Pervasive Developmental Disorder (PDD) -not otherwise specified vs. Fetal Alcohol Syndrome (FAS)

Discussion in 'General Parenting' started by escapedagain, Nov 24, 2008.

  1. escapedagain

    escapedagain New Member

    It has been a while since I posted but things have been crazy! Whats new right?
    In an answer to my last post someone asked me if difficult child could possible be fetal alcohol syndrome. The answer is yes! He difinately can be, his bio. mother did drugs, drank and was in a abusive relationship while she carried him.
    The doctors all know this but has never said anything about it; I'm wonder why you asked. I have cross referenced the symptoms and behaviors of the two and there are a lot of similarities. Is the treatment for the two the same? Should I be mentioning the Fetal Alcohol Syndrome (FAS) to our doctor again? Do you know something I need to know?
    Things have been so bad for us lately I am grasping at straws.

    difficult child is down to 3 medications from 7. One is still thorazine which I am going to ask be changed tomorrow during a phone consult with our doctor. I have researched it since some of you said you didnt like it. You were right, difficult child is having problems that seem to be being caused by the thorazine.

    Does anyone know if a medication. wash can be done in a reg. hospital and how long they take? difficult child cant handle the phyc. hospital. due to seperation anxiety and trust issues. But I would really like to just start over. He has been on soooooooo many medications at a time since he was 4 (he is now 9).

    I often wonder if he wouldnt be better without medications, are they just mixing in him and making him like this? I know he has problems but can they really be this bad?

    We are going nuts, I would appreciate any and all advice or info. you have.

    I also want to say THANKS TO YOU ALL! Before I had a place to ask question I felt so lonely and all on my own. Now I have friends to ask who truely care and know what I am going through. I appreciate you all very much. I may not post much but I read everything on here and have learned so much! I really appreciate the leads to other sites that are helpful.

    Thanks everyone,
    connie
     
  2. smallworld

    smallworld Moderator

    A medication wash can actually be done at home if you wean your difficult child down slowly one medication at a time. Depending on what the medications are (I don't see them in your signature), he may experience withdrawal effects, but after the medications are out of his system, he should not feel physically ill any longer. The only danger I see is if he becomes physically aggressive or violent without any medications at all.
     
  3. susiestar

    susiestar Roll With It

    As a medication wash can take weeks or months to do properly (one medication at a time, small steps down maybe one small increment per week or two to minimize withdrawal problems. Docs don't acknowledge withdrawal problems - google the medicine and withdrawal to get info on it ex: "prozac withdrawal"), we have always had to do them at home. HEck, a couple of our docs didn't even believe in medication washes for any reason.

    But if Fetal Alcohol Syndrome (FAS) is a problem you need to learn how to treat that. I don't have firsthand experience with it, but understand that Fetal Alcohol Syndrome (FAS) has it's own big bundle of problems, one of which is very very difficult times learning almost anything.

    I would bring it up with the doctor and keep bringing it up until you get an answer you understand and seems to fit the situation. You probably should look for a developmental pediatrician to help with either problem. If travel is not a problem we have an AMAZING dev pediatrician in Tulsa, OK. Your post shows you are in Missouri, I can give you the dev pediatrician's website in a private message if you want. He does EXCELLENT evaluations with the team of doctors there (child is evaluated by a number of different professionals, then they "staff" it, meaning they all look at the results privately, and then talk out what they think is happening together, then the doctor meets with you).

    Sorry you are facing all of this. I truly truly HATE it when people use drugs and alcohol while pregnant. I really wish there was some way we could keep it from happening, it can ruin so much for the kids, from such an early age all through their lives.
     
  4. meowbunny

    meowbunny New Member

    Sadly, there really isn't a lot of treatment for Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE). It is a serious neurological illness. If Fetal Alcohol Syndrome (FAS), there are typical facial features, much like Down's Syndrome but not quite as obvious. There is also usually mild retardation. Fetal Alcohol Effects (FAE) is not so obvious and is a guess by docs at this time. You can medicate some of the behavior but not the cause. Therapy has little effect. So, I'm hoping that it is not Fetal Alcohol Syndrome (FAS) or Fetal Alcohol Effects (FAE) for his and your sake.

    I hope you find some answers as to what he actually has. At least then you know what can and cannot be treated.
     
  5. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Fetal Alcohol Syndrome (FAS) can be determined by a genetics test, but Fetal Alcohol Effects (FAE) can't (Fetal Alcohol Effects). Fetal Alcohol Effects (FAE) can be as debilitating as Fetal Alcohol Syndrome (FAS). I don't know about the medication wash, but there are big differences between Pervasive Developmental Disorder (PDD)-not otherwise specified and Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE). Pervasive Developmental Disorder (PDD)-not otherwise specified is a neurological disorder. The kids have good rote memories and don't lose what they learn one day and remember the next. Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE) kids have "swiss cheese learning." They can know the alphabet one day and forget it the next day. They are very hyperactive, immature, and scattered. Also, they do not understand right and wrong and Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE) kids don't. Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE) is organic brain damage from the alcohol. It can't really be fixed. Autism Spectrum Disorders (ASD) can be treated and can get better. Pervasive Developmental Disorder (PDD)-not otherwise specified kids can and do make steady progress with interventions. They understand right from wrong. They retain what they have learned (although very early in their development some regress). They tend to do better as they get older as long as they are given the proper interventions, and sometimes even if they don't. My son went from very dysfunctional at three to almost typical at 15 with all his help. I haven't heard anything like that for kids with Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE). My son was WAY better off of medications and we weaned him with a pediatrician from home. Drug affected babies are more apt to be Autism Spectrum Disorders (ASD). My son was also exposed to alcohol/drugs, but he dodged the Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE) bullet. He is very lucky! Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE) can not really be treated or get better. The adults need a lot of supervision. Many of them drink, even though they are told over and over again not to drink. It's almost the rule because they can't seem to "get it." Hopefully, your child has Pervasive Developmental Disorder (PDD) because it is very treatable. Here is an online test for Pervasive Developmental Disorder (PDD):
    http://www.childbrain.com/pddassess.html
     
    Last edited: Nov 24, 2008
  6. pepperidge

    pepperidge New Member

    Hi,

    I see that you have several children with a Fetal Alcohol Syndrome (FAS) diagnosis. I have at least one child with that diagnosis as well. I don't know what to say--I am worn out dealing with my child's inability to regulate his emotions tonight. Like almost every day. I'll write more later, I just wanted to say welcome.

    I think there is some progress that can be made, both cognitively and emotionally, but it is very very hard. Certainly good environments are better than poor environments. But I really find so little written that I find addresses the issues I face.

    I'll write more later, I'm being badgered now!

    WElcome.
    P.
     
  7. pepperidge

    pepperidge New Member

    Hi again,

    I can't fall asleep because it has been one of those draining days.

    It really doesn't sound too much like PPD, although I don't know too much about PPD. I know that when I took my child to a developmental pediatrician at 14 mos (because he had a fairly profound speech delay), they were able to rule out anything on the autistic spectrum fairly quickly. My impression is that most Fetal Alcohol Syndrome (FAS) kids are pretty social and in many respects (I guess unless really pronounced) pass for "normal" in a casual setting. At an early age, my child was very impulsive, very distractable, very tuned to everything going on around him, quite capable of understanding what the rules were, but incapable of acting on them. As he says, I try to be good, but I just can't sometimes. The pressure to go along with whatever is going on, to impress friends or whatever often leads to socially unacceptable behavior. When my son was in K, the K teacher used to meet me every afternoon with a litany of all the bad things he did that day. I finally got to the point of avoiding her. (That was in my pre-warrior mom informed about IEP days).

    What we are having the hardest time now with is the inability to tolerate no. My son does not rage truly, but everytime he doesn't get his way, it is either a major argument, badgering, goes into a bad mood. Nothing is ever his fault. I feel like I am living with an abusive spouse, it is that bad. Mind you, this is after we have dropped as many battles as we can. We try to hold on the line on not too much TV watching, taking a shower. We have dropped all homework battles. But it still seems that things keep coming up. The abusive stuff that comes out of his mouth is getting worse. And he is so miserable, doesn't have friends, but it is every one else's fault.

    In reading this, it doesn't sound like there is much joy in my relationship with him. This is
    unfortunately true. I really don't know how to turn it around at this point. I am in a pretty low spot.

    Medicating these children is very difficult. Frankly we have had almost no luck (abilify has helped, we are not sure if it is still helping, doing a medwash right now). We have definitely seen some atypical adverse reactions in my son (to Tenex in particular and also to stimulants). Unless he has a mood disorder or ADHD along with Fetal Alcohol Syndrome (FAS), you may not get too much relief in the way of medications, and even then the medications may not work very well.

    I also have to say that despite the many therapists we've seen, none have really treated Fetal Alcohol Syndrome (FAS) children and I think many of the therapeutic tools don't work very well with children with little impulse control. I read a booklet my Diane Malbin (?) on Fetal Alcohol Syndrome (FAS). She basically said that we shouldn't expect these children to change, we need to change what we are doing. I know I need to change something in how I am approaching the situation, but I am at a loss. It helps to have as much external structure in their life and find situations in which they function reasonably well. I know my child does better with the structured part of school than almost anywhere else (though maybe I get the residual of having to cope with behaving all day long).

    I have an older child with mental illness. I have seen drugs work wonders for him. I see growth and development, and I feel like I at least have a positive relationship with him. With my younger Fetal Alcohol Syndrome (FAS) child, I wonder if I have a child who is really capable of learning from his bad choices. Sometimes I feel very much alone, even here on the Board, because I feel that even the ultimate "let them sink so they learn to swim strategy"when all else fails, isn't even ultimately going to work.

    I am sorry, this post is probably a downer and I don't know if it has given you any useful info. It is good to see some Fetal Alcohol Syndrome (FAS) parents posting; there don't seem to be very many of them on this board for some reason. I'd love to hear about your experiences, and any knowledge you've acquired along the way in your journey.

    Hugs,
    Pepperidge
     
  8. lillians

    lillians lillians

    hi i see yu as on the west coast what does that mean,,lol we were in bc and the finest doctors there re Fetal Alcohol Syndrome (FAS),,we were fortunate in that our daughter was the bio mum,and so we knew all the history,,and all the facial features and delays suited to a t especially with younger,, older was tested positive for cocaine at birth and apprehended ,, it was a court battle to get him but before he was 8 weeks old he was our baby and all the steps takien with early intervention in play,,,there doesnt seen to be a real right with Fetal Alcohol Syndrome (FAS),, it seems by guess and by golly,, and total dedication
     
  9. pepperidge

    pepperidge New Member

    Lillians

    I am in the U.S. I get the impression that Canada is ahead of the game of Fetal Alcohol Syndrome (FAS) services etc.

    Are you getting any interventions for your child? How old is he/she? Has your Fetal Alcohol Syndrome (FAS) doctor recommended anything in particular? Anything you see working?

    My Fetal Alcohol Syndrome (FAS) child had very severe speech delays. However, he has entirely aught up and is able to function ok in a mainstream classroom. He would function even better if he did his homework!

    P.
     
  10. lillians

    lillians lillians

    hi,, no,, not much now,, bc is the place ,, there are experts there on Fetal Alcohol Syndrome (FAS),, and show their faces,,and help out,and listen,,,after bthe children become a certain age,, yu may as well drop off the map,, no one is interested anymore,, and here in ontario,in the space we live in,, Fetal Alcohol Syndrome (FAS),,is another excuse for brat,,,all behaviours directed to ,,ahh yes poor parenting,,, as the children are now 16-17,, it appears we are mainly on our own other than a person who takes our daughter on outings 2 times a week,,,before 16 there was--is a program for horse back riding ,,slege hockey ,,bowling and a few other activities after 15 no more help,, as we are pensioners with no monies left after this long expensive adventure,, when the kids need more than ever notta
     
  11. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Aren't there any group home facilities where she can live and still be watched?
     
  12. lillians

    lillians lillians

    not here at least til 18,,, when her pension will begin,, we do have her name on a list,, this is a small towm not much available
     
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