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Old 04-24-2012, 07:20 AM - Thread Starter
 
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Hello All,

 

DD age 9.5 has been diagnosed by child psychiatrist with GAD and OCD. I feel that this is a good diagnosis, for which we are trying to get into a program for Cognitive Behavioral Therapy.

 

However, we feel pretty sure there are other issues. It seems futile to go to lots of individual diagnosticians who look at their area and aren't able to look at the whole child. So we are on wait lists for my DD to have comprehensive testing at CHOP (9-12 mo). I want a variety of things considered including Aspergers, SPD, ADHD, and a full psych evaluation. Major issues aside from the OCD/Anxiety are extreme tantrums/meltdowns, impulse control, freaking out when rules are not followed or anything changes, freaking out triggered by things she can't handle and doing weird body movements/sounds to feel better, some odd social issues, hysterical reactions thinking she is injured all the time, and her general pervasive unhappiness and feeling that something is wrong inside her. Our 1-year old DD2 is by nature and age unpredictable and has become a huge trigger, needing to keep them apart often.

 

Is there anything we should do in the meantime? We are trying to get into a new program (at CHOP) where the wait might be only 3 months but we don't yet know if we qualify. I am wondering if we should be taking her to other doctors in the meantime. It seems like everything is a wait and maybe it's better to wait for the comprehensive one. (Meanwhile, she is complaining of sore breasts, so I wonder if puberty starting could be ramping things up.)

 

Any thoughts would be appreciated. I keep trying things to make her better, but I just feel that if I had a diagnosis, I could start understanding and then learning how to make her life better, not necessarily through medication, but I am open to that. We did try her on Prozac for the anxiety which turned out to be a nightmare, and we had to give her Abilify to reduce the aggression that ramped up unbearably. So I'm kind of desperate to learn so I can try other options and feeling pressed by the wait time.

 

Is this waiting just a problem for everyone? I feel that I should have had her evaluated at age 3 when I first suspected something, instead of constantly chalking it up to her being uniquely sensitive and going through tough life issues.

 

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Old 04-24-2012, 07:28 AM
 
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Hiya!  A fellow CHOP parent here.   Unfortunately, the wait times are the same at all developmental peds in this area.  What I'd do is call them and ask to be put on any cancellation lists.  Tell them you only need "x" hours notice in order to get into the office (if you can get your daughter and be there in an hour - tell them that).    Tell them you'd like to check in weekly - what day/time do they suggest you check for cancellations.  

 

Have you completed the paperwork yet?  My friend got hers, filled it out and delivered it personally along with a tray of freshly baked brownies (DuPont not CHOP) and had an appointment 3 weeks later.  

 

I have a wonderful (regular) pediatrician who is really on top of a lot of the special needs challenges but he's in Marlton and I don't know that he'd be able to diagnose anything outside of ADHD.  You are welcome to message me.

 

{{{hugs}}}


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Old 04-24-2012, 10:08 AM
 
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I completely second the PPs suggestions about the cancellation list.  CHOP gets no-shows ALL the time.  The waitlist, unfortunately, for a neuropsych or developmental ped at any of the children's hospitals around (like Dupont and St. Chris) are all about a year too.  You can try going the private neuropsych route, which can be good for everything except for OT/PT issues.  Good luck!

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Old 04-26-2012, 06:39 AM - Thread Starter
 
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Thanks. We are on the wait list for the psych evaluation, but I will get on the wait list for the behavioral one, too. That is hilarious about the brownies!!

 

It's hard because as we look at this differently I see DD asking for help in certain ways... stuff that will relieve  her, but I don't really understand and without a diagnosis I don't know where to learn or how to understand (somehow I just feel that will help!). 

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Old 04-26-2012, 08:05 AM
 
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Can you give an example?  Maybe people here who have experience can offer suggestions in the meantime?


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Old 04-26-2012, 12:56 PM - Thread Starter
 
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OK. She has been diagnosed with Anxiety/OCD, which is a huge piece. I just don't know how far reaching the ramifications are, or if there is another issue at hand. A lot of her stuff might be a result of severe OCD, but could also be ADHD, Aspergers, Sensory stuff.

 

One of the major issues is her extreme meltdowns. (She is 9 1/2.) She is especially triggered by: a lot of noise like screaming; non-compliance with procedures (including friends coming over and using her stuff wrong or wasting it, her 1 year old sister messing things up/scribbling on stuff/touching her things/crying/hitting (note: all annoying but the reaction is not age appropriate; changes to routine); getting reprimanded; unspecified overwhelm. She can't seem to control herself, does strange toodling vocal sounds and sort of robotic movements, shaking and convulsing type of stuff, becomes either physically aggressive or weirdly fixated (won't stop holding or staring) - although she is learning to ask for help when this starts and I remove her.

 

Other issues include more classic OCD/anxiety, such as wanting to fix things to make even, general worry about almost everything. Also some odd social things, such as wanting to play with little kids or adults but not doing so well with peers, despite being very social by nature, and wanting to be inappropriately close to others but sometimes not wanting to be touched. Extreme reactions to physical bumps and minor injuries, such as bloodcurdling screams, or acting as if the person was trying to attack her. 

 

*Some things we have found to help that I am trying to understand better since I don't have a diagnosis!*

sucking and gum chewing

drawing little mazes on graph paper or creating seating charts for her class (she likes to play teacher)

loud music with a strong beat

she begs me to give her a project, "like office work" or wanting to play assembly line "factory" - I can't figure out what she wants here. Some kind of organizational (but easy, not like organize your room!), repetitive or patterning activity. ???

 

I would appreciate ANY Thoughts. This is all new and the fact that she is talking about it is new. Especially, as I wait for the looooooong wait lists to come up, I am trying to figure out how to apply some of the things that help, when I don't understand WHY they help or WHAT they are helping. thank you!

 

 

 

 

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Old 04-26-2012, 02:30 PM
 
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Sounds like your daughter has some sensory issues which are commonly co-morbid with other developmental delays.  You can  find a checklist here... http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html  If this sounds like your daughter, some good resources are the books "The Out Of Sync Child" and "The Out of Sync Child Has Fun"  The later has activities which should help with the over responsiveness.  Also - Wilenbarger Brushing has been known to help as well - here's a video http://www.youtube.com/watch?v=t9LSbINc-y0

 

Also - have you looked at the possibility of a food issue?  My son had horrendous melt downs due to food dye sensitivities.  www.feingold.org 

 

Now, please don't take this personally but... have you looked at the way you are parenting her as a possible cause of some of these troubles (obviously not all)?  My husband and I have had to learn how to effectively parent our son.  Now, this may be a bit of schlep for you but we see a wonderful therapist in Marlton.  PM me if you'd like his information and I'd be happy to share it.  IF it is too far, maybe you can talk to him and see if he has a recommendation for someone closer to home.

 

When we first started to see him, he told us "most parents parent by the seat of their pants. That's because that's how their parents parented them and their parents parented them and so on.  That works for most of the population.  It rarely works in the special needs population".


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Old 04-26-2012, 09:54 PM
 
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hola.gif

 

My 15 year old has a dx of social anxiety disorder in additional Aspegers's and SPD. There is a ton of stuff that you can do now.

 

First, I think it's great that you are on the path for a full eval. It is, IMHO, the right thing to do.

 

Second, what's going on with getting her into cognitive behavior therapy? It's one of the things I would have suggested. It was GREAT for my DD is learning how to thing differently about situations, learning tools she could use and which situations they applied to, etc. It also helped us tweak out parenting to better fit the kid we have to parent. Just as Spotted Fox said, the way we respond to situations has a massive impact, and having a highly skilled professional involved with my DD, learning how she thinks, letting her know how we handle things was scary and humbling, but also led us to some new things that I NEVER would have gotten to on my own. 

 

Next, can your DD swim? I know it might sound odd, but swimming is one of the very best things I have ever found for my DD. It really fits her sensory needs -- all the time in the water is like the PERFECT therapy for her. She swam on a team for years -- hours and hour every week of swimming back and forth across the pool. It is repetitive beyond what I can describe. There are only 4 competitive strokes, and at one point, she was practicing 8 hours a week. Even for a kid without sensory issues, I think that a lot of kids with anxiety issues, swimming laps could be extremely calming. My DD gets the same thing out of swimming that I do out of yoga namaste.gif

 

(Being on a team can provide structure and access to good coaches, competing at meets is not a requirement of being on a team.) 

 

If you are interested, I'd check out USA Swimming for a team near year.

 

Also, continuing trying to figure out what her triggers are. Chances are, they won't be able to tell you that at an eval. It's the kind of thing you tell them. Trying to figure it.

 

for figuring sensory stuff, I found the book "The Out of Sync Child" extremely helpful.

 

Does your DD have an IEP or 504? What have you told the school? What accommodations is she getting? What aspects of school are stressful for her?

 

How are her fine motor skills? Fine motor issues are co-morbid with many things, and can cause extreme stress for kids at school. This can become more intense as the demands of school increase and the child is not able to progress at the same rate of their peers.

 

Last, what activities does she really enjoy? Is she in any outside classes that just make her happy? If not, why not try something new -- anything that sounds fun to her. One of the best thing we can do for out kids is to find things they enjoy.


 


but everything has pros and cons  shrug.gif

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Old 04-27-2012, 06:53 AM - Thread Starter
 
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Linda, YES! She loves swimming and feels happy when swimming. It's a challenge in the winter and although we do have access to a pool at our family gym, we go less than we'd like because doing anything seems to cause upheaval. Funny you should mention that. I will look into a swim team, and think about how to get her doing laps more, and just playing. She does have 2 dance classes that she loves. I have noticed though that her baseline seems pretty low. Whenever we do something, even something she loves, the feeling of happiness lasts for just a moment. Then she seems to go back into her hole of despairing.

 

We ARE trying to get into some CBT. It's about a 2 mo-process for the place we found, and since DD will be gone most of the summer to visit her father, they suggested waiting until September (ugh). We just got a referral for a sole practitioner recommended by a friend, closer, and maybe we can start sooner with her, but not sure yet. I have thought about trying to change the summer schedule, but she ASKED to go for 2 months instead of 1. I know this is because being at her father's is much more orderly, ritualized, calm and therefore easier in many ways for her (he has OCD and Asperger's, and lives at a Buddhist retreat center - so his life is very orderly, and there are no screaming grabbing babies!). I have a lot of hesitations (including the postponement of the therapy possibly) but I do think it would be a respite for her. And I have a hard time admitting that she might do better there.

 

She does not have an IEP or anything. She is highly successful at school. Only recently the anxiety of school is making her crazy, and certain things (yelling at recess, when a boy "with problems" loses control in class) set her off in other ways. The school knows she has some anxiety. I actually am planning to meet with the guidance counselor today because of her panic attacks when she forgets her homework (can't concentrate? I don't know what's going on, have discussed with the teacher but she can't stay focused.)

 

SpottedFoxx, yeah, I have thought it was my crummy parenting, and her sensitivity, for years. I have tried various different techniques treating these issues as behavioral/drama for years. Only recently did I figure out there was actual anxiety/OCD (when it truly ramped up) and now the other stuff is becoming clear as not right either.

 

That said, I am pretty sure that I have no idea how to properly parent this particular child. I know how to love her lots and lots (though even that is never enough - it's like she doesn't receive it), but I surely don't know how to help her thrive. She is getting by only by the fact that we are giving every last ounce to managing her, and it's not sustainable - and just getting by is not good enough. She is extraordinary! But I mean this is a child who begged me the last 2 days to handwrite her a note every day with her detailed schedule on it. Note that I have typed up and hung up schedules a lot and after about 3 days they are ignored - she wants a new, handwritten note every day, and burst into tears begging when I said I simply would not be able to do it. I feel like the personal attention she needs/wants is at an impossible level given the context of a family! I don't know how to be any more patient. I feel totally lost.

 

I will get The Out of Sync Child, thank you for the recommendation. Is it worth it to take her to another OT or someone (recommended) to be looked at for the sensory stuff/Asperger's while we are waiting for the CHOP appointment?

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Old 04-27-2012, 09:21 AM
 
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Originally Posted by andromedajulie View Post

SpottedFoxx, yeah, I have thought it was my crummy parenting, and her sensitivity, for years. I have tried various different techniques treating these issues as behavioral/drama for years. Only recently did I figure out there was actual anxiety/OCD (when it truly ramped up) and now the other stuff is becoming clear as not right either.

 

That said, I am pretty sure that I have no idea how to properly parent this particular child. I know how to love her lots and lots (though even that is never enough - it's like she doesn't receive it), but I surely don't know how to help her thrive. She is getting by only by the fact that we are giving every last ounce to managing her, and it's not sustainable - and just getting by is not good enough. She is extraordinary! But I mean this is a child who begged me the last 2 days to handwrite her a note every day with her detailed schedule on it. Note that I have typed up and hung up schedules a lot and after about 3 days they are ignored - she wants a new, handwritten note every day, and burst into tears begging when I said I simply would not be able to do it. I feel like the personal attention she needs/wants is at an impossible level given the context of a family! I don't know how to be any more patient. I feel totally lost.

 

I will get The Out of Sync Child, thank you for the recommendation. Is it worth it to take her to another OT or someone (recommended) to be looked at for the sensory stuff/Asperger's while we are waiting for the CHOP appointment?

 

Oh honey!  I wasn't try to say your parenting was crummy - far from it!  It's not easy being a parent to ANY kid but when you through in other things... it's downright confounding!  Now me and my husband... we were pretty crummy :)  He's the "I want to be your friend" kinda Dad so that left me doing the discipline.  When you have someone doing nothing, you tend to go overboard in the other direction (I became super helicopter Mom).  However, the therapist was actually able to bring us back to center and give us the skills we need to effectively parent our son.  

 

Your daughter sounds spectacular.  

 

I wonder if yoga would help her.  There is a yoga studio on South Street (I don't know where in DV you are) called Yoga Child - they specialize in children's yoga.  Maybe you, your daughter and even the baby could take some classes.   My son, when he melts, I've taught him to do an "Ohm" to calm himself.  He does yoga poses to relieve stress and shake off his meltdowns.  Maybe that would be a fun and positive option for her along with the swimming?

 


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Old 04-29-2012, 02:07 PM - Thread Starter
 
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SpottedFoxx, no worries, I did not take it meanly!

 

We definitely need help with how to help DD and how to run this household/family so her needs are supported but we don't feel like everyone is walking on eggshells around here. I guess that's the bottom line. I know that once we find someone for the CBT (and any other treatment we may need), I sincerely hope they will work with us as parents, too. I am getting tired of this guessing game.

 

I think I may have found some local yoga. Thanks for all these suggestions.

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Old 04-29-2012, 06:55 PM
 
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Here is another suggestion -- take care of yourself. Find ways to de-stress and love on yourself.  A firm dx, CBT, etc can help, but no one has the power to wave a magic wand and make all of this go away.

 

Peace


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Old 11-06-2012, 03:24 AM
 
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Dear Mom, My son was originally diagnosed with ADHD/ Anxiety, then it became Asperbergers, and all these crazing coding things. Finally after hours of sleepless research, I found a condition known as "Central Auditory Processing Disorder." It is known as CAPD and APD (just Auditory Processing Disorder).

 

The first initial sign of my son's difference, was the irregular sensory patterns, of having a fascination with how "Limbs work, such as Legs," then when I tried to take him to a movie, he would cover his ears. To this day, I can not step into a movie theater.

 

He had late development on speech and an some awkward body movements, such as running on his toes and flapping (this is why they wanted to peg him as Aspergers). After researching, I received a referral for an exam, which the exam may only be done by a certified Audiologist or a certified Occupational Therapist. Good News about this, is I was correct- He was CAPD, which is a treatable disability and over time, will make a huge impact on your child's behavior, educational goals and behaviors, the way they seek out "getting rid of," certain sensory discomforts, and so forth. My son was failing the second grade, because unfortunately this is a language based disability. However, after prayer to our God and therapy, my son has begun living a normal life and is making friends his age, as well as wanting to make friends, is willing to try anything, except for very spicy foods, and made the honor roll.

 

I urge most parents whom has a child that was diagnosed with these disabilities to check into this, especially if the child has undergone multiple ear infections or a rough delivery at birth.

 

Google Central Auditory Processing Disorder, Centers of Speech and Hearing, Auditory Processing Disorder, Kids Health, etc... These sites will provide much feedback. When you mentioned the covering of ears, this striked me in a large way. I will be praying for you and your family, and I am in hopes for a fast recovery or healing for your little one. Keep faith and hope, and don't let it get you beaten down. I almost had a nervous breakdown when I went through the process you are going through now. It is very hard, and sometimes, it seems as though others don't understand. I wish you well. Melissa L.

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