My son is in first grade and hates anything to do with learning to read. I recall hearing somewhere that some of our boys have trouble learning to read. But I don't recall why. Is there a teaching method that works best for our boys? Any input would be appreciated. Thanks, Cindy

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Thanks Brian! This is what I thought. My son is only 11 months old and has a deletion of exon 50 so isoforms Dp 427, 260 and 140 are not produced. It is too early to discuss cognitive delays.


Brian Denger said:
Hello Ofelia,

Matthew repeated kindergarten due to social maturity issues, yet he did not exhibit the same learning challenges as his brother. At this time Matthew is a sophomore in high school and finished his freshman year with highest honors. I would have to say that just as in the physical disparities one sees in boys who have DMD there are also variances in cognitive abilities even among sibling or those with identical mutation type. Additionally, each of us has individual strengths and it is possible Matthew was better able to compensate for any deficiencies.

As much as is known about the Natural History of DMD there is still much that is not fully understood. Questions that come to mind include what other factors influence the cognitive profile associated with DMD and does this lead to greater rate of co-occurring behavioral or cognitive disorders? From what I have read the rate of incidence of ADHD and Autism co-occur more frequently in the DMD community, yet what are the triggers, etc... Researchers have spent much time on the physical aspects of DMD, while the cognitive discrepancies and delays are less studied and therefore less understood.

Brian
For some kids, you can look at what exons they are missing and then look at the isoform promoter map and determine it that way. But, similar to what Brian is pointing out, there are many factors that go into what can cause cognitive/behavior/developmental problems, and it is not a direct relationship between the mutation and the effect on the brain. We are only talking about "risk factors", so you can't always look at a mutation and predict with a 100% accuracy on what will happen, only what might happen. We have a hard enough time figuring out what might be causing ADHD, Autism, etc. in kids WITHOUT DMD, let alone those who have it.

Regarding the memory problems and slow processing speed, those can often be hallmark features of attention-deficit disorder. Reading problems and ADD/ADHD overlap about 40%, so if you have one it increases that chances that you will have another. I'm not saying this is what is going on with your son, but just something to keep in mind. Having both a reading problem and an attention problem creates a "synergistic" effect (e.g., the attention problems make the reading problem worse and they are less likely to pay attention and exert effort during interventions for reading and having difficulty reading makes it more likely that you are not going to pay attention, etc.).

Karen Barnett said:
James,
Thanks for explaining about the "isoforms". I have read about this and knew that they played a role. I was wondering if there was any way they could determine if these isoforms were affected and to what extent in an individual child?

Also while my son's school is doing "whole word memorization" they are not totally relying on that method. They are still trying to teach him phonological awareness. Another significant problem that comes into play is my son has memory issues. It makes it even harder when it comes to him remembering his letters and retaining things thus making the reading/learning process even more difficult. As well his ability to process information both receptive and expressive is slow.
My son had all those problems with learning to read.He is now in 3rd grade ( he was from late July , so he was withhold one year in preschool, as we had feelings that he was not ready to be send to K). .Also he was in special ed classes 3 times a week besides regular Preschool as a intervention after volunteering testing done in all kids registered in our school district in age 2 and up.On this time he was showing non-specific more likely behavioral problems.That was before diagnosis of DMD.( He was diagnosed in age almost 6) He had IEP since 1st grade. We have very good school district and they have many innovative methods of learning. They have one on one program and in small groups (5-6 kids).teachers work with him and we worked a lot at home. The classes in our school are small (13-14-15kids)and there is 2 teachers( second is more like teacher aid , but we call them all teachers)We also were pushing him to learn second language which is Polish and he has Saturday school.( that was against suggestions at school in early age -do not confuse him with second language)There was a lot of difficulties and lot of reading done in both languages. I was afraid that he may have reading problems for ever , but this school year it turns that he is great , fluent reader. Actually I picked him today from Polish school and teacher said that Jacob surprised everybody (pause ..and my hair start to stand up??????) . , then she add that he was reading so nicely that kids applause him . I expect anything but not this .( not in Polish language, all dz, rz, sz .cz etc) ) . Also his teacher from school on our early IEP meeting this year stated that she sees many strong sides of Jacob and one of it- it is reading . She said that he reads nicely and fluently .To tell you truth ," big stone fall from my heart" this year because I was afraid that he may have problems with reading for ever and then with rest of the academics as reading is base of everything what they do at school. We also moved this vacation , and due to packing , moving and fixing new house , he was abandoned by us , for long hours and left to play video games.I was filling guilty about that , but we didn't have much choice , as we need more adoptive house for his needs. I can really say today : I been there .....where many parents of younger kids are now . I can also cheer you up , that those little DMD brains may have difficulty to learn how to read , but once they will get it , they will get it good and for ever....

James Poysky said:
Hi James,
If you wouldn't mind sending me that learning guide you mentioned, I would be very grateful. Thanks very much.
randy.currier@comcast.net

Linda
I have a 16 yr. old. that was having reading problems also when younger. He did a Linden Mood Bell program for phonological awareness. It was expensive but helped until recently. He is in 11th grade and is reading harder and more mature books and plays (the Crucible). His comprehension is being affected due to the fact that when he comes across a word he doesn't know, he skips it instead of trying to decipher it. He listens to his books on audio while reading along and this seems to help a little. Our problem is that at this age, we don't know what to put in his IEP for accomdations. They said that don't have anyone to pull him out to teach him decoding. Any ideas or suggestions on accomdations or strategies would be much appreciated.
I have to agree with Bozena. Jacob is 8 and was diagnosed at 7. He was held back in kindergarden so is in 2nd grade this year. He hated reading last year and couldn't understand why he needed it. He was taken to a special class for reading and math. This year he is now in the regular class for reading and reading everything in sight.

We made cookies this past weekend and I was thrilled when he could read the recipe to me and he had such a big smile on his face from being able to read it.

It will click for your sons and like Boxena says "once they have they they don't lose it" and it opens up a whole other world for them:)
My son is a typical example of that what James wrote. He had regular interventions at school and now by 3th grade he reads very well . Also his comprehension is exelent .( he reads in 2 languages fluently by now).It took lot of experiments and time but can be done.He was in 5-6 kids groups , but there was too much motion for him to concentrate. The best results start to be, when he was in one on one with special reading teacher.We also read every day at home without excuses.Took longer , and I was really afraid that he will be late with all schooling because of luck of reading, but it turns that we are like everybody else now. Big stone fall off from my heart. reading is a basic of everything in regards to school and homework and future.We are lucky with the school district, we have great specialists and there is not many kids in the classrooms . In case your school is overcrowded , you need to spent some time with advocacy there towards that one on one lessons, I bet , but tell them that that is the best and faster way , so they will not circle other options.I observed that with age he better concenrates . Or I would say is more interesting for him to concenrate , when he is on same level as others .Also with math you would need some extra time in the future. Jacob is on multiplications now and he is doing fine with 9's currently. I beleive that all the time he spent with my husband on math in previous years are paing off now.
Ups, I am so triled to share my observations from reading history in case of our son, tat I forget that I shared it onCe alredy here few days ago . Sorry for to much of me sharing, but that was really problem for me and my son and now I fill much better and my son too and world looks much better to us with ability to read.That is why I like to share our expirience because I know that this is very important for many of you. ( of US)
Yesterday , we had book fair at school , we get few books and he start reading one on the way to ortho place to ajust shoe inserts, and by the time we get there he was on page 25. ( about 15 minutes drive) . THE NEW WORLD OPENS FOR US!!!!!! We love you Mrs. Morris
Bozena Sporna said:
My son is a typical example of that what James wrote. He had regular interventions at school and now by 3th grade he reads very well . Also his comprehension is exelent .( he reads in 2 languages fluently by now).It took lot of experiments and time but can be done.He was in 5-6 kids groups , but there was too much motion for him to concentrate. The best results start to be, when he was in one on one with special reading teacher.We also read every day at home without excuses.Took longer , and I was really afraid that he will be late with all schooling because of luck of reading, but it turns that we are like everybody else now. Big stone fall off from my heart. reading is a basic of everything in regards to school and homework and future.We are lucky with the school district, we have great specialists and there is not many kids in the classrooms . In case your school is overcrowded , you need to spent some time with advocacy there towards that one on one lessons, I bet , but tell them that that is the best and faster way , so they will not circle other options.I observed that with age he better concenrates . Or I would say is more interesting for him to concenrate , when he is on same level as others .Also with math you would need some extra time in the future. Jacob is on multiplications now and he is doing fine with 9's currently. I beleive that all the time he spent with my husband on math in previous years are paing off now.
Hi James, I have just read your notes and would be very interested in your learning guide, if you don't mind. My son is 7yrs. old (second grade). My e-mail address is isarobandre@hotmail.com
Thank you very much for your help. Isabel


James Poysky said:
Boys with DMD have the same kind of reading disorder that the general public does, it just occurs more commonly (about 40% of boys with DMD vs. about 5 to 10% of the general population). This is commonly referred to as dyslexia. Contrary to common belief, this is not due to a visual problem. Rather, 98% of the time it is related to deficits in phonological awareness (understanding that spoken words are made up of small sounds that are blended together) and subsequent problems breaking spoken words down into sounds and being able to manipulate them. As a result, they have difficulty on several levels of reading including matching up the correct sound with what they see (sound/symbol associations such as letter names and letter sounds). They also have difficulty looking at printed words, breaking them appart into their appropriate sounds, and then blending them back together to make the word.

Evidence suggests that boys with DMD respond to the same kinds of interventions that other children do, namely phonological awareness training and systematic (synthetic) phonics instruction. The problem is they need a lot of it, and they need it on a daily basis. About 70% of kids with dyslexia respond to this kind of intervention, and probably the more severe the root problem the less likely they are to get benefit from intervention. Oral guided reading can also be helpful in improving problems with reading fluency, but is probably not as helpful in addressing the core deficits. The earlier you jump on this the better the outcome. The brain starts to get more hard-wired at 9 to 10 years of age and it gets harder to make progress. Send a message to my account that includes your email and I will send you a learning guide for boys with DMD.
hello ,my son he is secand grade he have trouble in reading but math he is doing better but this he get better ,you can halp all your kids to learn to read just go to www.starfall.com this website he help lot kids in kindergarden and first grade it good web site good luck.
Above Dr. Poysky said "In addition to the full-length dystrophin that boys with DMD are missing in the brain, there are also five smaller versions called "isoforms" that the body makes as well, and are present to a greater or lesser extent in the brain. Because the promoters or "starting points" are located at different areas of the DMD gene, most boys make some or all of the smaller isoforms. Boys who are missing two important smaller isoforms are at increased risk of having significant mental retardation (also called global learning disorder in the UK).

Dr. Poysky - can you identify where in the dystrophin gene the promoters or 'starting points' are located?
Thanks.
Char Burke
Here they are (you can see the promoters at the link):

http://www.dmd.nl/isoforms.html#proms

DP427 muscle, neurons
DP260 retina (Dp260 expression in retina is found in the outer plexiform layer exclusively and lies at 10-20% of that in muscle)
DP140 neurons, kidney (Dp140 expression was detected throughout the central nervous system (i.e. cerebral cortex, cerebellum, hippocampus, brain stem, spinal cord and olfactory bulb) and kidney but not in skeletal muscle, cardiac muscle, lung, liver and spleen)
DP116 Schwann cells (Dp116 has been exclusively found in adult peripheral nerve, along the Schwann cell membrane)
DP71 Universal (Dp71 is the most abundant dystrophin in brain and liver and the predominant isoform in astrocyte and glioma cell cultures)

Ofelia



Char Burke said:
Above Dr. Poysky said "In addition to the full-length dystrophin that boys with DMD are missing in the brain, there are also five smaller versions called "isoforms" that the body makes as well, and are present to a greater or lesser extent in the brain. Because the promoters or "starting points" are located at different areas of the DMD gene, most boys make some or all of the smaller isoforms. Boys who are missing two important smaller isoforms are at increased risk of having significant mental retardation (also called global learning disorder in the UK).

Dr. Poysky - can you identify where in the dystrophin gene the promoters or 'starting points' are located?
Thanks.
Char Burke

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