Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 I feel like we are on the eternal evalation path (which is getting a little old). I agree that there are many avenues to go through. When we first saw a developmental pediatrician (brought in for the motor delays at 17 months and left with a diagnosis of severe language delay NOS) we were told to get ST privately or go through EI. I was told to not worry about the motor stuff as he just started walking. (Coordination of my globally apraxic child is still an issue - one we are finally dealing with re: OT and soon PT, 10 months later). Apraxia was never even mentioned, nor was his hypotonia at the time. After EI (the price was right) our speech therapist diagnosed " classic apraxia " on the first visit...but then my son was only 22 months and I was very skeptical of the diagnosis, but started doing my homework only to find that he was in fact classic. But I returned to the developmental pediatrician to get her take on it (Director of Develop Peds at our Children's Hospital) - and she was skeptical of benefits of fish oil, reports I told her of " rewiring " of the brain - the younger the better - good science coming out of Stanford University Medical Center, and told me apraxia could not be diagnosed until at least 3 years. Wait another year? No way! Valuable time would be lost if in fact this was apraxia. Armed with the knowledge I gained from this and other sites, searching pub med etc...I knew this all to be not true re: timing of diagnosis etc (but old school thinking). Our insurance covered these initial evalations. At that point I went out to another private develop ped for an evaluation...knowing we would be spending upwards of $1000 for the initial eval plus cost of follow-ups (they are expensive - so $2000 doesn't actually shock me...but you have to weigh what info you are getting vs. putting that money towards therapy that is not covered by EI or insurance. The dyslexia work-up for my daughter was about $2000, and I knew that going into it - but also knew that the private Dev ped would stand behind his diagnosis and help us at IEP time if necessary etc...and also knew that an insurance-covered evalation would not get us what we needed). This second evaluation for my son at age 24 months gave us the confirmation of the diagnosis of global apraxia (what we needed to increase services through EI - though 2x week ST is still not sufficient for apraxia...better than once a week, and we have bumped privately to three times). So completely paid for itself in the sense of justifying increased services. But we were also told to get " good OT " - which we did not have at the time through EI. He recommended some private OTs...and the initial evaluation (without therapy) was $1200. So this REALLY adds up quickly. But OT for hypotonia and apraxia (now that we had the diagnosis) is covered by insurance. The insurance covered OTs from the children's hospital will offer us pretty much the same thing as the private. We are willing to do whatever it takes to help my son (using home line of credit etc for the cash if necessary). But there are often (though not always) good services through the state and insurance - once you figure out what to ask for. We opted to put that $ towards his ST rather than private OT eval, and went through our insurance for the OT. Turns out that EI will actually provide PT too, now that we have an evaluation (from the insurance covered OT) stating that it is medically necessary. I feel like this is a game we all need to learn how to play in order to get the services our kids need. If you have a good ST - that individual should be able to give you an idea of the diagnosis...unless he/she is not well versed in apraxia - which unfortunately happens quite a bit. If there is a long waiting time for an appointment to see your local develop ped (who may be covered by your insurance)... ask to be put on the cancelation list. This means that you may get a call in the AM that there is suddenly an appointment that afternoon...but if you have some flexibility - often this will get you in within the next month or 2 as opposed to a year. We would have made the trip to NYC to see Dr. Agin as well if there were no other options. In some areas, there really may be no other options - but for that kind of money you may want to explore the options that are available and get on the list to see your local folks. $2000 = > 20 sessions of private speech therapy, and with a good therapist you can get your diagnosis. If you have a good relationship with your pediatrician - they will usually support the diagnosis even if they do not know that much about apraxia etc - if you share the ST report with them. But if you feel like you can't get the " right diagnosis " through what's available - a trip to NYC may actually be worth it in the long run. - [ ] TWO THOUSAND DOLLAR?? Does she move in with you for a week? Perhaps someone could verify that this is her fee, but it CERTAINLY seems exorbitant - particularly for folks who are likely staring down years of weekly therapy. I know Dr. Agin was you co-author, , but I have NEVER heard of a doc asking that kind of standard fee. Lots of folks here love Dr. Agin, but she is CERTAINLY not the only path - and no one should feel like they're doing their child a disservice if they take a different route - it certainly need not cost that much. To put it in perspective, my younger son was seen for a comprehensive evaluation at our local Children's Hospital. We saw a ST, OT/PT, dietician, and a dev ped 3 times. Each of the individual evals took 2 hours except the dietician which was 3 total (2 visits). The dev ped saw us 1 time with our child for about 1.5 hours, again without our child for over an hour and then again with our son as a follow up for approx. an hour. The entire fee - for all of these evals (which went over 2 weeks) - paid out by our insurance company was approximately $1400. Please also note that there are programs available in Ohio - and I'm sure in other states - that either waive fees or create payment plans for these types of evals. Basically, the hospital works with you - if you called and asked what fee would be involved to evaluate a dev delayed kid or a ST eval - you might get an hourly rate, but there are so many variables that the answerer would be hard pressed to give you a flat figure. Both of my children's evals were right on - and my apraxic son's eval was done by a ST. I'm not sure why this has to be so complicated. If you're not getting the right diagnosis, there are always other avenues - some of them might cost, but likely not thousands. And for those of you in EI, there are plenty of folks who have been here who have 1 diagnosis from EI and one from a private doc/ST - and ne'er the twain shall meet. Just had to throw my (unpopular) 2 cents in - but this is scary enough without feeling like you HAVE to go borrowing thousands of dollars to go see 1 particular person in this instance. Marina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 " $2000 = > 20 sessions of private speech therapy, and with a good therapist you can get your diagnosis. If you have a good relationship with your pediatrician - they will usually support the diagnosis even if they do not know that much about apraxia etc - if you share the ST report with them. " Yes, you're right that you can get on that never-ending path...I just don't think it's the ONLY route - and one certainly shouldn't feel guilt because they can't get there - it's not the only game in town. I particularly liked your suggestion of going to your ped for the diagnosis - I have a great relationship with my ped. He knew we had good coverage and had other options for seeking diagnoses, but I have shared each step of the way with him, and he, in turn, has written letters of medical necessity, participated in IEPs (through letters) etc. and been of immense help. Excellent suggestion... Marina > > I feel like we are on the eternal evalation path (which is getting a little > old). I agree that there are many avenues to go through. When we first saw a > developmental pediatrician (brought in for the motor delays at 17 months and > left with a diagnosis of severe language delay NOS) we were told to get ST > privately or go through EI. I was told to not worry about the motor stuff as > he just started walking. (Coordination of my globally apraxic child is still > an issue - one we are finally dealing with re: OT and soon PT, 10 months > later). Apraxia was never even mentioned, nor was his hypotonia at the time. > After EI (the price was right) our speech therapist diagnosed " classic > apraxia " on the first visit...but then my son was only 22 months and I was > very skeptical of the diagnosis, but started doing my homework only to find > that he was in fact classic. But I returned to the developmental > pediatrician to get her take on it (Director of Develop Peds at our > Children's Hospital) - and she was skeptical of benefits of fish oil, > reports I told her of " rewiring " of the brain - the younger the better - > good science coming out of Stanford University Medical Center, and told me > apraxia could not be diagnosed until at least 3 years. Wait another year? > No way! Valuable time would be lost if in fact this was apraxia. Armed with > the knowledge I gained from this and other sites, searching pub med etc...I > knew this all to be not true re: timing of diagnosis etc (but old school > thinking). Our insurance covered these initial evalations. At that point I > went out to another private develop ped for an evaluation...knowing we would > be spending upwards of $1000 for the initial eval plus cost of follow-ups > (they are expensive - so $2000 doesn't actually shock me...but you have to > weigh what info you are getting vs. putting that money towards therapy that > is not covered by EI or insurance. The dyslexia work-up for my daughter was > about $2000, and I knew that going into it - but also knew that the private > Dev ped would stand behind his diagnosis and help us at IEP time if > necessary etc...and also knew that an insurance-covered evalation would not > get us what we needed). This second evaluation for my son at age 24 months > gave us the confirmation of the diagnosis of global apraxia (what we needed > to increase services through EI - though 2x week ST is still not sufficient > for apraxia...better than once a week, and we have bumped privately to three > times). So completely paid for itself in the sense of justifying increased > services. But we were also told to get " good OT " - which we did not have at > the time through EI. He recommended some private OTs...and the initial > evaluation (without therapy) was $1200. So this REALLY adds up quickly. But > OT for hypotonia and apraxia (now that we had the diagnosis) is covered by > insurance. The insurance covered OTs from the children's hospital will > offer us pretty much the same thing as the private. We are willing to do > whatever it takes to help my son (using home line of credit etc for the cash > if necessary). But there are often (though not always) good services through > the state and insurance - once you figure out what to ask for. We opted to > put that $ towards his ST rather than private OT eval, and went through our > insurance for the OT. Turns out that EI will actually provide PT too, now > that we have an evaluation (from the insurance covered OT) stating that it > is medically necessary. I feel like this is a game we all need to learn how > to play in order to get the services our kids need. > > If you have a good ST - that individual should be able to give you an idea > of the diagnosis...unless he/she is not well versed in apraxia - which > unfortunately happens quite a bit. If there is a long waiting time for an > appointment to see your local develop ped (who may be covered by your > insurance)... ask to be put on the cancelation list. This means that you may > get a call in the AM that there is suddenly an appointment that > afternoon...but if you have some flexibility - often this will get you in > within the next month or 2 as opposed to a year. We would have made the > trip to NYC to see Dr. Agin as well if there were no other options. In some > areas, there really may be no other options - but for that kind of money you > may want to explore the options that are available and get on the list to > see your local folks. $2000 = > 20 sessions of private speech therapy, and > with a good therapist you can get your diagnosis. If you have a good > relationship with your pediatrician - they will usually support the > diagnosis even if they do not know that much about apraxia etc - if you > share the ST report with them. But if you feel like you can't get the " right > diagnosis " through what's available - a trip to NYC may actually be worth it > in the long run. - > > > [ ] TWO THOUSAND DOLLAR?? > > > Does she move in with you for a week? Perhaps someone could verify > that this is her fee, but it CERTAINLY seems exorbitant - particularly > for folks who are likely staring down years of weekly therapy. I know > Dr. Agin was you co-author, , but I have NEVER heard of a doc > asking that kind of standard fee. Lots of folks here love Dr. Agin, > but she is CERTAINLY not the only path - and no one should feel like > they're doing their child a disservice if they take a different route - > it certainly need not cost that much. > > To put it in perspective, my younger son was seen for a comprehensive > evaluation at our local Children's Hospital. We saw a ST, OT/PT, > dietician, and a dev ped 3 times. Each of the individual evals took 2 > hours except the dietician which was 3 total (2 visits). The dev ped > saw us 1 time with our child for about 1.5 hours, again without our > child for over an hour and then again with our son as a follow up for > approx. an hour. The entire fee - for all of these evals (which went > over 2 weeks) - paid out by our insurance company was approximately > $1400. Please also note that there are programs available in Ohio - > and I'm sure in other states - that either waive fees or create > payment plans for these types of evals. Basically, the hospital works > with you - if you called and asked what fee would be involved to > evaluate a dev delayed kid or a ST eval - you might get an hourly > rate, but there are so many variables that the answerer would be hard > pressed to give you a flat figure. Both of my children's evals were > right on - and my apraxic son's eval was done by a ST. I'm not sure > why this has to be so complicated. If you're not getting the right > diagnosis, there are always other avenues - some of them might cost, > but likely not thousands. And for those of you in EI, there are > plenty of folks who have been here who have 1 diagnosis from EI and > one from a private doc/ST - and ne'er the twain shall meet. > > Just had to throw my (unpopular) 2 cents in - but this is scary enough > without feeling like you HAVE to go borrowing thousands of dollars to > go see 1 particular person in this instance. > > Marina > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 Hi Marina! A speech therapist can diagnosis apraxia or other impairments of speech, but they're not qualified to diagnose the neuro soft signs that typically co exist such as motor planning deficits in the body, and low tone (hypotonia) etc.. http://www.cherab.org/information/speechlanguage/parentfriendlysoftsigns.html Can't address it with EI without diagnosis. One needs a neurodevelopmental medical doctor to confirm or rule out the neuro soft signs. As I just posted the other day -a parent told me that she took her child to an SLP and she was diagnosed with apraxia and nothing else. Pure apraxia as we know from our group exists -but it's so rare it's like finding an apraxic child 50 years ago, improbable. A pediatrician is a great start -but if they suspect apraxia which is a neurologically based motor planning disorder than an appointment with a neuroMD (developmental pediatrician or pediatric neurologist) is highly recommended. Of course the parents can start with the MDs in their insurance plan and they may provide all the help that is needed. After all, Dr. Agin wrote The Late Talker and the Contemporary Pediatrics articles to educate other pediatric medical professionals what to look for and how to help the children (The Late Talker even provides sample letters from an MD) Like I said however, if one makes an appointment with Dr. Agin you won't get one any time soon anyway. So you can decide if it's what's best as it gets closer to the date of your appointment. They have a constant waiting list of people who would are waiting to hear about a cancellation. (I myself have tried to get family friends in right away by people who said " Come on you can get an appointment right away " but couldn't -and I'm her co author of The Late Talker!) ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 Where I live, a dx from an slp does not get you the increased services from EI - only a formal dx from a specialist, in our case a Ped. Neuro & Dr. Agin. As for Dr. Agin, my daughter saw her in Nov. 2005 & was awesome. We had already had the formal dx & were getting all the services we needed, but she had many suggestions & her report was helpful for our first iep meeting. Without her, I never would have gotten her placed in a ei center based pre school - didn't know they existed. I made a follow up appt. just yesterday - appt is May 2006. I couldn't decide if I should take Callie, she is doing so well - speaking up a storm & we get all the services we need. I decided to make the appt...I figured we have come so far, let's go all the way & I want to make sure her progress continues. IF Dr. Agin can make any suggestions, no matter how small that will better prepare her for kindergarten, then it's worth it. > > Hi Marina! > > A speech therapist can diagnosis apraxia or other impairments of > speech, but they're not qualified to diagnose the neuro soft signs that > typically co exist such as motor planning deficits in the body, and > low tone (hypotonia) etc.. > http://www.cherab.org/information/speechlanguage/parentfriendlysoftsi gns.html > > Can't address it with EI without diagnosis. One needs a neurodevelopmental > medical doctor to confirm or rule out the neuro soft signs. As I > just posted the other day -a parent told me that she took her child > to an SLP and she was diagnosed with apraxia and nothing else. Pure > apraxia as we know from our group exists -but it's so rare it's like > finding an apraxic child 50 years ago, improbable. > > A pediatrician is a great start -but if they suspect apraxia which > is a neurologically based motor planning disorder than an > appointment with a neuroMD (developmental pediatrician or pediatric > neurologist) is highly recommended. Of course the parents can start > with the MDs in their insurance plan and they may provide all the > help that is needed. After all, Dr. Agin wrote The Late Talker and > the Contemporary Pediatrics articles to educate other pediatric > medical professionals what to look for and how to help the children > (The Late Talker even provides sample letters from an MD) > > Like I said however, if one makes an appointment with Dr. Agin you > won't get one any time soon anyway. So you can decide if it's > what's best as it gets closer to the date of your appointment. They > have a constant waiting list of people who would are waiting to hear > about a cancellation. (I myself have tried to get family friends in > right away by people who said " Come on you can get an appointment > right away " but couldn't -and I'm her co author of The Late Talker!) > > ===== > Quote Link to comment Share on other sites More sharing options...
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