Any advice for first Dev. Ped appointment? UPDATE - Mothering Forums

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#1 of 29 Old 05-06-2012, 08:52 PM - Thread Starter
 
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We suspect my DS (who will be 4 in June) has Aspergers. We have our first appointment with the developmental pediatrician on Wednesday. Just wondering what you brought or mentioned to your Dev. ped on your first visit. Also what sort of things can we expect that would make it a "good" visit?

 

We waited almost 9 months for this visit and I want to make sure we get the most out of it for DS.


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#2 of 29 Old 05-07-2012, 05:17 AM
 
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I'd write up a list of the reasons you suspect aspergher's syndrome.  Behaviors exhibited - even positive ones like if your child read at an incredibly young age or is talented in sports.  Write up your child's medical history now so you don't forget something.  Also, if your child is biological - write details of your pregnancy (full term vs. early, vaginal birth, pre-natal care, etc.).  Then write up a list of questions for the doctor  such as....

 

1.  Based on your observations and what I've told you, what therapies would you recommend.

2.  Are there any nutritional supplements or dietary changes you'd recommend.

3.  Is there any support systems you'd recommend in the school setting.

4.  Does the doc know of any support you can receive from the state or local.  Sometimes, they doctors know about some really cool programs for kids with special needs.

5.  Is it possible that there is a genetic component.  If so, would he/she consider ordering a micro array to rule in/out that possibility (make sure your insurance covers it as they are incredibly expensive - ours was $3k).

6.  Can he/she recommend a therapist for family counseling.  I've found this was the best question we ever asked.  Parenting our son is not what we expected and with the help of a behavioral therapist, we have been able to change our parenting style to better help our son be successful.

 

Good luck!  I hope you get the answers you need.


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#3 of 29 Old 05-07-2012, 05:39 AM - Thread Starter
 
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Ooh thanks spotted fox. I especially agree with the family counseling.


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#4 of 29 Old 05-07-2012, 09:10 AM - Thread Starter
 
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Spotted fox, do you think we should expect a diagnosis from the appointment? Just wondering if anyone got thier DX at the first visit? Sorry, but Im clueless!


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#5 of 29 Old 05-07-2012, 09:16 AM
 
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The first time we saw a developmental pediatrician we were given a tentative diagnosis because my son presents as being on the spectrum when you first meet him and then, after about 15-20 minutes, you realize that he may not be on the spectrum (we only recently ruled it out - after seeing a DP from the time he was 3.5 till 6.5).  

 

Depending on how your son presents and if it's obvious or if they want to do, say ADOS (comprehensive autism screening) testing they may say he's "at risk" or showing characteristics of something.


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#6 of 29 Old 05-07-2012, 09:41 AM
 
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Our first visit we did not get a dx. We were told to go get a neuropsychological eval. We sat and talked with his asst ( I think she was an intern or something) for a little over an hour. Then she went and talked to him for a bit then they both came in. He talked to ma about what William might have and why but told us how he really seems like he fits in a bunch of different boxes and not just one so that is why he wanted us to get the neuropsych eval. I would also bring any videos of things your child might do like vocal ticks, flapping, whatever you notice in him that has made you think he might have aspergers. 

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#7 of 29 Old 05-07-2012, 10:10 AM - Thread Starter
 
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Thanks - I do have videos of him flapping, vocal stimming, banging, laughing very loudly. I was going to bring them but they are so long and Im not sure she will get the right idea from them. Alot of times when he flaps or bangs his body into something it's because I did something to upset him such as not let him be in control of everything - or not play the way he wants me to.  Wow - that sound so silly to me having typed it out! But its a fear of mine to be judged as a bad parent because I cant keep my child happy.

 

Thanks again for the advice. I think I will edit out the parts where he is triggered and just show the stimming and such.

 

Spotted fox, unlike your child, my DS does not present as autistic at first glance. In new places he is like a little professor. Greeting everyone. Saying "my pleasure" or "glad to have helped" and such things. But once he starts getting bored or in need of attention all the autistic behavior comes out. So I am glad to find out that the appointment will most likely be a long one.


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#8 of 29 Old 05-07-2012, 10:51 AM
 
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I'd also make sure to have info and observations from any other adults in his life (school, daycare, sports, etc) and ask if there are any other professionals he or she feels it may be good for you to be referred to to help make the evaluation more clear.  Our developmental ped used a lot of info from the OT and a developmental psychologist and didn't make a final decision until all the info was in.
 


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#9 of 29 Old 05-07-2012, 01:26 PM
 
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I think everyone has great advice.  I think the key is to make sure you have everything written down so you don't forget.  Write down all the concerns, questions, issues, etc.  I would also try to write down your own observations about your DS (include the things that you are worried about as well as things he is good at, make you perhaps doubt that dx). 

 

I think showing some key videos are REALLY important since your DS will most likely not display all his behaviors during an eval.  You should totally not worry about the dev ped judging your parenting!  I had similar worries and the dev ped we saw actually talked to me a lot about the need to challenge our DS and encourage him to meet me half way sometimes even if he fussed out about it. 

 

The evaluation with our son happened over 4 different meetings and the doctor wouldn't venture a tentative dx until she had a chance to think things over and look at all her notes to write up her report for us.  Our DS was a confusing case and she actually asked us to come in an extra time so she could watch him play with me more. 

 

I hope you have a good experience and get some answers!

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#10 of 29 Old 05-07-2012, 09:17 PM
 
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I'd write up a list of the reasons you suspect aspergher's syndrome.  Behaviors exhibited -  .

 

 

I did this and the doctor LOVED it. I tried to keep it to one page. At the top I put her name and birthday. Then I grouped things by topic -- motor issues, social issues, etc. In each section I made a bullet  list.

 

I steered away from saying that I thought my child's dx should be, and instead focused on what I observed, *why* I was concerned. For example, I didn't say I think my kids has Asperger's, but instead said things like "I'm very concerned because she becomes overwhelmed by things that aren't stressful for other kids her age, and then acts out in unusual ways, such as banging her head into a wall over and over."

 

There are a zillion different labels, and some we are all more familiar with because they are more common. But it's quite possible that what ever is going on with your child is something less well known.   My DD has had evals at different ages with different results. At her first eval (age 3) they listed her delays and added "autism like behaviors."  We went for therapies related to the specific delays. She was eventually diagnosed with PDD-NOS, and later with Asperger's.

 

I feel like getting an eval is like taking a picture. It shows where your child is now compared certain benchmarks and a guess as to what that means. It would be nice if it told you more -- like what it means for their future. But an evaluation is no better at that than a photo of your child right now tells you what they will look like as an adult.

 

Good luck.


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#11 of 29 Old 05-07-2012, 09:57 PM
 
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I steered away from saying that I thought my child's dx should be, and instead focused on what I observed, *why* I was concerned. For example, I didn't say I think my kids has Asperger's, but instead said things like "I'm very concerned because she becomes overwhelmed by things that aren't stressful for other kids her age, and then acts out in unusual ways, such as banging her head into a wall over and over."

 

Yeah, this is a good idea. It seems like some doctors stop taking you seriously as soon as you mention the name of a condition.

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#12 of 29 Old 05-08-2012, 08:56 PM - Thread Starter
 
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Thank you everyone. Farmer Beth, I don't have any others who can testify to his behavior - but I do have his school district evaluation. Do you think I should bring that?

 

I will be working on the list tomorrow morning before we go. We had written down a huge long list,but it's not grouped in categories yet. Great idea Linda!


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#13 of 29 Old 05-09-2012, 03:46 AM
 
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I don't have any advice to offer, other than echoing what others have said (particularly about steering away from saying 'I think my child has x').
But I just wanted to say that I hope it al goes smoothly, and that it sheds some new light on your situation.

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#14 of 29 Old 05-09-2012, 05:09 AM
 
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Thank you everyone. Farmer Beth, I don't have any others who can testify to his behavior - but I do have his school district evaluation. Do you think I should bring that?

 

I will be working on the list tomorrow morning before we go. We had written down a huge long list,but it's not grouped in categories yet. Great idea Linda!

 

Bring everything you have - medical reports, school reports, the videos (don't edit - they may want to see it from start to finish).  Even well child visit reports if you have them (don't go out of your way to get them, they can request them from your pediatrician.  

 

Better you give them too much than not enough.  


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#15 of 29 Old 05-09-2012, 07:33 AM - Thread Starter
 
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Ok - thanks Farmer Beth! I'm getting everything together right now. The appointment is at 1 - so nervous! I'll keep you all updated!


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#16 of 29 Old 05-09-2012, 11:21 AM
 
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Good Luck!


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#17 of 29 Old 05-09-2012, 06:19 PM - Thread Starter
 
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We had our visit and I am so disappointed. We waited almost 9 months for this visit and all we got (initially) was that DS's problems were discipline problems!

 

Yes, the stimming and vocal stimming is because he wants attention. The reason he screams when we try to wash his hair is because no child likes getting their hair washed and "there are two of us and one of him, we should hold him down and force him to wash his hair". He should be forced to sit for 3 minutes and "yelled and and roughly placed down on the chair even if it hurts him a little" or be locked in his room for 3 minutes if he can't control himself. Oh and also this is our first child so we don't know how to discipline him.

 

I am so upset I've been crying all day. I can't believe I sat here for 3 hours this morning putting together lists and videos and then we walk in and she doesn't even look at them before deciding that we are just bad parents. Then when I tried to argue this point, she says "Well, let's see you only get an hour and I've been here with you for an hour and 15 minutes". Oh and of course - "I've been a developmental ped for 40 years, so I know better than you".

 

Why is every doctor visit I go to just like this? Why can't I get a doctor who cares? Is it just a New York thing? Ugggh I am so disgusted right now. I'm disgusted because somewhere deep down inside of me, I always wonder if we should be harder on him. But I just can't let him cry like that. This is so confusing for me.


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#18 of 29 Old 05-09-2012, 07:10 PM
 
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OMG, how awful!  I'm so sorry you had that experience.  

 

I hope you find someone with compassion soon who will give you some answers!


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Is this doctor in private practice or through a hospital? If the latter, perhaps you could complain to the hospital specifically that you did not receive the services you paid for.

 

As I've said too many times, a good evaluator will listen to your concerns, be eager to read your notes, appreciative of video, and patiently explain their opinion--in detail and in writing along with (at minimum) the names and results of the appropriate evaluations. It's time for this doctor to retire.

 

I don't know if you happened to read my post about my ds, but he had some extreme behavior problems in school (and unbelievable public and home tantrums), sensory issues, and pragmatics problems--his school basically told me that since he's smart and doesn't have a speech problem that he's fine; the family therapist pushed us to wait to step up to a psychiatrist. Ds was later diagnosed with severe ADHD by a psychiatrist and possible Asperger's by the hospital (his current school classifies him as Autistic for his IEP).

 

Quote:

 

These evaluations should include hearing and lead exposure tests as well as an autism-specific screening tool such as the M-CHAT. Among these screening tools are several geared to older children and/or specific autism spectrum disorders.

 

http://www.autismspeaks.org/what-autism/diagnosis


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#20 of 29 Old 05-10-2012, 05:07 AM
 
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OMG I am so very very sorry!  Please don't give up!  If this was private practice and he's a sole practitioner then let it go and find another one.  If he's in a group or hospital - get the administrator on the phone and raise holy hell and demand another appointment with a doctor who actually practices medicine instead of judging a parent.   I am so angry for you right now I could spit nails!


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#21 of 29 Old 05-10-2012, 05:41 AM - Thread Starter
 
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The Dr. is through Stonybrook hospital. You prob know where that is, Emmeline. I didn't get to read your thread, but I would like to try and find it.

 

After arguing with the Dr. for 15 minutes, she finally made known that DS has many ADHD issues and gave us the number to a psychologist. But this was after me breaking down and crying.

 

When I asked her why she didn't tell us that initially, or refer us to a psych originally, she said that the treatment is the same whether they are diagnosed or not. And she said the treatment is behavior modification. So basically, more discipline is the treatment for ADHD?

 

She did not do an M-CHAT, but with much compelling by me - looked at his school evaluation forms. She said - Oh he passed the ADOS. He's fine - and that was that! She didn't read the page where it says "he passes the intellectual part of the ADOS, but did not do well on the Social part."

 

I just wonder how long it is going to take to get DS help.


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#22 of 29 Old 05-10-2012, 07:17 AM - Thread Starter
 
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And heres what the results of the M-CHAT score that I just took online were:

 

My son isn't a toddler anymore (he will be 4 in June), but the results do place him at risk.

 

 

M-CHAT (Modified Checklist for Autism in Toddlers)

M-CHAT Risk Score: 6

This score suggests that your toddler may be at elevated risk for a developmental disorder such as autism. Importantly, most children identified as “at risk” by the M-CHAT do not go on to develop autism. This score simply indicates higher than average risk. It warrants an “M-CHAT Follow-up Interview” conducted by your child's pediatrician or other specialist.

For resources in your area, see our website's list of Autism Treatment Network clinics and state-by-state Resource Guide. You can also call or email our Autism Response Team: 888-AUTISM2 (288-4762); familyservices@autismspeaks.org.

This questionnaire is designed to screen for autism, not other developmental issues. If you have concerns about any area of your child's development or behavior, please discuss these concerns with your child's doctor.


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#23 of 29 Old 05-10-2012, 08:26 AM
 
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The Dr. is through Stonybrook hospital. You prob know where that is, Emmeline. I didn't get to read your thread, but I would like to try and find it.

 

After arguing with the Dr. for 15 minutes, she finally made known that DS has many ADHD issues and gave us the number to a psychologist. But this was after me breaking down and crying.

 

When I asked her why she didn't tell us that initially, or refer us to a psych originally, she said that the treatment is the same whether they are diagnosed or not. And she said the treatment is behavior modification. So basically, more discipline is the treatment for ADHD?

 

She did not do an M-CHAT, but with much compelling by me - looked at his school evaluation forms. She said - Oh he passed the ADOS. He's fine - and that was that! She didn't read the page where it says "he passes the intellectual part of the ADOS, but did not do well on the Social part."

 

I just wonder how long it is going to take to get DS help.

 

Yes, I know StonyBrook; I grew-up nearby--I sooo miss the beach orngtongue.gif...and the trees.

 

I posted that bit for the "this is what an evaluation entails" part, though I should have added that the M-CHAT wasn't for his age group. I would have expected the DP to conduct an evaluation similar to what you had through the school; you wanted a new/separate evaluation, not an opinion on the old one (that was just for reference). A DP of 40 years partytime.gif eyesroll.gif should understand that in six months a young child can change a lot or their abilities/behavior may increasingly deviate from the norm and become more apparent.

 

duh.gif It can be very difficult to get appropriate help on the mild end of the spectrum. I don't agree with the "it doesn't matter what you call it the treatment's the same" attitude; the symptoms of SPD, ASD, and ADHD may overlap but the causes can be different. For ex: with ADHD social issues are more related to developmental immaturity and impulse control -- so they are capable (eventually) but are unable to currently "perform" (immaturity) and/or will be able to perform when they are chemically balanced (medication). Wheras with Asperger's it's more of a social "blindness" and they're not likely to acquire social skills as typical children do--by "osmosis." My ds has all that going on; maturity and medication have helped the ADHD symptoms but he still needs a lot more help on social reciprocity and pragmatics (which is attributed to the Asperger's).

 

You can proceed the best you can on your own with the information you have; as he ages his symtoms will likely become more apparent as the range of "normal" narrows. Ds' DP told us that we didn't need the diagnosis (which was borderline for Aspger's) to use therapies we thought would be helpful to ds. It seems like OT for the sensory and ST for pragmatics may be the most useful right now. I'm not a particular fan of psychologists for ADHD and Asperger's; they usually aren't helpful in providing useful therapies for these diagnoses, and can't prescribe medication if necessary.

 

Legislation & Policy | LD OnLine

 

NY State Agencies

 

NY Department of Education-SpEd

 

I think I mentioned "From Emotions to Advocacy awhile back; if you haven't started on it yet I think now would be a good time to do your "master file: at least writing the dates on the bottom right in pencil (of all evalations, medical reports, etc.) and sticking them in date order in a binder (that's not too overwhelming smile.gif); if you're feeling ambitious you could also start an index in a simple word table with the date and document title in it.

 

I'd also consider posting "The recommendation they gave was to enroll him into an integrated NT/ special ed preschool at least 2 days a week. They think he will do well there." issue on Wrightslaw's parent hotline blog. The school district is required to provide FAPE (free and appropriate education), if they are recommending a special ed preschool then they should be paying for it. I have a thread to send you from another forum that is many pages of discussion of SpEd services in Suffolk districts which may offer something useful--maybe you can get a lead on a more competent DP.

 

One of yours:What happened at your pediatric neurologist evaluation? possible DX

 

One of mine: http://www.mothering.com/community/t/1252302/going-to-the-child-psychiatrist-tomorrow


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#24 of 29 Old 05-10-2012, 10:41 AM - Thread Starter
 
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Yes, it sure is beautiful this time of year.

 

And I agree that she should have done more of an evaluation. I kind of went in there expecting it. Boy was I in for a shock. DS's behavior has changed alot in the last 6 months. Apparently he has picked up more ADHD traits that are overshadowing our original concerns of ASD. But the ASD traits are still there. For goodness sake - DS started vocalizing "Baouw Baouw Baouw" fairly loudly while she was speaking to us. I can't believe that wouldn't raise any red flags. Yes, maybe she does need to retire - lol!

 

Reading about your son's experience, I can see how things are interwoven. For me, this is confusing. With sleep deprivation lately, I don't have much of a brain for trying to figure out which of his problems are related to Asp. and which are related to ADHD. I think he may be more like your son where there is a little of both on the social end. I feel that he has problems relating to and reading other children (ASP), and in frustration, this makes him more likely to approach them aggressively. (ADHD)

 

Not sure I understand this : I'd also consider posting "The recommendation they gave was to enroll him into an integrated NT/ special ed preschool at least 2 days a week. They think he will do well there." issue on Wrightslaw's parent hotline blog.

 

Thank you for the wealth of info - as usual!


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#25 of 29 Old 05-10-2012, 11:14 AM
 
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I am so, so sorry. Do not give up. All that work you did to prepare for the visit WILL be appreciated when you get in with a decent dev ped or neuropsych.

 

I got my recommendation for our dev ped from the local agency that handles therapies for disabled children under 5. There is some place near you that fulfills the same function (often affiliated with the hospital system). They will know the name of the best dev ped in the region. 

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#26 of 29 Old 05-13-2012, 04:22 PM
 
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I am so sorry you are having such a rough time with this evaluator.  I had difficulty with the first pediatrician we had evaluate my son (she assumed it his behavior was caused by my husband, as the stay at home Dad, being a poor parent but never met him).  I went back to the GP about it and she decided we were best to go straight to a child psychiatrist, as he didn't have any delays that weren't social.  For us it worked, even though we didn't get to the diagnoses we now have right away.  At least he was getting more thorough evaluations and access to treatment for anxiety, obsessive behavior and social skills.  Don't settle for less, keep trying for another developmental pediatrician, hopefully with a whole collaborative team, and if that doesn't work, psychiatry can be a good bet as at least they are MDs and can diagnose and prescribe if necessary.  In our location, both Tourette's and ASD can go through the mental health intake if a GP deems it appropriate.  It might get you past the over focusing on the cognitive end of things.
 


Busy keeping up with three children and an awful lot of chickens!

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#27 of 29 Old 05-15-2012, 07:32 AM
 
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I am so sorry for you. I have been following this post because we are also waiting... and my DD presents as though there's not much wrong but behavioral problems, too. So I have worried about this. Of course, all children, especially ones who are not being understood and helped, have behavioral problems, but if you know in your gut as his mother that it's not right, don't let go. That is what I am telling myself. I am so sorry for your wait and all the money. Don't give up. Maybe someone here can recommend someone who would be worth traveling to? Big hugs, mama. You will find that person.

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#28 of 29 Old 05-15-2012, 06:38 PM - Thread Starter
 
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Thank you everyone for the comments. I have found another Dev. Pediatrician who came recommended to me by an acquaintance who's son was recently diagnosed. This Dr. is within a different health care system and I was told she did a very thorough evaluation on the child. The appointment is a surprisingly short wait! So June 1st is the day! I plan on getting all the info to her ahead of time - the videos and previous evaluations... the list and so on.

 

Farmer Beth, if this Dr. doesn't help us I think I will go with your advice to seek out a Psychiatrist next.

 

I'll update you all after the appointment!

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#29 of 29 Old 05-16-2012, 08:26 AM
 
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Awesome news!  


Walking to raise money for Apraxia - feel free to join me if you are in the area or donate http://www.apraxia-kids.org/southjerseywalk/juliefoxx
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