Results of Ped Consult - Referral Dev. Ped

[khaoskat]

We had our consultation with our Pediatrician today regarding concerns with DS2. On the way there, we made a hand written list of issues and a few examples of things. I know looking back we forgot a few things, but will remember them for later now. The sheet was a legal sized pieces of paper almost 3/4s or more full of our notes.

Reading through some of the stuff, before we even talked, she said she was able to start seeing a pattern. She couldn't think of quite the right word to use, but mentioned "tactile" issues. I was reluctant to say anything, but I spoke up and said "Sensory or Sensoral" and she was like " Yep that is the word I am looking for".

The issues we had down were things like 1) Eating issues - getting very pick and hard to find things he will eat; 2) Sleep issues (or rather lack of sleep) - multiple night wakings; sometimes hard to get down to bed at times; 3) Mouthing/Licking/Chewing Issues; 4) Transitional/New Places Issues - gave 3 minor incidences a) Transitions to new Speech Therapists can take 2-3 months to get done - will refuse/fight to go; hides under chairs; physically carry him back, etc; b) Great wolf Lodge - wouldn't go into the breakfast place - ran and clung to a banister on the stairs; c) what happened when we took him to look at his new school for next year; 5) Hiding/hording food. These are just a few of the things we had down; 6) Loudness - he likes to be/talk loud, but does not like loud noises/places. I think there were a few more, but cannot remember them and she kept our list.

So, she is referring him to a developmental ped. Unfortunately the group where we live will not see children over the age 4, so we are going to have to travel to Cincinnati to the group down there. He just turned 5 yesterday. She is basing the referral on the sensory issues; oppositional defiance since we have issues getting him to do his time outs, etc; sleep issues - specifically the potential need for a sleep study.

I explained we came in because we wanted to start getting the issues addressed, as they are not going away and new things are popping up as his speech gets better. There are a few things we still agree that are probably related to his speech that I didn't list above, but we want to start the process before kinder, so we know how to work with things this fall.

[Linda on the move]

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How long do you have to wait to see the developmental ped? Have you read The Out of Sync Child?

[khaoskat]

No clue how long the wait list is down there. I know where I live, it can be up to 6 months.

Our Ped said the minute we get the forms, fill them out ASAP and return them ASAP via fasted mail possible.

[2boyzmama]

Do you not want to go to Dayton Childrens? Tenecwalker just got her son in really quick, 7 weeks I think? She was surprised, because it took 6 months to get her first son an appt. So apparently they weren't as backlogged when his referral got there. I'd see if it's possible to put a referral in at Dayton and at Cinci.

We've been to Dev Peds at both locations. We see Dr Kasten at Dayton, and LOVE her!!! Tenecwalker sees Dr Amisola (I think that's the name) and really liked her too. We see Dr Wiley at Cinci and again LOVE her. So far we haven't had a bad experience with Dev Peds, and I haven't heard anyone else from Dayton or Cinci say they've had bad experiences. So that's good at least!

[2boyzmama]

Wait, I just realized you might be saying that Dayton Childrens doesn't see kids over 4...if that's true, I didn't know that! Is that true of established patients, or just new referrals? I guess I need to go research!

[tenecwalker]

Like Sam said both Ryan and Luke see Dr. Amisola at Dayton Children's and we have been very happy with her. You may want to double check the age 5 thing, because Ryan just saw her (2 days after he turned 5) and they did not mention that he would not be able to be seen again. We actually made an appointment for him to go again in 6 months. It does typically seem to take awhile to get an appointment, but hopefully you will be surprised. I would suggest asking your reg. ped for a referral for Occupational Therapy, because that is what the dev ped will recommend if she thinks it is a sensory issue. That list can be a little bit of a wait as well and the OT will do their own Sensory testing anyway.

[khaoskat]

We were told they wont take new patients over the age of 5. If you are an already existing patient and turn 5 I believe they keep seeing you. I have been told this by both Dr. Wingate today and also by a friend who is doing is 1st year of residency at CMC in Dayton.

Tenecwalker - was this Ryan's first appointment or is he an already established appointment?

Due to circumstances right now (being due Mid May, it would be much easier to do it in Dayton vs Cinci, especially in case I go into Labor on the way their or back, since I labor so fast I would deliver on I-75).

No referral made for OT, although we are already in the system at Dayton CMC for his ST.

[tenecwalker]

No his first visit was in August so he is already a patient. That sucks that they don't take new patients over 5. I would ask about the referral to OT, so you can get something started while you wait to see the dev ped. Did EI ever evaluate him for sensory issues?

[khaoskat]

No, they never did evaluate him through EI, and neither is the school district. They are more worried about possible ADHD with him last time we did his annual IEP (last May). No clue what the concerns are going to be this year, and we wont know till after they have their IEP meeting on 4/9. DH and I are not able to go because I have Court that morning and he will have 2 kids to watch. Hopefully the teacher will fax over a copy of the IEP to our house after the meeting. I am not wanting to fight to much right now, as we seem to be gearing up to fight them about refusing to assign him to a school this fall, so we can apply for Ed Choice. We are not able to get a firm date on what school assignments will be made and parents notified.

I think GDMS will be better for him this fall, especially if he has OT needs, as they incorporate that stuff in the classroom and materials anyways on a regular basis. Not only that, but after they tried to push for ADHD last year, I fairly sure they will try to push it this fall when he is on the move/go in Kinder and not a little desk drone.

A lot of the things we are seeing are emerging in the last year or two, but when you look back (like with his always wanting to chew) you can see it back when he was a baby.

With his chewing on things, we always passed it off when he was a baby as teething. But looking back, he was always wanting to chew on things....fingers, toys, etc.

[tenecwalker]

EI did a sensory eval on Luke, so I was just wondering if they had done one with him too. It seems like people that are not knowledgeable of SPD often do suspect ADHD. If DP is anything like our school district they won't give any OT for sensory issues anyway. They will only modify the environment if necessary. I know what you mean about the things always being there, but not seeing them until you think they should be outgrowing them but they don't. It was basically the same with Ryan, but we started realizing it when he was 3. Things got worse and worse instead of better.

[Fay]

That's really odd that you are not being allowed to schedule the IEP at a time when you and your DH can be there. Remember, you can call a new IEP if this one is not satisfactory.

It's great that you're getting things started for a private eval. I suggest getting a hearing test also, since it's usually fully covered by insurance, and hearing loss can explain loudness as well as certain ADHD behaviors. Our speech therapist told us that some children can hear some frequencies but not others, which would explain why a child can respond to his name but not develop speech efficiently.

Best wishes on your continuing journey.

[Polliwog]

Did the pediatrician really say oppositional defiance? That's really over the top.

Good luck with getting the evaluation. If your insurance will cover it, I'd get an OT evaluation in the meantime. My son loooooooves OT. It's like going to the Little Gym for free.

[khaoskat]

Originally Posted by Fay

That's really odd that you are not being allowed to schedule the IEP at a time when you and your DH can be there. Remember, you can call a new IEP if this one is not satisfactory.

It's great that you're getting things started for a private eval. I suggest getting a hearing test also, since it's usually fully covered by insurance, and hearing loss can explain loudness as well as certain ADHD behaviors. Our speech therapist told us that some children can hear some frequencies but not others, which would explain why a child can respond to his name but not develop speech efficiently.

Best wishes on your continuing journey.

The only day they offered was April 9th and gave 3 time slots. I didn't realize till I got home from dropping him off at school and looked at the calendar that I was already booked for Court at 9:30.

I told the teacher next time I saw her, and she basically just wanted to go forward with the meeting without us, because it was the only time they could get all the IEP team members together.

DS2 has had a hearing eval, but it was when he was 2, so about 3 years ago, when he first was evaluated privately for his speech issues. I did ask the school to test his hearing, since he had trouble passing the hearing test they did at the 4 year old well child check up last summer. But, I am being told he passed that as well.

[khaoskat]

Originally Posted by Polliwog

Did the pediatrician really say oppositional defiance? That's really over the top.

Good luck with getting the evaluation. If your insurance will cover it, I'd get an OT evaluation in the meantime. My son loooooooves OT. It's like going to the Little Gym for free.

Yes, she did say possible ODD, because of the difficulty getting him to sit time outs. We put him in time out, or tell him to go sit a time out on the stairs, and he runs to his bedroom and lays in bed and cries/pouts or sits in the hallway upstairs doing the same thing. When he finally comes down from it, we still make him sit his time out. But again, if he is having sleep issues, which we suspect because he is up several times through the night and restless, it could be the cause of the ODD. (We went through the same thing with DS1, when we suspected sleep apnea - snores like a freight train; always tired during the day; hyperactive at times; and when he stayed with a friend (at the time a 4th year med student) when I had an emergency C/S for DD2, he told us DS1 would stop breathing at night and snort and gasp and it would wake our friend up); oppositional defiant at times. Finally got the sleep study and he was average an apnea episode an hour.

[Polliwog]

How old is your son? Because that sounds like many children when they are told to be in time out. Just watch an episode of Super Nanny. ODD is a serious disorder. One that a pediatrician is not nearly qualified to suggest.

[joensally]

Originally Posted by Polliwog

How old is your son? Because that sounds like many children when they are told to be in time out. Just watch an episode of Super Nanny. ODD is a serious disorder. One that a pediatrician is not nearly qualified to suggest.

I'm really concerned by the number of threads around here lately with docs throwing ODD around.

OP, can you afford an educational consultant? They usually charge around the same rates as a master's level counsellor, or less. This person could attend the IEP meeting in your stead, although I think you should check to see if it's even legal in your jurisdication for them to hold an IEP meeting without a parent. Either way, we used an education consultant briefly and it was a great way to fast track the process of understanding what DS needed and what was available.

SPD is not in the DSM and it's OTs who do the scales and testing. DS has SPD and we've seen two peds and other docs with varying familiarity and acceptance of SPD.

Two cheap, quick ideas that worked for us: fish oil and melatonin. Melatonin is widely used and believed to be very safe in kids. We use a berry flavoured liquid, 1.5 mg in a bit of water before bed. Helps them get to sleep and stay asleep, thus dramatically improving daytime behaviour.

As for timeouts, neither of my kids could consistently do timeouts alone and they produced a lot of anxiety. Timeouts were always in a shared space, and often I would sit with DS through his TO. It's really just to break up the action so that the child can refocus and make better choices. Not taking a TO is so very far from what real ODD is.

Have you had his vision checked by a developmental optometrist? Dev opts can spot things often missed by regular optometrists. There are a number of parents on mothering who have had children going through the diagnostic wringer and have seen substantial change when a subtle vision issue was corrected. DS has strabismus/convergence insufficiency, and the behaviour sypmtoms mirror the ADHD symptom list. Surprise, surprise when we dealt with the vision issues the ADHD talk at school diminished.

Has his hearing been screened by a nurse or audiologist? An audiologist does a more thorough exam.

Have you explored allergies? Allergies can also cause sleep and behaviour issues.

[txbikegrrl]

You are a member of the IEP team we call them ARD committees here in TX. And IMO the most important one! Tell them you want to be there and need to reschedule do not take no for zn answer. They are required to make 3 attempts before proceeding without you but three attempts on the same day is dubious. I have a feeling his annual will be out of date the next day but that's their problem not yours...

[khaoskat]

I have posted numerous times about the issues with him, but here are a few:

1) Loudness issues: a) He is very loud in everything he does - we are constantly (at age 5), reminding him to lower his voice to conversational level; b) He does not like loud places/noises - does not like the vacuum

2) Eating issues - He is getting so picky it is very difficult to find foods he will eat. He will eat only one type of Brat - has to be the ones from Sam's Club and will not eat any others. He wont eat most meats - he will eat steak if I grill it out on the charcoal grill. One day he will eat pasta, the next he will absolutely refuse it and melt down over it. Basically I have to be a short order cook at every meal every day for him. 95% of the time he wont eat the same foods as anyone else at the table. He also wont eat most of what is served to him at school for lunch. Sometimes mealtime becomes a battle to get him to eat anything other than drinking his milk.

3) Hiding/Hording food - We are finding that he has been hiding food in various places in the house. Usually it is more junk food/snack food stuff - like the powder for the chocolate/strawberry milk mix; boxes of cereal; peanut butter crackers; peanut butter jars.

4) Mouthing, Licking, Chewing Issues - He has a need is the best way to describe it, to mouth almost everything and his iron is fine, so it is not pika. He will put tires from his toys in his mouth, he put money in his mouth, he will put small toys in his mouth, he will chew on anything he can get into his mouth. In the past he has also chewed his food till it is liquified, including meat. He will find a rock and either put it in his mouth to chew on or lick it. He will lick people, he will lick shopping cart handles. He has recently taken to sucking or putting "hickies" on his arms or other body parts.

*Right now he is chewing/mouthing the eyes on an Mr. Potato Head Baby.

5) Styrofoam/Paper cups - he will use his hands, teeth and mouth to rip them apart when he is done with them.

6) Does not do well with change or strange places - 3 recent examples:
a) Speech Therapist changes - usually takes 2-3 months to adjust to a new therapist. We start out with a struggle to take him to therapy and get him back to the room - have had to carry him back a few times. Then we move to we get him there fine, just to have him start hiding when he knows it is almost time and then we have to pull him out from under the chairs and drag him back. Eventually, we get to where it is simple to just bribe him with something (ie you can take this book with you and work on it while doing ST), to where he goes back on his own. We do have a few regressions even after the adjustment period.
b) Recent visit to Great Wolf Lodge - he absolutely wouldn't go into the breakfast place to eat. We got to the place, and he just turned around ran and grabbed a hold of the railings that go downstairs. It took us about 10-15 minutes to get him to go in and eat.
c) Took him to new school for this fall - He is already familiar with it, as his brother goes there. He goes into the main building fine, interacts with the kids there fine. We tried to take him into the 3-6 building/classrooms and it took us spending five minutes outside of the building to get him to go in. Once inside, he clung to DH and I for about another 5 minutes, while his brother was showing him some things. Eventually his brother got him to go try some stuff and we were fine.

7) Recent example of an incident - We were at his school's family night. The chairs were not placed to his liking, as the row was not perfectly straight and connected together. No matter how many times we tried to stop him from moving them about until they were to his satisfaction. DH just had to remove him from the room for several minutes till he refocused and was no longer fixated on the chairs.

8) He refuses to wear socks most of the time, unless you force him to. If you put him in pants that button/fasten, he wont keep them button/fastened and zipped.

9) Often times complains about being cold.

10) He often times needs more supervision than my 2 year old does.

11) Very impatient on everything

12) He wont poop at school, because he refuses to wipe himself.

This is not all. He is 5 years old now.

[Polliwog]

I would definitely request a change of IEP date in writing. They have to make arrangements for you to be there (could be over the phone althought that's not preferable.) If they aren't supporting that, then go to the supervisor of special education. There is no way that a report could communicate what you know about your son and parents help write the IEP. An educational advocate could be helpful, but it doesn't replace parent input.

I know all of this is tough to deal with. We just wrote my son's first IEP two weeks ago and I'm still reeling from it. And the team was extremely supportive. And I've been in probably 75-100 IEP/IFSP meetings in my work life. But when it's your own child and a school system that's bound by so many rules, it's hard.

[khaoskat]

Originally Posted by txbikegrrl

You are a member of the IEP team we call them ARD committees here in TX. And IMO the most important one! Tell them you want to be there and need to reschedule do not take no for zn answer. They are required to make 3 attempts before proceeding without you but three attempts on the same day is dubious. I have a feeling his annual will be out of date the next day but that's their problem not yours...

I am picking my battles with the school district right now. Of the two battles, I think getting the school placement for next year is a bit more important, as without it, I can not get the application in for Educational Choice. We only have 14 more days to get the application completed and turned in. Without the Ed Choice Voucher, we wont be able to afford to get him out of our failing public school district, and into a different school.

With him in the private school, a lot of the stuff on the IEP will change for next year. The school already does many of the things on a daily basis they have on it currently with all the kids.

I did put back to them, that I am not available on that date and time, as I have a previously scheduled Court Hearing at 9:30 that could last as long as 1 1/2 hours. I have left the ball in their Court. I have never "given them permission" to hold the IEP meeting without me.