Still trying to decide what to do with this all...

[Stephenie]

DS had a brain injury at birth. The injury is to his thalamus, which controls motor skills, sensory (other than olfactory,) sleep and memory. He's had some muscle tone issues, small motor issues, a ton of sleep issues and a lot of sensory issues.He also had seizures, but has not since about 22 months of age. He saw the same neuro from about 30 hours old until 5 months ago when we moved from WA to TX. In WA, he also got OT from an awesome, sensory certified Ot who had been working with sensory kids almost as long as they've been recognizing sensory dysfunction.

So before we left WA, the neuro thought we should have him further evaluated because he thought something else may be going on...he suggested the schools, but we hit a wall there. I talked about it in old posts if you want to search, but basically the diagnostician was rude (said "EEEWW" loudly over the top of me when I described my son to her) and insensitive and then tried to diagnose him with Autism over the phone after about a 30 second description.

We also have hit walls trying to get him back into OT. Our old insurance covered it much better and the amount they gave us would cover like an eval and four sessions. Maybe.

So we were due for a neuro appointment and I found someone who had rave reviews online that our insurance covered. I was (probably too) hopeful that he could give us some guidance. He was friendly, good with my son, etc. Wanted to help us get back into OT and he noticed some reflex issues that may qualify him for better OT services through insurance, though these issues were minor, he thought he may be able to use it so Keagan can get the sensory therapy that had been helping him. So it seemed to be going well.

Then it's like he isn't listening to the issues we're worried about. Echolalia, terrible sleep, social skills and so on. He suggested just letting him watch TV when he wakes up...we tell him even if we owned a TV that it would not be safe because he once broke the toliet lid and generally is not safe unsupervised. He kind of laughed and moved on.

Then he starts in on how he's got ADD. Now the previous neuro, who as I said knew him for three years, and his OT, who spent two hour a week with him said he does not have ADD. OT explained how he will concentrate on just anything if you get him the sensory input he needed and that ADD kids can't do that. I feel like she really "got" my son. New doc hadn't even read through his medical records yet.

Anyway, after all this ADD talk, and my husband and I saying he actually has a pretty good attention span for a three year old (will read for hours) and being blown off, he offered meds and said he should talk about getting going on then at our next visit.

Do they really medicate three year olds for ADD? I just feel like it's so young for a med like that. Even if I thought he had ADD- which I don't- but even if I did, I wouldn't want to put him on meds at three. And I am not against medicating for ADD so I am clear... but at three??

So I am guessing that the doc is probably not a good fit, but I really had high hopes here. I really need someone to help me work with the issues he DOES have and listen. He is just so far off socially and emotionally from all this sensory stuff...and our old neuro was concerned that something else was off... and I want to get that sorted out.

I don't even know where to go from here. He had such great people working with him at home. He some help and so do we, he is having a really hard time these days and it's becoming more and more obvious that he's "different."

If you read this all, thank you, I really needed to vent. Any advice would be appreciated.

[Stephenie]

Sorry that post was all over the place. I was pretty frustrated when I wrote it. I still am, but I am a bit more calm.

I read the info the doc gave me on medicating for ADD, and the med that he wants to put him on is not even approved for kids under six! He's three! So we're done with that doc.

[Emmeline II]

I don't know if something like this is would be helpful for you, but we are waiting on an appointment here Center of Hope for Child Development - UT Health Science Center ...

[nayma]

i'm sorry your experience was so disappointing. it's really hard when our docs don't see our kids... i'm wondering if you've considered getting a referral for a developmental pediatrician? and since you mentioned autism, are you concerned he may be on the spectrum? if so, that makes a difference in the next step.

[Stephenie]

Emmeline II- Thanks for the link, I will check it out.
nayma- I am not sure what I think about ASD... he communicates too well for an Autism diagnosis, but maybe PDD-nos or AS? He's bright, verbal, but very awkward socially, has sensory issues, flaps his hands, toe walks and has some other spectrum-y behaviors. I am about 80% sure he's not on the spectrum but I do wonder at times. I was looking at developmental pediatricians last night, actually. My insurance only covers one in a 50 mile radius and she has terrible reviews, but I read a lot of good things about a guy who is out of network so I am going to find out what his fees are and see how much it would end up costing and if we could afford it. If not, I guess we'll try and see the one on our insurance.

[nayma]

yeah, by "asd," i included pdd and as. when you say he communicates too well, do you mean he has a good vocabulary, or that he really does interact in an appropriate back and forth kind of way. my daughter (4, AS) has a ridiculously huge vocabulary, but her ability to have reciprocal anything is really stunted. she also has huge sleep issues, sensory problems, and looks very add at times. i'm not at all saying your son is on the spectrum - only that i think some of the more verbal, "higher functioning" (don't like that term) kids often get overlooked when they're little. did he have any red flags as a little one - not pointing/waving by a year, not holding hands to be picked up, not responding to name, etc.?
good luck with this process. i hope the doc you end up seeing really listens to you, and really sees your son!

[chiefmir]

I'm so sorry for your frustration. A few thoughts- could you ask your previous neurologist to write a letter to any new neurologist you decide to see? something more than just h aving records forwarded. It might be a way for the other doctor to give some more information about his/her personal feelings about your DS' issues/strengths/etc. something that another medical doctor might take into consideration in a different way? and maybe your old OT could do the same for a new OT? I've recieved these letters in practice (like if we are evaluating a child who is already getting therapy or something) and it is very helpful to read another professional's reactions and impressions in a less formal manner.

Also, since your DS might have trouble getting services through insurance, have you thought about early intervention? (forgive me if I missed this in your post). Since he is three years old, it would be through you new home school district, and if he does (even barely) qualify for an autism spectrum disorder (PDD NOS and AS included) you would be entitled to free or relatively low cost services.

I hope things work out!

[sbgrace]

I would be so frustrated and upset.

Do his issues qualify him for medicaid (or is that the insurance you're talking about)?

[Emmeline II]

Originally Posted by Stephenie

Emmeline II- Thanks for the link, I will check it out.
nayma- I am not sure what I think about ASD... he communicates too well for an Autism diagnosis, but maybe PDD-nos or AS? He's bright, verbal, but very awkward socially, has sensory issues, flaps his hands, toe walks and has some other spectrum-y behaviors. I am about 80% sure he's not on the spectrum but I do wonder at times. I was looking at developmental pediatricians last night, actually. My insurance only covers one in a 50 mile radius and she has terrible reviews, but I read a lot of good things about a guy who is out of network so I am going to find out what his fees are and see how much it would end up costing and if we could afford it. If not, I guess we'll try and see the one on our insurance.

I forgot to mention that you will need a referral to the Center of Hope. We received one from our family doctor but it may actually be easier to have your old doctor sign the form (which you can print out online).

Asperger's is considered part of the spectrum; what separates it from Autism "proper" is that the child has normal cognitive and language ability. My ds could also be described as bright (his K teacher flagged him for the gifted program 2 weeks into the year), verbal, socially awkward, with sensory issues, flaps his hands (if otherwise forced to be still), and he periodically toe walks. His psychiatrist has diagnosed ADHD and is also considering Asperger's; it seems that she want to see how he functions on the medication and with CBT before being more definitive.

Is your insurance a PPO plan?

[Stephenie]

when you say he communicates too well, do you mean he has a good vocabulary, or that he really does interact in an appropriate back and forth kind of way.

Very good vocab and fairly good back and forth with adults. He does have issues with kids. He also only makes eye contact when he's comfortable, IE a quiet room. Like the doctor's office. Which sucks because the docs always say he makes acceptable eye contact. But if we're at a park, the store, a friend's house or even at home and he's having an off day, e he will not make eye contact. He is also good at tricking you into thinking he's making it. IE if you pay close attention, he is really looking at your forehead.

did he have any red flags as a little one - not pointing/waving by a year, not holding hands to be picked up, not responding to name, etc.?

He had some, but they were all also sensory red flags. Wouldn't walk on grass, get his hands messy, etc.

Also, since your DS might have trouble getting services through insurance, have you thought about early intervention?

He's three, so here that would be with the school district, I posted above, but the local school district is really bad... the special needs preschool diagnostician cut me off and said "Eeeew" really loudly over the top of me when I was describing my son to her. There's more to it, but after asking around, the program is really bad and unless he does get a diagnosis on the spectrum, they wouldn't serve him.

I like your idea to get letters from his old OT and neuro. That could be really helpful.

Do his issues qualify him for medicaid (or is that the insurance you're talking about)?

You know I never looked into that since we have insurance, but I will now.

Is your insurance a PPO plan?

It is, but it's got a ridiculously low amount available for OT. Less than a month's worth at the rate my old OT charged. I feel like using it would be worthless because we'd just build up a relationship with the therapist and then be out of money. Our old insurance covered OT as part of rehabilitative services, which worked with the brain injury. This insurance won't do that. The sad part is part of why my husband took the job he has is because it has "100% medical coverage" after a small deductible. We didn't look into limits like that though. If you had a "normal" child it would be great insurance. Sigh.

Thanks everyone, it's good to be able to vent to people who understand a bit of what I am going through.

[Stephenie]

Looked into the medicaid thing. Looks like we make about $400 a year too much.

[marge234]

I am so sorry you're going through all this.

I wonder if your former OT could find through her network someone sensory savvy down there to whom to refer you. Someone who would be inclined to work with you to get your son the services he needs--ie give you the diagnosis that will get what you need covered. A psyD, developmental ped, neuro, someone who "gets it." Or maybe there's an OT who would work with you on fees because you're paying out of pocket & don't quite qualify for medicaid?

I wish I had more.

[Stephenie]

My old OT didn't know anyone in the area- we moved 2500 miles. She suggested a website that showed sensory certified OTs but at that point we didn't realize getting coverage would be an issue. Our old neuro suggested a group not covered by our insurance.

I am going to try and find out some info on the next neuro we try before we go in- ask at reception their feelings on medicating three year olds etc.

[beachcomber]

Originally Posted by Stephenie

Emmeline II- Thanks for the link, I will check it out.
nayma- I am not sure what I think about ASD... he communicates too well for an Autism diagnosis, but maybe PDD-nos or AS? He's bright, verbal, but very awkward socially, has sensory issues, flaps his hands, toe walks and has some other spectrum-y behaviors.

My DD is high functioning on the spectrum. She's very verbal, very creative, and has all the same delays/problems you describe with your son. I was surprised she got the diagnosis but when I did more reading, it fit her. Autism and ABI are often co-morbid. Same with SPD and ABI. Your son may be on the spectrum because his brain injury affected the way his brain works, pushing him over onto the spectrum.

[Stephenie]

Originally Posted by beachcomber

My DD is high functioning on the spectrum. She's very verbal, very creative, and has all the same delays/problems you describe with your son. I was surprised she got the diagnosis but when I did more reading, it fit her. Autism and ABI are often co-morbid. Same with SPD and ABI. Your son may be on the spectrum because his brain injury affected the way his brain works, pushing him over onto the spectrum.

Thanks for the info. I am going to get him further evaluated when I can figure it all out.

[by-the-lake]

Originally Posted by Stephenie

Looked into the medicaid thing. Looks like we make about $400 a year too much.

There are state/federal programs, (Katie Beckett in my state), that are designed to assist children in your situation (making too much for medicaid but not so great insurance). Call your county and ask for it. Not sure if it goes by a different name in Texas, but somebody should know what it is.