I may have information for the grandmother in New Zealand that may be important to her grandson's well being. My ten year old daughter was diagnosed with Ocular Motor Apraxia as an infant. Little did we know that that would only be the tip to a very large iceberg. At age six she was diagnosed with a rare kidney disease, Nehpronophthisis. There is a genetic link for these two anomalies. Hilderbrant, a German geneticist, was doing research on Nephronophthisis and noticed that two of his subjects exhibited an unusual head movement. On further investigation he found that these two patients had Ocular Motor Apraxia. Nephronophthisis often presents with excessive thirst and excessive urine output. You may want to mention this possiblity to your pediatrician because the kidney disease is rare and not something that may be associated with OMA. I hope this information is helpful.
D.Kelly

My two year old grandson, who has OMI, is very thirsty (He has been tested for diabetes) also he has very loose bowel motions . Has anyone with a preschool child experienced these symptoms.? Otherwise, his development and speech are only slightly slower than the norm. He does insist on drinking from baby bottle rather than from a cup. I wonder if this has something to do with the muscles in his throat/jaw. Alola

From: "shrimpnsquash" shrimpnsquash@yahoo.com

Date: Wed Apr 19, 2006 0:45am(PDT)
Subject: Update on Daniel !

Hi everyone - haven't posted for awhile. Daniel is now 8 years old &
attending regular school in Grade 2 with the help of a full-time
aide. For those unfamiliar with Dan, he has a significant
presentation of COMA with trucunal hypotonia, oral/verbal apraxia,
dysarthria. lately we hav emade some great progress with speech & he
can say several words clearly now. We also are using a Dynavox MT4
for augumented communication. This was provided on loan (after much
kicking & screaming;) by our Provincial Special Ed Technology
Services. It's worth about $9K, but gives him marvelous access to
words/pecs etc. I have been busy reprogramming to to suit his needs
at school/daycare & home. His current therapy program includes SLP,
PT, Music therapy, hippotherapy once a week. We are going to cut out
hippo (horseback) for awhile, as (even as unco-ordinated as he is)he
has expressed a keen interest in Tai Kwan Do - that will be
interesting. He can ride a bike with training wheels & someone
spotting him. I am going to get him a 40hp quad ATV, with a
throttle governor & remote kill-switch. Will be fun for camping.
His balance still sucks but is getting better. His private SLP uses
the Hanen method & has been very good with him, urging more
articulation. He is doing quite well. He loves animals & has a cat,
dog, guinea pig & fish that he helps care for. He has been lucky to
have many good friends at school both students & staff. He is
slowwly learning to read & write. He loves the computer!

Anyway hope all is well with other kids!
-Fellow COMA parent, Cindy

Hello all,

Availability and service on the OMA web site may be
affected over the next couple of weeks.

I am moving it to a company which offers lower running costs.

I will post another message on this guestbook when it is all sorted,
and send out a message on the Yahoo OMA mailing list.

The Yahoo OMA group should not be affected.
http://groups.yahoo.com/group/oma/

Many thanks,
Rob

My son is 18 1/2 months. He was diagnosised with COMA and will be receiving PT, OT, SP and visual therapy. I have found this sight to be helpful. I am interested in more information that people have found helpful with dealing with COMA and therapy.

Thanks Beth....I know not everyone can come....

If anyone CAN come....please let me know because we wont really be able to do this unless we get a decent amount of people....say maybe at least 7 or 8 families if we can

lets try

PS.,....no, we are not going to go to your poker sites, or online casinos-nor are we going to buy drugs from your online pharmacy

Dan and everyone else,

I just want to say the picnic idea is a good idea, it is just so far away and
we are so spread out. Last summer I go together with a mother (hello
Amber!!) and her son, who has OMA, and even though I am 32 and her son was 2(?), I
was glad to finally see someone else in the world with OMA. So even if you can
not get to this picnic, maybe at least try to meet with someone who is closer
(geographically) to you. It is a good experience! I myself cannot attend
this picnic because of prior commitments and money, but maybe one day. Good Luck
planning it!!

Beth Brace
eaholtb@cs.com

ha, jill, youve been through a lot, and have the scars to prove it.

Ive kinda been at a disadvantage thru most of my life because-until i saw this website-i didnt even have much of an understanding of OMA. Many of the balance problems and whatnot that i had-i was led to beleive were my own fault.....not meaning to break TOO bad on my rents....they didnt know either.....but perhaps they could have done more research.

I hear lots of things here (jason and jill) about having been thru occupational therapy and whatnot....i have had none of that....i was just weird....and when i see what efforts many of you parents have done for your kids....i feel kinda sad i must admit-because i got none of that....i honestly remember NO special classes or extra attention at school-and i may be better off if i had.

UG....dont mean to pour out like this, just rambling

o well, enough of that....remember id still like to get together i july...and the clock is ticking folks!!

who can come, and who cant...thinking a weekend in mid july, email me or post on here if you wanna come....i think this will be fantastic if we can pull it off.....imagine what it will do for your, or your childs slef-esteem to meet others with OMA face to face---i never have!!

For the summer, months ski ing would be another fantastic sport to learn as its all balance again. Oma ers can ski too. We dont have snow near us in Australia but Jason did go to roller skating as well.
We have snow near Canberra but thats interstate from here and we havent been in the snow season. Some even learn to ride a bike.
Take care

Jason is 24 years old, and quite social. Its important for your child to learn to laugh when they full down so people laugh with them not at them.
its important that you laugh as well, and probably say you silly duffer in a good way, so the child thinks its funny not cruel. Little children arent necessarily cruel, unless the child gets cross and then the other will retaliate. I hope you can understand this in a nice way as our children need all the friends they can get going through school ( you do not want them isolated)
Learning to swim will give them self esteem, so will gym as they will gain balance with both activities, and when they get a trophy there wont be a dry eye around. My son was given a trophy in both swimming and gymnastics. I had to be there at both swimming and gym. The gains they make at a younger age is more beneficial in the long run. By the age of six he was climbing monkey bars, like the other kids and learning to hold on, and eventually in swimming you could not pick him out amongst the other able bodied swimmers, doing lap after lap at a world class swimming school, that has taught olympic swimmers

children with oma do not lose previously aquired skills, they get better over time so does their balance. I found with my son as his body aligned so did his skills. but its a day to day thing. The more they do things the better they get but they must be taught properly. Swimming works wonders as its all the body that is involved as well as left and right sides of the body. gym as well the younger the better

Dear OMA Families,

My name is Jake. I'm 23 and have OMA. There were only fifty known cases when I was born and I was diagnosed by Dr. Cogen, the man who originally identified OMA. I'm a senior in college and am working on a thesis about what it means to grow up with OMA. While I am focusing on my experiences through childhood, I'm very interested in meeting other families who know about OMA. I would love to hear from some of you (who have posted excellent information here). I will check this guestbook and also invite anyone to e-mail me at jakejeppson@yahoo.com. I'm interested in learning your stories and also sharing mine about what it was like to grow up with this disorder. Thanks so much. Jake Jeppson

Hey folks,

Not heard or talked about the OMA picnic in a while.....this is important! I dont think this has ever been done before.....what an opportunity to meet others with OMA!

Write me at meyer7991@adelphia.net and we can get this organized

lets shoot for sometime in July......probably mid july

Lety me know if you can come

I will need at least 10 people to volunteer to come out to make it worthwhile to rent a picnic space and all that

Dan

Found your website researching OMA. Very helpful.

hey, just as a reminder, there is a new message board out there http://omaconnects.proboards26.com/index.cgi

go check it out, might be another good place for us, and it has been dormant for a while

my email has changed...our son is now 6 months old...he holds his head with a slight tilt but is able to hold head up....he has been suffering from chronic constipation for the past 2 months...has only had two normal movements without an enema in 2 month period...HAS ANYONE HAD THIS PROBLEM with their OMA child? We are also looking to find a neurologist that knows ANYTHING about this....we went to Children's Mercy in KC and the neurologist told me he had never heard of this condition>>>HELP!please email me for my cell number

My son Samuel is now 15 months old. We went through a series of horrid diagnoses before the neurologists agreed that he had OMA when he was 4 mos old. He has some delayed motor skills ( he is just starting to walk around the the room using furniture). He has visual therapy with the Perkins School for the Visually Impaired 2 times a month and physical/occupational therapy 2 times a month. He is progressing quite well and all the doctors are quite impressed with his progress and we are just delighted. The trouble is though that we can not find much literature on this condition. We are in the middle of switching neurologists ( ours did not have any experience with OMA at all). So does anybody have any suggestions?

I have a 16-year old son, Dusty, who has OMA. He has always had the head thrusts, but otherwise had done great in school. Upon entering high school, he began to have problems keeping his "A" average. His grades are dropping each year, and I feel a lot of it is because the print of the books are smaller than when in lower grades.

Right now, he is struggling with Chemistry and Geometry. He has managed to overcome most of his struggles, but I am concerned about him finishing high school and the possibility of going to college.

Questions for some of you:

1. What advice/experience on developing skills to drive a car?

2. Any suggestions on how to pass required ISTEPs? (These are graduation tests required by State of Indiana) Dusty has never done well on standardized tests, though he can do well in the classroom. I feel a lot of the problem is having to look from the test to the small bubble pages and back. I also know some of these are in blue print instead of black and white.

Would love any suggestions and input. Feel free to contact me at my e-mail in addition to this site. RGFreeman@go.com.

Becky

Hello again,

I'm wondering if someone could help me with a question about my 21 month old son Gabe, I've posted questions on this site before and have recieved wonderfully helpful responses.
My question is how long hsould I expect to wait before Gabe learns to walk independently?
He currently walks a few steps on his own, and does well holding our hand but hasn't taken the plunge into independence. I realize his balance is off-kilter because of his OMA, but I was hoping for a few suggestions. I'm also interested in knowing how long it took your child with OMA to learn?

thanks in advance,
Leanne & Gabriel.

To: K Dip - OMA is not progressive. There is really no treatment for it however if your daughter has developmental delays that may need treatment with different therapies (physical, speech, etc.). Where in MI are you? We have some family up there. Take care.

Merry Christmas
and Happy New year to all the OMAers out there all over the world
Sandy

Thank God we found this website. Our 4 month old son was diagnosed as having OMA this weekend. That is after we were told he had a brain tumor! Luckily that was ruled out after the MRI results. My mother-in-law noticed the head jerks a couple of weeks ago and told my wife who in turn informed the pediatrician. Now everyone who sees him is able to notice the head jerks. Like many of you, our soon is so darn cute its hard to imagine that there is something wrong with him. We have a daughter that does not have OMA. She is 19 months so hopefully she will look out for him in school. We would welcome any and all comments about OMA. Particularly ways to help improve his chances of leading a normal life. God bless...

Hello All,

I'm actaully very happy i found this site, i had been looking for something like this for over a couple of months.

My names Jill Libby, i'm currently 17 years old as of Nov, 2005. I was born in 1988 and i was soon diagnosed with OMA. Luckly i had a pediatrition that had a friend that was an eye doctor that had seen a similar case out in california some 20 years ago. He diagnosed it and said that although there isn't much information out there, his personal beliefs where that i would compensate for it, and hopfully after awhile not notice that i was dealing with it.

Lucky for me my mom stayed at home. I was sent to some therapy but my mom mostly helped me at home. As i grew up my perents made sure to keep up in my schooling and everything else they could. They personly went in to the school, what seemed like every week, to make sure that i was doing okay, they made sure that i got all the extra help i could, even though my school would try to deny me of everything i tired to get help in.

I am left handed, and i quite possible have the worst hand writing i have ever seen....ever!!

In school i played the saxaphone. and it helped me massivly!! i can surely say that playing band and reading music is one of the best things i could have done for myself, i was so proud oneday when i came home from a band concert and watched the video of it, my dad had zoomed in on my eyes the entire time. I was so happy.

(Sorry this isn't in chronological order)

When i was young, baby young, i had tons of trouble, most of which lines up with what everyone here is saying about there children. You guys will probabaly understand this, and thats what makes me happy that hopefully i can help some of you parents out there raising OMA children.

I had massive problems looking at objects. People would come close to my face to say "oh, what a cute baby" i would shake my head in order to focus on them and track them, and then they would say "oh look shes saying no" everytime my parents tried to explain it, but no one ever fully understood. I would also do circles standing up, to get a loot around so i wouldn't have to move my eyes alot, and i still do it, a lot, i always catch myself even though i don't think i need to do it anymore.

When i was 15 i officially stopped all the help i was getting with the high school, many teachers were very proud of me, even though no one understood what i was. I had one teacher, who helped me through out highschool, so i would suggest to all parents, to find someone in the school system willing to help you, if you get them to help you enough, they'll go out on a limb for you and even do 'homework' for you child to help them.

When i was around 10 years old i looked back at pictures of me and i was embaressed of waht i looked like in pictures, either my eyes were looking at the camera and my face was looking away or my face was looking at the camera and my eyes were looking away...i made my parents through as many pictures out of me as a child as i could.

I must say as i was growing up my mom and dad did a great job of having me fit in, although i wasn't a very social child, and still today i'm not a fan of parties or gatherings, they didn't make me go to therapy as soon as i knew that i was going and other children whern't, they made me make up my own excuses for things like my head shaking and my circles, an dyou know what? it worked, i was able to make up supper funny excuses for stuff becuase i dind't know why i was doing it either, so my friends laughed and ignored it.

Even today, although my close freinds know i was bron with OMA most people in the school if they see me doing something wierd and ask why i just shrug my shoulders, or make up some wierd sotry about aliens, and my brains falling out, and they obviously know i'm joking, so we laugh, and they soon forget what they were asking me about.

I'm looking at colleges now, trying to get scholarships, and i can proudly write application essays based on my self determination to over come OMA, and although i hvan't over come it, im an A student, i do a ton of community service, and sports, and extra ciricular activites,

So parents, don't thin that your child isn't going to succed in life, becuase ive had to deal with this, and i'm very smart, and i feel smart! i may not be as smart as my sister, who dosn't have OMA or anything like that, but shes ridicilously smart...so that dosn't count.

When i went into my senior year i was much more mature than i was, and i'm not only saying that, but i was more aware of things. and i noticed things, like i started to notice that i hadn't compenstaed for it, i just started doing things differnet than other kids. But i also noticed that when i looked at lined objects like sheet music for band or a loose leaf piece of paper or a movie, my eyes would get tired.

i noticed things like taking notes differntly than other kids (so parents, don't do that "sit my student at the front of the class" becuase its actaully easier to look at the board from the back becuase theres less of an angle to change)

I havn't noticed any difficulty driving though, so thats a postive things since i love driving.

so thats my story, if you want advice or anything else i'd be very glad to give it. email me anytime and if you would like a more indepth despcription of a certian aspect of it, also feel free, i would love to help anyone i can

Thank you
~Jill

Hello all, I am writing to you so that you may have my ex-wifes e-mail address. We have a son, Jason, who is now 4.5 yrs old. He was dx with OMA very early, due to the fact Deidre, is a nurse, and noticed his symptoms. She has done a great job with our son, to the point, most people don't even relize his condition. For those of you new here, you can read her msgs from 2001, when our son was born. Please feel free to contact her with your questions, I am sure she can help. Her email address is Deedle67@yahoo.com

Sounds Like something to consider if your child does have other health issues besides OMA and its “side-effects”. My OMA child is progressing and we have opted out on the genetic testing. We might do another EEG but that would be for OMA study related reasons. There have been studies (not sure where-this is word of mouth that just makes sense) of adults living normal lives who, because of the study, volunteered for genetic testing. To some, they were surprised to find that they had genetic abnormalities. Question is, would they have lived normal lives if in childhood they had undergone the genetic testing and been labeled and "placed in a box" of expectations? I wonder how I would feel if I always knew there was something "genetic" wrong with me. Would I have had three children? Truth is we ALL have genetic abnormalities. Some severe, like in “J. Fulton's” case. Remember, not to freak out if you child has OMA and IS progressing. Some doctors LOVE to (and in a way, for malpractice suit protection, have to) write out that prescription card full of tests to be preformed. Be careful if you do choose the genetic testing; perhaps agree with your spouse NEVER to disclose the info you find out to your child or other family or friends. Also, NEVER put limitations on your child's advancement abilities! They CAN and WILL do anything! They CAN impact the world around them for good. Even if they are in a wheelchair, cannot speech, or in the case of the last poster, have this genetic disorder. Just be wise and remember, if there is no disease or life-treating matter, and your child IS progressing (even if it is slowly) have patience and maybe just see what happens (I think a blood and urine panel is necessary in order to rule out major health issues that could go unnoticed-this is not genetic testing though).

I just wanted to post this because I was afraid that it might motivate unnecessary genetic testing because “J. Fulton” did not tell us the exact symptoms besides OMA his child was having that prompted him to seek genetic testing. Please tell us what his symptoms, other than OMA normal OMA “side effects”, are so I can get a better idea?

I think contact through msn is a fantastic idea, also maybe update the om site so that we could possibly leave our family photos so we can also put faces to the names!

Take care you all!

I am going to post this info about the research the the US goverment is conducting (from our tax money-I think)on genetic/inherited eye disorders.

Hello Everyone! I have exciting news!

Okay, I purchased the full report of the Cogan's Ocular Motor Apraxia from the National Organization of Rare Disorders www.nord.org They referred me to www.clinicaltrials.gov and here is the link to the research program that is currently going on:

http://www.clinicaltrials.gov/ct/show/NCT00076271?order=3
I am SO excited about this and I hope and pray it will turn into something great (Like new publications and medical knowledge about OMA-currently it is not fully understood about OMA and the causes or possible genetic/inherited relationship)!
I called them and gave them my info for my son. Please call them, tell them about the OMA. WE NEED TO ENCOURAGE RESEARCH!!!! In some cases they will need you to go to MARYLAND USA (if you live in the USA) and will compensate your trip and time (if that worries you like it does me). This is what are taxes pay for! They NEED to hear from us! Please check this link, e-mail or post with any questions. It is a reliable source and a sure way to promote research on OMA. I told them that I knew of people who are excited about OMA research and they told me to relay this info out so that you all can call. Please help us learn more about OMA and other genetic disorders. They will answer any questions you might have. This could very well be what we are looking for in terms of promoting research. After you contact them and are awaiting a response from the research team, e-mail me or post so I have an idea to how many have called.
Thank You!

Cory (mememom)
http://omaconnects.proboards26.com/index.cgi

I have two children (8&1) dealing with OMA/Joubert Syndrome. I am always searching for contact with others dealing with this too! I am having a very difficult time with our oldest and his behaviors. He is very aware that he is dealing with OMA - after all, we've been to a gazillion dr's./therapists etc. We have recently started homeschooling. He has a very difficult time maintaining relationships. He has a head thrust that appears to look like a tick and his previous PT insisted that he has Tourettes. I would love to hear from any one dealing with behavioral/emotional challenges. I wonder how much of our difficulties with him is due to the OMA/Joubert Syndrome.

Hello Dan

Another idea for your get together is if you have MSN Messenger, you can set up a live chat, if you have got a webcam and a microphone. You could talk to me on my hotmail. jay_schurr@hotmail.com, you can see me too, on camera. Have you checked my website out yet, which is www.jason.mustbehere.com
Take care,
jason

hi Dan
I meant if a time and date and a location was made anywhere by anyone it would be a fantastic idea, and an event everyone should make an effort to make. Because it is a great suggestion to get together.
take care Im sure if anyone said Australia Im sure we would make it.
Sandy

Hey, there is not a thing written in stone regarding the date-or even location regarding the OMA get together, but i know it needs to be done. Please email me with any comments or suggestions

I mentioned memorial day weekend of 06 just because it seems like a time that is easily remembered and far enough away....but i am open to any and all suggestions from all of you.

thanks

dan

Dan
I think that the picnic meeting is a fantastic idea, only wish we lived near as we would definately make it. As a parent I am very proud of the way the OMAer grows up and manages in the world. I know the way is difficult, but to rememember you are no different, but have obstacles to overcome throughout your life, self respect and love of yourself and happiness in yourself will see others not seeing the handicaps but that beautiful inner self that we all are.
I urge everyone of you that can make the trip that is arranged,to be there and support each other.
there are far worse things than having OMA
take care
sandy and jason

Hello!!!
I got a message board set up. Here is the address:
http://omaconnects.proboards26.com/index.cgi

Please use it as a resource and to help others dealing with or with someone who has OMA. Cory

Hey! I am a mother of an OMA child age 4. His name is Ben and I go by the user name mememom. The outing sounds great and my husband and I will try to be there and are willing to help out too. The doctors got Ben DX of OMA correct but ALL the other things that go along with it they never told me was a result of OMA. In fact the eye doctor even said it was not related (yeah right) I found out different by reading messages and info on this website (THANK YOU THANK YOU THANKYOU for all who shares! It has helped more then you know). We have to get a better messaging system and resource system going here. We know way more about OMA then most doctors. I think this website is great and would like to improve it (In fact I would still be taking Ben to a whole line of genectists, development Dr.s, and everything else to find out why Ben is the way he is, I thank God for this website). Anyways keep me posted. Cory

Hey folks. It's me again. One thing I really want to do for the OMA community out there is to get us all together. Since OMA is SO rare, it's easy for us to feel alone in the world.

I live in the Cincinnati Ohio area (fairly central US) and would love to maybe get some kind of a picnic going--I'm thinking around Memorial Day weekend of '06. There are plenty of picnic grounds up here-maybe we could put some $$ together for catering or something like that. Of couse this will be a group thing-and as far as planning and whatnot-we will have time to figure that all out. But, as a person who in my 36 yrs of life has never met one other fellow OMAer in person--I think that this will be a wonderful opportunity for all of us.

Please email me with your thoughts. I think next may is plenty of time to get all of this organized and planned for everyone--of course everything is subject to change since I'm just thinking of it now--but I hope you'll all agree that this is something important-we can help ans support one another and see one another.

Again-email me with your thoughts at meyer7991@adelphia.net

Can i just also tell you all about a helpful website which i am considering for my children and have just sent for the free dvd, visit this page: www.ddat.co.uk i think you will all be very interested!

Hello there, it's been a while since I read all the heart warming stories on this site, they still do the job though, make me cry buckets!!! I couldn't previously add a comment as it was shut down due to spam. Anyway I have 4 children, 3 of whom have coma, I have spoken to 2 people of this site previously and let me tell you what a relief that was to just know that i'm not on my own my children are aged 15,10,7 and 19months. I would love to hear from anybody who would like to email me with any questions. Take care all of you, Nicola

Okay, I am SO annoyed with the "healthcare profession". Instead of giving me a textbook on how to teach my son speech therapy, OT or PT. Heck even about emotional issues associated with speech delays (yeah called the terrible two's lasting 3 years). They do not educate me, tell me to research the topic, or even explain hoe his brain works. No, they give me a perscription to a therapy place so that I can take my son there and remain ignorant and dependant on them, the healthcare profession! I find myself asking Ben's teachers over and over again "What can I do to help, I want to know his plan, tell me more about his condition, when will he do this or that?" For one minute I wish that they would all just hold back so that I would be forced to educate myself to be the teacher. WE CAN DO IT. If we would spend less time driving our children here and there to therapist to therapist, school and back, doctor to doctor. "They" will send you anywhere instead of the LIBRARY! I know I am being radical but I am just now relizing, "Hey,I can teach Ben, WITHOUT temper-tantrums, WITHOUT giving away our income to the "healthcare people". You might have already come up with this insight, and I am not talking down on any of us parents or teachers here seriously seeking out to help an OMA child. There was NO ONE, out of all the medical people (and we been to a lot) that told me to do reasearch, or to take a class at the college on pedeactric therepies. No, they need us, they need jobs. Or they have become so conditioned relying on "the system" that the though "Hey I can learn this AND teach my child just as well or even better." Lets face it "Who likes to go to work everyday, doing the same thing over and over" Not many. I can educate myself because I am a bright person (except in spelling but at least I am understood)I have no college degree, job related experience. I do have motivation and love. In fact the last time I check, I have loved Ben the most since birth (except for dad and big brother).

My message is this: You CAN do it. Study, talk to people, learn, take a class if you can't research from a textbook. Go to www.amazon.com and search for the different therapy books. We have been givin the wonderful resource of the internet. We no longer need to go to the university to find and but the medical textbooks. We can even get the college classes and textbook lists for the people now attending school to become doctors, OTs, PTs, and speech T's. We can learn on our own for cheeper!

Please send me an e-mail if you know any information how we can either encourage this website or start a new one. Thank you!

LAST POSTER MAIA: I will either e-mail or post a description elaborating on oral muscle development.

HAPPY DAY! :)

Hello all,
We have a little boy Jacob (3 years) with OMA. I would love to know more about helping him to speak. He receives speech therapy but is very limited in the sounds he can make - he seems to struggle to make different sounds. Sign language has really helped him, however I can see he gets frustrated. I am amazed at how much he understands however and am encouraged at every little milestone he reaches. He didn't walk until he was nearly 3. I would like to know more of what Daniel was saying re muscle stimulation of the mouth? but would also be grateful for feedback from anyone with advice. Thanks again. I really love this website also, it has been such a comfort and encouragemen to our family.

I am laughing at your comment about doctors that have a clue (have not found one yet but the American Concil of the Blind and Visually impaired helped out a lot). I praise my sons eye doctor for getting OMA right but he failed to know that development delays are common with kids who have OMA. My son will be turning 4 next month and if it was not for this website I would probally still be searching from doctor to doctor to find out what is wrong with him. Anyone who has a young child with OMA, it is essential that you MAKE (through fun and interesing ways to them) bite and play with teethers. This will develop and stimulate oral muscles. Ben NEVER put anything in his mouth and all his speech therapists were too overworkied, I guess, to tell me to do this with Ben. Since I have been doing it though I have seen a lot of improvement in his speech/awarness of his mouth. Every kids is different. When you have a eye condition that makes tracking, focusing, and watching difficult, some kids become intraverts. They almost "forget" about that part of the body. Self-education is your best bet. Read books on speech, preforming physical therapy and ocupational at home. Ask the therapist you are working with to give you "homework assignments" to do daily with your child. Massage with lavender oil and another of your choice mixed together makes a great relaxing tool for the fustrated OMA child. You can use mini-massagers on the face to stimulate muscles or on the feet to prevent our causious OMA-ers from becoming "flat-footer". I have decided to homeschool Ben instead of putting him in public school. Ben moves at the beat of a different drum, he still can't talk, and sign language can only be understood by those who really know him. My goal is to insure that Ben is #1 Happy and peaceful #2 around people who view him as an awesome NORMAL kid (remember we are all different-lets not outcast our children) #3 Is progressivly growing in all areas. I will not place him in a box or label him. He will not grow up fustrated and disliking learning. Learning MUST be fun! Not sure if all OMA kids are kids this but "hurry up" is just not in his vocabuary. Everything now has to be looked at, investigted, and admired, before we move on. If anyone has any good ideas for developing my OMA child please e-mail or post. I love the advice on swimming, we will be starting open swim next week at the school down the road. Again, I do not know what I would have done with out this website. THANK YOU! Take Care and Happy Day to You! P.S. I am not doing a spell check and yes, I know I am pretty bad at spelling. Who has the time?

i have 1 13 yr old daughter w/ COMA, diagnosed @ 4 mos. She has developmental delays, gross & fine moter delays, academic delays. looking for drs that have a clue.

My son Jamie is 9 years old and exhibited symtoms of OMA from birth. He was slow to reach all the "normal" milestones for infants/toddlers, but was eventually able to perform all the expected tasks. Although the physical side of OMA is very hard to deal with, the emotional and behavioral problems we've experienced have been even worse. Jamie's now in 3rd grade and receives extra help during parts of his day at school. I'm curious to know if other children with OMA also have severe behavioral issues and if any parents have found good ways to deal with these issues. Jamie's nightly outbursts and problems have been dominating my time with him and leaves me little time for anything else. I'm SO frustrated that I cant help him and I really need some help. Thanks!

I have a son who was dx with OMA when he was 6 mos old. He is now 18 mos old, a very happy boy except hates his daycare. He has just started to learn to walk without holding on. At times, I am just so worry about him. I don't really know what his future is going to be like with OMA. I really like this site. I would like hear or read
more about how people with OMA doing !!
thank you.....

Well, first of all...Bill Levinson and his ilk need to be kept out ---that stuff doesnt offend me...but it will, to some

Secondly--I would like to, again, let you folks know that I am a 35 yr old man living with OMA.

Sometimes it seems to have more of an effect on life than others-when I lived in Chicago it didnt seem to have much of a bearing on things, but in the small town world where minds are not as open, it does. Job interivews i would say cause my biggest anxiety--do I mention OMA? How to fit it into a conversation without being awkward?

Top advice to parents with OMA children: let them understand their OMA, and feel comfortable with themselves

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My name is Claudio and I've a daughter of 1 year with OMA, I'm very worry for her future and the OMA's evolution.

I'd like to receive from you information about the life of a OMA's child and everything you think can help me.

At the moment in Italy I don't know another family which share my experience !!!.

Every information for me will be very precious.
Thank you
Claudio

NICE SITE I LOVE IT

My son, Stathi is now 6years old. He was diagnosed with OMA at about 6 months old. I am a mother of four kids. Stathi is my youngest. I am also a nurse. I have a neurologist at Children's Hospital in Boston who I am very comfortable with (that is a difficult task to do with me). His name is Dr. Darras. He did an MRI with Stathi at 6 months of age. It showed that the septum that separates the two hemispheres of the brain was slightly thinner than what it should be. This should not have caused the OMA. He does not have all the answers, but he is efficient. We recently did another MRI this past year, and it did not show any changes. But he did say one thing that impressed me. It was that he'd rather see a slightly abnormal MRI on a child that is making a lot of progress, than see a normal MRI in a child that has a lot of issues. Good Luck!

Hello all,

I've just updated the summary/ analysis of the OMA registrations
database.

The latest figures, as of 3rd September 2005, can be found at
http://wwweb.org/oma/reg/regsumm.html

Currently there are 446 registered cases analysed by:
- current location
- age range
- sex
- source of registration information

This is up from last year’s published figure of 212 cases
on 12 Sep 2004.

Once again, thank you for all those that have submitted
their details, and if anybody else hasn't yet,
then please consider doing so.

Best wishes

Rob
OMA web site

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