Has anyone ever given their NP a list like this? (included inside)

[Ghee]

I have EIGHT years worth of "things" that concern me about DS. Basically, from infancy, there have been red flags. I could never get a dr to listen to me and refer me for neurological testing (basically they told me it was a stage, or accused me of causing it by babying him/giving in to him) Finally we found someone who said "Oh no. You need to get him tested." and referred us. I'm afraid I will get in there and be like a runaway train "there's this, and there's this, and this, oh and this"...not to mention I'm very stressed and emotional about this and I'm afraid I'll either blank out on some stuff or become over emotional and cry :( So I made a list, broken down by age, of the issues we've encountered. Has anyone done that? Did it help?

 

If you don't mind, can you read mine and see if you've had a child with any of these symptoms and what you found out?

 

As an infant:

Slept all the time. I woke him for feedings. Uninterested in toys/people, although he was good natured and smiled/laughed when someone interacted with him.

Aversion to feeding, except nursing. Did not willingly take solid foods (baby food) until after 18 months. Also refused bottle and sippy cups until that point.

Hit milestones several months later than his older brother and sister. Didn't sit on his own until 8 months, walk until after 18 months, didn't talk/babble until early toddler hood. Did make cooing noises before that age.

Was only happen when swaddled/held

Once he could sit, head banging began. Any time he was frustrated, he would beat his head against the floor or wall. He continued the head banging movement and body thrashing even when picked up and held. It took a long time to calm him down.

 

As a toddler:

Didn't potty train until nearly four. Older siblings potty trained at 17 months (brother), and right around 2 (daughter)

Has never had patience to be read to. Did not play/engage with toys.

Still wanted to be held all the time, but was squirrely and tended to flop around and butt his head against whoever held him

Still head banged. As he began to do less head banging, he moved into grabbing and pulling his eyelids/lashes, pinching or scratching himself, and clawing at his face/body. Again, only when frustrated.

Very poor eater. Did not gain weight. Was diagnosed as failure to thrive.

Had continual ear infections, received tubes before 2 years of age. The tubes stayed in much longer than expected because his body did not grow enough for them to fall out as expected.

Never developed a lovey at this age, did not want to play with toys. Mostly ran and climbed. Did not play with other children.

 

As a preschooler:

Still a very poor eater. Went to 3 year old preschool wearing 18 month clothing that had to be nipped in at the waist.

Was often sick with what he described as headaches. They came on suddenly, he would get very pale and vomit continually, the only thing that worked to alleviate was getting him in a cool dark room to sleep.

Was growing out of head banging, was more focused on pinching, twisting his skin. Still clawing at eyes, pulling at hair.

Was enrolled in a special ed preschool, but they entered him as a neuro-typical child and he didn't receive services for any ot, speech, or pt. I asked repeatedly that he be evaluated and was told that they thought he would grow out of that stage.

Spent 3 years in the special ed program (ages 4, 5, and 6 for a 3 and 4 year old class) as his teacher agreed he was not kindergarten ready.

At this age, he began to make friends easily and had many friends. He still did not engage in imaginitive play, it was all still running and crashing.

Was overly touchy, did not respect personal space.

Began to look for attention at home by aggravating and pushing boundaries.

Began laughing and smiling when disciplined. At that point, we thought it was a defiance issue.

Developed a lovey, sleeps with one particular animal nightly.

 

As a grade schooler:

Was held back from starting preschool until 6 years, 9 months of age. Was still one of the physically smallest, emotional/academically behind students in his class/grade.

Was described as kind and loving, but did not meet academic expectations.

His teacher said she never had discipline issues with him, but could not do the work that she asked of him unless she stayed at his side, sometimes holding his hand to help him write.

Learned to identify letters/letter sounds and numbers, but could not grasp 1:1 correspondence, could not read letter blends, or CVC/site words reliably.

Repeats words/sounds backwards. For instance, when the interventionist would say "Tuh - Ah - Puh", he wouldn't say "Top" but would say "Pot". When I would try to have him parrot a rhyming story I read him, he would invert the sentences "Jack and Jill went up the hill. Jack fell down and broke his crown." became "Jack fell down and broke his crown. Jack and Jill went up the hill."

Spoke with the kindergarten teacher near the end of the year and asked that he be referred for testing to allow for accomodations. Paperwork was filled but denied at the time, was told they didn't test kindergarten students for academic problems.

Still refuses, or does not know, how to identify shapes.

Has very shaky, light handwriting. Does not replicate shapes, letters, or numbers well at all.

Brought home over an hour of homework a night from 1st grade because he had nightly worksheets plus whatever work he didn't complete in class. This was even with him working one on one with an interventionist during both reading and math classes.

As of mid first grade: still did not read simple readers, could not do anything with math beyond counting out loud and identifying written numbers, still cannot identify shapes. His teacher and two interventionist spent most of their time sitting beside him and coaxing answers. They admitted that often they told him an answer because they knew he wouldn't get it.

Continued to pursue testing and was told that he had to fail 3 of the 4 nine weeks of the year before he would qualify for testing as a first grader. This would have put him at the age 8 years and 6 months, and almost in second grade before we could even begin testing him.

Was also told that many of the issues the teachers felt might be present (sensory/auditory/visual processing, dyselxia, etc... would not be diagnosed through school testing.) All we could hope for was a way to manage his issues, but not find out what caused them.

 

Headaches continued. Began to get worse. By mid first grade, he was coming home once or twice per week due to headaches and vomiting. This stopped once we began to homeschool. However, we also cut all refined sugars and he is able to sleep on his own schedule, I don't know how much each thing plays toward alleviating the headaches.

 

Has only recently developed an interest in toys like Imaginext, Legos, small figurines. He will play for a limited amount of time with them. He will not sit with anyone and follow simple Lego instructions, but will sometimes "free form" build happily for a while.

Cannot play even simple board games, between turns he rolls on the floor, runs around the room, bounces around, and cannot remember what he is supposed to do when it comes back to his turn.

Prefers high activity things like bike riding/skateboarding/swinging when choosing how to spend his time. Enjoys swimming but will spend two hours jumping off the diving board repeatedly and doesn't want to swim or play with pool toys.

Is easily frustrated and angered. He shuts down and refuses to do simple schoolwork if he's been told to sit down or be quiet.

Speaks, typically, in a high pitched baby voice. Often using one syllable words and baby like movements.

Still has issues with personal space. He, for instance, tried to climb in our dentist's lap at one visit and was stroking his face.

Does not give someone appropriate time to respond to him. For instance will say "Mom? Mom? Mom?" over and over with no time for me to say "What?"

Taps/knocks at things with a repetitive beat.

Still laughs/smiles when disciplined but will now duck his head or cover his mouth which is leading me to believe that he knows this is inappropriate and not the desired response, but has trouble controlling it.

Becomes obsessive about anyone he likes. Will want to call my stepfather at work every few minutes, talks about children he plays with to the exclusion of conversing about anything else, spends all day watching for them to come outside/begging to go ask if they can play, even when we try to redirect him.

Goes "full tilt" all day long, without slowing down, but will literally fall asleep mid sentence once he's in bed. Often wakes talking about the same thing he was talking about when he fell asleep.

Doesn't seem to grasp that everyone doesn't know everyone else. For instance, he will talk about a child he met out of town to people here as though he thinks they know this child. Is confused when it is explained that they have no way of knowing the child.

Reacts to public efforts to redirect out of control behavior (like saying "you need to hold my hand", or "you need to come sit down") by screaming no, laughing, and backing away from the adult. This is getting worse with age.

Is impulsive. Has had a chipped ankle bone, fractured ankle, and broken arm from doing things that would scare my other children (did a front flip off the top of an inflatable jumper slide, riding bikes at high speeds while trying to face upper body backwards, jumping out of a swing that was going as high as he could get it.) Each time, he did not appear to feel the pain and continued to use the broken bone without complaint. We do not feel that he feels pain like our other children.

 

This is much better spaced in Word. I'm sorry it looks so jumbled here. I tried to edit it as best I could.

Edited July 9, 2012 by Ghee

[Ghee]

Also, these 2 under grade school (263 character too long for the OP :glare:)

 

Has begun to make repetitive oral noises. Whistles or siren sounds mostly. Does the endlessly, appears to be zoned out during the noise making.

Since potty training, has had issues with keeping his hands in his pants, fondling genitals. In the last year, this has increased and begun to be a problem in public, up until then it was only at home.

[Jennifer-72]

I think a list is a great idea before an appointment like that.

 

I hope that your NP is able to give you all the answers you need. I am sorry that nobody has listened or helped you with your earlier requests for testing.

[ElizabethB]

:grouphug:

 

That is quite a list.

 

Have you tried gluten free, casein free? Or tested for food allergies or done an allergy elimination diet?

[RamonaQ]

You know, this kind of history is very helpful to a NP. I think you have enough questions that an appointment would be warranted.

[PeterPan]

Definitely it's a good thing to do!! You're getting a private neuropsych eval? Sounds like your school system has been totally worthless for getting help. Is your appointment coming up soon?

[Ghee]

Thank you for the comments. Yes, our Eval is with a private neuro psych. I gave up on the school altogether and pulled him to homeschool so we could pursue this on our own (the NP has told me this will be a series of appts and our school started getting ugly after a couple of absences, even with dr notes.) Plus, I needed to focus on his health and our other two were being ignored because they were good but average kids. The appt is tomorrow ... Yikes! I'm excited, relieved, apprehensive, hopeful, and worried all at once.

[Ghee]

:grouphug:

 

That is quite a list.

 

Have you tried gluten free, casein free? Or tested for food allergies or done an allergy elimination diet?

 

Yes. We've done all kinds of allergy and food sensitivity testing. We've been sent to pediatric gastroenterologists, endocrinologists, allergists, nutritionists, etc and were told "Well it must be something but his tests look fine."

[ElizabethB]

Yes. We've done all kinds of allergy and food sensitivity testing. We've been sent to pediatric gastroenterologists, endocrinologists, allergists, nutritionists, etc and were told "Well it must be something but his tests look fine."

 

:grouphug::grouphug:

 

I hope you get answers soon.

[PeterPan]

I worried I was being over talkative or over-informative when we did the initial talk with our np, but then I realized he would have done school observation and talked with the teacher. So what you're doing is definitely valuable and reasonable. Typing it up like that so he can have a copy speeds things on his end. His write-up will have a narrative of this stuff. The bummer is that after they do the testing over multiple sessions, you still have a wait before they meet with you and give you the results. That's the thing to psych up for. It's sort of like waiting for an overdue baby, lol. Find something to do during that time, and hopefully you'll soon have results! :)

[Ghee]

I worried I was being over talkative or over-informative when we did the initial talk with our np, but then I realized he would have done school observation and talked with the teacher. So what you're doing is definitely valuable and reasonable. Typing it up like that so he can have a copy speeds things on his end. His write-up will have a narrative of this stuff. The bummer is that after they do the testing over multiple sessions, you still have a wait before they meet with you and give you the results. That's the thing to psych up for. It's sort of like waiting for an overdue baby, lol. Find something to do during that time, and hopefully you'll soon have results! :)

 

 

Oh, yes, and I'm an impatient waiter. Sigh. Still, I took my oldest to a private neuro psych when he was younger, the appt took an hour total (and that was COUNTING talking to me!) and the report came in a week. It was utter garbage. No formal diagnosis but he "seemed" a little ADHD, he seemed "averagely" intelligent but no numbers given. It was worthless unless I had a teacher who wanted to sit him in the back of the class, that was the lone suggestion (make sure he sits at the front....thank you, Einstein!) So, I'll wait for a decent report (and remind myself that speedy may mean lesser quality.)

[cjbeach]

I think you'll find the list helpful when you're filling out all of the patient intakes. Definitely include your list in with all of the assessments you will have to fill out.

One BIG oops that happened with us almost happened because dh mistakenly told NP that ds had no words before 5 which was the ONLY factor excluding him from a Aspergers dx. When I went in for results they told me that and I looked at them like they had 2 heads:001_huh:, my ds lost his speech but it did return. He was delayed but he most definitely had speech at 5. I came home and showed my DH our son's PreK video with ds talking and singing. For the record, after that correction, ds had a 99 on the Aspergers assessment.

So our mistake was having my dh take ds to the first appointment because he was VERY fuzzy on dates and milestones. Milestone questions were HUGE.

You'll find all of the little details helpful you wrote out helpful!

 

Our NP testing was an hour initial interview, 8 hours of testing (but ds did it in 6) then an hour wrap up interview 2 weeks after testing completed.

Edited July 10, 2012 by cjbeach

[Ghee]

I think you'll find the list helpful when you're filling out all of the patient intakes. Definitely include your list in with all of the assessments you will have to fill out.

One BIG oops that happened with us almost happened because dh mistakenly told NP that ds had no words before 5 which was the ONLY factor excluding him from a Aspergers dx. When I went in for results they told me that and I looked at them like they had 2 heads:001_huh:, my ds lost his speech but it did return. He was delayed but he most definitely had speech at 5. I came home and showed my DH our son's PreK video with ds talking and singing. For the record, after that correction, ds had a 99 on the Aspergers assessment.

So our mistake was having my dh take ds to the first appointment because he was VERY fuzzy on dates and milestones. Milestone questions were HUGE.

You'll find all of the little details helpful you wrote out helpful!

 

Our NP testing was an hour initial interview, 8 hours of testing (but ds did it in 6) then an hour wrap up interview 2 weeks after testing completed.

 

I wouldn't even begin to consider what my husband might tell them. Probably that nothing is wrong, he is gone with work all the time and sees so little that he thinks it's just a discipline issue :glare:

 

Whoa, was it supposed to be an 8 hour DAY? Or did he do it like two 4 hour days, or four 2 hour days, or eight 1 hour sessions? I'll be sure to ask for clarification tomorrow, but I do wonder how most split it and is it once a week or daily or some other configuration?

[cjbeach]

Whoa, was it supposed to be an 8 hour DAY? Or did he do it like two 4 hour days, or four 2 hour days, or eight 1 hour sessions? I'll be sure to ask for clarification tomorrow, but I do wonder how most split it and is it once a week or daily or some other configuration?

Our testing was 3 two hour days but it was supposed to be 4 two hour days.

[herekittykitty]

I also think you did a great job with that list. It will be very helpful to anyone who evaluates him.

 

He sounds really sensory seeking to me - all the banging, crashing, not feeling pain as much as others etc.

 

I also think doing some research about specialized diets, supplements would be beneficial. It sounds like his body is off and that can produce a lot of these symptoms. I don't think many mainstream doctors buy into that, but I've read enough here and elsewhere to believe that they often work for the kinds of things you are describing. It's not easy. You'll have to do a ton of research and take charge of it yourself. Where I live there is a natural health clinic with a few DAN doctors that specialize in this. You could also look at the biology of behavior by Dianne Craft, and think about doing a high EPA omega if you aren't already.

 

Those are my thoughts. Good luck and hang in there.