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ds saw his new neurologist for the first time today, and I am feeling so good about the appointment. The neurologist seemed nice and was very responsive and recommended some of the exact tests that people on here were saying he should receive.<br><br>
We're starting with the MRI, and then we are going to do both genetic and metabolic testing, unless the MRI alone tells us what is going on.<br><br>
It would have been really nice to have his MRI appointment before even leaving the hospital today, but the scheduling department runs it through insurance first and then will call us to schedule the appointment...that will take another week or so. Then there is going to be something of a wait before the MRI, and another couple of months-- unless anything urgent came up on the MRI (we will get the results, thankfully, within a week or so after the MRI)-- before we will have our follow-up appointment with the neurologist.<br><br>
The neurologist doesn't want to do the genetic or metabolic testing first, because he may tailor the testing different ways depending on whether anything turns up on the MRI. His point, a valid one, is to avoid sticking ds with needles for blood testing any more than we already have to. But I have to say all the waiting is making me very anxious, and wouldn't it be better if it was something like Fragile X that could easily be diagnosed with the genetic testing, to do it and possibly rule out the need for a whole sedated MRI?!<br><br>
Anyway, I just needed to vent. I hate playing the waiting game for vital information about my kids.
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><br><br>
The waiting game is never fun!
 

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I am waiting for results myself. DH and I are doing genetics on ourselves to rule out being carriers of scary sh*t. <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/dizzy.gif" style="border:0px solid;" title="Dizzy">: <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/irked.gif" style="border:0px solid;" title="irked">: b/f trying for bambini #2.<br><br>
We went to a leading geneticist at NYU Medical and we were told results will be back in 2-3 wks. Its been more than that...Ugh! They are still waiting for all the results to come back.<br>
Very hard indeed.<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/irked.gif" style="border:0px solid;" title="irked">: <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/angry.gif" style="border:0px solid;" title="angry">
 

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It is hard to wait. We have a neurology (looking at genetics) this week and one of the things I've been hoping is that we don't have to do an MRI first. I don't know the answer to the which should come first..I do know the metabolic clinic was going to do genetic testing first. I know it is so hard to wait. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> I hope you find out some answers.<br><br>
I've been to a geneticist and a neurologist and no one can tell me anything about my son. Apparently he is the only one like him. Prepare yourself for that possibility too.<br><br>
(First we saw the neurologist, then the geneticist, then the neurologist again. We just had an MRI and it came back "within normal range" and he is fine on everything but low normal on carnitine for the blood and urine tests.)<br><br>
Sincerely,<br>
Debra, homeschooling mom of 4 ages 10 (AS), 9, 7, and 45 mos (HFA)
 

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you know, I think the waiting is harder than dealing with the problem. I can pretty much deal with whatever I have to, but the waiting is horrid. I just want to know, and I just want to know now.
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> The waiting game is never easy. Hopefully time passes quickly for you.
 

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Thank you for all these posts. You are really helping me through the waiting, and I appreciate the suggestions too.
 

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<div>Originally Posted by <strong>Sierra</strong> <a href="/community/forum/post/7541220"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">and wouldn't it be better if it was something like Fragile X that could easily be diagnosed with the genetic testing, to do it and possibly rule out the need for a whole sedated MRI?!</div>
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Yes! Ds was also tested for metabolic disorders and I was glad to have those done before his MRI. I was thinking just like you. Better to know so we <i>could</i> not do the MRI if we have our answer...
 

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Just wondering...what are your son's symptoms?
 

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<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;">Just wondering...what are your son's symptoms?</td>
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Global developmental delays with especially significant language delays<br>
Periodic repetative blinking and/or "spacing out" (though his EEG was normal)<br>
Some signs of ASD, such as avoidance of eye contact, but his "social and adaptive skills" are the only area in which he doesn't score delayed.<br><br>
However, his genetic history is something of concern. Both his birthparents (and his half-brother) are cognitively disabled and developmentally delayed to the extent that they can't live independently. There are also a range of neurological issues in the family, including possible ASD.
 

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See I guess I would want to just do it all at once. Why not pull the labs after the put in the needle to sedate him? They will be fasting labs which will be even better...and all at once.<br><br>
Call the neuro back and ask about this. The nurses are usually happy to do it.<br><br>
And you only have to wait 1 week for a sedated MRI? You are sooo lucky.
 

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<div>Originally Posted by <strong>mamaverdi</strong> <a href="/community/forum/post/7557243"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">See I guess I would want to just do it all at once. Why not pull the labs after the put in the needle to sedate him? They will be fasting labs which will be even better...and all at once.<br><br>
Call the neuro back and ask about this. The nurses are usually happy to do it.<br><br>
And you only have to wait 1 week for a sedated MRI? You are sooo lucky.</div>
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Wow...smart thinking!! <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/thumb.gif" style="border:0px solid;" title="thumbs up"><br><br>
And she is lucky hunh. We waited 1 month...
 

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No, we have to wait one week to get the MRI *scheduled.* Not to get the MRI. Yeah, one week would have been amazing.<br><br><div style="margin:20px;margin-top:5px;">
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<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">the scheduling department runs it through insurance first and then will call us to schedule the appointment...that will take another week or so. Then there is going to be something of a wait before the MRI</td>
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Oh, sorry. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> But 1 week *would* be awesome.<br><br>
Still, I would see what labs they want as fasting labs, and get those drawn when they put in the iv...they can bleed it before using the vein for fluids and sedation.<br><br>
AND, if there were other metabolic labs, I would get those done ASAP. Those labs take forever to get back. Really. forever. So...the sooner you do them, the sooner, you get answers.<br><br>
Usually metabolic doctors run labs before ordering the MRI. MRIs are also ordered at the same time. Most neurologists do NOT do metabolics. Unless it's a neurometabolic doc. The best are at Cleveland Clinic.<br><br><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> The waiting is so so so hard.<br><br>
(writing this as I hear my yet again sick baby coughing, who I'm waiting on labs for...)
 
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