Discussions By Condition: I cannot get a diagnosis.

7 Year old Undiagnosed with multiple symptoms

Posted In: I cannot get a diagnosis. 12 Replies
  • Posted By: CapricornMom
  • January 12, 2009
  • 05:16 AM

I have a 7 year old boy with severe mental retardation, seizures, no impulse control, drooling, gait ataxia, no speech but can make lots of sound, no communication beyond walking me to what he wants, a fixation on items, and is at the developmental age of 9 months to 2 years depending on the skill. He has high and low muscle tone, can walk but does so on the balls of his feet - we refer to this as the drunken sailor walk as he can not hold still in one place without holding onto something. He is constantly into everything, and chews/bites on everything wearing down his teeth no nubs. Hearing and vision seem to be fine, but eye contact and getting his attention are a problem.

We've seen every doctor possible and still nothing...... Geneticists, Neurologists, PM&R, Behavioral Specialists, Pediatricians, Audiologists, Optamologists, etc... what I need is a "Dr. House"....

Any input would be greatly appreciated.

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12 Replies:

  • Hi there. A suggestion about Genetic Counseling. If they don't know what they are looking for they won't know what to test for. You need to research some 'rare' genetic disorders. My son has Smith Magenis Syndrome (SMS). Check it out. www.prisms.org ... check out this list of rare disorders. http://www.specialchild.com/disorder.html
    colbysms 5 Replies
    • January 26, 2009
    • 10:24 PM
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  • OMG! Thank you for your reply..... I've been trying and trying and trying to figure out what's wrong for years and years.... This may not be the answer, I understand that... but it sure sounds like my son. I actually refer to him as my 1 in a Million baby. No one has ever encountered anyone quite like him, and frankly we're all at a loss as to how to help him.... I'm calling the geneticist tomorrow to have them review this website.Could I contact you outside of this forum to speak with you about your child? I have Yahoo Messenger & Gmail for chatting.... or emails....
    CapricornMom 4 Replies
    • January 27, 2009
    • 01:12 AM
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  • I'm in contact with another parent with SMS, and we're comparing notes. I'd like to do the same with any other parent that has a child with SMS... They sure sound like the same kids...
    CapricornMom 4 Replies
    • January 27, 2009
    • 03:33 AM
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  • Blaze.. you really need to tell your doctor that you need more treatment for the Obsessive compulsive disorder. You are really out of line here and cant see it due to your disorder. (im not trying to be mean to you, but you are actiing out in illness right now)......... appoligies to the original poster
    taniaaust1 2267 Replies
    • January 27, 2009
    • 04:39 AM
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  • Regardless of how this "happened", I need to know what it is.... I can't change the past, but I can sure look tword the future of trying to make a better life for my son.I have one child that is fine and one child with a good possibility of SMS. I'd really only prefer to hear things that are helpful, and not what could have "caused" the problem to begin with... sorry if that sounds rude, but I can't change the "Happened" part....
    CapricornMom 4 Replies
    • January 27, 2009
    • 09:56 PM
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  • Regardless of how this "happened", I need to know what it is.... I can't change the past, but I can sure look tword the future of trying to make a better life for my son. I have one child that is fine and one child with a good possibility of SMS. I'd really only prefer to hear things that are helpful, and not what could have "caused" the problem to begin with... sorry if that sounds rude, but I can't change the "Happened" part.... Hi. My reply hasn't gone through. check out www.prisms.org and you will find me on the sms discussion group.
    colbysms 5 Replies
    • January 27, 2009
    • 09:59 PM
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  • Blaze:How many of us is it going to take before you get it?You're like ''Chicken Little''except rather than yelling that the sky is falling,you are screaming that electromagnetic sensitivity is killing us all!And guess what...It's not.Please ease up.Your intentions might be good,but your intensity is overwhelming.
    richard wayne2b 1232 Replies
    • January 27, 2009
    • 10:37 PM
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  • I have a 7 year old boy with severe mental retardation, seizures, no impulse control, drooling, gait ataxia, no speech but can make lots of sound, no communication beyond walking me to what he wants, a fixation on items, and is at the developmental age of 9 months to 2 years depending on the skill. He has high and low muscle tone, can walk but does so on the balls of his feet - we refer to this as the drunken sailor walk as he can not hold still in one place without holding onto something. He is constantly into everything, and chews/bites on everything wearing down his teeth no nubs. Hearing and vision seem to be fine, but eye contact and getting his attention are a problem. We've seen every doctor possible and still nothing...... Geneticists, Neurologists, PM&R, Behavioral Specialists, Pediatricians, Audiologists, Optamologists, etc... what I need is a "Dr. House".... Any input would be greatly appreciated. Have you tried thinking outside the box and looked at any alternative or CAM treatments for your son? What was his early life like? Did you breastfeed or was he bottle fed? Has he had seizures his whole life or more recently? When exactly did the seizures develop? Have his symptoms been getting progressively worse or have they stayed moderately unchanged in the past year or two? How is his appetite and what is his diet like? How is his size/weight compared to other kids his age? What medications is he taking and for how long has he been taking them? Best wishesDOM
    acuann 3080 Replies
    • January 28, 2009
    • 04:51 AM
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  • Acuann:what is a CAM treatment?
    richard wayne2b 1232 Replies
    • January 28, 2009
    • 01:30 PM
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  • Acuann:what is a CAM treatment? http://nccam.nih.gov/health/whatiscam/ DOM
    acuann 3080 Replies
    • January 29, 2009
    • 02:10 AM
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  • I have a 7 year old boy with severe mental retardation, seizures, no impulse control, drooling, gait ataxia, no speech but can make lots of sound, no communication beyond walking me to what he wants, a fixation on items, and is at the developmental age of 9 months to 2 years depending on the skill. He has high and low muscle tone, can walk but does so on the balls of his feet - we refer to this as the drunken sailor walk as he can not hold still in one place without holding onto something. He is constantly into everything, and chews/bites on everything wearing down his teeth no nubs. Hearing and vision seem to be fine, but eye contact and getting his attention are a problem. We've seen every doctor possible and still nothing...... Geneticists, Neurologists, PM&R, Behavioral Specialists, Pediatricians, Audiologists, Optamologists, etc... what I need is a "Dr. House".... Any input would be greatly appreciated. I just came across your post again and are wondering if you ever found out what was wrong? On reading your post again. I thought it strongly sounds as if he has autism. I dont know how i missed that before. The following are symptoms of autism"no speech but can make lots of sound""no communication beyond walking me to what he wants""is at the developmental age of 9 months to 2 years depending on the skill" Uneven skill levels"a fixation on items" Autistic special interests?"chews/bites on everything" My asperger's daughter was shocking with putting everything in her mouth. I used to be pulling rocks, erasers and other things out of her mouth when she came home from school. She seemed to always want to have something in her mouth."Hearing and vision seem to be fine, but eye contact and getting his attention are a problem" "no impulse control"Those who have autism may also have odd gaits and can be more prone to things like seizures. I strongly suggest to take him to an autism expert, seems you've taken him to everywhere else except those who specialise in Autism. (My daughters Asperger's got missed even thou she had to have one to one help right throu her whole school years.. they couldnt work out what was wrong. It was only after I myself was diagnosed that we realised that is what her issue is... she's far worst then I).
    taniaaust1 2267 Replies Flag this Response
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  • Caricornmom......I came across this thread in my email.  Did you ever get a diagnosis???  I have often thought of you and your son.  I would love to see what is going on with ya'll.
    colbysms 5 Replies
    • January 3, 2012
    • 02:28 AM
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