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Cancel my dd's MRI? Update post #31


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Ok so as you know we finally saw the Neurologist and he requested blood work and a brain/spine MRI.  The blood work was for his concerns and I suspect the MRI was for mine.

 

The meeting was booked because of some things on this board directing me to a potential CP connection.  The appointment was then bumped up from Oct to early this month because of some issues she was having with her legs.

 

At the appointment he was VERY confident that there was no neurological basis for what she was reporting.  He was confident that what we were seeing was not the result of a neurological issue.

 

During the exam he was unable to perform the leg portion of her exam because she became overwhelmed and had to stop.  It was a rapid fire test and it became trickier for her and it is designed to see if they "lose it".  But overall I think he felt she was rather successful in that portion.

 

So now we have an appointment the end of this month to see the anesthesiologist for the MRI.  She has to be sedated.  Has to.  She will not be able to tolerate the sounds or the confining space.  The movie will overwhelm her etc etc on and on.

 

I HATE that she will be sedated.  Like hate it.  I even wonder if the risk of something going wrong with sedation statistically is higher than the likelihood we will find anything new? Or that even if we find the *new* thing that it won't have any impact on her life - so no meds or surgery exists to help - so what was the point?

 

As it approaches I am wondering if we should adapt the plan?  Hear me out...

 

So the blood work showed B12 deficiency and iron deficiency and we will be some time getting those levels up and seeing what they resolve (if anything).  We know she has ADHD, SPD, Dyspraxia, VPD, CAPD, a math LD and slow processing speed etc etc.

 

So technically I potentially have enough diagnoses to get her all the help I am ever going to get.  Unless the MRI reveals CP or MD etc I will not get access to any additional services and Neuro has really already ruled those out.

 

So I am thinking...get the B12 sorted.  Get the iron sorted.  Get him to finish the lower half exam (he intends to at our next visit) and if that yields something of concern consider the MRI?

 

Or am I just being a pansy and the MRI could be a game changer and I'm just not seeing it?

 

 

 

 

Edited by mermaid'smom
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I prefer to err on the side of make sure there is nothing else.  With all her dx, I would personally want to make sure there isn't something lurking that is the underlying issue across the board that can't be otherwise addressed or contributing. And doctors, especially only one point of view, are not infallible.  What one doctor thinks isn't likely, another would absolutely make sure to rule out.  

 

Like you said, it doesn't come without risks.  Use the appointment with the anesthesiologist as a fact finding.  It doesn't lock you into the MRI.  So ask the important questions. Has she ever had a bad reaction?  Is there a lighter level of anesthesia that would still be effective?  Is it a pediatric anesthesiologist (BIG difference in how they read vital signs and knowing what meds to give)?  What kind of monitoring will she have?  Has or will she have a lot of anesthesia in a short period of time?  Those would be my questions.  (I worked in pediatric dentistry, so these were real concerns from the medical/dental teams point of view.)  If you are not asked or don't receive reasonable answers to these questions, then find a different location or postpone.  Don't underestimate Mommy-tuition.

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I have very forthright opinions on this one, so forgive me in advance: get the MRI. My son was 18 months and had a host of things going on. We had an MRI scheduled that I didn't want to do. We did it anyway and it saved his life. This may not be your daughter's case, but then again something may show up. My son had a brain tumor. He had all these wonky things going on -- seemingly unrelated stuff. It didn't make sense... unless in retrospect you look at the placement of his tumor. 

 

Does your daughter have a brain tumor? Probably not. But at the point the appointment is made and authorized by insurance, I'd go for it. DS has had dozens of MRIs. Each one is stressful and scary, there's no denying it. But the information you receive (even if it's nothing shows up on the MRI) gives you more information to work with. 

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I prefer to err on the side of make sure there is nothing else.  With all her dx, I would personally want to make sure there isn't something lurking that is the underlying issue across the board that can't be otherwise addressed or contributing. And doctors, especially only one point of view, are not infallible.  What one doctor thinks isn't likely, another would absolutely make sure to rule out.  

 

Like you said, it doesn't come without risks.  Use the appointment with the anesthesiologist as a fact finding.  It doesn't lock you into the MRI.  So ask the important questions. Has she ever had a bad reaction?  Is there a lighter level of anesthesia that would still be effective?  Is it a pediatric anesthesiologist (BIG difference in how they read vital signs and knowing what meds to give)?  What kind of monitoring will she have?  Has or will she have a lot of anesthesia in a short period of time?  Those would be my questions.  (I worked in pediatric dentistry, so these were real concerns from the medical/dental teams point of view.)  If you are not asked or don't receive reasonable answers to these questions, then find a different location or postpone.  Don't underestimate Mommy-tuition.

 

It's funny that you say that about Mommy-intuition.  I am so big on that!  On intuition across the board.  I don't consider myself clairvoyant but I have odd experiences of knowing.  I will spare you all the examples but close family and friends now regard my "knowing" as something to reckon with.  Out of the blue last night it just felt like a bad idea.  Not one second before that did I have concerns.

 

I literally turned to my husband - we were watching the kids swim - and just said "should we cancel the MRI?" and he said YES!  He feels the same way.

 

I purposely left this out of my first post because I wanted to see if "logic" was reason enough for everyone else? LOL  But there you have it.  My gut says to not.

 

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I have very forthright opinions on this one, so forgive me in advance: get the MRI. My son was 18 months and had a host of things going on. We had an MRI scheduled that I didn't want to do. We did it anyway and it saved his life. This may not be your daughter's case, but then again something may show up. My son had a brain tumor. He had all these wonky things going on -- seemingly unrelated stuff. It didn't make sense... unless in retrospect you look at the placement of his tumor. 

 

Does your daughter have a brain tumor? Probably not. But at the point the appointment is made and authorized by insurance, I'd go for it. DS has had dozens of MRIs. Each one is stressful and scary, there's no denying it. But the information you receive (even if it's nothing shows up on the MRI) gives you more information to work with. 

 

Great point!

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I HATE that she will be sedated.  Like hate it.  I even wonder if the risk of something going wrong with sedation statistically is higher than the likelihood we will find anything new? Or that even if we find the *new* thing that it won't have any impact on her life - so no meds or surgery exists to help - so what was the point?

 

 

I looked up the risk of general sedation before my daughter's cochlear implant surgery and it was 7 in a million in a generally healthy child. I'm no neurologist, but I would think that the chance of finding something on the MRI is going to be higher than that. And if there *IS* something on the MRI, that would be a game-changer.

 

The MRI that my daughter had done was completely normal but it was good that we had one on file because it showed that her ear anatomy was fine for placing the cochlear implant.

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I'd wonder whether the sedation is merely IV-conscious (not necessarily a big deal) vs a full, breathing-tube situation.  I can't remember what it was for my ds when he was 5.

 

I think I was the one wanting to rule out tethered cord due to leg pain; MRI is the only way.  You'd need to look up symptom lists to see what else besides leg pain might point in that direction.  (Seriously, after my ds had his tethered cord released, I was concerned that my dd also had one, for very good reasons, and it wasn't until she was a teen and needed an MRI for mystery back pain did we know for sure that she did not have a tether, so I could finally be relieved.  Still, she has some funky issues with the tailbone...)

 

If you want another curve ball, my kid-with-issues gets mystery leg pain, but not really in the joints.  It's unclear where it comes from - he says it feels like "bruises" but as far as I can tell, it's really some sort of soreness.  (For years, ped said it was growing pains.)  Super duper controversial and a long story, but he has positive bloodwork for lyme.

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I'd wonder whether the sedation is merely IV-conscious (not necessarily a big deal) vs a full, breathing-tube situation.  I can't remember what it was for my ds when he was 5.

 

I think I was the one wanting to rule out tethered cord due to leg pain; MRI is the only way.  You'd need to look up symptom lists to see what else besides leg pain might point in that direction.  (Seriously, after my ds had his tethered cord released, I was concerned that my dd also had one, for very good reasons, and it wasn't until she was a teen and needed an MRI for mystery back pain did we know for sure that she did not have a tether, so I could finally be relieved.  Still, she has some funky issues with the tailbone...)

 

If you want another curve ball, my kid-with-issues gets mystery leg pain, but not really in the joints.  It's unclear where it comes from - he says it feels like "bruises" but as far as I can tell, it's really some sort of soreness.  (For years, ped said it was growing pains.)  Super duper controversial and a long story, but he has positive bloodwork for lyme.

 

Yes I remember it was you that wondered about the tethered spinal cord because of the leg pain.  Except at the time I just didn't clarify that she has never actually reported pain.  She actually says there is no pain.  She reports numb, floppy, tired.  Which apparently B12 can cause along with tingling sensation. 

 

It is really only the spinal MRI that I am even curious about.  It is what makes me want to fight this gut feeling to pass on it.

 

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I looked up the risk of general sedation before my daughter's cochlear implant surgery and it was 7 in a million in a generally healthy child. I'm no neurologist, but I would think that the chance of finding something on the MRI is going to be higher than that. And if there *IS* something on the MRI, that would be a game-changer.

 

The MRI that my daughter had done was completely normal but it was good that we had one on file because it showed that her ear anatomy was fine for placing the cochlear implant.

 

I worry about the risks in a child with issues? 

 

I know my fear is based in a lot of things.  Things have been interesting for us lately for sure and I wonder what affect it has on my concerns?

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I worry about the risks in a child with issues? 

 

I know my fear is based in a lot of things.  Things have been interesting for us lately for sure and I wonder what affect it has on my concerns?

 

This is a good question.  The particular risk I worry about would be nitrous oxide (? laughing gas) where people with the MTHFR polymorphism (my ds and dd are compound heterozygous) have some sort of issue clearing it (or maybe it was some other gene, I can't recall, losing my mind at this point).  With a b12 issue, there's a chance these types of genes could be in the mix for your child.  However, I kind of doubt that NO is used for MRI sedation.  Other things I might also worry about (e.g. morphine) but those wouldn't be at play in your situation.  I'd want to find out from the anesthesiologist specifically and then read what you can find about that med in kids with issues.

 

Back in the bad old days, I recall that IV sedation, at least in adults, would be something along the lines of fentanyl and versed.  I have no idea if they are used in kids.  Maybe when you make the appt with anesthesia, you could ask the receptionist to have a nurse call you (and then find out from the nurse what the anesthesia typically is), so that you would be better prepared to ask questions of the anesthesiologist when you meet.

 

(Eta, my kid with issues, with the bad genes, the tethered cord, etc., has had two MRIs, one sedated, one not, two surgeries for kidney and spinal cord, and also full anesthesia for a cardiac catheterization.  I don't recall there being problems for him, though in general I do have a vague concern about clearance, considering genes pertaining to that.)

Edited by wapiti
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I worry about the risks in a child with issues? 

 

I know my fear is based in a lot of things.  Things have been interesting for us lately for sure and I wonder what affect it has on my concerns?

 

I say this kindly, but generally all kids who have MRIs have them *because* they have issues. MRIs aren't for fun. Yes, there are risks (there are risks for every medical procedure, without a doubt). But your medical team is aware of the risks, and they recommended a MRI. No doctor I have ever met would do a sedated MRI with a kid just because the mom asked. There has to be a heck of a lot more going on before they even go there (for us, a MRI costs insurance about $15k -- that's a lot of money for no reason).  DS7's oncologist weighs very carefully, every meeting we have with him, the benefits versus drawbacks of having an additional MRI. I know doctors and medical staff get vilified in the media, but for the most part, we've had very brilliant, caring professionals.

 

I get momma intuition, but I also know that my momma intuition isn't a substitute for decades of medical school, interning, and practice. I also know that my intuition knows when something is amiss -- it may not say brain tumor in the area postrema, but it knows danger. My question is whether your intuition is saying "something is amiss and I am afraid of what it can be" or "something is amiss and I'm stressed out and I can't deal with anymore right now" or specifically "this MRI is contraindicated because DD is deathly allergic to all anesthesia they could use for a MRI"? Again, I'm not making light of intuition, but your doctor made that appointment for a reason.

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I worry about the risks in a child with issues? 

 

I know my fear is based in a lot of things.  Things have been interesting for us lately for sure and I wonder what affect it has on my concerns?

 

When I say "relatively healthy", I mean not having known chronic health issues like asthma or a heart condition, etc. My SN child certainly has issues, but nothing that would make getting anesthesia riskier than a totally neurotypical healthy child.

 

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Well it is worth noting that here in Canada we don't pay for these services directly or need insurance etc.  While I wouldn't say the system gets *abused* I will say that you can get anything you ask for pretty easily (as per my experience).  As a parent if you have a concern they will order  the tests pretty generally.

 

In fact at this appointment when he said there was literally zero signs of a neurological issue I said "Oh good because it was Ataxic CP I was concerned about".  He said "Well...we will do a brain MRI to rule that out for you".  So that MRI may or may not have been issued for my sake? 

 

The spinal MRI came because she had ONE red flag for spinal issues. 

 

 

The good news is I just called the Neurologist and asked about coming in to discuss the blood work and my concerns and finish the leg exam and he was on board and will see us tomorrow.

Edited by mermaid'smom
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I'm in Canada too & fwiw, I think that they will NOT order things that they cannot justify to the provincial health plan. They get audited and cutbacks are everywhere. If a doc refers, I'd take it as something that needs doing to give them a full and complete picture, even if it's just to rule out a bunch of rare things. 

I'd do it, esp if you're doing it at children's or a hosp w/ good peds dept. 

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One of my DD's has had three brain mri's and will have another soon. She has never been sedated but now she needs contrast each time and I worry about the clearance of that. It's not fun but I know it's unavoidable. Just saying, I get it.

 

I remember that before surgery for the DD who had weakness and tightness in her legs, I had flashes of anxiety. I even called the doctor a few days before the surgery and had his people explain why this was really necessary, even though we had several second opinions prior to that point. He also spent time talking to me the morning of the surgery.

 

I will say, in general, the pediatric places make it nice and monitor well. But we've had good experiences in general places, too. I think they understand the nervousness.

 

DH was the one who took that one for the MRI of her spine because I knew she would hold it together better for him. And I took the one who needed the brain MRI every time because She does better with me.

 

I also was the support person for a friend whose young child needed an MRI. Is there someone could be there for you?

Edited by Tiramisu
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I'm in Canada too & fwiw, I think that they will NOT order things that they cannot justify to the provincial health plan. They get audited and cutbacks are everywhere. If a doc refers, I'd take it as something that needs doing to give them a full and complete picture, even if it's just to rule out a bunch of rare things. 

 

I'd do it, esp if you're doing it at children's or a hosp w/ good peds dept. 

 

Oh I am aware that given her situation it is justifiable.  I see why she meets the criteria for having them.  I also see that up until this Summer when she started having weird leg sensations that everything she deals with could be explained by the accumulation of her diagnosis's.   I also see that the recent leg issues may be a B12 thing.

 

But when I see the Neuro tomorrow I will take his advice.  If he feels strongly about them I will go. 

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Doctors don't generally order an MRI with sedation just to appease the parents. I think he's making sure nothing else is going on. If you still have concerns, then I'd tell him directly what your concerns are and ask if you still need it.

Yes. And on top of this, insurance companies need good reasons for giving authorization for MRIs. When my DD needed a second one when things were suspected but not clear, the neurologist had to speak to the insurance company doctor to explain the evidence for the suspicions.

Edited by Tiramisu
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Mermaid'smom, the Neurologist is the one that asked for the MRI, correct? I think asking him makes good sense as he can explain further why he did and also possibly alleviate some of your concerns. I think that is a wise decision speaking with him as you can also share some of the concerns you may have about the sedation with your child.

 

Hugs! I know you have been through quite a bit.

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I am going to chime in here, and I agree with pp's about getting the MRI, because. You don't know what could be lurking beneath the surface. Like Elizabeth said, it is and can be an important part of the whole picture.

And they are so correct that you can walk into 3 different docs offices and get 3 different opinions.

 

That's where the MRI becomes important .

 

When you have the leg issues you described in other posts, it is something worth investigation .

 

This is the time and age to rule out nuero issues.

 

I read a post earlier on the swb thread where she mentioned something about the SN portion of the new edition .

 

A mom came on and shared, she wishes that book had been out earlier....and she wishes they had gotten DX of CP earlier because now the prognosis long term is not as bright had it been if caught earlier.

 

Our pediatrician for 25 years tells us, CP is missed ALOT by the specialist even.

 

IMO and experience with rasing a CP child is, it's not something you want to push off, we all know with SN issues in general, the earlier the better.

It's esp. True with CP.

 

It probably isn't CP.

I know I talked about it and encouraged you to rule thst out, after you had mentioned it, I'm thinking maybe 1 or 2 others may have broached the subject and that's why you mentioned it.

 

I shared our experience.

CP is not something you want to rule out later rather than earlier.

Because of the physical affects of this debilitating condition . it is vital , esp important thst it's ruled out earlier rather than later.

 

It probably isn't CP. And I know those mri's are tough. I was even mad at the doc who first recommended it.

 

We had mir's with 2 kids and my DS 12 is autistic and REALLY didn't do well. I didn't like the idea of sedation either. But as another poster said, there are saying degrees of sedation.

 

The option we went with finally on ds12 was a simple pediatrc relaxation pill. We took one the night before. Morning if, and when we got there. It helped tremendously .

 

My son did t do well with the movie thing either. He had to have headphones and pretend he was going to a far off land.

 

I promise you....the MRI problem now, if on the outside chance it is a neuro condition, is WAY less inconvenient and mental torture for mom lol...now...than a possible DX later that you have missed valuable te to correct.

 

I cried everytime my kids had them. I know honey, it's not easy . on them or mom.

 

But I think it's important to note as others have pointed out and I'm pointing out too, that needs to be ruled out.

 

It could be b12 and....something else.

 

Or, just b12. But we dint know until we rule it out.

 

I know it's scary and very difficult. But it's worth having the peace of mind, and not wasting precious time thst could be irriversable later.

 

CP is not something to mess around with and early findings, are crucial to long-term out come.

 

My dd26 has a great life, all things have been corrected ( most , her fingers are too short, fallen arches) but, she leads a very active and fulfilling life because of early intervention.

 

She was 10 mo's when pediatrician sent is for MRI.

 

She wouldn't be where she is today without that early intervention .

 

It becomes too late, physically too late.

 

I encourage you to go read thst post on one of the other boards that swb posted to today, and read the comments from the mom below it.

 

Their docs didn't catch it and now the prognosis looks very different than if it was caught earlier.

 

I think the thing you need to ask yourself is ...

 

Is it worth not doing a scan that has good ways around the anxiety of the child....to be in a position later on thst the damage is irreparable?

 

It's a simple scan. The after part is so releiveing and not nearly as bad as we might have thought.

 

Ask the anesthesiologist the different options of sedation, mild oral sedatives thst take the edge off etc.

 

Because I promise you, you will live with internal regret and guilt forever if it does turn out later down the road that is WAS a neuro condition.

 

That is WAY worse than the anxiety for a very short time to get a scan to rule it out.

 

CP is something you want to rule out now.

Again, 3 different docs will tell you 3 different things.

 

Get thst MRI. You will feel releif knowing neuro had been eliminated from the picture.

 

PS. Both my kids the MRI caught things we can work on early .

Not saying that's your situation. It could very well be nothing.

 

But wouldn't you want to know for SURE?

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DS had an MRI with sedation to check for possible neurological damage from an incident in his toddlerhood. He was 9 at the time.  It was negative/no damage, but it was great to know for sure. He had no problems with sedation. It went very smoothly.

 

Like you said about your dd, he already had enough known issues to secure all of the resources and programs that we needed/wanted. In fact, he was already considered disabled because of the mental/emotional disorders - but that did not stop us in any way from wanting to know the full picture just in case. No regrets here.

 

 

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Sounds like you've already decided to do this, but I would talk with the doc.  The doc might have had more reasons or still want it just to make sure they aren't missing things.  Unfortunately, waiting around for a potential b12 cure to kick in isn't very safe if there's another thing going on.  He may want to cover his butt and be sure.

 

Hopefully you get an answer tomorrow you can feel comfortable with!  :)

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Thanks everyone.  It's great to have many insights.  If I am being honest...it is more than just my concern over sedation.  don't get me wrong if it was sedative free I would be way happier...but I'm still not sure I would be 100% on board. 

 

I've had some time to really think tonight about my reservations and this is a big part of it:  She is being bombarded right now.  The last three months of school were difficult.  Then summer came and she has had testing testing testing.  She has had panic attacks at the neurologist, at the dentist, getting blood work, getting a B12 shot.  She is hearing how she struggles with vision, how she has issues hearing.  She is getting glasses and an FM system for school.  Speaking of school she is starting a new school in three weeks with all new teachers and routines.

 

It's the timing.  She has a LOT going on and it is all shining a light on her short comings.  I think she just needs a break to adjust to what we now know and get sorted in school.  The MRI is going to be scheduled for the first few weeks of school and I just think if it can wait - than it can wait.  When she is settled in and we have created a new normal then we can discuss.

 

As a mom - it's all gut.  I know like most of you it has been MY gut that has gotten us this far.  As a mom you know something is not right with your child.  Even in the face of every teacher looking at you blankly.  Even when your own parents say that you are making a mountain out of a molehill.  You know. 

 

I realize how easy it is to read my story over the internet and have strong opinions about what I do and I can appreciate that and appreciate the opinions you express.  But the part of my story that you are missing is knowing my child.  Looking into her eyes and seeing that she is done.  Knowing that she needs a break.  Knowing that she needs a chance to focus on what is fun about being 12 and entering a new school. The truth is that this appointment wasn't even supposed to occur until Oct.  I believe that I can afford the time.

 

So I will speak to the Neurologist.  If he feels even slightly concerned that there may be something that we need to look at sooner than later I will put all my concerns aside and get on board.  But if he agrees with me or seems unconcerned than I will put it off until it feels like the right time.

 

But thank you :)

Edited by mermaid'smom
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Well it is worth noting that here in Canada we don't pay for these services directly or need insurance etc. While I wouldn't say the system gets *abused* I will say that you can get anything you ask for pretty easily (as per my experience). As a parent if you have a concern they will order the tests pretty generally.

I missed this post before. Yes, while not all doctors are created equal, the good ones will go based on concerns that they find make sense and order the tests. Both our current GP and ped have ordered tests for us based on my concerns.

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Thanks everyone. It's great to have many insights. If I am being honest...it is more than just my concern over sedation. don't get me wrong if it was sedative free I would be way happier...but I'm still not sure I would be 100% on board.

 

I've had some time to really think tonight about my reservations and this is a big part of it: She is being bombarded right now. The last three months of school were difficult. Then summer came and she has had testing testing testing. She has had panic attacks at the neurologist, at the dentist, getting blood work, getting a B12 shot. She is hearing how she struggles with vision, how she has issues hearing. She is getting glasses and an FM system for school. Speaking of school she is starting a new school in three weeks with all new teachers and routines.

 

It's the timing. She has a LOT going on and it is all shining a light on her short comings. I think she just needs a break to adjust to what we now know and get sorted in school. The MRI is going to be scheduled for the first few weeks of school and I just think if it can wait - than it can wait. When she is settled in and we have created a new normal then we can discuss.

 

As a mom - it's all gut. I know like most of you it has been MY gut that has gotten us this far. As a mom you know something is not right with your child. Even in the face of every teacher looking at you blankly. Even when your own parents say that you are making a mountain out of a molehill. You know.

 

I realize how easy it is to read my story over the internet and have strong opinions about what I do and I can appreciate that and appreciate the opinions you express. But the part of my story that you are missing is knowing my child. Looking into her eyes and seeing that she is done. Knowing that she needs a break. Knowing that she needs a chance to focus on what is fun about being 12 and entering a new school. The truth is that this appointment wasn't even supposed to occur until Oct. I believe that I can afford the time.

 

So I will speak to the Neurologist. If he feels even slightly concerned that there may be something that we need to look at sooner than later I will put all my concerns aside and get on board. But if he agrees with me or seems unconcerned than I will put it off until it feels like the right time.

 

But thank you :)

You're right mama, thsts alot in a very short amount of time.

 

If you see her doneness at this point, quite certainly waiting a few months and for her to get settled isn't going to hurt.

I think for the reasons you listed above, it's good to let her get settled in her school, let her adjust.

 

The love all the ladies have here for you and my own experience and others with neuro issues, the fear is that, it would be hard to get back to that place in a moms mind.

 

Just don't let it slip by.

I'd say when mamas see what all our kiddos have been through and more changes ahead. Absolutely, let her have some fun before school starts :) funs fun! Ha-ha :)

 

Just please keep that Oct. Appt.

You're doing good mama.

 

You're right, it is hard for us to sit far removed , not knowing all you know about your sweetpea.

 

Big hugs :)

You're doing good mama :)

She's a lucky little girl to have you :)

 

October, can wait til...Oct. Lol :)

Enjoy the time! I know you will :)

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My DD has been under sedation 5 times for a 6.5 hour gut operation, MRI, two exploratory surgeries, and one office procedure. When she had her MRI and was sedated, the only person freaked out was me. DD had the MRI because the information was vitally important to her overall health and well-being.

Edited by Heathermomster
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Update:

 

SOOOO happy that I called in yesterday and went in today!

 

So first we discussed the blood work and he felt that the B!2 deficiency was so minimal that it would not be factoring in to what we are seeing.  Same with the Iron deficiency.  He said we will def see an improvement with her energy, mood etc.

 

Then I mentioned the MRI's and said I was concerned about the timing.  That she is potentially overwhelmed and could we put them off.

 

So he said that he was never OVERLY concerned about getting them done but because there had been an incomplete physical exam he would like to finish that.

 

So she did all the leg stuff (plus some additional stuff to be sure) and he asked her to step out of the room.  He said based on what he saw in the exam he thinks there is ZERO need for the MRI's.  He said she is performing typically for a child her age.  Which I agree with.  This was easy for her and not concerning.  I asked if what we are seeing in terms of some motor planning confusion and even cognitive stuff is JUST explained away by the dyspraxia?  He seemed non-committal to a dyspraxia diagnosis.  He said the inconsistency of her performance leads him to question it.  However dyspraxia is characterized by this inconsistent performance so who knows??  He agreed that because there is no definitive test for dyspraxia it becomes a subjective diagnosis.

 

He was concerned about her emotionally.  Asked a lot of questions.  In the end he thinks she is gifted and overwhelmed in this world. He thinks she over thinks and overanalyses and trips herself up.  He thinks she struggles with confidence and that she doubts herself and it prevents her from doing well.   He thinks she needs more emotional support and we both agreed with him.  Gifted has come up before.  He isn't the first to suggest it.  In fact it has been problematic.  Her Psych ed assessment has as many 100/99th percentiles as it did 1/2th percentiles.

 

Even her Vision Processing test revealed that she scored HIGH but yet we know she struggles.  So this Gifted-ness is no gift. 

 

In the end he agreed that we should dial back on everything.  Let her start seeing the Art therapist that we found and continue to see her OT for SPD.  But that in her case less is more and we should kick a few cooks out of the kitchen and focus on her emotional well being.  He is happy to take the MRI's off indefinitely.  This all falls in line with what my gut was telling me.

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I've had some time to really think tonight about my reservations and this is a big part of it:  She is being bombarded right now.  The last three months of school were difficult.  Then summer came and she has had testing testing testing.  She has had panic attacks at the neurologist, at the dentist, getting blood work, getting a B12 shot.  She is hearing how she struggles with vision, how she has issues hearing.  She is getting glasses and an FM system for school.  Speaking of school she is starting a new school in three weeks with all new teachers and routines.

 

It's the timing.  She has a LOT going on and it is all shining a light on her short comings.  I think she just needs a break to adjust to what we now know and get sorted in school.  The MRI is going to be scheduled for the first few weeks of school and I just think if it can wait - than it can wait.  When she is settled in and we have created a new normal then we can discuss. 

 

I totally sympathize with this. Last year from Feb. 4th when the hearing loss was discovered to May 22nd when she got her hearing aids was truly h-e-double-hockey sticks for our family. But I don't think skipping the MRI (which was very end of Feb or beginning of Mar) would've made it that much less difficult. It was one not-fun day out of 4 months of not-fun days. And ruling out a neurological cause for the hearing loss definitely helped with relieving some of my anxiety.

 

It probably isn't CP or another neurological issue but if it *IS*, that is information that cannot wait (especially if it is something that will get worse without treatment like a tumor).

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I totally sympathize with this. Last year from Feb. 4th when the hearing loss was discovered to May 22nd when she got her hearing aids was truly h-e-double-hockey sticks for our family. But I don't think skipping the MRI (which was very end of Feb or beginning of Mar) would've made it that much less difficult. It was one not-fun day out of 4 months of not-fun days. And ruling out a neurological cause for the hearing loss definitely helped with relieving some of my anxiety.

 

It probably isn't CP or another neurological issue but if it *IS*, that is information that cannot wait (especially if it is something that will get worse without treatment like a tumor).

 

Well he performed all the tests to determine if there potentially is a neurological issue and he feels 100% comfortable that there is not.  I was there watching.  She did exceptional on the legs even surprising myself.  She also did not have the emotional struggle with the test like last time.

 

Add to the fact that last night she tried out for an aerial circus class.  She did not make the team.  Nor did I expect her to because she is out of shape and this is considered an advanced class.  Initially when we found it the website had a registration link but they changed it to a "need to tryout" class and have sort of upped the level of the class this year.  She still wanted to try out and I am never one to discourage my kids.

 

I was shocked.  She didn't really look that different than the other kids.  In a few rare moments she even did some things better than other kids.  But they were clearly in a different league...they could all do walk overs and handstands and mine could barely execute a terrible cartwheel.  But to anyone watching - she just looked less skilled and out of shape.  The owner said that while these were not his elite athletes some of them had been doing this for 3-4 years.

 

So it was eye opening.  She definitely has hit or miss co-ordination and there is definitely an element of - how much does this suit me? to her willingness to bother.

 

Additionally virtually ALL leg complaints stopped a few weeks ago.  I was oblivious of course but then last night my husband and I remarked that she hasn't been saying anything.  It is almost like the OT said - she is becoming  more sensory healthy/aware and she doesn't like feeling anything new.  Now she has adapted to the new normal.

 

So for now..no MRI's.  I will keep my eyes on things and if I see something questionable I have no issue with requesting a second opinion from a different neurologist.  And I have no real issue with the sedation.  Trust me I prefer my kids not be sedated.  But when I thought it over..meh I would take my son for a sedated MRI with not so much as a blip in my heart rate.  I didn't feel right about it for my dd for many reasons.  At this point in time.

 

ETA - and yes it is in "theory" 1 not fun day in a sea of not fun days.  But in reality for MY child it is a meeting first with the anesthesiologist and all the anticipatory anxiety related to that and then it is looming over her for weeks until the actual MRI.  So it is really the cumulative effect of all this stress that I am trying to give her a break from.

Edited by mermaid'smom
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Well he performed all the tests to determine if there potentially is a neurological issue and he feels 100% comfortable that there is not.

 

Saying this gently, but no external test can reveal what is going on inside the body. Any neurologist who claimed to feel "100% confident" without a full eval including neuroimaging is somebody I'd switch away from because he could very well be giving you a false sense of security.

 

My daughter's neurologist did tell me that her symptoms made a neurological cause for her hearing loss fairly unlikely but he couldn't rule it out until he got the MRI results.

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I have had to make the tough decision to hold off on things that I thought needed to be done because of the emotional fragility of my children at given times. It's hard for those of us who don't see the day to day to judge that kind of situation.

 

Backing off on demands does seem to help both emotionally and academically.

 

One DD was getting so burned out by medical tests at one point that I just had to stop and tell myself we would just do one thing at a time. That's it. Since then I have taken that path for many things out of necessity, because I have four with medical and/or emotional and/or learning needs. We all need to keep a balance when we have that opportunity. Sometimes we don't and it's clear and we do what has to be done.

Edited by Tiramisu
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Saying this gently, but no external test can reveal what is going on inside the body. Any neurologist who claimed to feel "100% confident" without a full eval including neuroimaging is somebody I'd switch away from because he could very well be giving you a false sense of security.

 

My daughter's neurologist did tell me that her symptoms made a neurological cause for her hearing loss fairly unlikely but he couldn't rule it out until he got the MRI results.

 

Likewise...my brief retell here of my visits with him do no justice to the hours that we spent with him.  As well as the mountain of paperwork, history, videos and test results that he reviewed.

 

And I agreed 100% that no external test can reveal what is going on inside the body.  But they do indicate the *likelihood* that something more is going on inside the body.  No tests revealed that likelihood.  In fact...he says that her self reports of her leg sensations were neurologically impossible.  That along with her history, test scores and his own personal observations led him to conclude she is struggling emotionally with being SPD, ADHD and gifted. I a;so believe she has anxiety from having a language processing disorder that went un-diagnosed for years.  Now that we have the CAPD results we will work on that and see what unfolds as a result.

 

Based on my own life experience with her...I agree that there is some possibility that he is right.  I also see that there is potential that there may be more going on. 

 

Both my husband and I liked this Dr.  Felt he was more than competent.  Felt he had a good read on her and a keen sense of how she thinks.  He made us aware of somethings we didn't realize before and he was an asset.

 

I realize just from reading everyone else's posts that there is almost a cultural difference between the medical care in Canada and the US but really here in Canada you can get sent for a "why not" medical test.  There is nothing that hinders a physician from sending you for testing.  I would never say it is abused but it is definitely a luxury we have here in Canada - from my own personal experience.  And if I want these MRI's next week I assure you they will be accessible to me.

 

For now we are walking away from the idea.  Not closing the door. 

Edited by mermaid'smom
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I have had to make the tough decision to hold off on things that I thought needed to be done because of the emotional fragility of my children at given times. It's hard for those of us who don't see the day to day to judge that kind of situation.

 

Backing off on demands does seem to help both emotionally and academically.

 

One DD was getting so burned out by medical tests at one point that I just had to stop and tell myself we would just do one thing at a time. That's it. Since then I have taken that path for many things out of necessity, because I have four with medical and/or emotional and/or learning needs. We all need to keep a balance when we have that opportunity. Sometimes we don't and it's clear and we do what has to be done.

 

Thank you!  We will back off and let her adjust to all the new things and if nothing gets better we will just request them then.  She needs to just be 12 for a while.

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I'm just going to ask the question. Are you really sure she doesn't have hypermobile joints?

 

My oldest had sensations in her arms and legs starting around fourteen. She had MRIs, a very painful nerve conduction test, blood work galore, multiple specialists. She has mild dyspraxia, APD, anxiety, gastritis, constipation. After years of this I suspected it could be hypermobility. Still we went round and round without clear answers for eight years. We also got comments about her issues being related to being bright and sensory sensitivities in that time. Finally, it was time for her to move from the pediatric to the adult medical world. A new rheumatologist looked at her, examined her joints, and said all her problems (except the APD) are explained by HYPERMOBILITY, even the sensations in her arms and legs that started everything. The GI issues, the anxiety, everything.

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Just a bit of perspective...Since June (and cumulatively between myself and my 2 kids) I have attended 36 medical appointments.  Between dental, vision, walk-in, OT, Chiro, neuro, Pysch, blood draws, B12 injections.  My family needs off the roller coaster.

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I'm just going to ask the question. Are you really sure she doesn't have hypermobile joints?

 

My oldest had sensations in her arms and legs starting around fourteen. She had MRIs, a very painful nerve conduction test, blood work galore, multiple specialists. She has mild dyspraxia, APD, anxiety, gastritis, constipation. After years of this I suspected it could be hypermobility. Still we went round and round without clear answers for eight years. We also got comments about her issues being related to being bright and sensory sensitivities in that time. Finally, it was time for her to move from the pediatric to the adult medical world. A new rheumatologist looked at her, examined her joints, and said all her problems (except the APD) are explained by HYPERMOBILITY, even the sensations in her arms and legs that started everything. The GI issues, the anxiety, everything.

 

I guess anything is possible but the signs and symptoms from the link you posted do not match up with much of what we see.  The fatigue yes.  But no pain.  She is not very flexible.  Nothing I read set off any alarms in my head.  But thanks for the link!

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Mermaid'smom, not being very flexible can be explained by fitness level also. My suggestion to you, look into aquatics and aquatic ballet, if she is already a good swimmer. It will boost her fitness level fast without putting too much strain on her joints and muscles.

 

Have to run... I'll email later...

Edited by Guest
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Mermaid'smom, not being very flexible can be explained by fitness level also. My suggestion to you, look into aquatics and aquatic ballet, if she is already a good swimmer. It will boost her fitness level fast without putting too much strain on her joints and muscles.

 

Have to run... I'll email later...

 

I think genetically we are not a flexible bunch! LOL  No cirque de soliel in our future ;)

 

She isn't a great swimmer - endurance - but I bet she would love synchro swimming!!  I should look into it!  Thanks!

Edited by mermaid'smom
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Just a bit of perspective...Since June (and cumulatively between myself and my 2 kids) I have attended 36 medical appointments.  Between dental, vision, walk-in, OT, Chiro, neuro, Pysch, blood draws, B12 injections.  My family needs off the roller coaster.

 

I sympathize, I really do. But frankly, I think this is a "suck it up, cupcake" thing because of the risks of waiting. How would you feel if you put it off and then the MRI turned up a tumor or some other serious issue?

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Saying this gently, but no external test can reveal what is going on inside the body. Any neurologist who claimed to feel "100% confident" without a full eval including neuroimaging is somebody I'd switch away from because he could very well be giving you a false sense of security.

 

My daughter's neurologist did tell me that her symptoms made a neurological cause for her hearing loss fairly unlikely but he couldn't rule it out until he got the MRI results.

This is true and spot on.

 

No way can an external exam tell you what's *really* going on.

 

I know the MRI is a hard thing fir mom and child.

 

It's a *very* important thing to have as part of the diagnosing process.

It's vital in fact.

 

Crimson wife said it perfectly.

 

Any doc who says they feel 100% confident, I would switch docs.

I would run in fact. Not passing go, not collecting 200.$, ...(monopoly)... Nada.

 

I would find a different doc ASAP.

 

I would listen to crimson wife.

She's giving you spot on, educated advise there.

Edited by Kat w
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I sympathize, I really do. But frankly, I think this is a "suck it up, cupcake" thing because of the risks of waiting. How would you feel if you put it off and then the MRI turned up a tumor or some other serious issue?

Again, spot on.

 

Crimson wife has personal experience plus education.

 

We care about you and you sweet lil one.

I would heed crimson wife's warnings.

Edited by Kat w
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I'm just going to ask the question. Are you really sure she doesn't have hypermobile joints?

 

My oldest had sensations in her arms and legs starting around fourteen. She had MRIs, a very painful nerve conduction test, blood work galore, multiple specialists. She has mild dyspraxia, APD, anxiety, gastritis, constipation. After years of this I suspected it could be hypermobility. Still we went round and round without clear answers for eight years. We also got comments about her issues being related to being bright and sensory sensitivities in that time. Finally, it was time for her to move from the pediatric to the adult medical world. A new rheumatologist looked at her, examined her joints, and said all her problems (except the APD) are explained by HYPERMOBILITY, even the sensations in her arms and legs that started everything. The GI issues, the anxiety, everything.

Is hypermobility the same thing as low tone?  

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Heathermomster , not. It's not.

But coincidentally , my low tone guy , more than one specialist has mentioned hypermoblity.

 

It's basically...loose joints. It used to b confused with those being double jointed.

 

Further research showed. Double jointed isn't always/usually hypermoblity.

 

Hypermoblity creates the more limp limb affect.

 

We had tests run for my oldest for this to rule it out.

Edited by Kat w
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