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My son needs a diagnosis
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My son needs a diagnosis

We have spent the past year traveling from DR to DR. We have some ideas about what is going on with my son but no, for sure, "real" diagnosis. We have began to feel there is no use even trying. Each DR sends him to another Dr and so on. I would be so grateful if any one has any ideas for us. Let me begin by saying I completely believe what ever my son has is coming through my genes. He reminds me so much of my dad and uncles. My dad and one of my uncles were treated for Parkinson's Disease. None of the Drs who have examined my son feel he is experiencing PD symptoms. Most discount it immediately because he is so young. (12 yrs old) My son has very slow movements most days. Some days he looks as if he can barely pick up his feet. He appears stiff through his hips. He tires easily. He has learned to balance on one foot recently. However he is exhausted by exercise. He is a very large 12 yr old. He has very flat feet and experiences pain frequently in his back and legs. He suffers from a learning disability and has a lot of concentration/memory problems. He has been labeled during the last year as Dyspraxic and as falling somewhere on the Autistic Spectrum, although he has a global functioning IQ of 115.  He has terrible problems with handwriting and uses a keyboard for lengthy assignments. He has always experienced skin problems- rashes, sensitivity, ezema. In our extended family members we have Scoliosis, parkinson's disease, fibromyalgia, arthritis, spinal bifida, disc disease, chron's disease, autism, TIA's, heart conditions, psorisis, so you see we bring a lot to the table. My daughter has begun having some joint dislocations, which I don't know if that is related to anything going on with my son or not. There are days when my son hurts so bad he cries and needs help getting out of bed. We need an answer so we can deal with whatever this is. Any ideas or places I could search for help would be appreciated.
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I didn't mention my son has always had issues from birth through today. He was premature but released from hospital at 24 hrs old. He wouldn't latch on well and became very jaundiced so he had to be rehospitalized because his bilirubin level was extremely high. Eventually his bilirubin began lowering but I think it was his sodium level stayed high which concerned his drs but eventually that too came down. At 6 mths we had to take him to a specialist for his misshapen skull. I tried the methods of moving him to face different directions and manually placing his head in the opposite direction but he would immediately turn his head back to its favored position. So the dr gave him a helmet to wear for 9 mths which shaped his head nicely. Upon removing his helmet he began falling ALOT, he seemed disoriented. His pediatrician said he had grown accustomed to the weight of the helmet and would become more steady after he got used to not having the helmet. Still to this day he falls and trips a lot. Logan was on the upper end of age before he walked, rode a bike, tied his shoes, or was potty trained. He used to scare me so much when he was between 2 - 6 yrs old because he would throw awful fits and when he did he would throw himself backwards with no concern of his own safety. He would be like a noodle during these episodes. By the age of 7 he was complaining of pain in his back, feet, etc. He never could run very well and his walking always looked strange. He has endured a lot of teasing at school in gym class. He said he wants to do the activities just like the other kids but his body won't do what he tells it to do. He also has periods where he is extremely sensitive to touch, sound, & light. He gets very frustrated with himself when he can't remember things and says he thinks his brain is bad. Going to all these specialists over the past year has been torture for him. He is so very modest and totally hates undressing in front of these drs and he says they always ask him the same questions and he said some things he just can't remember and he feels stupid when he can't remember. Of course we have to tell the drs all the negative things going on with our son and I know this hurts his self esteem, which is really low anyway. He has begun just to slump down and not say much when we are at the dr visits. I need to find a dr who can help my son and not just pass the buck. One who really cares and understands what he is experiencing, PLEASE help us if you have any ideas. My son has had lab work drawn a couple times I am not sure what they were looking for but they said it was all normal. He has saw 2 geneticts who counted his chromosomes and said he has all he is suppose to and he doesn't have Fragile X. He has seen 2 neurologists who just did physical examines and looked at his blood work. One of which diagnosed him with Dyspraxia. He saw an orthopedic who gave him custom insoles to help with his flat feet. He recently saw a rhuemotologist who did a physical examine and looked at his privious blood work and said he didn't see anything in it that would lead him to think it was a muscle disease. He has seen a psychiatric dr who has placed him on Abilify 2mg. and he is in biweekly counseling sessions. He also has received physical therapy during the past year. What more can we do and who will help us is my question??? Thankyou so much for listening. Sorry I have rambled so much. It's been a long 12 yrs.
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620923_tn?1416285879
...I am soooo sorry that a child must endure this brush off mentality of the medical proffession.....Has ur son had MRI's of the brain, cervical spine and complete spine.....
I am a non medical person who has experienced the samae frustration u have mentioned.....since u said that there is spina bifida in ur family I would suggest looking into the possibility of chiari malformation or a related condition....we also have a forum here on med help.

I also can relate to ur son's mis-shapen head...I also had that issue.....chiari is a congenital condition where there isn't enuff room in the skull for the brain and it sags into and onto the spinal column.....

I can not say this is what ur son has, but I would at least check it out...anad in doing so u need a dr that specializes in chiari...it can be missed by most drs...and since it is congenital they believe it can not cause many of the symptoms that it does.....

if u need help locating a NS that specializes in chiari for where u live, post a thread on the chiari forum.


Good luck
Godspeed
"selma"
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Selma, Thankyou so much, I had never heard of that before but will check into it. I really appreciate your words of encouragement. It gets pretty frustrating and overwhelming at times. Thanks again.
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Selma, I was so excited to get a response from someone I forgot to answer your questions.
The only dr that did xrays was the orthopedic dr and he only did xrays of the lower spine, hips, and legs. None of the other 6 specialists has did any tests other than lab work. Each one asks if the other ones have did any MRIs or CTs but when I say "no" they just kind of go on with a general physical exam.
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620923_tn?1416285879
I believe it is ur turn to tell the drs what u and ur son need from the drs....it is unfortunate, but I have had to do the same...always ask for copies of all labs and tests...u can get cds of MRI's ect.....it is sooooooooo much easier to get the 2nd and 3rd opinons since u have all the info.
Deff ask for the MRI's...I pray u find the right dr to help ur son.

Good luck
Godspeed
"selma"
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Avatar_f_tn
Dear J Mom,
If you have your boy scanned, I would suggest a CAT scan, unless he is heavily sedated for an MRI...those machines are loud.

The diagnosis of Dyspraxia is actually the answer to your child's symptoms.  It covers everything you have listed.  This website is good for describing all those symptoms:
www.solveyourproblem.com/learning-disabilities/dyspraxia-diagnosis-treatment.shtml

A supportive website for people who have a Dyspraxia child is:
www.ldresources.org/2004/11/29/dyspraxia/

Please check out both of those, as they will confirm "what is wrong" with your son.  You do not need to keep going to doctors to find out what's going on... you have a Dyspraxia child.

I would suggest, however, that you do have an opthalmologist check his eyes... once in a while some of the symptoms your boy has relates to vision being a little off.  Also, his skin patches are likely psoriasis, since it's in the family, I had a close friend who had it and she saw a dermatologist who gave her a cream and whatnot to treat it, no big deal.

Hope this helps you put this to rest.  I would hate for you to keep looking for the answer when it is already there.  That Dyspraxia is multisymptomatic, he HAS been diagnosed with it, and you need look no further, with the exception of the CAT scan, which may show some sort of causal relation in his brain.  If not, go with Dyspraxia and be done with it, and find ways to take care of your son, perhaps through the supportive website I offered you, and other research you do, to find some treatment for him, guide you in how to deal with his schooling, and ways you can help him personally.  He's gonna be okay, he's just got this glitch that keeps him from performing at a top-notch level, that's all.  And I'm not just pushing aside your grief and persistence in wanting to help your boy; rather I am giving you a place to rest this thing and thus move forward in a positive way.
GG
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Avatar_f_tn
I looked at the website that ggreg listed, and found it interesting.
I noticed a common thread between some of your son's symptoms and magnesium deficiency.
You may be able to help him with a nutritional program.

Common Conditions That May Result from Low Magnesium Levels
http://www.ctds.info/5_13_magnesium.html

How to Have a Magnesium Rich Diet
http://www.ctds.info/magdiet.html

Magnesium & Eczema
http://www.eczema.com.au/articles/105-magnesium-eczema/

Eating to Cure Your Eczema
http://www.naturalfamilyonline.com/2-h&w/47-excema-treatment.htm

I realize that supplementing his vitamins and minerals will not cure him, but it should relieve a few of the bothersome symptoms.

Wishing you the best,
Carol
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Avatar_n_tn
Thankyou all so much for your responses.Thankyou Carol & greg I will check out those websites.
I wanted to elaborate a bit on the diagnosis we have. The two neurologists he saw did not agree on the diagnosis. But I did research Dyspraxia and totally agree most of it sounds like my son. However I did not find pain as a symptom of Dyspraxia. That is the sole reason I still am searching because it breaks my heart to see him crying in pain.

Also his psychiatrist doesn't agree with the dyspraxia diagnosis. She said that is just a "catch all" term neurologist use. Then she prescribed him Respirdal and diagnosed him as hitting on the autistic spectrum. When he had a follow up at neurologist he said he 100% disagreed with her placing my son on respirdal and he felt it was too strong a medication for him to be on.

So here we are unsure about everything. Even the drs are unsure. My son didn't tolerate the respirdal and has since tried Invega (also couldn't tolerate) so now he is on the Abilify and seems to be doing well with it.  But after all this he still has the pain, which seems to have flare ups where it is more intense than other times.
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Avatar_f_tn
Dear J Mom,
A child who has Dyspraxia can have pain from hypersensitive skin.  I have sent you a personal message, you go to "My Med Help" with the heart logo at the top of this page, and I've passed on some tips to perhaps help you.
GG
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