Mothering Forum banner

1 - 15 of 15 Posts

·
Registered
Joined
·
714 Posts
Discussion Starter · #1 ·
Ds has always had poor balance and coordination, when we went through testing to find out why nothing was found. We ruled out any damage in his brain, tumors, stroke, metabolic issues, celiacs, vit. definciency, and heavy metals. His immune system is ok. We were told we just had to see how things went. Well his balance is getting worse and now he is slurring when he talks and mispronouncing things. He's always had a language delay but he never really had a problem with actually forming words like he is having now. We are going in for another MRI.<br>
I'm getting the run around from the Dr's, nobody is telling me what this means, is he gonna keep getting worse? What is causing this? I'm so tired of not getting any #@$%^ answers <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/bawling.gif" style="border:0px solid;" title="bawl">
 

·
Registered
Joined
·
5,813 Posts
<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><br><br>
I really hope you have answers soon. This must be so hard for you and him.
 

·
Premium Member
Joined
·
9,138 Posts
<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> How absolutely horrible.<br>
I'm sorry. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"><br>
I hope you get answers as to why very soon. What metabolic tests did they run--what was ruled out specifically if you know? Any genetics ruling out...?<br><br>
Did they look at vitamin E? <a href="http://cat.inist.fr/?aModele=afficheN&cpsidt=3797387" target="_blank">http://cat.inist.fr/?aModele=afficheN&cpsidt=3797387</a><br><br>
I hope his MRI hasn't changed. It seems like it would be encouraging that his initial one was ok assuming he was having symptoms then too though less. I'm really sorry you're facing this. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

·
Registered
Joined
·
714 Posts
Discussion Starter · #4 ·
<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>sbgrace</strong> <a href="/community/forum/post/12367257"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;"><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> How absolutely horrible.<br>
I'm sorry. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"><br>
I hope you get answers as to why very soon. What metabolic tests did they run--what was ruled out specifically if you know? Any genetics?<br><br>
Did they look at vitamin E? <a href="http://cat.inist.fr/?aModele=afficheN&cpsidt=3797387" target="_blank">http://cat.inist.fr/?aModele=afficheN&cpsidt=3797387</a><br><br>
I hope his MRI hasn't changed. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"></div>
</td>
</tr></table></div>
I don't know exactly what metabolic tests were done, I never got the actual lab results (I have requested them several times) I have been told they were fairly extensive. He did have a genetic analysis for Fragile X that was negative. His first MRI was completely normal nearly two years ago.
 

·
Premium Member
Joined
·
9,138 Posts
Normal MRI at that point even seems reassuring or would be to me.<br><br>
My questions on metabolics is because who you see matters so much--especially in the lesser known (but more common incidentally) things like mitochondrial disorder. It's one that can cause ataxia though you would see other things too. I just wonder if you had a really good metabolic work up. They can't rule stuff out easily at all so if they ran some tests and told you they did it would make me wonder about how good the work up was.<br><br>
Something I've learned with Andrew is to get a copy of all his labs myself. I have a binder now. I'd request copies of every test he's had run up to this point. Sometimes you'll even have an abnormality that someone ignored.<br><br>
When is the next MRI? I'll be thinking of you and hope it's soon so you're not left wondering about all the possibilities there. <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/hug2.gif" style="border:0px solid;" title="Hug2">
 

·
Registered
Joined
·
714 Posts
Discussion Starter · #6 ·
<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>starlein26</strong> <a href="/community/forum/post/12366806"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;"><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><br><br>
I really hope you have answers soon. This must be so hard for you and him.</div>
</td>
</tr></table></div>
Thank you, it is really hard to deal with not having answers but whats really getting me right now is several of these Dr's are acting like I should have expected this to get worse and I want to pull my hair out. The original tests and evals were done in WA and we are in OK now so it's a whole new set of doctors who can't stop saying things like "well why didn't THEY give him a dx" and stuff like that.
 

·
Registered
Joined
·
2,874 Posts
hugs, mama. your post speaks to me because my daughter has an ataxic genetic disorder (see my sig). i hope you find an answer soon.<br><br>
eta- how old is your son?
 

·
Registered
Joined
·
714 Posts
Discussion Starter · #8 ·
<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>homemademomma</strong> <a href="/community/forum/post/12367693"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">hugs, mama. your post speaks to me because my daughter has an ataxic genetic disorder (see my sig). i hope you find an answer soon.<br><br>
eta- how old is your son?</div>
</td>
</tr></table></div>
He is 3, will be 4 in Feb.
 

·
Registered
Joined
·
6,362 Posts
<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> How frustrating and scary to not have any answers. I hope you get some concrete info soon.
 

·
Premium Member
Joined
·
6,263 Posts
Some doctors have all the people skills of a doorknob.<br><br>
I would be mad if they didn't send me copies of the lab after being asked several times. Maybe you can keep bugging them every day until they send those to you. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

·
Registered
Joined
·
2,874 Posts
faerierose, i tried to PM you but your box is full. give me an update when you can!<br><br>
jen
 

·
Registered
Joined
·
1,889 Posts
I haven't been on this forum for a little while, or I would have posted earlier. I, too, am a mama with a child with ataxia. I'm sorry. I hope you do get some answers soon. When is the next MRI scheduled for?
 

·
Registered
Joined
·
714 Posts
Discussion Starter · #13 ·
<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>OMama</strong> <a href="/community/forum/post/12391410"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">I haven't been on this forum for a little while, or I would have posted earlier. I, too, am a mama with a child with ataxia. I'm sorry. I hope you do get some answers soon. When is the next MRI scheduled for?</div>
</td>
</tr></table></div>
I still haven't gotten the date for the MRI, the Neurologist hasn't received ds's new referral, and the Ped just went on vacation<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/irked.gif" style="border:0px solid;" title="irked">:
 

·
Registered
Joined
·
1,889 Posts
<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>faerierose</strong> <a href="/community/forum/post/12391701"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">I still haven't gotten the date for the MRI, the Neurologist hasn't received ds's new referral, and the Ped just went on vacation<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/irked.gif" style="border:0px solid;" title="irked">:</div>
</td>
</tr></table></div>
Sorry it is taking a while. Could you ask the pediatrician's office to look in DS's chart to see if indeed the referral was sent before the pediatrician when on vacation? That way you might be able to track it down. If it wasn't sent, could you ask another pediatrician in the practice to send it? I would stress to them that it is <b>urgent</b> and <b>very important</b>. I just remember when my son had his first MRI; when I called to schedule the appt. they said it would be three weeks out. I basically said that was unacceptable. I talked again to our pediatrician and we got the appt. for 7:30 am the next morning. All that to say, that you need and deserve answers, and soon. IMO it is unacceptable when we (i.e parents) are made to wait for long periods of time when it comes to these things. Anyway, just my two cents. Good luck and keep us posted.
 

·
Registered
Joined
·
714 Posts
Discussion Starter · #15 ·
We saw a different Dr yesterday and she got him an appointment with the neurologist on the 27th of this month! We have to do another MRI and another EEG.
 
1 - 15 of 15 Posts
Top