    pepperidge New Member

    both of my kids have done well on stimulants though that is not the only thing they are on. One however couldn't tolerate them until puberty but they have helped a lot.

    Many things can be co-morbid with Fetal Alcohol Syndrome (FAS)--like ADHD, or mood dysregulation. Fetal Alcohol Effects (FAE) is not a terribly useful diagnosis in that it doesn't tell you which medications to use etc, so you then have to go by the symptoms. It is most useful for adjusting parental expectations.
     
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