I got my son's test results

[Quiver0f10]

and I don't know what to think. Basically she gave a provisional diagnosis of ADHD and a severe reading disability( she said he has the most severe reading disability she has seen). She said he has some serious leaning disabilites but she isn't sure if they are caused by his seizure disorder or by ADHD or ???. He has recall issues, which is making learning anything hard, but again she isn't sure if its ADHD or something else entirely. He does have a below normal IQ, but he does not have MR. She thinks with cognitive training he might be able to raise the IQ score some.

 

What she wants to do is put him on ADHD meds and retest some of the test and see if he makes a significant improvement. If he does improve then the ADHD diagnisis was right. If he doesn't improve, then he needs further evaluation by a neuropsychologist(she is a clinical psychologist and I thought we were getting a neuropsych eval, but I don't know if what she did is = to what a neuropsychologist would do? ).

 

I really don't like the idea of meds in the first place, especially with his seizures, but the idea of try meds and see if it helps just doesn't sit well with me. I thnk I am going to try to get him in with an NP, but I am sure that is going to take months and I don't know what to DO in the meantime.

 

I was really hoping we would get a diagnosis of XYZ and we can do ABC to help. She gave me some recommendations of things we can try, but nothing concrete. I feel just as confused and helpless as I did before we tested.

Edited November 15, 2008 by Quiver0f10

[Osmosis Mom]

That sounds incredibly frustrating. I have no experience with what you are dealing.

 

The only thing I might consider differently s to indeed let him try the ADHD medication while waiting to see the NP. That way you would have something real to measure against and possibly eliminate or continue working form. As I understand it, then the ADHD medications do not have any long-term effects. You might want to go that route to at least feel you are trying something as long as the ADHA-medications do not interfere with what he is gettting for his seizures.

 

Wishing you the best.

[cillakat]

Do you have a written report? Numbers could be helpful in terms of getting feedback from some of the knowledgeable people here....there are are lots.

 

It's often tricky, with untreated ADHD, to determine what 'is just the adhd talking' and what is separate. it was b/c of that particular issue that my dd's reading disability (dyslexia) was not diagnosed at the time of testing even though the results clearly showed it. everyone (except me) was willing to accept it was just the adhd coloring the results (ie experienced highly thought of teacher didn't think she was dyslexic etc)

 

When working memory is poor, it can depress almost all other scores.....it is looking more and more like cognitive training can help working memory among other things (ie processing speed).

 

My dd9 has started doing brainware safari ($59 software from hsbc). Some here have surmised that someone involved in the creation of PACE training broke off and started Brainware.....now that we're using it, and now that I've seen PACE materials I wouldn't be suprised if that was the case. Regardless, I can see how the Brainware activities work on processing speed, working memory and other cognitive skills. While dd finds some of the activities very difficult and frustrating, she also likes them and with cheerleading, is willing to go on.

 

Do start intensive intervention phonics asap. Barton, Wilson, HEC Reading Horizons, etc.....

 

Testing for vitamin D and getting sufficient vitamin D into him is simple and a top priority....sufficient zinc, calcium, magnesium, fish oil, iron are all critical though in my experience not enough to manage the ADHD symptoms in a way that will make a meaningful difference in schoolwork/daily life.

 

We did have significant changes with amino acids and various b vites but it wasn't lasting benefit and overall, it was nothing like the benefit gained from adderall. I'd talk to the neurologist or whomever is managing the epilepsy.....

 

After 2 homebirths, nursing my kids for 4 and 5 years, not vaccinating etc etc you can imagine that I too was fairly opposed to meds. No. Make that TOTALLY opposed to meds.

 

However, by the time we got a dx, she regularly facing failure on every front....social, academic, family relatioships that something had to change. It was easy to make the decision to trial meds at that point. She was 6.5.

 

The first few meds were awful ito side effects. But individual response varies *so much* so we kept trying. Regular generic adderall is right for her. She takes 7.5 mg 2 or 3x per day.....every 4.5 hours.

 

I take 10 mg 2x per day, though not daily. My adhd was diagnosed before hers.....but I didn't do a med trial until much later....2 years after her dx.

 

:)

K

[cillakat]

She said he has some serious leaning disabilites but she isn't sure if they are caused by his seizure disorder or by ADHD or ???.

 

while ld's occur more often with ADHD than in the general population, ADHD doesn't 'cause' LD's. The untreated ADHD might make other things so difficult that in the testing, it could show up as an LD wether or not it really is.

 

just one of many possibilities.

 

I'd go back and ask for more specific recommendations

 

1)where are we now

2)where are we headed

3)how do we get there (specfically)

 

:)

K

[newbie]

Lots of hugs, no dx is like sitting in a fog. You will have better results w/neuro psych.

 

I wouldnt do meds. There are so many natural things that help. My niece is low IQ like 76, I think but not MR. In the past three yrs. she advanced three grades, because we got in her in right school for LD children.

 

It just takes one on one, and learning where the gaps are. I believe there are great possibilites in these kids, it just takes someone to believe in them.

 

Just remember you have support and hang on , the rainbow is just over the horizon.

[kRenee]

Could you make an appointment with an NP and ask him if medicating and retesting is something he would recommend? If it is, you could try it before his appointment and be that much further along in the evaluation process.

[Quiver0f10]

Do you have a written report? Numbers could be helpful in terms of getting feedback from some of the knowledgeable people here....there are are lots.

 

When working memory is poor, it can depress almost all other scores.....it is looking more and more like cognitive training can help working memory among other things (ie processing speed).

 

Testing for vitamin D and getting sufficient vitamin D into him is simple and a top priority....sufficient zinc, calcium, magnesium, fish oil, iron are all critical though in my experience not enough to manage the ADHD symptoms in a way that will make a meaningful difference in schoolwork/daily life.

 

However, by the time we got a dx, she regularly facing failure on every front....social, academic, family relatioships that something had to change. It was easy to make the decision to trial meds at that point. She was 6.5.

 

I do have a written report and I thought about posting his numbers, but I wasn't sure if I should. I can write it out later if that helps. I saw a report somewhere @ fish oil and epilepsy and need to talk to the neuro @ that at our next visit. I'd I'd rather do something herbal or vitamins than meds, if it can be helped.

[Quiver0f10]

That sounds incredibly frustrating. I have no experience with what you are dealing.

 

The only thing I might consider differently s to indeed let him try the ADHD medication while waiting to see the NP. That way you would have something real to measure against and possibly eliminate or continue working form. As I understand it, then the ADHD medications do not have any long-term effects. You might want to go that route to at least feel you are trying something as long as the ADHA-medications do not interfere with what he is gettting for his seizures.

 

Wishing you the best.

 

I am going to call his neuro on Monday and ask @ safety with the meds so I can make a descision. If we can't get into the NP soon, we might go ahead with the meds once we have the the neuro's blessing. I need to think and pray @ it.

[Quiver0f10]

3)how do we get there (specfically)

 

 

See this is what I had hoped the most to gain from testing. What do we do now? I am supposed to call her back next week once I have had time to think it over some.

[Quiver0f10]

Just remember you have support and hang on , the rainbow is just over the horizon.

 

Thanks, I needed that.:)

[Quiver0f10]

Could you make an appointment with an NP and ask him if medicating and retesting is something he would recommend? If it is, you could try it before his appointment and be that much further along in the evaluation process.

 

I am hoping we can get in soon or at the least have a phone consult prior to meeting. I will call Monday morning.

[Paz]

I am confused about the "severe reading disability." I am wondering if he has dyslexia? I know that many states do not recognize dyslexia as a disability that would allow accommodation and treatment in the public school system so many Educational Psychologists or Neuropsychologists do not do specific testing for dyslexia. My dd was tested twice. Once but a highly recommended Neuropsychologist and just recently by an Educational Psychologist. The test results both times were almost identical. The Neuro. said that she was an normal, average child. The EP did additional testing specifically for dyslexia and found that she does have dyslexia. The tests her had her do for dyslexia were very specific.

[Ottakee]

I have a kiddo that is similar--seizures (but hers are mirgaseizures and drop seizures, not grand mal), ADHD, LDs, lower IQ, etc. She will be 12 in 3 weeks.

 

She is on Lamictal and that helps the seizures and migraines--as well as mood and cognition. She does take Dexedrine for her ADHD--we waited a few years to start but it has made a HUGE difference for her in learning--she gained 2 years of skills in 6 months after we started meds. She should be in 6th grade and is doing 4th grade ACE but doing well so I am happy.

 

I would be apt to try the meds---after talking with the neuro about which one would be best to try first (and realize that it can take some trial and error to find the right med).

 

We though also do the fish oils (with neuros blessing). My girls each take 3 of the http://www.omegabrite.com capsules per day. They certainly help but aren't enough for the ADHD for them.

 

Have you ever checked out the I See Sam reading program? It is very effective for struggling kids, easy to use and less than $250 for K-3rd grade levels (if he is below that). Apples and Pears is a great spelling program for struggling kids as well.

[Quiver0f10]

I am confused about the "severe reading disability." I am wondering if he has dyslexia? I know that many states do not recognize dyslexia as a disability that would allow accommodation and treatment in the public school system so many Educational Psychologists or Neuropsychologists do not do specific testing for dyslexia. My dd was tested twice. Once but a highly recommended Neuropsychologist and just recently by an Educational Psychologist. The test results both times were almost identical. The Neuro. said that she was an normal, average child. The EP did additional testing specifically for dyslexia and found that she does have dyslexia. The tests her had her do for dyslexia were very specific.

 

 

She said that yes he has dyslexia, but that they label it "reading disability". Will I have trouble getting him accomadations if the report doesn't say the words dyslexia?

Edited November 16, 2008 by Quiver0f10

[Quiver0f10]

I have a kiddo that is similar--seizures (but hers are mirgaseizures and drop seizures, not grand mal), ADHD, LDs, lower IQ, etc. She will be 12 in 3 weeks.

 

She is on Lamictal and that helps the seizures and migraines--as well as mood and cognition. She does take Dexedrine for her ADHD--we waited a few years to start but it has made a HUGE difference for her in learning--she gained 2 years of skills in 6 months after we started meds. She should be in 6th grade and is doing 4th grade ACE but doing well so I am happy.

 

I would be apt to try the meds---after talking with the neuro about which one would be best to try first (and realize that it can take some trial and error to find the right med).

 

We though also do the fish oils (with neuros blessing). My girls each take 3 of the www.omegabrite.com capsules per day. They certainly help but aren't enough for the ADHD for them.

 

Have you ever checked out the I See Sam reading program? It is very effective for struggling kids, easy to use and less than $250 for K-3rd grade levels (if he is below that). Apples and Pears is a great spelling program for struggling kids as well.

 

This is very encouraging! I am going to discuss our options with his neuro tomorrow and see. I don't mind meds if they will help, I just wasn't so sure it was safe.

 

We do have the first 3 levels of the "I See Sam" Books and he reads a few a day. He is reading on a grade 1.4 level and spelling K.7 . We are using Barton's as our main program and are ready to start level 3.

Edited November 16, 2008 by Quiver0f10

[Ottakee]

If you can afford them, I would see about getting the next levels of the I See Sam books. Levels 4 and 5 really crank up the reading. After those, my 13dd is able to read much of the Bible on her own, many other books, etc.

 

I honestly don't know much about Barton but we have very good luck with the I See Sam books and Apples and Pears for Spelling---easy to use, doesn't take much time, and quite inexpensive (as far as special needs programs go).

[cillakat]

Also, Daniel Amen's books are great.

 

As I sit here this am, I'm thinking of all that we do to help dd along. She gets adderall and I woulnd't want to be without it, but we continue most of the 'natural' stuff too.

 

~protein at every meal and snack

~minimal grains/maximum nutrition (most of the time;p)

~fish oil, multi (super nutrition 'perfect kids'), 30 additional mg zinc every other day, p5p every other day, 1000 IU vitamin D daily in addition to the D in her multi and the wild salmon/sardines she eats,

~optimal amounts of exercise....vigorous outdoor activity every afternoon for at least an hour....

~as much 'outdoor' time as possible (evidence supports this as part of adhd treatment)

~optimal amounts of sleep.

 

Anyway....Amen's books. He goes into various brain issues and their effects.....epilepsy has a significant temporal lobe component iirc which is which mood stabilizers are often used to treat it (I think this is what I recall reading....it's not an issue I've ever studied so I could be remembering it wrong). Then the question becomes, what else can I do to support normal temporal lobe function....or in the case of ADHD, what are the neurotransmitters that tend to be low, how does that affect prefrontal cortex function, what can I do to optimize that?

 

I found SAM-e, D and fish oil when taken in combination at sufficient doses to be about 50% helpful for my ADHD symptoms. Adderal...about 90% helpful for my ADHD symptoms (but not without side effects...that I manage with other natural stuff).

 

The adderall gives me this intense edge and worsens my hyperfocus - bad if I'm on the computer;p good and bad if I'm doing school with the kids (ie I often will want to push through something when they need breaks) good for 'getting stuff done' around the house. inhibitory amino acids support inhibitory/calming neurotransmitters so I take more GABA, more glycine, a little tryptophan (though that can worsen adhd symptoms so I'm careful with that), niacinamide for the irritability.

 

Fish oil alone wasn't helpful, but helpful in combination....and so helpful for the anxiety/depression I used to have....and helpful for things (heart arrythmia, joint stuff, inflammation, triglycerides etc). It's worth it for everyone to get fish oil or fatty fish daily.

 

I can't remember if I posted this here:

http://www.medscape.com/viewarticle/567073

 

all the best,

Katherine

[Quiver0f10]

If you can afford them, I would see about getting the next levels of the I See Sam books. Levels 4 and 5 really crank up the reading. After those, my 13dd is able to read much of the Bible on her own, many other books, etc.

 

I honestly don't know much about Barton but we have very good luck with the I See Sam books and Apples and Pears for Spelling---easy to use, doesn't take much time, and quite inexpensive (as far as special needs programs go).

 

 

I will see if we can swing the next 2 levels. He really enjoyes reading them and I can tell he is proud when he finshes a book.

[Quiver0f10]

Katherine,

 

Thank you so much for the informative post. I am going to look into all the recommendatiosn and talk it over with DH and the Dr this week. I really appreciate the help!

[LizzyBee]

She said that yes he has dyslexia, but that they label it "reading disability". Will I have trouble getting him accomadations if the report doesn't say the words dyslexia?

 

We're going through the testing process now, and we were told that Dyslexia is a medical term. In NC, both NPs and EdPsy's use the term Reading Disability. Supposedly if they use the term dyslexia they could be charged with practicing medicine without a license. But they use medical codes for what they do, so I don't really get the distinction. One of my friends whose son is dyslexic told me that if we're offered a functional MRI to confirm a dyslexia dx, don't do it because the majority of kids who meet the clinical criteria for a dyslexia/reading disability dx actually test neg with the MRI, plus the functional MRI is very stressful for the kids because of the tasks they have to perform during the MRI. If an MRI is neg for dyslexia, it gives the school system an "out" IRT offering an OG reading program. (In NC, the school system will not offer services to homeschoolers (testing, yes; services, no) so it's actually a moot point unless a homeschool family decides to send their children back to school.)

 

In order to join the audiobook borrowing program offered by the Library of Congress, you have to have the child's doctor sign a form stating that the child's reading disability has a medical/neurological cause. Since my 7 yo has an APD dx, I think we're covered there even without having a dx that uses the term dyslexia. Also, in order to deduct (or get reimbursement through a medical reimb plan through an employer) the cost of OG curriculum, tutoring, and/or tuition for a dyslexia school, you have to have a medical diagnosis and a recommendation to use OG materials. Again, I think in our circumstances, we're covered because my 7 yo has the APD dx. The only thing I'm uncertain of is whether the EdPsy's recommendation to use OG curriculum will be sufficient because I don't know whether the IRS will view an EdPsy as a medical professional even though they use medical codes for what they do. To be on the safe side, once we have the EdPsy's report, I am going to ask my dd's MD for a written recommendation to use OG curriculum.

[Quiver0f10]

 

In order to join the audiobook borrowing program offered by the Library of Congress, you have to have the child's doctor sign a form stating that the child's reading disability has a medical/neurological cause. Since my 7 yo has an APD dx, I think we're covered there even without having a dx that uses the term dyslexia. Also, in order to deduct (or get reimbursement through a medical reimb plan through an employer) the cost of OG curriculum, tutoring, and/or tuition for a dyslexia school, you have to have a medical diagnosis and a recommendation to use OG materials. Again, I think in our circumstances, we're covered because my 7 yo has the APD dx. The only thing I'm uncertain of is whether the EdPsy's recommendation to use OG curriculum will be sufficient because I don't know whether the IRS will view an EdPsy as a medical professional even though they use medical codes for what they do. To be on the safe side, once we have the EdPsy's report, I am going to ask my dd's MD for a written recommendation to use OG curriculum.

 

She did mention that she will sign the form for the LOC audio books, but I didn't know I could possibly get an OG ( Barton's would be awesome) through my insurance if I have a diagnosis? So I should see his primary care physician for the referral or is it a prescription? Very interesting!

[cillakat]

"I am confused about the "severe reading disability." "

 

another name for ........dyslexia.

 

 

 

" Educational Psychologists or Neuropsychologists do not do specific testing for dyslexia"

 

I keep hearing this on this forum and I just don't get it. Why not?

 

<<The test results both times were almost identical. The Neuro. said that she was an normal, average child. The EP did additional testing specifically for dyslexia and found that she does have dyslexia. The tests her had her do for dyslexia were very specific>>

 

Probably the CTOPP and GORT.....then there is the reading fluency component of the WISC and iirc some spelling component as well.

 

When doing reports for kids in public schools in the two 'main' counties here, our EdPsy doesn't use the term dyslexia b/c the schools here don't use the term. She uses 'reading disability' and makes the same recommendations that she would for dyslexia. She writes different forms of the report as needed to get accomodations as time and needs change (ie different schools, SAT testing etc) For homeschoolers and private schools, she uses the term dyslexia.

 

Katherine

[Paz]

If you got the diganosis reading disability and they mentioned dyslexia that is great. With our initial testing even though I said I suspected dyslexia she was not given any tests that required her to read aloud, write, or spell anything. She can read silently and answer questions. She has made enough progress and completed enough tutoring that there is not a huge discrepency between her IQ and her performance on written achievement tests.

[Laurie4b]

The use of the term "reading disorder" will not affect accomodations. Reading disorder and dyslexia are interchangeable terms. Professionals are more likely to use reading disorder than is the general public. That's because in the DSM-IV, which is the mental health diagnostic manual, it's called "reading disorder". Doesn't sound as dramatic, but it's the same thing.

[LizzyBee]

She did mention that she will sign the form for the LOC audio books, but I didn't know I could possibly get an OG ( Barton's would be awesome) through my insurance if I have a diagnosis? So I should see his primary care physician for the referral or is it a prescription? Very interesting!

 

I don't think your insurance company will pay for it. But if your dh has a medical reimbursement plan at work, it may be covered, depending on how the plan is written. If you don't have a med reimb plan, and you do have enough medical expenses to actually benefit from deducting them (> 7.5% of your adjusted gross income), you should be able to include your OG materials if your son's reading disability has a medical/neurological cause and an OG program is recommended by a medical professional.

[Quiver0f10]

ok, that makes sense. Thank you!

[Ottakee]

If you are open to used books I can post on the yahoo group and see if anyone has any for sale.

 

[

[BMW]

I just want to jump in and say thank you to all of you. This is a very helpful thread... applicable to me where I am at. My boy is 11yrs. and his ld is dyslexia. He is 2 years behind in schooling (4th grade in 6th grade) and he has adhd. This is helpful. We are in a similar position as op, but our next step is in Feb. with a new ped. In the meantime, dh opposes med. completely, I want to try it and see... and I think there is merit to "if the medication for adhd works"...

 

Anyway, I was just browsing and learning and enjoying all of the input here.

 

Bee