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    Joined: May 2013
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    My 6-year-olds school either seems to be utterly confused/clueless or just apathetic about getting the services he needs added to his IEP. Around his 4th birthday, he got an IEP but only for speech. Back then, when they evaluated him, the OT predicted that he would have big troubles with handwriting in school (because of the effort required to write neatly) but he would never qualify for OT because he doesn't have an educational disability. I thought this was ridiculous at the time but didn't really fight it. Fast forward a couple years and now he is in first grade. Last year in K, I took him to a neuropsych hoping to actually get a written diagnosis of DCD so that the school would stop fighting me about OT (and possibly PT) and actually do something. The neuropsych gave him a Grooved Pegboard Test and the result was abysmal. I believe well under the 1st percentile. Then he gave him the visual motor integration test (Beery?) and his score was about the 65th percentile. I asked how he could have such hugely discrepant scores on two different fine motor tests. The neuropsych got out his WISC IV scores and explained that his nonverbal IQ score is very high and therefore he will appear average on any motor test that has a mental component. His perceptual reasoning score was 99.7th percentile but he said that's an underestimate because it included block design which involves fine motor. DS uses his strong visual-spatial ability to compensate for his poor motor skills--so any physical test that has a mental component he will score average on. Any test that is purely physical, he will get poor results (like the pegboard). That made sense to me and explains DS's hugely discrepant scores on motor skills tests throughout history, depending on what test he is given. It is true, anything that involves mental or visual spatial ability, like copying shapes, he does fine on. But transferring coins from one hand to a tray or screwing pegs into a board quickly--forget it.

    While I'm happy DS is using his high mental ability to compensate for his low physical ability, the school is using this against him. His handwriting is appropriate for his age (albeit on the messy end of things). DS seems to be able to write very well for about 5 min. and then he gets tired, it's too much work, and he gives up. Five min. is about the time it takes to do an observation or assessment. I'm wondering if anyone has dealt with this type of thing, or an ignorant school system that doesn't seem to know how to qualify kids for services. What disability category should we try to qualify him under? Physically Impaired? Other Health Impairments? DS was in an accident and had a traumatic brain injury last winter and his vision was severely affected. While he has 20/20 vision, his eyes do not track moving objects, really at all. For a while one eye was "stuck" and had no tracking ability at all (sixth nerve palsy) but this seems to have resolved. But tracking moving objects is still impaired. I believe his vision tracking was at least somewhat impaired before, due to the DCD. I'm not sure how much worse it is now. I am wondering how much this visual issue is affecting his ability to read (seeing all the print), and his motor skills. While they were poor before, they are worse now (and we have documentation of that--he was in private OT and PT last summer and they exited him because he was doing so well. Now he is back in).
    Also, I'm not sure what to ask for in terms of the giftedness. The neuropsych wrote in the report that it should be addressed by the school. What would they do with a kid who can understand long division, but has motor skills like a preschooler. A kid who can read 4th grade level chapter books, but can't write a report about the book or draw a picture? I think grade or subject acceleration would be completely inappropriate, but that's all the district offers for K-2nd.
    Also, if anyone has any ideas about his speech, that would help too. It is slow and dysfluent and he has an odd prosody and pitch. He sounds kind of like Mickey Mouse and has ever since he was a toddler, but the high pitch is gradually improving. The speech therapist doesn't seem to know how to deal with this. She knows how to deal with articulation and language issues, but not speech output issues like dysfluency, prosody and pitch. He was under the first percentile for articulation at age 3, but now it is average. So she wants to drop speech from his IEP and thinks pulling him out is a waste of time. The neuropsych recommended that he keep getting speech because he will be bullied if he keeps talking the way he does.

    Anyone have input about any of these issues? Sorry this is so long.

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    Is he hyper mobile? Does he have low tone? There seem to be a disproportionate number of kids on this board with connective tissue disorders, all of whom have 2e type issues (as far as I recall), a diagnosis of which is purely physical and might get him accommodations on those physical grounds? It might be worth lookin up hypermobility syndrome and Ehlers Danlos Syndrome (and maybe marfans) just to see if any of it fits. Might be wayyyyyy off base there.

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    He could qualify TBI...traumatic brain injury. And then in the paperwork somewhere you need to note that unless school assignments or writing tasks will only take 5 minutes out of his whole day for the rest of his life any observation or assessment needs to realistically mimic the actual workload task found in school, such as an essay expected to be completed in 45 minutes of straight writing.


    ...reading is pleasure, not just something teachers make you do in school.~B. Cleary
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    Thanks Sweetie and MumofThree. I wondered about hypermobile joints, and he does have them, but I don't think they are that severe. I have them as well, for instance my fingers and elbows. I'm getting PT for a broken elbow and the PT keeps referring to my elbows as "weird" since they naturally bend in strange directions. DS also has hyptonia but it's not severe. Stranely, he met motor milestones like sitting, crawling, and walking as an infant on time.

    DS has a chromosomal disorder (balanced translocation) that runs in our family (I have it as well)--the docs act like it's completely obvious that some of these issues like hyp0tonia and the DCD are from that (he has a possible Chiari 1 brain malformation as well), but the school criteria doesn't even address that. They would say that's a medical diagnosis, not an educational diagnosis.

    So hard to say in what way exactly, the TBI impacted him and how much it is just the DCD/hypotonia and the fact that he didn't get therapies for a year, therefore regressed. Plus it didn't help that he was kept out of recess/phy ed for months.

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    If he has chiari malformation, low tone and hypermobility you need a formal EDS assessment. And EDS absolutely warrants accommodations.

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    Is chiari associated with EDS?

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    Never mind I looked it up. I just don't think that his hypermobility is that severe. however, I have wondered about tissue problems since he was an infant. When he was born his ears were folded in half and they stayed that way for a few days. They are/were unusually soft and can be rolled up like a tortilla. He has deep dimples in his shoulders (but his father has some "depressions" in the same spot that I don't see on other people). His teeth were notched, like someone took a saw and irregularly sawed off the ends of some of them.

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    The photos of hypermobility available on the web are pretty severe. I second (or third) the recommendation to look into a connective issue disorder. I have EDS and my son has an appointment in two weeks with a geneticist to see if be has it. He also had tortilla ears when he was a baby! Now they look normal but remain very foldable like mine. It can actually hurt a bit if we sleep on an ear wrong. Strange huh?

    So yes unusual joints in parent and child, DCD, and possible Chiari,
    are all linked to EDS (and maybe other connective tissue disorders).

    I would go to ednf.org and look for a recommendation on a good specialist to go in your area. There is a message board similar to this one.


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    Thank you. I need a referral for everything but will talk to his pediatrician. He did see a pediatric geneticist several times between the age of 2 months and 2 years and she could never find anything besides the translocation, which we had him tested for right after he was born and was always told (by geneticists/genetic counselors) it wouldn't be a problem since it's familial. The geneticist thought the dimples in his shoulders are basically a birth defect--a problem with tissue development plus how he was positioned in the womb. Who knows. She never gave me an explanation about his baby teeth but they became more normal as he grew and most of the notches filled in. Luckily the two permanent teeth he has look normal.
    I know I was pretty severely deficient in Vit. D while pregnant so I sometimes wonder what role that played in some of this.

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    blackcat, I have some questions - they may be in somewhat random order, but here goes:

    Does your ds have a diagnosis of DCD from the neuropsych?

    I think there are two separate things you are attempting to advocate for - services for ... and accommodations for handwriting. I would try to look at these separately in terms of how you advocate, even though the physical/neurological cause of the challenges is most likely related.

    I would also recommend that you separate out what you need/can request from school and what your ds needs for life. There is going to most likely be a limit to what you can get at any point in time from school, but you also want to be sure you're getting your ds the remediation he needs now and that you understand the accommodations he will need now and in the future so you can have a path set up to get him where he needs to be on time, rather than lagging behind because you are fighting the school and hoping for them to carry the full load of getting him there. It helped us to have a plan laid out that let us look forward knowing where our ds would need to be in high school and as an adult re accommodations when he was still in early elementary, because we were able to move in that direction from the beginning rather than playing catch up. There are a lot of things for handwriting accommodations you can do at home such as practicing typing whether or not your school is on board yet.

    Re accommodations - you should be able to receive these with the diagnosis of DCD. Even though your ds' IEP may be for a different diagnosis/challenge, you would roll the DCD accommodations for handwriting into the same IEP (or at least that's what you would do in our school district). If he doesn't have an IEP, you would apply for accommodations under a 504 plan.

    "What would they do with a kid who can understand long division, but has motor skills like a preschooler."

    You would use a computer or iPad or some type of keyboard to type out the long division problem. There are a number of different options for doing this. If the school doesn't have a keyboard or computer or whatever that allows your ds to do this to show his knowledge, you can request that you send one in with your ds if you have one you're willing to send it. There are many different ways parents can get around this access to AT issue - so much depends on what you are able to do, what your school is willing to do etc - the solution is very individual but the *concept* is the same for all kids who struggle with handwriting (above and beyond typical grade level struggles) - remediate handwriting as suggested by professionals who have evaluated your child, but when it comes to subjects *other than handwriting* - take handwriting out of the picture. Use a keyboard so that the student can participate in the academics at the level he/she is capable of understanding, not limited by their fine motor skills.

    "A kid who can read 4th grade level chapter books, but can't write a report about the book or draw a picture?"

    I'll just add one note here - be sure the "can't write" is only due to fine motor - if it's due to other challenges with written expression you might want to request help or at least be sure the level of instruction your child is receiving at school is at the level he needs. It's not unusual for children with no challenges to be able to read higher level books than they can write a book report for.

    I also think it's important when advocating to be aware of what level other children are working at - I'm guessing that it's possible your ds isn't the only 6 year old reading at a 4th grade level in his class or in his school. That's just my guess based on what I saw in my kid's classrooms in early elementary. The students who were the true outliers in reading ability were way ahead of 2-3 grade levels ahead. That doesn't mean your ds won't be way ahead or an outlier - you might see some huge leaps still ahead for him in reading - it's just my gut feeling that there are most likely a few other kids like him in his classroom now re reading ability, because reading abilities and levels have been all over the place in early elementary classrooms my kids have been in. I have also seen with one of my children that she enjoyed "reading" much higher level books than she was really fully comprehending - so before I assumed that difficulty with writing a book report was due to writing issues, I'd want to be sure the reading levels my dd was testing at at school lined up with what I saw her reading at home - if she was reading chapter books at home but not testing at that level at school... I'd want to dig a little deeper - is the testing off, or is the level measured by the school really where she's at re comprehension. I only mention that because I have one child (HG+) who always *always* picks higher level books to read at home than the level she's really at for writing book reports and fully comprehending content.

    "Also, if anyone has any ideas about his speech, that would help too. It is slow and dysfluent and he has an odd prosody and pitch."

    If your ds has DCD (also known as dyspraxia) - it's not uncommon to have speech challenges related to it. Try googling "apraxia of speech" or dyspraxia + speech. It sounds like what's going on with your school district SLP might be that the school district has a narrow range of types of speech challenges that they remediate, and your ds' challenge is something this particular SLP hasn't seen before or she is being pressured in some way to move kids through and out of services quickly. It's a really tough situation to be in, but we've found that going through private speech therapy (as well as OT) was so much more beneficial for our ds in the long run - we were able to find an SLP who understood our ds' specific challenges (which weren't typical for a school SLP) and we were also able to get him help he truly needed even though he didn't technically fall low enough in ability to qualify through school. This is a place where that "life plan" vs school needs falls in - you may need to seek out services for what your child needs outside of school.

    Re getting services for speech or OT services at school - our experience in our school district was that the guidelines for qualifying were very well defined, and a child had to meet the criteria or there was no hope of getting services. We found that calling our local parent advocate office was extremely helpful in learning the ins and outs of school district and state policy re services - and that helped us in turn know whether or not something our ds needed was worth time and effort fighting for through the schools. I suspect that's what your ds' OT meant when she said he wouldn't qualify for OT through the schools - the OTs and SLPs we've worked with privately were all very knowledgable re school district policy for services because they'd either worked with the district at some point in time or because they were serving a large number of clients who didn't meet the school district criteria but still clearly needed help.

    "The neuropsych recommended that he keep getting speech." I would ask your neuropsych if he/she thinks your ds will qualify for speech services through the school district, and if so, does he/she think the school district services are adequate.

    Re the IEP - your ds should be able to qualify for an IEP under OHI (otherwise health impaired) due to his TBI.

    Good luck advocating - it can be overwhelming at the grade level and age your ds is right now -

    polarbear

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    My son was only able to get a referral to a geneticist when I wouldn't agree to scoliosis surgery without him being checked for an underlying condition. He is 15. He had been previously diagnosed with developmental coordination disorder by a neuropsychologist who tested him all in one day even though he was getting a migraine and even though we had tried to get testing done over more than one day because of his endurance issues. He was tested because I wanted documentation of his handwriting disability just in case he ever needed accommodations for academic testing. When I told the neuropsychologist that some of the test results didn't make sense and I didn't understand how he could act in musical theater and learn and do dances with half as much practice (because of the endurance issues) if he had a "coordination" disorder she told me that people can have "splinter skills" and she would not listen to anything else I had to say. That is the kind of "in-network" or in other words the less expensive, clueless doctors we had to see.

    We have homeschooled since my son finished kindergarten because he was reading at a 5th grade level but the teacher thought he should be held back because he wouldn't color in the lines and had trouble with fine motor skills. He could not get OT or accommodations because he was not failing, but instead academically advanced.

    My son could write legibly for about five minutes but his hands would hurt and writing would become sloppy and he would just refuse to write any more. That never changed, even though he took piano lessons to strengthen his fingers and used squeeze balls to develop muscles. He learned to type and he taught himself to use the DVORAK keyboard layout which he says is easier on his hands.

    We had to have referrals to see specialists. When I was able to get them and it was hard, we were sent to "in network" specialists who didn't notice any of the signs of connective tissue disorder. I even gave a list of my son's symptoms to an in-network neurologist a few years ago. That list contained plenty of red flags for a CTD, including scoliosis. He noticed my son's hands but said they reminded him of his chiari patients and sent my son to have an MRI. My son doesn't technically have a chiari but he said it was close and he believed that to be the cause of my son's mild hypotonia and fine motor issues and migraines. Another neurologist, a non-network doctor, disagreed. She immediately saw the signs of a CTD.

    With our insurance, we could only see non-network doctors after first seeing in-network doctors and dealing with misdiagnosis for years. When my son asked me why so many doctors missed this and why they wouldn't listen to us, I felt like a bad mom because I should have been able to get them to listen. When I found out through genetic testing that I had the same genetic mutation in the FBN1 gene that my son has, I felt even worse. When I learned about genetics I guess I didn't pay any attention to the possibility of "variable expression." I have very few symptoms and those few symptoms are common in the general population. I wondered for years if my son's problems were because of the medication I took for migraines when I was pregnant with him. Now I know it was nothing like that.

    Because of the treatment we got from doctors who wouldn't listen, we both developed a bad case of medical anxiety and white coat syndrome and our blood pressure goes up when we have to see medical professionals. This has gotten even worse since the painful scoliosis surgery and recovery. My blood pressure goes up when I think of the years my son had to wear a very painful scoliosis brace that kept him from doing things with other kids--and I could possibly have undiagnosed heart issues that are common with Marfan. I haven't found the courage yet to get tested.




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    My son has recently been diagnosed with Ehlers Danlos. He is very similar to your son - has many of the same issues, particularly the motor issues. School was becoming a horrible place for him. Without a dx and accommodations, etc., he literally starting having a breakdown (resulted in an anxiety disorder Dx). It is actually such a relief to have the Ehlers Danlos Dx and I feel so much stronger with the school now. I also now undertsand a lot of symptoms that my son has that I never knew were part of the the condition (poor heat regulation (my son is always hot), trouble falling asleep, dental cavities, vision issues, etc).

    Now, I have a report from a top genetist telling the school that handwriting accommodations, such as a scribe, computers, extra time, rest, etc. are "medically necessary;" and, no, you will not build his stamina forcing him to write and, no, he will not out-grow it. And, no, he is not fine just because he isn't your worst student at writing in the class. It took a lot of fighting with the school to get my son's accomodation (this board helped and supported me immensely)... Let me tell you how much more solicitous they are now with a top doctor (and lawyer) behind me. And a REAL PHYSICAL condition that the school can not dismiss or argue around. I can shut them down in second now. My son is thriving now.

    I pursued testing him for the condition of EDS/connective tissue disorder based primarily on the information I got here - particularly from Lori H. It was recommended that my DS see a connective tissue specialist to me sort of off-handly by a doc I took him to in an attempt to get to the bottom of his hypotonia. But, the doctor recommending didn't seem to think it was a big issue and, like you, I didn't think his hypermobility was severe enough. When I posted about here Lori H told me the story of her son at my son's age. It was eerily similar. I made the appoitnment that day with the connective tissue disorders clinic. (But we had an over two month waiting time). My son has a mild form of it, he has the hypermobile type and I didn't think his hypermobility was all that severe (probably b/c I have it and never thought much of it; and, also, it is not nearly anything close to what you see on the internet). Nonetheless, he has it and it REALLY affects his fingers and wrist and hands. Like your son, his fine motor and motor-visual integration are deplorable. Anyway, it does sound like your son has it. I urge you to pursue testing and looking into it. Do not be dismissed or putt-off as it is not okay or normal for your son to be struggling the way he is. There is help! And you can MAKE the school help and accommodate. Can he click his joints? My son clicks his joints and lately I have found him "banging" (with his fist) certain joints back into place (ankles and knees). I never saw him do that before this month. I just noticed the banging recently and asked him about it - he said his symptoms come and go ...He goes through good periods/phases and less than good. he said he used-to occassionally have to bang his ankles on a chair or desk to get them back into place but his knees just recently started bothering him.

    The genetist said DCD/Dyspraxia is very often co-morbid with Ehlers Danlos.


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    Originally Posted by blackcat
    Also, I'm not sure what to ask for in terms of the giftedness. The neuropsych wrote in the report that it should be addressed by the school. What would they do with a kid who can understand long division, but has motor skills like a preschooler. A kid who can read 4th grade level chapter books, but can't write a report about the book or draw a picture? I think grade or subject acceleration would be completely inappropriate, but that's all the district offers for K-2nd.

    This is where we are now. I spent all last year getting to the bottom of my DS's issues (Btw, my son has the same visual problem as your son and not until I saw the connective tissue doc was I told that vision problem is very much a result of and co-morbid with ehlers danlos) and getting accommodations in school and help. My goal this year is to get the gifted part of him addressed. In our case, the school offers enrichment, pull-out gifted program starting in 2nd grade that I think will be good for my son. Now, I have to get him despite the the impact his ehlers danlos has on his WISC scores (processing speed and coding is deplorably low and pulls down his FSIQ), his vision issue affcts the picture completion/picture concepts subtest which pulled down his PRI but his other tests were all very high and his VCI is a 132. His acheivement tests (both math and reading are now well-above grade level; math allegedly two full grade levels above). So, we'll see.


    ETA: the school can not discriminate and keep your son (or mine) out of gifted programs, enrichment, advancement, etc. based on his disability. So, for example, all of my son's accommodations will be provided whether he is doing regular classwork, enrichment work, gifted class/program etc.

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    Thanks for all the input and sharing your stories! Can someone clarify for me what is meant by vision problems with EDS. Is it a problem with tracking moving objects and covergence/divergence, and depth perception? If I put a pencil in front of his face and move it slowly back and forth he has to put a great deal of effort into moving his eyes, literally can't keep his head from turning, and he screws up his mouth with the great effort of it. If an object is placed in the periphery, he can't find it without difficulty. He also now seems to have a bizarre ability to move his eyes in different directions on purpose, like one of those lizards.

    I am currently taking him to OT and PT 1 time per week (privately), but I believe it is only approved through our insurance for 6-12 months. And even with that we still have large co-pays. dealing with insurance and getting him ongoing services is just as difficult as dealing with the school system. The second he meets a certain goal, he is exited. Then regresses.

    In terms of the neuropsych, he wrote in the "Diagnostic Impressions" section: Cognigtive Disorder, not otherwise specified (due to history of language delays), Developmental Coordination Disorder, Mild Traumatic Brain Injury, Balanced Translocation, Possible Chiari-I malformation noted on MRI as an incidental finding.

    In the past, various specialists (like the physiatrist) have also given him a diagnosis of hypotonia and flat feet and noted that he has joint hypermobility.

    His IQ on the verbal section of the WISC IV was only in around the 85 percentile. But he has a history of language delays and speech dysfuction so I'm not sure if that is an accurate picture, or why there would be such a big gap between verbal and non-verbal (about 25 or 30 IQ points--non-verbal was in the 140's even with the block design that he didn't do very well on). I think he hit the ceiling on the other two tests. I believe that his advanced reading does not come from verbal ability, but because of hyperlexia (or something similar), or something like a photographic memory. He started reading a few years ago, but has never been very interested or done it very much. There was one other boy in his K class last year who read at an advanced level, so she had them read books like "The Mouse and the Motorcycle" together or to themselves, and then asked them questions about it. Should be interesting to see how the current teacher deals with reading. I noticed she does not have hard enough books (they only go to Level L on her shelf).


    I asked his first grade teacher if he can do math on the computer in the classroom, and she said yes, but launched into a spiel about how even if the class is learning 2+2, DS would probably still enjoy manipulating blocks with the rest of the class to learn these concepts. DS is very laid back and will cheerfully go along with whatever she says, but I feel bad for him having to deal with stuff that is way too simple

    I talked to the spec. ed director with the district and he said that obviously DS needs a comprehensive eval and the fact that he is 2e is causing issues. He told me that he can help ensure he gets a proper eval, since I believe the school will do a bogus one without intervention. I think he is kind of at a loss too, though, and so I'm looking for ideas of things I can ask for. I told him I want to wait and hear what the neuro-ophthamologist says on the 18th. The pediatric ophthamologist that I had been taking him to was completely unhelpful, at first telling me that most likely DS's sixth nerve palsy from the accident would never resolve and he would always have crossed eyes or loss of periphery vision, and then when he did improve after a few monnhs, she said his eyes were "perfect". She dismissed what I told her about the OT and PT's findings about his eye tracking.



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    blackcat, have you tried connecting with a parent advocate? There are groups in (I think) all 50 states that are funded by the Federal Govt (I think you're in the US - if not, ignore this bit of advice!). I found our local group by going to www.wrightslaw and following the link to "Yellow Pages". You can scroll down to your state, where you'll find contact info for advocacy services. The parent advocate groups provide advice for parents advocating for accommodations and IEPs etc, and I relied on them quite a bit when we were initially advocating for accommodations and an IEP for our ds (DCD + expressive language disorder) as well as when we've had issues with our dd who has medical issues that require an IHP and is entitled to accommodations under Section 504. I've never needed more than some brief time on the phone consulting as different issues arise, but the advice is what made *all* the difference in helping me be successful. The advocates were familiar with local schools and local school staff, so they were able to alert me to the types of issues I would run into; they are familiar with state law and school district policy so they were able to give me the language to use to cut through the school's attempts to try to persuade me that my ds was "fine" and "needed nothing". If you haven't looked for an advocate in your area, it's definitely worth at least the few minutes to check and see if you have a group you can work with, especially given the info you've posted here about the challenges you're having with your school.

    I would also continue advocating etc with school even though you're pursuing further medical diagnoses - you have enough info now with the neuropsych report citing TBI as well as DCD that you should be able to get accommodations built into your ds' IEP or get a 504 plan in place for handwriting etc.

    polarbear

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    I spoke to a lady with a group called PACER, but all she really did was tell me they should be doing a comprehensive eval, and she sent me a template that I can modify to request one, detailing my concerns.
    His PT told me to try another group called ARC.
    We're in MN if anyone has any other ideas. I've been to wrightslaw but need to go back and investigate it more.

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    Blackcat my hypermobility is "not that bad" either, certainly nothin like the photos on the Internet. But I have had life long issues, many of which could ave been better handled, and made some major life choices that maybe should have been different with full health information in mind. No-one thinks of connective tissues, t gets dismissed out of hand most of the time when you ask, but you really need to know, from someone that actually gets connective tissue disorders, if your son has one at play.

    And keep in mind that the most common form of EDS does not actually have an identified gene yet, so is diagnosed clinically not on gene test.

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    Originally Posted by blackcat
    Can someone clarify for me what is meant by vision problems with EDS. Is it a problem with tracking moving objects and covergence/divergence, and depth perception? If I put a pencil in front of his face and move it slowly back and forth he has to put a great deal of effort into moving his eyes, literally can't keep his head from turning, and he screws up his mouth with the great effort of it. If an object is placed in the periphery, he can't find it without difficulty.

    Yes, this. Strabismus is common in people with EDS. My son has intermittent convergent strabismus and he has these exact symptoms. He has a great deal of trouble tracking. He's gotten much better with VT and OT but is still pretty resistant to heavily based vision tasks (particularly those involving scanning and tracking) - depending on how tired he is. Obviously, people also have this and do not have EDS but it is common in persons with EDS because the condition is affecting the tissues and muscles in the eyes (my understanding).

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    I just read through your posts again and I'm sorry for some of the issues you've been through. Lori, that sounds so frustrating. I have had the term "splinter skills" thrown at me too when questioning things, for instance even at age 4 DS was quite adept at video games on the Wii like Mario Kart--it involves a ton of coordination so how can he have developmental coordination disorder? Now I wonder if it's because games like that involve a lot of visual-motor integration skills, which he tests fine with, so maybe he is using his great visual memory to memorize all the courses and sort of compensates for the poor motor skills. I really have no idea. I just know that feeling of thinking "wait, this doesn't seem right and the pieces don't fit together." But everyone just blows it of.

    What would be the best doc to check for a connective tissue disorder? Geneticist?


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    I had a really good experience going to a geneticist. In reading on the EDNF message board, it seems like people can have trouble with other specialties like a rheumatologist or general practice doctor.

    Where some specialist are very good at disorders involving their system of expertise, I think the understanding of how various genetic disorders manifest across the body help geneticists figure out what is going on.

    For example I had no idea so many of my peculiarities were related. Things like preterm deliveries, hypotension, missing molars, hypermobility and various other things were related to EDS.

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    I would suggest a geneticist who has been recommended as a connective tissue specialist by a group like EDNF

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    Ok, thanks for all the input everyone. I don't think he has most of the symptoms (and some of the strange symptoms he does have like the notched teeth and shoulder dimples aren't listed as symptoms). I have a feeling there is something else going on, and it's quite possible there is a unique mutation at one of the breakpoints (chromosome 6 and 14 broke in half). I have the same chromosomal disorder and am also low tone with hypermobile joints as well. Same with my brother. So many genetic disorders cause similar symptoms, like low muscle tone. DS was already checked out by a geneticist, but I'll ask again to make sure we're not overlooking a connective tissue issue.

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    Um...

    so, my DD and I both seem to score about a 7 or so here on the Beighton index:


    http://www.ednf.org/index.php?option=com_content&task=view&id=1360&Itemid=88889296




    Um, everyone can pretty much do that, right? DD can actually put her thumb all the way up ON her forearm, no problem. I can do about what is shown in the photo. She can put her TOES into her armpit. Seriously.


    Her hands are like textbook pictures of arachnodactyly-- truly, this could BE my daughter's hands.



    and what's more-- she can TOTALLY do this.

    We both have nearly transparent skin that bruises if you even look at it wrong.


    In doing more reading, EDS could also explain my profound inability to thermoregulate-- something that I never even thought about.

    DD also has significant scoliosis, which developed quite rapidly (over a period of about four months before it was enough that I noticed it).

    Thinking that we might should mention some concern re: our own little family carnival sideshow at our next visit, actually. Good thing it's soon. Kind of freaking me out as I revisit past cardiac stuff with this possibility in mind.


    I really appreciate the forthright discussions of connective-tissue disorders here over the past few years. I don't know that I'd have put together hypermobility + scoliosis + another recent quirk, otherwise. Nobody else was going to, either-- because this was something that came out of multiple professional/medical settings that are unrelated to one another.

    This may well explain why she has SUCH pain in her hands after more than about 20 minutes of really hard use-- even after 8 years of piano, she simply cannot practice for more than 30 minutes.



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    HK, that was how it was for me. I never thought much about my flexibility and the rest seemed like unrelated annoying peculiarities. It wasn't until some symptoms got worse after my second child that I started complaining about them more. My friend has Marfans and mentioned looking into a connective tissue disorder. At the same time Lori H. was on here talking about her son's struggles. I mentioned my symptoms to my pediatrician sister in law and she urged me to get myself and my oldest son in to see a geneticist. I was diagnosed in the spring and my son has appointment next week.


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    For anyone interested in seeing a geneticist in or around WA, I highly recommend Dr. Mitzi Murray at UW.

    Here is the link to the genetic medicine clinic:

    http://depts.washington.edu/medgen/clinics.shtml

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    HK, the signs have been there my whole life, with multiple symptoms pointed out independently by unrelated professionals, but neither did I put it together until someone asked about EDS and pregnancy on a board, never having heard of it I looked it up (as you do) and had the "Oh.... oh dear.... oh I need to see my doctor now..." moment. Now THAT was a very embarrassing conversation with the Dr "Hi, I just read about this thing on wikipedia...", at least he'd known me half my life, knew about many of the individual problems already, and knew I wasn't in there every five minutes about something I had read on the internet! He had never heard of EDS either, so he also had to google it and then did the same thing as me "Oh... oh dear... um, you need a specialist...". Unfortunately, not knowing enough himself he sent me to a rheumatologist who diagnosed HMS, not EDS, which does not adequately cover all the health issues I have beyond just hypermobility that are clearly related to EDS. So now I am awaiting a geneticist appointment.

    I don't have the most severe case of one any of the symptoms in particularly but my issues are so wide spread and multi-systemic that together they really add up to big problems and I really wish I had known earlier.

    Considering how rare connective tissue disorders are supposed to be I find it fascinating how many confirmed or likely cases there are on this board, which has a fairly small population based on a different rarity.

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    EDS came up in my thread but reading over here and at EDNS has me thinking this may fit. Those internet pictures and the varying descriptions had me thrown off. I had my son do some of the hypermobility tests mentioned and oh my! It was shocking to see ... esp with hands and fingers.

    My husband has chronic nosebleeds since childhood. They cauterized his blood vessels trying to help and it only made it worse. On his mom's side there is a scary incidence of heart attacks at young ages in the men. He battles tears in the skin on his hands and fingers. Opening things can rip his hands up badly. He has very flat feet and has dislocated his shoulder many times in ways that seem not that traumatic. The last time while putting on a jacket. IBS (esp. the loose stool side) is a chronic problem for him as well. He has a weird jaw (my brother the dentist pointed it out) that closes in 2 different positions. He has the pale translucent skin.

    My son has been diagnosed with "growing pains" many times. He seems to get hurt easily. He has mild scoliosis noted on an xray at 5. As I've mentioned elsewhere he does have Dyspraxia and hypotonia. He had awful reflux as a little person till about 2.5. We have struggled with dental caries--his baby teeth just dissolved and I never understood why as I've only had one in my entire life and we did all the right things. (His dad also gets loads of caries and has problems with teeth chipping on a regular basis.) He has started snapping the joints on his middle and ring finger just by rubbing or shaking them. It's weird. He gets bruises (as does my husband) and can't remember how he got them.

    Hmmm. Wonder if I need a referral? May call the insurance on Monday and double check.

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    I'm bumping this up with a update 3 years later. DS is now 9 and still has coordination issues as well as muscle weakness. He has core strength issues as well as poor results on standardized hand grip testing.

    I took him to the neuropsych he saw 3+ years ago and all of a sudden he is saying that his issues are related to his Chiari and was talking a lot about cerebellum dysfunction. I didn't even bring it up at all as a concern. He had given him a DCD diagnosis before, he listed the Chiari as a diagnosis but hardly said anything about it 3 years ago. Now all of a sudden the cerebellum dysfunction is the main cause of everyything? He even said it can affect social skills and cause his apraxia of speech I can't find anything like that in any of the stuff I'm reading. DS has not been complaining of any headaches or neck pain or anything. So why would the chiari affect his muscle strength and coordination when he doesn't have other more typical chiari symptoms? I'm going to take him to another neurosurgeon, but I find all of this very odd and disturbing.

    update--I am now finding more articles after googling cerebellum rather than just chiari, like this.

    http://www.ncbi.nlm.nih.gov/pubmed/26105056

    http://www.ncbi.nlm.nih.gov/pubmed/26331036

    http://www.uzhelth.org/docs/second-...the%20Cerebellum%20Fredericks%201996.pdf

    Anyway, I am waiting on a report but wanted to put this here as an update...it looks like a lot of this research on the cerebellum is new.

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