Need somewhere to turn, about dd9- LONG and desperate.

[taximomfor4]

I've posted about my second dd a few times recently. Got to ask for ideas, now.

Some background: at 11 mos, we were told dd had gross & fine motor delay, Sensory Integration Dysfunction, and already knew about a kidney abnormality (that causes no problems).

By age 2, also found out she has a left eye choroidal coloboma (large one), a cyst in her brain (near the pineal gland, which doesn't cause problems according to the doc), and an abnormal EEG. The EEG showed "intermittent slowing", but didn't have enough or right abnormalities to be epileptiform activity. Basically, she has an intention tremor, poor proprioception (hates to tilt backward), poor motor planning, and occasional episodes. These episodes, either partial seizures or strange migraines, lead to her saying at grandmas one day: " Mommy, the floor is shaking." Put her on the couch, and ask if that's better. "Yes, but now the walls and couch are shaking." Take her home, she wants to go lay down on the FLOOR. Set her on sleeping bag, she lays down, then sits up, vomits, lays back down, sleeps for 2 hours, wakes up fine.

Oh, and once she says the floor is shaking, she either can't or won't walk. The neuro gets mad at me because I don't know which...but I don't, because she won't even try to walk.

Anyway, that hasn't happened in a while. She is getting dizzy spells these days, though (remember the Irish Dance comp a week ago, when she had a bad day??) Less dizzy this week, but still mentions it.

Well, she began reading (shockingly) by age 3. In K, read at a 3rd grade level. Each year, inched up just a teensy bit. Now, most way through 4th grade, her reading level is only 4.1. So technically, her grade has passed by her reading level!

She gets in trouble because when she reads or hears directions, she concentrates and tries to get started, but has a difficult time making sense of the directions. So she is "Too slow getting started." We've confirmed that she is paying attention, not fooling around. She just can't convert instructions into actions.


She gets Word Searches very, very oftne for homework. She can't do them. They take FOREVER. Don't know if it's her mind (like the instructions issue) or her blind spot from the coloboma. She also cries EVERY TIME she gets a fill-in-blanks assignment. EVERY TIME. She can't read a sentence with hole in it, and get a feel for what TYPE of word to look for.

She cries. EVERY TIME she is learning something. Math homework that she is just learning, she cries while we help her. Dance, which is her passion. She cries when learning a new step. Not in class, but at home when practicing it to get it right. See, it takes her like hundreds of repetitions to get it. So in class, the first day they learn the new step, she is the worst, but memorizes it. Then at home she does it over, and over till she has it down pat before the next dance class. But she cries. takes a break, comes back, and tries. Then cries, takes a break, comes back, and tries.

She just got contacts to try. Her prescription is way to thick, so the contacts are heavy on one side. They fall off her fingers (which tremor, remember, and have bad motor coordination)> The eye doc gave her a pair with no prescription in them, to use for a week, to build confidence before getting her heavy ones. She cried and tried ,cried and tried for 1 1/2 hours at the eye doc office (finally succeeded). At home each day, she cries throughout...but tries again, cries again, tries again and gets them in. EVERY DAY.

We think she is getting worse, not better. Prepuberty moodiness? don't know but I am sooooo worried sick. We keep having meetings at the school. but she isn't failing so they don't care. Don't know, my gut says she needs a dx...that we're missing something. I don't know about the "spectrum", butshe is great at making eye contact and talking to people (even spoke very early) so I think that's excluded.

Who do I go to next? Who can help us? We're near Cleveland...what type of doc, testing, do we get an advocate for school, and how? With no diagnosis, they won't help us.

 

[alizesmom]

Neurologist, geneticist, nephrologist, developmental pediatrician would be good places to start. Possibly an endocrinologist. When you say doc, I'm not sure if you mean a regular pediatrician or someone else. I would bet that you find her problems to be connected some way. Good luck whatever you decide. Karen

 

[Tess'smom]

I feel so bad for her and you. I am sure that this is so stressful for the both of you. Do you have a Children's Hospital nearby? Are you happy with your Neurologist? My daughter was having many seizures, delays, motor skill issues and having a wonderful Neurologist made all the difference in the world. I hope and pray that she gets better soon.

I guess since she is not behind in her academics, from what you say, the teacher and the Child Study Team does not see a reason to test her. If they did test her, would she probably woudl test within normal ranges in language arts and math? Could you talk to the teacher about some accomodations with testing w/o a child study team evaluation? For example, could she do tests w/o fill in the blanks? Good luck and keep us posted.

 

[taximomfor4]

OP here. She's had nephrologist, ped neurologist, ped opthalmologist, regular ped, endocrinologist (found nothing so never saw him again....it was because she is very, VERY short. Size 6/6x at almost 10, but thicker built, not skinny). Has seen 2 geneticists since age 2. Also had PT and OT starting at 11 mos old, and through the school as well at ages 3-5.

She is, I would say, behind in math. And I KNOW she is behind in reading. Just not behind ENOUGH to be of concern (struggles for C, not failing). But falling behind more each year, especially considering where she began.

IQ tested at age 6. She was above average, so she SHOULD have the aptitude to do very well. To struggle to maintain average grades is strange for such a hard worker.

I wish I knew what could cause the difficulty with making sense of intructions. And I wonder if her reading level is still progressing but she isn't able to understand the questions on the tests (or isn't even properly comprehending what she reads). She is an EXCELLENT speller.

Beth

 

[belle&beast]

OP here. She's had nephrologist, ped neurologist, ped opthalmologist, regular ped, endocrinologist (found nothing so never saw him again....it was because she is very, VERY short. Size 6/6x at almost 10, but thicker built, not skinny). Has seen 2 geneticists since age 2. Also had PT and OT starting at 11 mos old, and through the school as well at ages 3-5.

She is, I would say, behind in math. And I KNOW she is behind in reading. Just not behind ENOUGH to be of concern (struggles for C, not failing). But falling behind more each year, especially considering where she began.

IQ tested at age 6. She was above average, so she SHOULD have the aptitude to do very well. To struggle to maintain average grades is strange for such a hard worker.

I wish I knew what could cause the difficulty with making sense of intructions. And I wonder if her reading level is still progressing but she isn't able to understand the questions on the tests (or isn't even properly comprehending what she reads). She is an EXCELLENT speller.

Beth

I am a preschool SLP, but I have worked ith older children in the past. If her IQ is quite high and her achievement is below what would be expected, she could very possibly have a learning disability. Many learning disabilities do not show up until about 4th grade because children are "learning to read" and then suddenly have to "read to learn." Kids have to be pretty independent at this age and it is a big change from previous years. So if she has difficulty with reading comphrehension that can be a big sign.

Also, she sounds like she struggles auditorily and needs lots of repetition to learn. I would ask for a psychoeducational evaluation through your school system to test IQ and ability areas as well as a speech-language evaluation to look into auditory comprehension. Good luck!

 

[taximomfor4]

I am a preschool SLP, but I have worked ith older children in the past. If her IQ is quite high and her achievement is below what would be expected, she could very possibly have a learning disability. Many learning disabilities do not show up until about 4th grade because children are "learning to read" and then suddenly have to "read to learn." Kids have to be pretty independent at this age and it is a big change from previous years. So if she has difficulty with reading comphrehension that can be a big sign.

Also, she sounds like she struggles auditorily and needs lots of repetition to learn. I would ask for a psychoeducational evaluation through your school system to test IQ and ability areas as well as a speech-language evaluation to look into auditory comprehension. Good luck!

We've requested the evaluations, in writing. They called me in for an I-team meeting but fought me and didn't test her. They made up a "plan" instead, although nobody followed it.

It's frustrating. Her art grade is AWFUL. The art teacher ran into us at church yesterday, and said Rissa's not finishing on time. Yeah, DUH. She said "She's such a perfectionist." The art teacher is completely missing the truth, Rissa is NOT a perfectionist. She takes forever to figure out what she's supposed to be doing, how to get started, and then her fine motor skills have always been awful. So where do I turn now?

 

[Biscuitsmom31]

How does she do socially? Does she relate well with her peers and make friends easily?

 

[belle&beast]

We've requested the evaluations, in writing. They called me in for an I-team meeting but fought me and didn't test her. They made up a "plan" instead, although nobody followed it.

It's frustrating. Her art grade is AWFUL. The art teacher ran into us at church yesterday, and said Rissa's not finishing on time. Yeah, DUH. She said "She's such a perfectionist." The art teacher is completely missing the truth, Rissa is NOT a perfectionist. She takes forever to figure out what she's supposed to be doing, how to get started, and then her fine motor skills have always been awful. So where do I turn now?

Get a Parent Advocate. If you requested testing in writing and it has not been done within the timeline, they are in violation of the law (at least in my state.) And they are in violation of whatever type of plan if they did not follow that -was it a 504?

 

[mamacate]

Hi there,

This is a bit of a shot in the dark but it does sound a lot like non-verbal learning disability. See these links for more information:

http://www.nldontheweb.org/
http://www.nldline.com/
http://www.nld-bprourke.ca/

I wish you all the strength in the world.

C

 

[taximomfor4]

Get a Parent Advocate. If you requested testing in writing and it has not been done within the timeline, they are in violation of the law (at least in my state.) And they are in violation of whatever type of plan if they did not follow that -was it a 504?

At the end of the school year, when we got the report card and sought explanations, we found out they weren't following the plan. I called them on it, and they told me "It wasn't a 504, it was just an intervention PLAN." I looked more closely at my signed copies, and indeed it was labeled such. NOT a 504. They told me she doesn't even qualify for an IEP, since many needs doesn't qualify -- has to be a "qualifying diagnosis." Her huge team of docs haven't come up with one though.

Is it a neurologist or a psychiatrist or whatever, that I need to find? Our neurologist washed his hands of us after he sent us to a geneticist. The geneticist can't decide if there's something chromosomal (all tests were negative, but many don't have tests yet). He wants to see her again at puberty, when new markers can appear.

BTW, she couldn't learn to swim. Nor could she learn to ride a bike (too many things to concentrate on at once, I guess. Plus she seems to always be unsure of balance).

As for socially, she gets along fine, that we've noticed. But she definitely gets really frustrated, stomps to her room for alone time VERY easily. And cries SUPER easily. I think she has learned to control the crying at school, she used to get made fun of for it. But at home, she melts down constantly. We've always figured "No day is complete till Rissa cries at least 3 times." ESpecially cries easily when first into a new place/situation. Like a dance competition. LOVES being there, but always cries within the first hour or 2 even though NOTHING is wrong (even if she hasn't even danced yet). We figure it's a release, from her sensory overload. Maybe it's more?

 

[taximomfor4]

Hi there,

This is a bit of a shot in the dark but it does sound a lot like non-verbal learning disability. See these links for more information:

http://www.nldontheweb.org/
http://www.nldline.com/
http://www.nld-bprourke.ca/

I wish you all the strength in the world.

C

I just read up on this today, on a whim. At first it sounded just like it. EVERYTHING fit, but then I started reading necessary accomodations. If dd has this, it's not quite so bad that all those accomodations make sense.

 

[mamacate]

Definitely keep looking into it then. Like AS, it's one of those things where "if you've seen one kid with NLD, you've seen one kid with NLD." The way it expresses itself and the level of disability varies WIDELY. I'm not sure it's the right diagnosis for my son, but he only fits with part of it, and a lot of the deficits don't apply to him at all. I've heard that from other folks whose kids have this diagnosis too. The way the different books and web site talk about the disability varies widely.

I stumbled upon this book at B&N on a business trip last week, and it definitely portrays a story of a girl with high abilities but lots of challenges that sounds a lot like your daughter. You might find it interesting--she talks a lot about her process of finding a diagnosis.

http://www.amazon.com/Children-Nonv...bs_sr_6?ie=UTF8&s=books&qid=1208192657&sr=8-6

C

I just read up on this today, on a whim. At first it sounded just like it. EVERYTHING fit, but then I started reading necessary accomodations. If dd has this, it's not quite so bad that all those accomodations make sense.

 

[eternaldisneyfan]

It sounds like she might have some extreme anxiety. That any new task completely overwhelms her with a paralyzing fear of failure. And every time it isn't perfect that fear of failure is exacerbated until she breaks down. I agree that she probably has some sort of learning disability but I also think she has anxiety.

 

[taximomfor4]

It sounds like she might have some extreme anxiety. That any new task completely overwhelms her with a paralyzing fear of failure. And every time it isn't perfect that fear of failure is exacerbated until she breaks down. I agree that she probably has some sort of learning disability but I also think she has anxiety.

Very interesting, and adds quite a lot to think about. Makes me think of when we are at a restaurant or dance competition. She needs to use the restroom. I can tell her, while pointing, "Walk straight there, and go right. There's a sign right by that window." She looks, starts to walk, then turns back around and tells me she doesn't understand what I mean.

 

[bookwormde]

Just wondering has she ever had a CAP test (central auditory processing). Since when we read, we essentially “talk to ourselves” this can give good information. If this is an issue then it would make any visual scanning deficits or difficulties create a situation that could be extremely difficult for her.

I have a niece who is sub-clinical aspie who has some less severe indications from motion like your daughter. She can get nauseous or migraines with little apparent reason though I suspect is in part being hypersensitive to light, motion, inclination and vibration. Orientation sensitivity variance can be both a difficulty and a benefit. I can walk into a room and instantly feel if the floor is the slightest bit out of level (less than 1/10 of 1%). It is an odd feeling to describe but it is almost like you feel like you are leaning and might fall over. I have learned to intellectually ignore it once I realize what it is. Vibration can also cause this to a lesser extent. This can be persistent long after the initial event and can have an impact on equilibrium (much like when you have been on a boat for a long time and you get onto dry land but it still feels like it is moving). If she is receiving any OT services have them “create” these types of situations and observe her during and after and log her next day or 2 to see if there is any pattern. Additionally my niece describes being “weak” during these episodes. I would love to tell you that she has nailed it down but she has not (and is not overly accepting of her aspieness). She is 19 and a double major at collage but still needs to hibernate when this occurs. I could see where any visual issues could make this worse.

I assume that her neurologist has been monitoring the cyst regularly to make sure there have not been any changes.

You might try making a stand to support her arm at the wrist at the mirror where she puts the contact in so she can for the most part, bring her eye to the contact. I have always had a minor “tremor” in my hands when trying to do highly detailed work and this type of support helps greatly with precision.

University of Kentucky (medical department/hospital) I believe has a good program on neurovarints and may be able to help or direct you.

She is a girl so crying is a normal response to stressful situations and persistent anxiety, boy would be getting mad and trying to break something.

If there are things that are stressful for her because they are manifestation of a medical condition then they should accommodate her for them (or not do them at all). The last thing they should be doing is raising the stress level to the point where co-morbidities start to occur.

With girls they become very adept “actresses” at very young age and have much greater social skill basis solely because of gender. The real analysis is how much effort does she have to put into being in “community” social situation. Since the social skills component of ASD is only one of the gene groups she may have some others and therefore not meet the clinical definition (like my niece). This is why the PDD diagnosis is so often used. Even if she is not on the spectrum she may benefit from having a clinical work up by someone who specializes in spectrum issues, and they may have some good suggestions or therapies, which other clinicians may not.

Just because she is near, at or ahead of grade level does not mean that she is getting an appropriate education (one of the great misconceptions many educators have). Her proper place for her abilities may be a grade or 2 ahead.

Again if she has not had a CAP test (the school ED should have known to recommend this years ago) then that would be the first try.

Oh yea most spectrum people have somewhat different “brain scan” results particularly with the new real time ones that can differentiate during different activities.

Hope this helps al little

bookwormde

 

[WheeledTraveler]

I definitely thought on NLD when reading this. I have LD-NOS that presents very closely to NLD (Pretty much everything, except for the fact that I have too good a sense of direction to get the diagnosis). Some of your daughter's symptoms remind me very much of myself at her age. And for the record, intelligence really doesn't have anything to do with it. I managed to cope quite well on my own until college which was the point at which things fell apart and I actually got tested and diagnosed.

To get it diagnosed you need a neurpsychologist's evaluation. If you can get the school to pay for the evaluation, do so as it's very expensive ($2000-3000). Insurance doesn't cover it unless there's a "medical" reason for it to be done (tumor, TBI, etc.) and learning disabilities and ASD don't usually count. There's some debate about whether NLD is on the AS, just so you know.

As far as some of the other stuff, I'd suggest finding a new neurologist if at all possible as it sounds like the one you are seeing is discounting her problems or just doesn't want to deal with them. Finding a good neurologist can make a huge difference, but can take quite a bit of time.

Is there any particular reason for the contacts other than because she wants them? I'm mostly just asking because I had contacts for a few years, but gave them up due to the problems I had putting them in. She sounds like she has similar problems to the ones I had at the time (I have other physical issues that mean that I really wouldn't manage it now) and really I decided it wasn't worth the extra 20-30 minutes every morning just to avoid glasses.

Good luck!

 

[taximomfor4]

Is there any particular reason for the contacts other than because she wants them? I'm mostly just asking because I had contacts for a few years, but gave them up due to the problems I had putting them in. She sounds like she has similar problems to the ones I had at the time (I have other physical issues that mean that I really wouldn't manage it now) and really I decided it wasn't worth the extra 20-30 minutes every morning just to avoid glasses.

Good luck!

She is trying out contacts so that she can hopefully have a tiny bit more improvement in her vision. The vision field defect (due to the coloboma) can never be corrected, but they try to give her the best vision they can. Glasses get her CLOSE (about 20/50), but contacts can give a bit more improvement on, I guess, depth perception, etc. I don't know if she'll manage the contacts or not, but she is giving it a shot. (Eye doc was just biding his time, till SHE asked HIM. She's been begging for months now, so he's all for trying them).

Hey! DH tells me dd got her practice contacts out all by herself yesterday, in just a couple of minutes! WIth him not helping, only standing by! And she'd gotten one in quickly (on first try), and the other took several minutes of trying and only ALMOST crying. Hope they work out for her. Contacts always bothered my eyes.

 

[bopper]

FYI as far as contacts go: My neurotypical DD was 12 (going into 6th grade) when we got her contacts. At first, it took her 30 minutes to get them in. Slowly slowly she got faster and faster and now of course there is no problem. Just to let you know many people have problems with contacts at first.

 

[LisainCalifornia]

Just wondering has she ever had a CAP test (central auditory processing). Since when we read, we essentially “talk to ourselves” this can give good information. If this is an issue then it would make any visual scanning deficits or difficulties create a situation that could be extremely difficult for her.

I have a niece who is sub-clinical aspie who has some less severe indications from motion like your daughter. She can get nauseous or migraines with little apparent reason though I suspect is in part being hypersensitive to light, motion, inclination and vibration. Orientation sensitivity variance can be both a difficulty and a benefit. I can walk into a room and instantly feel if the floor is the slightest bit out of level (less than 1/10 of 1%). It is an odd feeling to describe but it is almost like you feel like you are leaning and might fall over. I have learned to intellectually ignore it once I realize what it is. Vibration can also cause this to a lesser extent. This can be persistent long after the initial event and can have an impact on equilibrium (much like when you have been on a boat for a long time and you get onto dry land but it still feels like it is moving). If she is receiving any OT services have them “create” these types of situations and observe her during and after and log her next day or 2 to see if there is any pattern. Additionally my niece describes being “weak” during these episodes. I would love to tell you that she has nailed it down but she has not (and is not overly accepting of her aspieness). She is 19 and a double major at collage but still needs to hibernate when this occurs. I could see where any visual issues could make this worse.

Sorry to barge in, but this is so interesting to me! My daughter (who is 11) has auditory processing disorder and Aspergers syndrome. She also suffers terribly from migraine headaches--caused mostly by times she is over-tired or overstimulated. If I don't give her the migraine medication quickly enough, she gets very sick to her stomach and will throw up. I have always wondered if there was a connection between her migraines and her other issues.

To the OP, my daughter has many of the same issues that yours does. She also has never learned to ride a bike and can't do many things that people take for granted. Her balance and coordination are very poor. She also cries from doing word searches (4th grade was terrible for us because there was enought word searches to choke a horse!) and trying to learn new math concepts.

We discovered she had a processing disorder when she was in the first grade, but always knew we were missing a big part of the puzzle. The Aspergers/autism dx came later. Unlike your daughter, though--my girl struggles most of all with social issues and interacting with other children, and I realize you don't have that issue. That is sort of a hallmark issue for kids with Aspergers.

Good luck,
Lisa

 

[ireland_nicole]

So sorry to hear of your difficulties; keep hanging in there! You're not alone!

I would second the idea of both a good neuropsych eval (it gives a lot of info re: potential learning dis., etc.) and a visit to a developmental pediatrician. Also, has she had a CAT scan or MRI? It might shed some light as to whether there's any pituitary involvement re: growth; although I'm sure the endocrinologist looked at hormone levels... also, consider seeing another neurologist. Just because one doesn't think there's something they can help with, doesn't mean that another won't look at things another way.

My thoughts are with you
Nicole