What happens at an initial consultation with a developmental pediatrician?

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP here. I'm sorry - I can see that my language was insensitive but with a 3.5 year old boy, a part of me can't help but feel that various people - daycare providers, teachers, etc - are just overreacting and sending us on a never-ending "scavenger hunt" as one PP put it - one that is massively time-consuming and expensive. THAT is exactly what I fear. A hunt that leads to nothing but leaves my very young son A) fearful of doctors and B) with the feeling that there is something terribly wrong with him. And yes, I do have a strong suspicion of all of these "specialists" and the frequency with which certain disorders are diagnosed and yes, medicated.

That said, here are some specifics. DS is by all accounts perfectly normal - normal height/weight, hitting nearly of his developmental milestones for motor skills, cognitive, language, etc. For the past 6-9 months we've had some behavioral challenges and minor sensory issues that have emerged, along with a near reversal in sleep habits, from a perfect sleeper to an anxious kid who can't get himself to sleep and can't stay asleep without mom or dad right there. On the behavior side, he has issues with self-regulation and aggressiveness, especially when angry but also when he is simply overexcited/overstimulated. He hits, bites (occasionally), and will generally engage in annoying habits like poking at people, licking them, etc. When he is very upset he will even hit, bite or pinch himself. He is also expressing sensitivities to sound and generally hates pants with buttons/zippers and the like complaining they are too tight.

RE: sleep we have noticed some incidents that seem like sleep-walking, restlessness, etc. He also has allegies and snores, so sleep apnea or the like could be a culprit. He recently moved to a DC PCS PS3 class and his teacher mentioned some episodes of "zoning out" as she put it.

So all of this sent us to our ped, who referred us to Children's for an EEG and neuro consult (to rule out absence seizures), a sleep specialist, and an OT specializing in SPD. The EEG was inconclusive so they are now recommending an overnight EEG and a consult with a developmental ped.

So basically, I've gone from having what I felt was a normal kid to what the docs are now making me feel is a freaking crisis situation by referring me to every specialist under the sun. My son is bright and social, and aside from a few challenges is a normal, developing kid. The shit spiral I feel is my own as all of this is making me doubt myself and wonder where exactly I went wrong here. I am, as I said, HIGHLY suspicious of all of this, right or wrong. And I appreciate what all of you are saying about labels, but I don't buy it. Society DOES label kids, and it affects them. I have nieces and nephews in these situations and I have seen it affect their self esteem - and be used as a crutch - "I have ADD, so I can't XYZ." I've watched their parents do it, too - "Well, Susie does have ADD, so XYZ is really hard for her." I fear that all of this limits kids and is potentially damaging - especially with syndromes that are so nebulous. As the neuro MD said today, "All of this could also mean he's just being his normal 3.5 year old self." WTF? So why am I here then, exactly?

There. That's my whole life story. Sorry if I offended anyone. My question about what to expect at an initial consult still stands so I can prepare my kid for what to expect. Thanks.

My first thought when I was reading through this was absence seizures, so I'm glad they are pursuing this. Are they also doing a brain MRI? I don't mean to scare you because this is a very remote possibility, but behavior change plus blanking out would make me want to rule out a brain tumor. Again, very very unlikely, but its something they should rule out.

Honestly, your child is getting really good and attentive medical care and you should be grateful. It could be nothing or it could be something (not just developmental but maybe medical) and its great that the doctors are taking this seriously.

You had me until your last paragraph, and then you lost me. I have one child with AS and ADHD and another with ADHD and both are terrific students with NO self-esteem issues. I am sorry that your nieces and nephews were raised to think they were somehow inferior but thats not because of their diagnosis, its because of how their parents treated them. It isn't "society", I know because I live in "society" and my kids are doing terrifically. The whole label thing is just BS and leads to parents not taking care of their kids, I'm sorry. if you treat it as a diagnosis, no different from any other diagnoses, and you raise your kids to understand that this is one aspect of who they are but by no means the only defining thing -- as we have -- it isn't a burden. Rather, it becomes a useful tool for getting them what they need. Calling it a "label" and railing against all the professionals doesn't get your child what he needs.

I think you need to take a deep breath and calm down. Seriously, you are leaping ahead to all sorts of scenarios and, even more troubling, you are finding villains everywhere. There are no villains. There is just your young child who is going through a tough time and a team of doctors who are trying to help you.

Thanks. I work full time and have massive anxiety, so calming down isn't exactly easy for me. The neuro does not feel an MRI is in order at this point, and neither do I. I actually really liked her, so I'm not making her a villain. I just can't stand another effing referral at this point. I have a FT job and I have to work, so spending hours upon hours in hospitals and specialists office doesn't help my overall sense of anxiety. I feel like I have fallen down a rabbit hole and will never stop falling at this point. And yes, I suppose it's easy for all of you who are on the other side of this now to just say it's okay, deal with it - but for me it is effing hard. I'm sick of hearing negative crap about my kid and being made to feel that he could have any number of "diagnoses" which only increases my anxiety. The more we have to search around, the worse it will get for me. I'm sorry, but it's true. I am the one who will need to be medicated before this is over.

[Anonymous]

OP, a big hug to you. What you're going through sounds incredibly stressful. I would pursue the developmental pediatrician route given all the symptoms you're kid is dealing with.

This very well may be a chipping away at what the problem is journey versus the big reveal, you're kid has x,y,z.

Hang in there.

[Anonymous]

I have an initial consult tomorrow.our regular peds office has a dev Ped on staff. I am not sure what to expect, my questions are pretty focused, but am anxious nonetheless. I am thinking dc may have dysgraphia or maybe this is normal, my handwriting sucks, too. I have all the test results, dra,mra, nnat and examples of writings. Is this enough to bring?

[Anonymous]

I just posted, i am a new poster

[Anonymous]

Anonymous wrote:OP, a big hug to you. What you're going through sounds incredibly stressful. I would pursue the developmental pediatrician route given all the symptoms you're kid is dealing with.

This very well may be a chipping away at what the problem is journey versus the big reveal, you're kid has x,y,z.

Hang in there.

Thanks. And, I realize this probably makes me a big bitch, but I am sick to death of friends and family asking me about it. I just want to say - shut up already! When I know something, you will too. Until then, emailing texting and calling anxiously for some word from us only increases my anxiety and makes me not want to talk to you. Especially those of you whose kids are perfect and always eat their peas and always do exactly what you want them to and whose teachers talk about what a dream they are. Just, really. Saying you understand is just so not helpful.

[Anonymous]

Anonymous wrote:

Anonymous wrote:To answer just a couple of your questions, yes, I actually know a number of people who have received no diagnosis after evaluations or have been told that their child is a little anxious, or has some executive function challenges, but not enough of anything to receive a diagnosis. It is not my experience AT ALL that clinicians are quick to diagnose or medicate. In my own experience with psychologists and doctors, t they have been very conservative and careful. I, too, have a boy whose first three years showed no signs of any problems. He was always ahead on milestones, both physical and cognitive, and also very outgoing and social, who started to have serious problems in preschool. Believe me, I have been there: dreading the pickup and the relentlessly negative feedback from the teacher about my beloved child. It sucks. But these people really are here to help you. And again, in my experience, no one ever overstepped with a possible label. I, on the other hand, speculated about a lot of possibilities but my child didn't get the ADHD diagnosis until he was six and old enough to be given a neuropsych evaluation, which is more sophisticated and thorough than anything that can be administered at 3.

Thanks. Glad no one overstepped for you and I wish I could say the same. I had a daycare provider suggest my kid might have autism and I had to resist the urge to bitch slap her. When I told my ped that story she was like um, no. Other things maybe, but definitely not ASD.

How did you cope with the relentlessly negative feedback? It is so emotionally exhausting. I make my husband do pick up so I don't have to deal with it these days. On top of everything else, it is too much.

PP here. The daycare provider is totally out of line. It is completely inappropriate for someone so unqualified to offer a diagnosis. I would tell the director if I were you. You are in the worst moment of all, OP, not knowing the answers and the future, and probably struggling between wishing everything would go back to normal and fearing a horrible outcome. We have all been through this and can empathize. Still, OP, please be sensitive to the fact that you are on a forum that is filled with parents of children with ASDs and that your tone about that possibility is pretty hurtful.

How did I cope with the negative feedback... it was very, very hard. I tried very hard to have faith in the teachers and let them know that I appreciated their efforts. I think the more I "acted" this way, the more they listened to me and really grew to care about my child and eventually understand him. It took a long time, though.

I also found a wonderful therapist for my child and she has been like a therapist for the whole family. She completely gets my kid, did so from the very beginning, and seems to genuinely care about him. I trust her completely... and having someone knowledgeable to trust is absolutely invaluable in this process. She helps us with everything and is wonderful talking to teachers--I don't know what we would do without her (I know for some this trusted person is a developmental ped, for us it is a psychologist. Make sure you find someone.)

I also have tried very, very hard to understand my child. I like books so I read a lot, and that helps me empathize and understand how the world feels to him. This doesn't have to be about lowering expectations (as in your extended family's experience). It should be about finding ways to support your child to achieve his goals.

And last, I try really, really hard to maintain a positive and very close relationship with my child. Usually this means making time to participate actively in his particular interests and activities. Even when my child has had a horrible time at school, we have always been able to have a joyful homelife. I think every kid deserves this and I will fight for my kid's right to have a happy childhood! Plus, spending so much time doing his stuff reminds me of how creative and awesome he is, which in turn makes me very happy and proud of him.

This stuff is really hard, OP. I think most of us are fiercely protective of our kids and we get it. I guess the last thing I would say is to try to talk to other moms going through something similar. It is one of the added benefits of having your kid in therapy.

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP, a big hug to you. What you're going through sounds incredibly stressful. I would pursue the developmental pediatrician route given all the symptoms you're kid is dealing with.

This very well may be a chipping away at what the problem is journey versus the big reveal, you're kid has x,y,z.

Hang in there.

Thanks. And, I realize this probably makes me a big bitch, but I am sick to death of friends and family asking me about it. I just want to say - shut up already! When I know something, you will too. Until then, emailing texting and calling anxiously for some word from us only increases my anxiety and makes me not want to talk to you. Especially those of you whose kids are perfect and always eat their peas and always do exactly what you want them to and whose teachers talk about what a dream they are. Just, really. Saying you understand is just so not helpful.

I'm the PP who has a child with ADHD and another with AS and ADHD. OK, this is a problem. You have got to shut these people out, period. They are getting some sort of sensationalist thrill from your struggles. Do not humor them. Do not feel that you owe them information. You owe them nothing. Tell them its personal, end of conversation. (I've had cancer and you wouldn't believe the people who want every detail so they can feed off the drama. I had to learn to walk away). And by the way, this is you DC's personal information. not yours to share.

If your DC has something that needs to be diagnosed, the doctors didn't do it to him. It is what it is and what it always was. Not the doctors' fault, they are trying to help. And if you are so resistant to the "label" your DC will get other labels -- such as "bad" and "out of control". An actual diagnosis, which comes with a plan for treatment is far, far better.

[Anonymous]

Anonymous wrote:I have an initial consult tomorrow.our regular peds office has a dev Ped on staff. I am not sure what to expect, my questions are pretty focused, but am anxious nonetheless. I am thinking dc may have dysgraphia or maybe this is normal, my handwriting sucks, too. I have all the test results, dra,mra, nnat and examples of writings. Is this enough to bring?

new poster, next time start a new thread. in the meantime, how old is your kid? poor handwriting and reversals are very common for young kids

a developmental psychologist diagnosed our kid's dysgraphia so I'm not sure if a developmental pediatrician does

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:To answer just a couple of your questions, yes, I actually know a number of people who have received no diagnosis after evaluations or have been told that their child is a little anxious, or has some executive function challenges, but not enough of anything to receive a diagnosis. It is not my experience AT ALL that clinicians are quick to diagnose or medicate. In my own experience with psychologists and doctors, t they have been very conservative and careful. I, too, have a boy whose first three years showed no signs of any problems. He was always ahead on milestones, both physical and cognitive, and also very outgoing and social, who started to have serious problems in preschool. Believe me, I have been there: dreading the pickup and the relentlessly negative feedback from the teacher about my beloved child. It sucks. But these people really are here to help you. And again, in my experience, no one ever overstepped with a possible label. I, on the other hand, speculated about a lot of possibilities but my child didn't get the ADHD diagnosis until he was six and old enough to be given a neuropsych evaluation, which is more sophisticated and thorough than anything that can be administered at 3.

Thanks. Glad no one overstepped for you and I wish I could say the same. I had a daycare provider suggest my kid might have autism and I had to resist the urge to bitch slap her. When I told my ped that story she was like um, no. Other things maybe, but definitely not ASD.

How did you cope with the relentlessly negative feedback? It is so emotionally exhausting. I make my husband do pick up so I don't have to deal with it these days. On top of everything else, it is too much.

PP here. The daycare provider is totally out of line. It is completely inappropriate for someone so unqualified to offer a diagnosis. I would tell the director if I were you. You are in the worst moment of all, OP, not knowing the answers and the future, and probably struggling between wishing everything would go back to normal and fearing a horrible outcome. We have all been through this and can empathize. Still, OP, please be sensitive to the fact that you are on a forum that is filled with parents of children with ASDs and that your tone about that possibility is pretty hurtful.

How did I cope with the negative feedback... it was very, very hard. I tried very hard to have faith in the teachers and let them know that I appreciated their efforts. I think the more I "acted" this way, the more they listened to me and really grew to care about my child and eventually understand him. It took a long time, though.

I also found a wonderful therapist for my child and she has been like a therapist for the whole family. She completely gets my kid, did so from the very beginning, and seems to genuinely care about him. I trust her completely... and having someone knowledgeable to trust is absolutely invaluable in this process. She helps us with everything and is wonderful talking to teachers--I don't know what we would do without her (I know for some this trusted person is a developmental ped, for us it is a psychologist. Make sure you find someone.)

I also have tried very, very hard to understand my child. I like books so I read a lot, and that helps me empathize and understand how the world feels to him. This doesn't have to be about lowering expectations (as in your extended family's experience). It should be about finding ways to support your child to achieve his goals.

And last, I try really, really hard to maintain a positive and very close relationship with my child. Usually this means making time to participate actively in his particular interests and activities. Even when my child has had a horrible time at school, we have always been able to have a joyful homelife. I think every kid deserves this and I will fight for my kid's right to have a happy childhood! Plus, spending so much time doing his stuff reminds me of how creative and awesome he is, which in turn makes me very happy and proud of him.

This stuff is really hard, OP. I think most of us are fiercely protective of our kids and we get it. I guess the last thing I would say is to try to talk to other moms going through something similar. It is one of the added benefits of having your kid in therapy.

Thanks, PP. Great advice and I will try. And again, I don't mean to be disrespectful to parents of kids with ASD - it's just that it was so completely off base. While I do strongly veer towards wanting to be in denial, I know that something is off - but it's just not that. And she was so totally unqualified to even say that. On the drive home that night poor DH was like "do you think she has a point?" That alone made me want to punch her, because I knew the answer was no and the ped and neuro consult both totally dismissed that as a possibility. Just so not helpful and not even something we needed to think about. The reality is my DS is probably more ADD/ADHD, not that this silly woman would know the difference. And it's the people like her that make me worry about people labeling and stereotyping my child based on ignorance. I feel for all of you on here and I'm sorry if I'm coming off wrong. My first taste of all of this is leaving me reeling, quite honestly. I don't even know how you all do this.

What strikes me most about your post is this whole "team" thing. I'm trying really hard not to be negative about this stuff, but the idea that my kid will require some team of experts to manage him and his issues whatever they may be just kills me. I know it is irrational but that prospect, on top of this whole evaluative process, is just making me feel like a big fucking failure. I loved being a mom until about four months ago, and then it all started going to shit. Now, it feels like a job. The joy is just totally being sucked out of it for me. And I know that is wrong, too, and I'm trying to keep my brave face on for my son and not let him feel my anxiety, but it is really hard. I don't love him any less, and I don't blame him, and I'm not angry at him, but it does hurt, and I am scared, and it's really hard for me to hide it. I want to crawl in my bed and not come out.

Does this stuff end? I'm reading the posts here about the mom who is so burnt out and how hard it all is and just. . .yeah. I'm not cut out for this stuff at all.

[Anonymous]

On the endless negative feedback front, absolutely send your husband to do the pick up. I found that our daycare workers would rarely confront my husband with any negative feedback. They might say, "She had trouble settling for nap today," to him whereas I would get, "She refused to lie down and sat up for a HALF HOUR before she FINALLY gave up and went to sleep. You REALLY need to consider an evaluation for her. This behavior simply isn't NORMAL!!" And when I would ask for more information about the feedback -- was she disturbing anyone else (no), was she crying (no), what was she doing (looking out the window or rubbing her blanket on her cheek), did any of the kids not have their full nap because of her (no) -- I would say I really don't see the problem and then I would get a litany of she has to follow the rules and she wasn't following the rules and she never follows the rules. And I would seriously want to scream. So I sent my husband and if anyone approached me during drop off and tried to start the endless loop, I responded by saying, "Yes. My husband mentioned that Ms. Mary noticed she had trouble settling for nap. She's 3.5 so she is probably outgrowing her nap." Or giving a similar brush off comment.

My child is in upper elementary school now and we went through an evaluation process in 1st grade when her teacher was calling me every afternoon to tell me things like, "Your daughter told Joey that he is her boyfriend...and Joey doesn't want to be her boyfriend." I sent in a note changing the parent contact information to my husband's and explaining that I am often in court and not in a place where I can use a cellphone or have a private conversation so she should contact my husband with any further concerns. She, literally, never called again. We ended up having our daughter evaluated and our evaluation came back negative for any diagnosis. The evaluation actually said many very positive things about her. I enjoyed sharing the evaluation immensely.

[Anonymous]

On the demands of juggling this and a fulltime job -- you may not want this, but you can use intermittent FMLA to take sporadic days off from work for appointmtns etc. I work for a company that isnt known to be particularly family-friendly, but used intermittent FMLA to take care care of my child's needs, using days off here and there. Again, my hope is you go to see your deve ped and they tell you your kid is fine and you never have to go to an apt again -- but something to think about if this continues.

Also, try to control your anxiety if you can. Im a very anxious person too and have lost so much sleep over all this. Much of that insomnia has been an entire waste of time. Read, breath, walk, excercise, take a xanax if you have to. Cut out friends if you have to. Be kind to yourself.

[Anonymous]

OP, please consider getting a therapist for yourself. Your posts scream of not just anxiety but anger. You are suffering and you can't be much help to your DS if you are this wound up. You very strong emotions might get in the way of understanding what you need to do for him.

Of course things are difficult right now. Your DS is having some kind of challenge and you don't know what it is so you don't know how to help him. This is pretty much the definition of a stressful situation -- problem with no obvious solution. But you need to keep your eye on the ball. Having the results of a thorough evaluation with suggestions for treatments and going forward is THE way out. When you have a plan, you will feel better. And you will be able to help your DS. Again, you may be viewing this backwards. The problem is what is happening now. The solution is in the experts that you are so afraid of.

All of us here in the SN section know the stress of a child who isn't being helped and we also know how much things can improve with the right interventions. Get your mind around that and things will better. The current situation is untenable for you.

[Anonymous]

I have a therapist for myself. I am going to ask for anxiety medication. And I am trying, but I am angry. All of this has escalated since he began in a new school and I feel like it has gone from something manageable to a full-out problem. I feel like the school structure is so rigid and any kid who isn't immediately with their program is being labeled a problem. They are talking about school counselors and OT and IED's and behavior modification and all of this shit that just makes it sound like my kid is some terrible kid. Just once I'd like to hear someone say something good about my kid - how fast he learns, how funny he is, etc.

If I could, I would quit my job right now and pull my kid from school. I can't juggle all of the demands right now. I have three full time jobs - my actual job, my family, and managing this process. It's bullshit, and I hate it.

[Anonymous]

Its ok to be angry. But you'll be much better off once youre not angry anymore. At a certain point, you just cant be. The more you work it out, perhaps with a therpaist, the better.

``All this'' -- and they probably mean IEP, not IED -- is aimed at helping your child; its not b.s. If you dont htink its helpful, if you think this all made up by society, dont do it. If you feel its the schools fault, switch your kids school. You have options -- youre the one in control of the situation.

[Anonymous]

PP -- if you want to talk offlist, let me know. I was where you were at one point -- angry and pissed -- but it wil lget better and be ok. But again, hoping for you that there is nothing wrong and this can all be easily solved