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  1. #1
    jory29
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    Anxiety Disorder (Panic attacks)/Aspergers/Sensory/12 year old, plus Celexa...

    Posted my thread in one thread that seems to be seldom read, (and was likely more appropriate for this board, anyway) - so I would like to post it here for you gals to read - I think you all have wisdom that I would greatly appreciate any input you have for me!! Here's my thread...

    http://www3.fertilethoughts.com/foru...d.php?t=618792

    THANK YOU!!!!! For any replies!!

    And so you don't have to click away from this thread, here's what I had said...
    Hi all,
    I need your help. Please! Our 12 year old son who has been formally DX'd with an anxiety disorder (panic attacks), and what we and now the medical profession believe to be Aspergers, (sensory issues and all DX criteria) are having a very tough time even when our son is on meds. It took us a few years to finally decide to select the medication route - I felt I had no choice at the final month end of school last year when he began to have panic attacks so bad that he couldn't even bring himself to go to school. (We worry that he can't keep up with the school time missed at school.) All went fairly well once he started the meds, we were pleased, then suddenly the meds. stopped working effectively (break-through panic attacks) and even so more when he started on a new higher dosage (40 mg of celexa for 13 days.) Finally, once he was on 40 mg we had to back down to 30 mg. and he says he feels fine, but is still terrified to go to school (won't acknowledge that it is fear of school he says it is nausea, or feeling ill, or 'what if' he needs to call home if he's not feeling well, etc., or what if he is too tired in the morning and needs to take the morning off)- he seems to have developed a phobia of school, separation anxiety from being away from me (which had finished in gr. 2, he was pretty late to give that up - he's always worried, tells me to drive safely, asks me if I'm going anywhere during the day when he's in school... argh - I feel like I'm in a zoo, locked up, and can't go anywhere! (Anyone else feel the same?? Bueller.... Bueller... ?) I can't even work outside of the home as I have been called to the school so many times to help him with his panic attacks and most always have had to take him home... But I couldn't work out of the home anyway, as the stress has caused my Crohn's disease to flare up so much, I can't do anything for work.

    The funny thing is... everyone else sees him as being super gracious, polite, and kind. He IS! To everyone else but his family... to us, he 'melts down', talks back, won't listen to rules, feels entitled to whatever he wants or feels he needs... anyone else with an AS child who is also very demanding/perseverative/and who won't back down? My DH and I are growing so weary - he has been dropped from counseling, as they say he is 'fine' and doesn't need it. Finally though, with his panic attacks, he will begin counseling in Nov. to help him to learn coping strategies. If we try to let the medical profession know how headstrong he is, they seem to pooh pooh it, because anyone can see what a terrific kid he is. (I know they can melt down in front of family, and try hard to maintain a 'normalcy' in front of others, but boy, is this tough.)

    It is like our son knows he is misbehaving, but can't seem to help it as he melts down and/or has panic attacks day after day. You should have seen the meltdown the ensued for days, over our telling him he couldn't have a certain food item that would interfere with his meds... he panicked and melted down hours upon hours, from time to time, for several days. He walks, he frets, he paces, and he stims. (He uses a bendy wire and stares at it as it wiggles, telling us it is his invention, so we won't think he is playing with a toy. We know it is his calming technique, and makes sure he has enough wire to help him get through things. We have never discouraged that. He doesn't do this in public, either.) He is mostly trying to talk and talk and talk about something to the point we feel it is making it worse for him but he insists we MUST talk about it in order to make him feel better. Later on, when time passes, he realizes he over reacted and was very much 'in our faces' talking about it until HE felt it was dealt with. I have tried to insist that we have talked about it and resolve it, and it needs to be dropped, but to no avail.

    We feel like we don't have much control over what our son does, and we feel; he won't be able to succeed in life, as he can't even pick up his clothes, his plates, etc. He listens, says 'uh huh' but then 'forgets.' He is very easily distracted but incredibly bright in so many ways, but SO much like a 2-4 year old some of the time. At times, it seems he is only being nice to someone so that he can get something, or get his way. He seems like he might not be able to process feelings the way NT people do. (?)

    If anyone has a child who has AS, I think they will totally understand and 'get' this - but if so, please, please let us know some coping strategies that you have used. I feel like our entire family is unraveling.

    Thank God my DH is strong, and we are a strong family unit - but day, after day, the struggle is there....

    Which leads me to... how many of you are on antidepressants, and has it helped you?? I am at my wits end. I feel down much of the time, either my son or my DH drag me down as soon as they feel down.

    We have a 6 year old DD who is extremely well adjusted in life -just goes with the flow - and is kind, and courteous to all... if not for her, and her successes, I would truly wonder if I had screwed up severely with my son. (As a Mom.)

    I do believe our son has a good heart - an awesome heart - I just believe he will work hard NOT to do work (comes across as lazy, but likely is the Aspergers, and please, no offense to those who have children with AS - I just mean to say that his lack of being able to communicate effectively with us at times, can appear to be a lack of care/and thus end up looking like he is trying to get out of work, etc.) and he is soooo headstrong that he will work hard - very hard - to get what he wants. This can be a good trait in later life but unfortuneately, not so much now when he is 12 years old. I would treat him older if he would act older, but with so many melt downs, it's hard. Waiting in lines and in Dr.'s offices, etc. has always been a living h*ll. People stare at us like we have 2 heads, or even more. UGH! We are blessed that he is very intelligent in many ways, but it also makes it difficult to try to get through to him, when he thinks he is right. He seems to have very little respect for the family, and again, that is not because his heart is not in the right place, but because he may be incapable of feeling/showing/ how he cares for others. (?) He once told me that when he hugs me and goes to his room, after being badly behaved, that he cries then, in private, as he knows he's done wrong, but is embarrassed to let me see him cry. Finally, the other day, he had a break through cry where I could see he felt horrible for how he was treating everyone, and he resolved to change, but once panic sets in, he is not himself, and disrespect rears it's ugly head once more.

    Any suggestions? I've heard that respiridone (sp.) can also help, but not sure how. I don't want anything for him that is addictive, but the celexa has likely made him more hyped than ever tired, so I would think his problem is not seretonin levels, (which is what celexa helps with) but rather, something else.

    Our son is also very much OCD - he insists on telling me that I need to tell him that 'we will cross that bridge when we get to it' (in the morning, the night before, when he is telling me he feels too sick to go to school.)

    His teacher and principal are supportive, but please tell me, how to get him the heck to school?

    Yep.... wits end. I tell 'ya, Calgon, please take me away, as one wise lady on these forums once stated.

    I am fine, (I think, LOL), but am really seeking some expertise from you ladies. You all helped me get pregnant with child #2 when I had secondary infertilty (24 months of TTC from start top finish, to get her here safely to us!! Thank You for all of your support, FT!!!) and so now, I hope and pray that some of you can be here for support for me, and I will stick around with support for you, too!!

    Thanks for allowing a weary Mom to vent. (Sigh.)


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  3. #2
    momla
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    Quote Originally Posted by jory29
    anyone else with an AS child who is also very demanding/perseverative/and who won't back down?
    Jake doesn't have a diagnosis of AS. He has a dx of autism but at this point he is quite similar to aS. Yes, Jake has these tendencies. I think the difference with us is that he is 6. A little less set in his ways. We have been working HARD on this in therapy. He is also on Adderall (ADHD med) and just started that about 6 weeks ago. Between the work we've done and the Adderall it is much better. However, it is not perfect.


    Quote Originally Posted by jory29
    If we try to let the medical profession know how headstrong he is, they seem to pooh pooh it, because anyone can see what a terrific kid he is. (I know they can melt down in front of family, and try hard to maintain a 'normalcy' in front of others, but boy, is this tough.)

    Have you video taped these stressful moments? I would suggest video taping them. (It is HARD to video tape your child doing something you'd rather forget than remember) I would make an appt with a child psychologist and have them watch as much of the video tape as you can get them to. Show them the most impressive part first in case they will only watch a few moments.


    Quote Originally Posted by jory29
    It is like our son knows he is misbehaving, but can't seem to help it as he melts down and/or has panic attacks day after day. You should have seen the meltdown the ensued for days, over our telling him he couldn't have a certain food item that would interfere with his meds... he panicked and melted down hours upon hours, from time to time, for several days.
    Poor guy. It is sad b/c you know he doesn't want to feel this way.


    Quote Originally Posted by jory29
    He walks, he frets, he paces, and he stims. (He uses a bendy wire and stares at it as it wiggles, telling us it is his invention, so we won't think he is playing with a toy.
    Had to laugh at this b/c Jake will tell us things are "inventions" or some kind of tool that he creates when he knows he isn't supposed to be playing with it (like our digital SLR camera, our video camera, my jewelry, etc)



    Quote Originally Posted by jory29
    He is mostly trying to talk and talk and talk about something to the point we feel it is making it worse for him but he insists we MUST talk about it in order to make him feel better. Later on, when time passes, he realizes he over reacted and was very much 'in our faces' talking about it until HE felt it was dealt with. I have tried to insist that we have talked about it and resolve it, and it needs to be dropped, but to no avail.

    We feel like we don't have much control over what our son does, and we feel; he won't be able to succeed in life,
    Ooooh. RDI (Relationship Development Intervention) sprang into my brain here. (It isn't ever very far from my brain b/c that is the type of therapy we are doing now). RDI is a type of therapy that takes kids back through the proper developmental stages of relationship building. It focuses a lot on nonverbal language, self-regulation, relationship skills, etc. You can look at their website and see if there is a consultant near you (www.rdiconnect.com) We are in Kansas City and use a consultant in Los Angeles. An RDIer would say that the reason he is doing the stuff quoted above is because he lacks a sense of competency. He is feeling very incompetent. So, in order to get himself back to a "safe place" he is being very controlling and repetitive b/c the novelty of whatever else is going on is too scary. However, being in control when you are a child is scary too, so it is a vicious cycle. You have to take him wayyyyyy back to a place of healthy dependency on you and your dh as his guides and mentors. (He missed this step b/c of his AS). Through intensive therapy you make him healthily dependent on you. Not in a separation anxiety sort of way....that is just another attempt to control a situation that is too scary. But, in a "I look to you for guidance and trust you" sort of way. When he can TRULY trust you and your perspective then his anxiety about novel situations will decrease b/c he can lean on you instead of trying to jump to being controlling (which is also very scary for him but just seems less scary to him).

    Quote Originally Posted by jory29
    At times, it seems he is only being nice to someone so that he can get something, or get his way. He seems like he might not be able to process feelings the way NT people do. (?)
    Because he is missing the core parts of relationship development. (Not b/c you have done something wrong, but b/c he has AS).

    Quote Originally Posted by jory29
    Thank God my DH is strong, and we are a strong family unit - but day, after day, the struggle is there....
    That is good news to have a DH whose in this together with you. According to our RDI consultant, the kids whose dads are super involved in RDI therapy make the most progress. (It also helps take the burden off Mommy). My dh is getting "busted" by our RDI consultant this evening b/c he hasn't been as active in our program as he was when we started 2 years ago. Just kidding, he isn't really getting "busted" but she is having a "special phone consult with him." LOL!

    Quote Originally Posted by jory29
    We have a 6 year old DD who is extremely well adjusted in life -just goes with the flow - and is kind, and courteous to all... if not for her, and her successes, I would truly wonder if I had screwed up severely with my son. (As a Mom.)
    You ARE a good mom! OMG! I can just tell!




    Quote Originally Posted by jory29
    I do believe our son has a good heart - an awesome heart
    Of course he does! He is a child of God! He is a sweet boy who is just struggling (a lot) to interpret the world around him. His attempts at control, arguing, etc are all attempts to keep himself in control. Sounds weird I bet since he seems very out of control at the time. But, really. He doesn't have enough of the sophisticated skills that a NT child does. So, this is what he has come up with as an attempt at coping and understanding his world. In his subconscious he is thinking "If I get myself in charge of this situation then I can manipulate it so that it isn't so scary for me" b/c a LOT of things are scary for him. In a lot of ways as far as coping and referencing you for security as well as trust in another person's ability to lead him down a safe path that won't be too overwhelming for him he is like a very young child. It must be so so so so so scary for him to be a 2 year old in relationship/trust/coping skills, with the intelligence of a 15 year old, in a 12 year old's body!! I suspect he is needing some Calgon too. I KNOW you do.

    If I were you, I'd contact an RDI consultant asap. I don't recall where you live but I'd contact our consultant, Susan Hollar (speachsue@aol.com). She is one of the first 20 certified consultants, she is a SLP, and she has a 15 year old with AS.



    I hope I've helped.
    Momla Mommy to (10), (7)
    Baby Girl due April 27th!!


    "Shoot for the moon. Even if you miss it you will land among the stars." ~Les Brown



  4. #3
    Snoopy1
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    I went through some very similar issues with my DS when he was 8. After trying one medical professional after another and drugs, we decided to go with a holistic approach and finally got the help he needed. Don't know if you're interested in that or not, but I can tell you that it really does work.

    My DS still has some anxieties and extreme shyness, which we're using alternative medicine for, but he's emotionally stable now, loves going to school, gets all A's, and is the sweetest kid you'll ever meet. There's a ton of options if you want to know more.


  5. #4
    Renee2
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    My DD (6) has PDD-NOS and also suffers from severe anxiety and sensory disorder. I feel like you, I understand. I started crying reading your post. It is hard to hear day after day how sweet and nice your DD is when 30 seconds after you get her in the car she is screaming, crying, spitting, hissing, kicking, etc. Dealing with it day after day can get very very hard. I have consdered going to the dr for some anxiety meds myself. I feel so overwhelmed everyday, am I doing enough for her, what else could I do for her, and I feel the guilt of not having enough tiem for my 3 other children.

    My DD can be the sweetest little darling, then just turns in an instant. I can tell she doesn't mean to and can't help it, but it doesn't make it that much easier to deal with!
    Becky

    A 7
    M&J 5
    KK 3


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    jory29
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    BCMomla, you've helped sooo much today, thank you very much!!! I am going to head out for a bit, but will check out your posting again in depth later and will respond more to your posting. Thanks so much for helping. It made me feel a lot better this morning to read your posting... someone else understands. Thank You for that!

    Snoopy1, thanks for your input as well - my only prob. with the holistic approach now is that when our son is on meds., he won't be able to combine any herbs, etc., for fear of us not knowing how they would interact with him. I will keep it in mind should we end up taking him off meds., and may get in touch with you then. Thank you very much!!


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    jory29
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    Renee2, how on earth did I miss your posting?? You stated:
    "My DD (6) has PDD-NOS and also suffers from severe anxiety and sensory disorder. I feel like you, I understand. I started crying reading your post. It is hard to hear day after day how sweet and nice your DD is when 30 seconds after you get her in the car she is screaming, crying, spitting, hissing, kicking, etc. Dealing with it day after day can get very very hard. I have consdered going to the dr for some anxiety meds myself. I feel so overwhelmed everyday, am I doing enough for her, what else could I do for her, and I feel the guilt of not having enough tiem for my 3 other children.

    My DD can be the sweetest little darling, then just turns in an instant. I can tell she doesn't mean to and can't help it, but it doesn't make it that much easier to deal with!


    Wow - do you ever have a good understanding as well... I know what you mean, I feel like the one child in our family gets the short end of the stick sometimes, due to all of the time spent with our son. I think I should start taking each one out on their own for some Mom time. I think that would help. With 3 others for you, harder to do that, but I do find when I take just my son out, to a play, etc., he is a pleasure to be with - no other siblings to fight with, etc.

    Yeah, I know what you mean, as I wonder if my down days aren't getting to be more than any normal or up day. An antidepressant might help us. I hate getting into it in case it makes me worse, but some days I think it's something I should look into.

    In many ways, things get better as your child ages - 6 was quite a hard time for us as well and in some ways, the older, more mature person is easier to deal with, and in other ways, the increased determined attitude, etc. can all be worsened as time goes on, as they settle into their ways.

    Hang in there, just keep hanging in and take it moment by moment if you have to. Thanks for having responded to my posting, I appreciate it, and I had a feeling many will relate to the tug of war feelings involved with having children with perhaps some similar behaviors, issues, etc.

    BC-Momla, I re-read your posting, and you are highly intelligent, and able to 'read' a situation very clearly. I agree he feels extremely incompetent. I understand better now why he struggles so, to maintain power and control over his life, and that will help. I live in Canada, too far from LA to go there, but I will do some research on this... you have pointed us in the right direction, thanks very much, and good luck with your Jake. Sounds like you guys are really stepping in early and putting a solid plan into play. I think it's hard for your dh because all of his dreams of a NT boy - everything he has wanted for his son - may not come true, and I think that hurts their fathers very, very much. Sounds like your DH is doing super -hard sometimes for men to communicate, so kudos to him for being so involved. You're awesome to do so much research yourself for Jake. You're a wealth of knowledge (and support), and it shows, so thanks very much, from the bottom of my heart!


  8. #7
    momla
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    Jory29,

    We don't travel to LA. Susan travels to us. She travels all over the place. She has a group of families in Australia.

    I do know of one consultant in Canada. I met her once and heard her speak. She is very nice and seems very bright. Her name is Lisa Palasti. Here is her info:

    Lisa Palasti
    Kitchener, Ontario N2B 3T7
    Phone: 519.895.0228
    Email: lisapal@sympatico.ca
    Momla Mommy to (10), (7)
    Baby Girl due April 27th!!


    "Shoot for the moon. Even if you miss it you will land among the stars." ~Les Brown



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    Snoopy1
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    Just so you know - holistic doesn't always mean herbs, and there are many things you can do while he's on meds.

    My DS was a complete mess at 8 - they thought he was bipolar and a hundred other diagnoses, including Asperger's. You'd never know it to look at him today.


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    My dd has Asperger's, SPD and anxiety issues. I can relate to so much of what you have written, Jory. My dd is very much like Renee2's.

    A year ago we were dealing with MAJOR tantrums and meltdowns on a daily basis. My dh and I were questioning whether we were even equipped to parent her. We were dealing with irrational fears and severe anxiety. She would "cover" it all day at school and daycare, only to meltdown almost immediately upon coming home. We were all miserable. Finally we went back to the psychiatrist and told him that she just was not functioning. She was fine at school and daycare, but was a nightmare at home. The psychiatrist put her on Risperdal (Risperidone). She only takes 1/2 a tablet once a day, so 0.25 mg once a day. For us, it is a miracle drug. She isn't perfect, but she is manageable now. She seldom has meltdowns and if she does, I can figure out the source and we can talk about WHY she is feeling the way she is feeling. Honestly, I would give the Risperdal a try.
    Mommy to two beautiful girls:
    Jordan (8) - dx: Asperger's Syndrome, SID/SPD, milk allergy
    Brooklyn (5)- small but mighty!

    Visit my online store!


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    jory29
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    Thanks very much, Snoopy1, Monchhichi, and BC-Momla, for your replies.

    Snoopy1, you're right, I remember that now. If you don't mind sharing a little bit about what you are currently doing, that might help us, as well as others on the boards. I am open minded to things, but of course, fearful of interaction of things with the meds. our son is currently on.

    Monchhichi, I am sure you and I spoke before on a thread - it would have been a long time ago, but in any event, I am glad you touched base again! Sounds like we have some similar issues. We have an appt. to see the Dr. in early Nov., and I wonder if he will recommend Risperdal (Risperidone.) I'll keep you guys posted when we hear anything more from the Dr. Good luck with your struggles, and I am so glad to hear it is going more smoothly for you!! Excellent!

    BC-Momla, we're on the west coast, so actually closer to L.A. I told my DH you had made a LOT of sense as to what is going on with our DS, and he agrees, and was VERY comforted by the fact that other people out there are also going through some similar issues. Thanks so much!! I am going to look into what you posted about.

    I'm sorry it took me so long to write back to all of you. Thanks for being here for support.


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