Guest guest Posted February 25, 1999 Report Share Posted February 25, 1999 > > > Anne ask me the same thing and I posted a reply, let me know if you didn't > get and I'll repost it to you. As I explained to her, I'm not experienced > enough to decipher between the two (language vs. auditory processing > disorder). Maybe Laurie can help us? and - It has to do with the area of the brain that is not working right. A language processing disorder is one in which the problem is with the words - not being able to retrieve them, make sense out of them, find the correct ones to express ones self. The auditory processing disorder has more to do with auditory memory (remembering the entire sentence to get meaning) and audiotory filtering of background noise (knowing what is important and what is background - figure-ground). When you look at what the child is having trouble with, it is sometimes hard to tell which it is without the testing that has been developed to do just that. I hope this helps. Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 1999 Report Share Posted February 25, 1999 > Hi - Welcome to the lists. > 1. If you live in the NE area of the country where would you pursue > mitochondrial testing? We live in CT, could travel down to KK > (Baltimore) for example or up North too. I live in Michigan and ended up going to see Dr. Shoffner in Atlanta last summer. I had had four frozen muscle biopsies and four different diagnoses. Someone who lives in your area might know of someplace closer than Atlanta, but personally I wouldn't put through a muscle biopsy unless it was going to be a fresh one. > 2. Do any of you have experience with blood work pointing to mito > disorders in the first place, and then proceeding with a muscle bio? I > think amanda's blood work does not really point in this direction, yet a > few docs we work do suspect she may have a mito disorder. Again, there isn't much reliability in this. Once a mito disorder has been found via fresh biopsy, and if the defect is in the mito DNA, then blood can be used to check other family members. > 3. Is a muscle bio the definitive test of a mitochondrial disorder? There is probably a chance that someone could have mito and not have it show up in the muscles, but in some other organ, but the muscles are so energy dependent that the defect is usually there and this is what the docs seem to use. > Thanks for humoring me on answering these beginner questions, I'm trying > to catch up as fast as I can. It has been a really bad year for amanda, > I have feared a few times she would die because her breathing became > really bad, and she lost many many skills. I think the docs did not > pursue muscle bio testing at this point since they suspected she was > degenerating, and she was, pretty rapidly. So we have not pursued it > either much for the last year. > > She is improving right not on creatine monohydrate - something used in > some of the mito circles from what I understand - and I'm adding in mito > types of supplements at this time. I suppose it could be coincidental, > but I doubt it - she is definitely breathing better and some motor > skills have returned, and her tremor is reduced. We have all been where you are now. This is the place to ask questions. I'm glad is doing better on the suppliments. Keep asking those questions. Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 1999 Report Share Posted February 25, 1999 >From: Laurie >Where I work, the audiologist doesn't even consider a CAPD evaluation for those with a hearing loss, >because they already qualify for FM amplification. He starts all kids out with individual FM >amplification at school and aides at home. This way the child is not having to filter out competeing >sounds. I hope this helps. The FM amplification was recommended for Mackenzie, but the school didn't feel it was appropriate at this time, that the teacher could implement other techniques to help her. Because I was in a battle with the school to get services for Mack, I let go of the issue of the FM device. We finally got her help through a 504 Plan instead of an ISP. She is still struggling, but slowly improving. I decided to wait on the FM amplification until she has the CAPD testing done. I think the school will have a harder time denying it if she is definitely diagnosed with CAPD and it is recommended again. Thank you Laurie for replying to my post. Would you (or anyone else) have any suggestions on how to deal with the school on this issue. If after the testing, she is diagnose with CAPD and a FM amplification is recommended, are there different kinds (some better than others) that we can suggest to the school? Thanks for reading, Lipps Savannah (almost 3 yrs old!) And anxiously waiting for biopsy results from Shoffner! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 1999 Report Share Posted February 25, 1999 For Tylynn's CAPD we also have slowed our speech to him, talk more quietly one on one facing and at times touching him (preferably get in a quiet area) and also learned to talk in more simple terms. Life is so overwhelming when it is all jumbled in your head. It has been hard for me with my hyperactivity to slowdown and be quiet and be simplistic but I think it is good for me to learn how to do these things too. You can tell he really appreciates it. They are having special testing at school in March and they tell me the only thing they are allowed to do to help him is read him the questions. It is 4 days worth so I hope it is OK on him. I am going to tell him it is not all that important so just try to enjoy the change of schedule for a few days. S. Re: Aggression > > >Central auditory processing disorder. His hearing per se is fine but he >when tested as to how he processes it once in the brain he was more than 2 >standard deviations from the normal and diagnosed with a severe disorder. >However, at the moment e have found all sorts of things to do - mainly with >visuals , slowing down our speech and re wording things in a simpler, less >wordy way so that he is compensating beautifully in school. he has more >trouble at home as it is not as structured and quiet here . We were told >this was due to cerebral involvement from the Mito disease. >Anne >---------- >> >> >> Hi Anne- >> >> What is CAPD? >> > > >------------------------------------------------------------------------ >Ta Da! Come see our new web site! >http://www.onelist.com >Onelist: A free email community service >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 1999 Report Share Posted February 25, 1999 , how is a language processing disorder different than the central auditory problem? S. Re: Aggression > > > > > >>From: " Anne and Lou Juhlmann " > >>Central auditory processing disorder. His hearing per se is fine but he >>when tested as to how he processes it once in the brain he was more than 2 >>standard deviations from the normal and diagnosed with a severe disorder. > > > >I started to post yesterday concerning this topic, but my computer decided >to gobble up my saved e-mail messages and I lost the original post! (Thanks >Jim for trying to help - still no luck!) > >I believe it was Lori who mentioned that Alycia had hearing problems and >maybe CAPD. (Sorry, Lori, if I'm mixed up on this). I have a 6.5 year old >daughter who has (unofficially) been diagnosed with CAPD, as well as, a >Language Processing Disorder (officially). Phoenix Children's Hospital will >not test a child until 7 years of age, although they agreed to test >Mackenzie at 6.5 yrs old. Additionally, I was told that a child with CAPD >does not have a hearing loss/problem. Mackenzie's hearing is great, and >this, according to the hearing specialtist at Phx. Children's, helped >support the theory that she has CAPD. Could this person be wrong about how >a child couldn't have a hearing loss and CAPD? > >Thanks! > > Lipps >Savannah (almost 3 yrs old!) >And anxiously waiting for biopsy results from Shoffner! > > > > >------------------------------------------------------------------------ >If you like orange and blue, then you will love our new web site! >http://www.onelist.com >Onelist: ing connections and information exchange >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 1999 Report Share Posted February 25, 1999 >From: " " > >, how is a language processing disorder different than the central >auditory problem? S. , Anne ask me the same thing and I posted a reply, let me know if you didn't get and I'll repost it to you. As I explained to her, I'm not experienced enough to decipher between the two (language vs. auditory processing disorder). Maybe Laurie can help us? Sorry I can't really answer your question! Lipps Savannah (almost 3 yrs old!) And anxiously waiting for biopsy results from Shoffner! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 1999 Report Share Posted February 25, 1999 Hi everyone, I new to both of these lists, but the more I read about mitochondrial disorders and read your posts, I'm really thinking about pursuing a mito disorder for amanda - my daughter, who is 7. She has been diagnosed for about a year with atypical retts, and I've spent quite a bit of time researching retts and talking to families with retts girls, and is just not really a fit - but does have hyperventilation, one of the hallmark characteristics. But here on the mitochondrial lists, I've already seen several people identify traits in their children or themselves that I've not really been able to find on the rett net - tremors ( has a lot of tremors and even a Parkinson one like - no one on the rett net has that) and she is really really really noise sensitive - another thing most girls with retts do not have problems with - the hyperacuity. So, my main questions are: 1. If you live in the NE area of the country where would you pursue mitochondrial testing? We live in CT, could travel down to KK (Baltimore) for example or up North too. 2. Do any of you have experience with blood work pointing to mito disorders in the first place, and then proceeding with a muscle bio? I think amanda's blood work does not really point in this direction, yet a few docs we work do suspect she may have a mito disorder. 3. Is a muscle bio the definitive test of a mitochondrial disorder? Thanks for humoring me on answering these beginner questions, I'm trying to catch up as fast as I can. It has been a really bad year for amanda, I have feared a few times she would die because her breathing became really bad, and she lost many many skills. I think the docs did not pursue muscle bio testing at this point since they suspected she was degenerating, and she was, pretty rapidly. So we have not pursued it either much for the last year. She is improving right not on creatine monohydrate - something used in some of the mito circles from what I understand - and I'm adding in mito types of supplements at this time. I suppose it could be coincidental, but I doubt it - she is definitely breathing better and some motor skills have returned, and her tremor is reduced. Thanks, , , unclear diagnosis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 1999 Report Share Posted February 25, 1999 Central Auditory Processing Disorder. The child hears the information but there is a delay in appropriate response because the brain takes longer to process what was said. kevin fitzpatrick wrote: > > > Hi Anne- > > What is CAPD? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 1999 Report Share Posted February 25, 1999 Anne and Lou Juhlmann wrote: > We were told > this was due to cerebral involvement from the Mito disease. > Anne Anne, who told you this? What sort of cerebral involvement are you talking about? Is this a common Mito problem? Alycia most likely has CAPD. Does this mean her brain has diseased Mito? Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 1999 Report Share Posted February 25, 1999 Laurie wrote: >It has to do with the area of the brain that is not working right. A language processing disorder is one >in which the problem is with the words - not being able to retrieve them, make sense out of them, find >the correct ones to express ones self. The auditory processing disorder has more to do with auditory >memory (remembering the entire sentence to get meaning) and audiotory filtering of background noise >(knowing what is important and what is background - figure-ground). When you look at what the child is >having trouble with, it is sometimes hard to tell which it is without the testing that has been developed >to do just that. > >I hope this helps. > >Laurie Thank you Laurie! It does help. By the way, Mackenzie's CAPT is March 9th. Thanks also for the information on the FM amplification systems. Does CAPD fall under Learning Disabled? Should I have a hard time getting her certified Learning Disabled? Lipps Savannah (almost 3 yrs old!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 1999 Report Share Posted February 25, 1999 > Anne, who told you this? What sort of cerebral involvement are you talking about? Is this a common Mito problem? His neurologist told us this as did another doc of his.I really have no idea exactly what they are talking about -they just said bi hemispheric cerebral involvement . I don't think anyone knows for sure - just an explanation they feel fits for his processing, recent problems with memory and autism disorder and how they are linked to Mito. I always thought that cerebral involvement was common but I don't know for sure. I'm not that worried about it to be honest because Zach is compensating very well right now. Zach has never had an MRI as he has metal sutured to his esophagus -( hopefully to be removed next week though ). > > Alycia most likely has CAPD. Does this mean her brain has diseased Mito? No - I would not say that. I think her doctors would have a much better guess than me. This is just what Zach's docs say about him having known him since he was a baby and having watched some of the changes he has had. I think you have to look at the whole picture and I don't know Alycia well enough or have enough knowledge of how Mito affects the brain to be able to say. Anne > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 1999 Report Share Posted February 26, 1999 Tylynn has both of these problems or should I say all of them and then some. I can also identify to a lesser extent. S. Re: Aggression > > > > >> >> >> Anne ask me the same thing and I posted a reply, let me know if you didn't >> get and I'll repost it to you. As I explained to her, I'm not experienced >> enough to decipher between the two (language vs. auditory processing >> disorder). Maybe Laurie can help us? > > and - > >It has to do with the area of the brain that is not working right. A language processing disorder is one >in which the problem is with the words - not being able to retrieve them, make sense out of them, find >the correct ones to express ones self. The auditory processing disorder has more to do with auditory >memory (remembering the entire sentence to get meaning) and audiotory filtering of background noise >(knowing what is important and what is background - figure-ground). When you look at what the child is >having trouble with, it is sometimes hard to tell which it is without the testing that has been developed >to do just that. > >I hope this helps. > >Laurie > > >------------------------------------------------------------------------ >Did you know that we have over 85,000 e-mail communities at Onelist? >http://www.onelist.com >Come visit our new web site and explore a new interest >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 1999 Report Share Posted February 26, 1999 Would you (or anyone else) have > any suggestions on how to deal with the school on this issue. If after the > testing, she is diagnose with CAPD and a FM amplification is recommended, > are there different kinds (some better than others) that we can suggest to > the school? > Our audiologist wrote out a list of recommendations and sent it to the school which seems to always mean more to them than anything I say. You might also have the ENT or neuro write a letter of support? I always take an advocate from ARCH with me to our IEP. Ours is not militant but very assertive and a wonderful advocate. He succeeds in building a bridge with the school system whereas I can get emotional and I think I have the potential to make things worse sometimes. Advocates know the law so well and what they can say to get what your child needs and a good advocate can get the point across in such a diplomatic way that it is often more easily accepted by the school. Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 1999 Report Share Posted February 26, 1999 - There are different tests for screening and testing. I have a chart with these on. I will see how they scan tomorrow and send them. If I can't get a decent scan, I will type the info in. This chart is for CAPD, but there are language ones listed too. I think you need to start with a hearing test and speech and language tests before going the CAPD route. Just my opinion. Laurie > Laurie, do you know if there are different tests for the language disorder > than for the CAPD? I'm wondering if Tylynn doesn't need extra help now for > the language thing. S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 1999 Report Share Posted February 26, 1999 Laurie, do you know if there are different tests for the language disorder than for the CAPD? I'm wondering if Tylynn doesn't need extra help now for the language thing. S. Re: Aggression > > >Laurie wrote: >>It has to do with the area of the brain that is not working right. A >language processing disorder is one >>in which the problem is with the words - not being able to retrieve them, >make sense out of them, find >>the correct ones to express ones self. The auditory processing disorder has >more to do with auditory >>memory (remembering the entire sentence to get meaning) and audiotory >filtering of background noise >>(knowing what is important and what is background - figure-ground). When >you look at what the child is >>having trouble with, it is sometimes hard to tell which it is without the >testing that has been developed >>to do just that. >> >>I hope this helps. >> >>Laurie > > >Thank you Laurie! It does help. By the way, Mackenzie's CAPT is March 9th. >Thanks also for the information on the FM amplification systems. Does CAPD >fall under Learning Disabled? Should I have a hard time getting her >certified Learning Disabled? > > Lipps >Savannah (almost 3 yrs old!) > > > >------------------------------------------------------------------------ >We are proud as punch of our new web site! >http://www.onelist.com >Onelist: The leading provider of free email community services >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 1999 Report Share Posted February 27, 1999 Laurie, Tylynn already had hearing and CAPD tests. But whoever was explaining the differences in the language disorders made it sound like that might be yet another different area maybe we should look into also. I would appreciate the screening tests chart so I could see what he has and hasn't had and what else may be of value to him to have tested. The audiologist still hasn't sent the phonetics test and teaching infor. to me for Kody and his teacher just told me he is really baffling them all with how he can't do certain things. They are looking at special math testing and help for him now too. He was the model kid all week getting to the bus etc. but this am went psycho on me, it was so weird. He overflowed the tub on purpose laughing-flooded the whole floor and out onto the wood floor. Screaming, etc. when he calmed down and I was on my way to school with him he said calmly do you think the new zinc lozenges had something in them? Tylynn and I went over his whole diet yest and couldn't figure out any horrible things but then my daughter in law called and asked how I liked the pumpkin bars she gave me last night. I said I don't know, Kody ate all 4 pieces! Then I knew, she used a special type of cinnamon that makes my heart go crazy (from Cinnabon) & artificial vanilla. Now I have to go to school and get him off the hook for failing to catch the bus this morning as it wasn't his fault he was reacting to something-thank goodness they are working so good and close with us and are so understanding. He was getting extra computer time for catching the bus if he did all week. S. Re: Aggression > > >- > >There are different tests for screening and testing. I have a chart with these on. I will see how they >scan tomorrow and send them. If I can't get a decent scan, I will type the info in. This chart is for >CAPD, but there are language ones listed too. I think you need to start with a hearing test and speech >and language tests before going the CAPD route. Just my opinion. > >Laurie > > >> Laurie, do you know if there are different tests for the language disorder >> than for the CAPD? I'm wondering if Tylynn doesn't need extra help now for >> the language thing. S. > > > > >------------------------------------------------------------------------ >Ta Da! Come see our new web site! >http://www.onelist.com >Onelist: A free email community service >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 1999 Report Share Posted February 27, 1999 - I will look up the language tests and post them. The material is out in my van right now and I'm not yet dressed to go out and get them. I'll do it later today. Laurie > Laurie, Tylynn already had hearing and CAPD tests. But whoever was > explaining the differences in the language disorders made it sound like that > might be yet another different area maybe we should look into also. > I would appreciate the screening tests chart so I could see what he has and > hasn't had and what else may be of value to him to have tested. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 1999 Report Share Posted February 27, 1999 - I will look up the language tests and post them. The material is out in my van right now and I'm not yet dressed to go out and get them. I'll do it later today. Laurie > Laurie, Tylynn already had hearing and CAPD tests. But whoever was > explaining the differences in the language disorders made it sound like that > might be yet another different area maybe we should look into also. > I would appreciate the screening tests chart so I could see what he has and > hasn't had and what else may be of value to him to have tested. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 1999 Report Share Posted February 28, 1999 Lori and Laurie, Very interesting as my son has autsim , we'd like to get tests to rule out mito but cannot and treating him anyway under a developmentel ped/geneticist at a teaching hospital and we are so excited of what is now months on the cofacator vitamin therapy. We are teaching him to read. Or we are proving that he knows how to read. Gained 4 pounds in 2 months!!Eating, sitting, waiting, learning better. I am so excited Our Doc would love to prove that alot of cases of autism is really a mito disorder, but insurance company's will not help. Dr. is seeking kids like my son and really believes or want s to believe that autism is a mito disease.Needs kids like Bart to prove her theory. He fits many of what is mentioned on this list. Kathy ---------- > > To: Mitoonelist > Subject: Re: Aggression > Date: Monday, February 22, 1999 12:09 PM > > > > Lori- > > There does seem to be a higher incidence of autism or PDD in mito folks. > I asked Dr. Shoffner about it and he said that it is hard to know if all > autism is caused by mito or not, since those with autism don't routinely > have fresh muscle biopsies. > > Your best bet would be to find a doctor who specializes in autism and > make an appointment. If it is not, then you will at least have peace of > mind. These docs are usually found in the developmental disabilities > departement of pediatric psychiatric departments of large medical > centers. There are also some good psychologists that work exclusively > with autism that can make the diagnosis. Ask around in your area. I know > it will probably be hard to ask the parent of a child you know with > autism, but they can be a great deal of help in finding the right person > to take her to. > > You could also persue the Central Auditory Processing Disorder too. Some > kids with CAPD look quite autistic in a group. They are usually much > better one on one. > > I have to tell everyone about a 9 year old that I am working with. She > is repeating second grade. She was born without a thyroid gland and has > been slow developing. I started working with her last April. She just > blossomed during the one on one sessions. She gained confidence, her > articulation problems became corrected and she showed more academic > skills than her testing indicated. Two weeks ago she got an Easy > Listener to try for the remainder of the year. It is an individual FM > transmitting device. The teacher wears a mike and transmitter and the > student wears a receiver and ear phones. This little girl who was very > shy and quiet and never participated in class and sat looking around > when she was suppose to be doing an assignment, is now asking questions, > answering questions, talking with peers more and has the same light in > her eyes that she had one on one. She was diagnosed through a hearing > center by an audiologist with CAPD. We are now talking about trying to > pay for total room amplification for next year. It is great to see. > > Laurie > > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 1999 Report Share Posted February 28, 1999 Lori and Laurie, Very interesting as my son has autsim , we'd like to get tests to rule out mito but cannot and treating him anyway under a developmentel ped/geneticist at a teaching hospital and we are so excited of what is now months on the cofacator vitamin therapy. We are teaching him to read. Or we are proving that he knows how to read. Gained 4 pounds in 2 months!!Eating, sitting, waiting, learning better. I am so excited Our Doc would love to prove that alot of cases of autism is really a mito disorder, but insurance company's will not help. Dr. is seeking kids like my son and really believes or want s to believe that autism is a mito disease.Needs kids like Bart to prove her theory. He fits many of what is mentioned on this list. Kathy ---------- > > To: Mitoonelist > Subject: Re: Aggression > Date: Monday, February 22, 1999 12:09 PM > > > > Lori- > > There does seem to be a higher incidence of autism or PDD in mito folks. > I asked Dr. Shoffner about it and he said that it is hard to know if all > autism is caused by mito or not, since those with autism don't routinely > have fresh muscle biopsies. > > Your best bet would be to find a doctor who specializes in autism and > make an appointment. If it is not, then you will at least have peace of > mind. These docs are usually found in the developmental disabilities > departement of pediatric psychiatric departments of large medical > centers. There are also some good psychologists that work exclusively > with autism that can make the diagnosis. Ask around in your area. I know > it will probably be hard to ask the parent of a child you know with > autism, but they can be a great deal of help in finding the right person > to take her to. > > You could also persue the Central Auditory Processing Disorder too. Some > kids with CAPD look quite autistic in a group. They are usually much > better one on one. > > I have to tell everyone about a 9 year old that I am working with. She > is repeating second grade. She was born without a thyroid gland and has > been slow developing. I started working with her last April. She just > blossomed during the one on one sessions. She gained confidence, her > articulation problems became corrected and she showed more academic > skills than her testing indicated. Two weeks ago she got an Easy > Listener to try for the remainder of the year. It is an individual FM > transmitting device. The teacher wears a mike and transmitter and the > student wears a receiver and ear phones. This little girl who was very > shy and quiet and never participated in class and sat looking around > when she was suppose to be doing an assignment, is now asking questions, > answering questions, talking with peers more and has the same light in > her eyes that she had one on one. She was diagnosed through a hearing > center by an audiologist with CAPD. We are now talking about trying to > pay for total room amplification for next year. It is great to see. > > Laurie > > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.