That is reassuring! Thanks for taking the time to comment :)

Honestly I am not offended. I am confused. I'm not sure how her situation became so critical that I can't put her mental health first for now? ETA: Really it does take a lot to offend me. I am very thick skinned. And I will say if I am offended. I am really just trying to figure out what I said that has most of you more scared for her than I am? I am open to hearing what you see that you think that I am missing?

This statement right here is where you are losing me...I began this post admittedly saying that I am on the fence about the MRI and hate the idea of sedation. I get why you are on that train of thought. I then returned and said after having time to reflect. It's not the sedation...that was just a surface level uneasiness that I grabbed on to to explain away my concern. The real conflict within me was the realization that I am overwhelming my child with MY need to know what is *wrong* and fix her. This is not in HER best interest nor is it in line with what her Dr's are seeing. But I WILL get an MRI for her if that changes. In reality the concern about sedation wasn't the reason for my hesitation and it isn't the reason I am not having her do it. And feel free to tell me ALL the horror stories. None of that freaks me out or messes with my mind. I know the realities of what can go wrong in life. I just now that in MY situation a nervous breakdown is more likely in our future than a tumor. If those odds reverse she will be in an MRI machine.

And I have heard more than one person question if I could live with myself if we don't have the MRI and something was missed. Yes. Yes I could and I say that with no uncertainty. I am making every decision with my daughters BEST interest at heart. If that Dr today had wanted the tests and I declined then maybe not but given the circumstances yes i could. I could live guilt free knowing that I made all the best choices I could and that all people were in agreement.

Canadian mom of 2 -funny enough I was just coming here to say the same thing? And because it is the internet and tone can be misunderstood I really want to stress that I am not typing any of what I am about to say with snark and sarcasm. Hopefully it can be read with the intent that it is typed: I am unsure if I am not doing a good job explaining myself or if some of you are just unable to connect the dots of what I am saying. Just unable to see the forest for the trees per say? But I am unclear on what information you have gleaned from my posts that gives you the upper hand in diagnosing her or prioritizing her needs? And I am being sincere? I am lost as to how you think that my situation has gotten to CRITICAL stage that would require these MRI's happen right.this.very.minute? Because in my actual world the people who are invested in her and meeting with her don't have that same sense of urgency? I, as her parent don't feel the urgency that you wish me to have. When I emailed my OT the results of today appointment she was relieved. She has ALWAYS said exactly what the Neurologist said today. That my dd is gifted and the world is a confusing place for her. In almost the same words. But of course...she is an OT...not a Neurologist, maybe she is wrong I thought! This was a breath of fresh air to be met with the same opinion from another highly regarded professional. And rest assure...if my dd EVER has indicators of a brain tumor I will rush her for an MRI. Heck I MAY even ask for one in 6 months IF I feel it's warranted. My daughter has NO HISTORY of anything wrong Neurologically. Nothing. Not one marker. I only barked up that tree because of the advice from people here. Not because any Dr was concerned. No family members. No one. But I barked up that tree and I am satisfied that I chased all the squirrels out. I am sorry if you aren't. But she does have a history a severe anxiety. And THAT is being triggered right now. So that is what I will focus on. Not imaginary tumors, not basil ganglia, not hypertonic muscles, not all the what ifs that have no basis in our reality.

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!

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!

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.

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.

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.

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.

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.

THANK YOU!

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 :)

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.

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.

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?

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.

Great point!

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.

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?

Maybe just "play along" to shut her up? Admit that you see what she sees but then shut her down with facts. Maybe she keeps bringing it up because she doesn't *think* you understand what she is saying? If she keep bringing it up she is clearly not getting what she needs from you to move on- not your fault of course!!. Have one final conversation about it and then close the door. If she brings it up again move on and tell her why very honestly. Like say "Yes we are aware of the cons associated with not attending regular school, we mitigate that in every way possible but obviously we cannot replicate a 32 pupil classroom setting. We are comfortable with the idea of homeschooling him and see the pro's as outweighing the cons in his specific situation. This was not a decision that was made lightly nor is it one that I am comfortable changing at this point but would be willing to re-evaluate next year. While I understand your concerns regarding his automatic responses I assure you that this is something we have seen in very specific situations and is not related to his being home-schooled." She will know how you feel, that you are aware of her concerns, the why's of her concerns and a clear time line of when to revisit the topic.

My current OT is exactly that needle in a haystack! She is a gem of an OT!!

Geodob thank you for writing that out in such and easy to understand way! And looking at it from that perspective does support my fundamental suspicion that she mainly needs to stay on the Vestibular building path we are on. We did also view the Vertigo as a "good" thing. It certainly happened at a time where she was the most vestibular "aware" and even though we stopped Astronaut Training (spinning) her Vestibular system seems to have been retained to some degree. Or it has kicked back on quickly now that we have resumed?? Just this past week I notice that we she gets on her therapy swing she has a "startle" moment where she seems to catch herself as if she might fall backward. This is new for her. She had no sense of this ever before. As well when driving I came up upon a red light and she did a "whoa" as I stopped. She did the same when we pulled in the driveway. All new sensations for her. So that is even potentially why she performed better overall on the Visual test this year?

I bet if you indulge her you will see a positive effect start to take place...she will dial down...then that will allow you to dial down your stress. Then that fresher less stressed version of you will have a positive effect on her. That will allow her to maintain some of the calm...on and on. Take some of the lighter fluid out of this situation and I think you will see some of the flames simmer down. But absolutely find yourself and nourish yourself. Go for walks. Put on headphones when things start to spiral. Take long baths. Find someone to vent to.