Yes if I remember correctly Folic acid was checked?? I no longer have the requisition form but I think so. Oh and I got her on board - we are going for our first shot tomorrow if everything falls into place!

Geodob - Thank you for all that info! Here is the breakdown... Her B12 is at 217 which she considers low but not severely low. But she acknowledged that internationally our "low" is significantly lower than other countries. Like Tiramisu said other countries want to see numbers in the 500s. She also said that each person is different and that 217 might be a fab # for one person but the person beside them might need #600 to get the same results. She said she has some patients whose numbers are in the 800s so for my dd 217 could be considered SEVERELY low. More concerning to her was the Iron levels. She said that ideally she would like to see her level be a 40 and it is currently 9. Worth noting that she has not even started her period yet and when she does that number will drop lower so that is an ASAP situation! She recommends the B12 shot for a variety of reasons - that set my dd off but I know how to work with her to get her on board so that it just a conversation away from being a reality. I am curious to see what the Neurologist has to say about all this! This was just a visit with our family Dr who happened to get the results first because her office is in the same building as the lab. Very happy with how this is all unfolding!

Going in an hour! Will update :)

I have been reading about the autism = B12 connection...my brain hurts from it all. I can't even speak intelligently about it! LOL. So much to digest. Really excited to hear what the Dr says tomorrow!

Thanks everyone! I have spent some time tonight researching vit B12 deficiency in kids and I AM SHOCKED! It is my dd's issues to a T!! Here is just one site: Red flags of B12 deficiency in infants, children and teenagers If your child exhibits any of the following signs or symptoms, insist that your doctor tests for B12 deficiency. I colored the ones we are seeing at home. Movement problems, including difficulty in walking or writing Mental changes - irritability, altered mood, poor memory, "flat" emotional tone, autistic-like withdrawal Vision problems/abnormalities Slowed weight and height gain Leg pains or other abnormal sensations Fatigue Loss of appetite An abnormally small head circumference in infants or toddlers Apathy, lethargy, or irritability Involuntary movements, such as arm waving in infants or toddlers Tics Grey hairs / premature greying (a few weeks ago I saw a few grey hairs!) Areas of hypo pigmented skin in a Caucasian child and/or vitiligo, or areas of hyper pigmented skin in a black or Asian child A rooting reflex after eight months of age (this reflex is usually absent after six months of age A history of any surgery (including dental surgeries) involving nitrous oxide. This anaesthetic agent is often administered during dental work or surgeries such as insertion of ear tubes in children with chronic ear infections, can inactivate the body's stores of B12 and cause severe neurological damage Failure to thrive (poor appetite, poor growth and/or weight gain, general poor health) Chronic constipation A diagnosis of developmental delay, autism, cerebral palsy, Intellectual disability, or other neurological disorder Severe food allergies or sensitivities A diagnosis of coeliac disease or gluten enteropathy A thyroid disorder or other autoimmune disorder A history of stroke or a diagnosis of arteriosclerosis A diagnosis of any psychiatric or behavioural disorder including ADHD A diagnosis of Downs Syndrome I am seriously overwhelmed with hope that this could be the root of many of our problems!! Then this: The effects of B12 deficiency on kids are especially alarming. Studies have shown that kids raised until age 6 on a vegan diet are still B12 deficient even years after they start eating at least some animal products. In one study, the researchers found: …a significant association between cobalamin [b12] status and performance on tests measuring fluid intelligence, spatial ability and short-term memory†with formerly vegan kids scoring lower than omnivorous kids in each case. The deficit in fluid intelligence is particularly troubling, the researchers said, because: …it involves reasoning, the capacity to solve complex problems, abstract thinking ability and the ability to learn. Any defect in this area may have far-reaching consequences for individual functioning. I just had no idea! And I swear I would never have started down this path if it wasn't for THIS BOARD!!!

My GP called today to say that my dd's bloodwork results came to her office and she is low in Iron and B12!!! That explains so much of the fatigue. Then I see the post about ADHD and B12 and I am seriously wondering how much impact this B12 deficiency is having on her?? I won't know until tomorrow how low her levels are but she asked for us to come in tomorrow to get it sorted. My main concern is giving Iron to a child who has chronic constipation. But it is what it is I guess...

This seems pretty cool! https://www.dyslexiefont.com/en/dyslexie-font/ There is a quick video to watch explaining how it helps. Anyone tried it? I order the free in home copy but will purchase the school version for $60 if we like it.

A great link: http://www.developmental-delay.com/page.cfm/286 PLEASE heed this advice C&P from link: To increase vestibular processing of rotary vestibular input, give opportunities to spin (not erratically) making sure that you count the number of circles (10 is good) and go smoothly, not too fast. Make sure you try to keep their head at 30 degrees flexion (chin pointed down between upright and chin tuck) in each direction, stopping the swing after going to the right, do not go to the left until they tell you that things are no longer jumping (post rotary nystagmus-or movement of the eyes has stopped) usually about 7-10 seconds. Then you can go 10 circles to the left. This should be a smooth and slower input then when they try to spin themselves. After the 30 degrees in neck flexion, do a 30 degrees flexion and 45 degrees lateral flexion (half way to touching shoulder with chin down) following the same 10 circles each direction. STOP IF THEY DISPLAY ANY SIGNS OF NAUSEA, ILL FEELING, OR ASKS YOU TO STOP ! Watch for signs of irritability, stomach upset, and lack of focus after rotary input, in the next 12 hours. If they have any signs of this do not attempt rotary input any longer and contact OT. )

My dd has an AWFUL vestibular system. We need to do Astronaut therapy with her every second day. Essentially you "spin" them on a therapy board. But after a period of time we ended up buying her one of these swings: https://inyardproducts.com/collections/all and now we spin her in one of these. they are awesome for Proprioceptive as well. They have a blurb about it on their site https://inyardproducts.com/blogs/blog/117413957-10-reasons-to-purchase-a-sensory-swing-for-your-child Now she can go down and "therapy" herself. Which is the goal...to hand off her self regulation to her. We also take ours down and make it into a tube on the ground and she does some work in it that way also. For my dd she will ONLY do therapy if it is fun. She has chores and responsibilities but due to numerous other issues we cannot make chores/work/errands be her sensory diet. We need to set aside time daily and just get it done. But there are some ways that we help her that are just FUN. Swimming is AMAZING. Particularly underwater - deep as in swimming for dive sticks etc. Any playground that has cool equipment and things that will spin you etc. She will be starting Circus school in Sept. She did it years before - long before we knew there were issues - and I think stopping made things worse for her. I think it was built in therapy that kept some of these issues regulated well thus keeping us in the dark longer. She is specifically taking Aerial classes. So lots of flying through the air and swing from thing to thing. http://www.zacadacircus.com/site/classes/5519 Even spinning in an office chair is good for the VS - just make sure you go both directions equally!! And if you feel sick make them jump on a trampoline or run up and down the stairs until the feeling passes or it will stay with them for HOURS and they will never spin again!

Yeah I decided not to give any supplements etc until we have answers. I wouldn't know where to start anyway! LOL You will laugh but my mommy "log" is like nothing you have seen before...I started it when she was having difficulty swallowing. We had OT's turn us away for treatment because they had no idea how to help. When we found this OT and she was so stellar I started taking VERY detailed notes so that if she (the OT) got hit by a bus (God forbid) another OT could read what we were doing and where we were heading and hopefully just step in and take over. Well it has morphed into a 100+ page word document that we intend to turn into a book one day (maybe co-writing with the OT). We have a family member in the publishing industry so we shall see! lol

Oh and even if all this boils down to "just" SPD/dyspraxia I believe she will still be in his care - because he said something like SPD is a brain based condition where your brain does not process info correctly. The MRI will reveal if there is any physical abnormalities in that area of the brain - but it seemed to me that he still felt that this fell under his area of care.

Oh I reread my OP and I do see that my comment: He also thinks there may be a component that is Psychosomatic - which I can get on board with even though it never occurred to me - he thinks she should be seeing her Psychologist on a reg basis. This was based on how she shut down when he asked her questions - lots of: what? I don't know? I don't get it? But when he spoke to me she was constantly giving her input - all "Oh and tell him about when I xyz" though she seemed VERY comfortable. Should have been typed to read like this: He also thinks there may be a component that is Psychosomatic - which I can get on board with even though it never occurred to me. He also thinks she should be seeing her Psychologist on a reg basis. This was based on how she shut down when he asked her questions - lots of: what? I don't know? I don't get it? But when he spoke to me she was constantly giving her input - all "Oh and tell him about when I xyz" though she seemed VERY comfortable. I literally was 5 mins home from the appt and my fingers were typing faster than my brain! But I see that it was misleading.

I'm at the point where I think EVERYTHING sounds like her! From Lymes disease to pregnancy! LOL!

Ok so much to touch on...it was a 2 hour appointment that I condensed down to 30 some sentences. The Psychosomatic comment was JUST in reference to some diagrams I brought that we used to "log" her leg complaints. So the page is a human figure and she colors the legs to correspond with how they feel. So Blue means numb (she often colors the feet this color) orange is tired - she may have colored the quads this way etc. We had compiled about a weeks worth (2-3 sheets per day). He flipped through them and said point blank that what she is reporting (that she feels) is not possible from a neurological standpoint. The variability of them, the things she was reporting didn't fall in line with a person who had neurological issues. They didn't match up with what he would expect to see form a person who had a neurological issue. But he quickly added that he didn't discount what she is reporting that she is feeling. Then he said humans have the ability to block out pain AND to exacerbate it just by how they focus on it and he wondered if these leg sensations are new to her and there fore she is hyper aware about them and therefore he is wondering if there may be a level psychosomatic interference with her reports. It was a SMALL blip of a comment in the big picture. And his follow up comment was that it was his job to tease out if there is some psychosomatic activity coming into play and that he can tease that out in a few ways. One being our feedback and her history (which are biased) and some key neurological "flags" that are completely unbiased. These flags were such things as chronic pneumonia, people who seem to cough a lot etc. They are concrete indicators for neurological issues. In our short meeting her history/feedback didn't indicate Neuro flags nor did she have any of the unbiased flags present in her history. so he said that is in her favor. But this is ONLY in regards to these leg complaints. ASD is on the table. It is always something that I mention but in the framework that she is not diagnosed as ASD. Just that she displays behaviors that are in line with that diagnosis. But it isn't overly relevant to what we are seeing. He nodded along and wrote it down. He wasn't overly concerned but he clearly didn't think it was absurd. As well I am in Canada. Psychosomatic does not mean a loss of services. It is all free in Canada. It was just something he was throwing out there as something that he is supposed to rule out. In fairness...I think he has a point. She has struggled with anxiety her whole life and I don't think it's a big jump in thinking. Kbutton: OP, I don't remember what language testing you've done, but is there any chance that when she's asked directly, she's "normal" spaced out, or she needs processing time, but when he's asking you stuff, it feels like the process slows, and she can think about it longer? If she's responding quickly and not just adding to what you say, I would think maybe something is off. If you are answering, it's jogging her memory, that could simply be slower processing or lower receptive language--what you are saying could be clarifying the question for her. So...he actually asked her to step out of the room early on so he could point out what he was seeing and wondered if I was aware. I was not. My gut response was to say EXACTLY what you said. She has slow processing speed so I think she is just commenting as it comes to her. But then she came back in and lo and behold she was answering/commenting pretty quickly. Evident that she was more comfortable conversing THROUGH me. I have a good friend that works in this field and has a child with many of these issues and she said - which resonated with me- that she might be in "flight" mode when someone directly speaks to her. Sort of an anxiety trigger from having some language processing struggles. And just a knee jerk reaction to being confused and feeling stupid. That spoke to me given her personality. The blood work requested is: TSH, Creatine, (eGFR), Uric Acid, Sodium, Potassium, Chloride, CK, ALT, Vit B12, Ferritin, Under Hematology - CBC. No idea if any of that includes mitochondria??

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Yeah until recently my dd was hit or miss at movies (and plays etc) but currently she seems to have a better grasp of what kind of day she is having and has opted out of some movie nights (as opposed to getting there and hating it). My guess is that a movie would backfire if her anxiety is already high - our dentist streams netflix over the chair and that makes things worse. I am considering slipping an Ativan into her breakfast - Dr prescribed of course - just to keep that anxiety at bay if/when an MRI is administered.

If you are lucky enough to get to an actual retail location you will love it. They have one demo version of every single game they sell out of the box and encourage you to play with them. The staff will enthusiastically walk you through how to play every game and we stayed for hours. I could have spent a fortune!!

Have you ever been to the store called "Marbles - the brain store" before? I was just in San Fransisco and popped into a retail outlet. There aren't very many locations but you can order online. This store was AMAZING! The games are divided up by what skill they improve: spatial reasoning, verbal memory, processing speed etc. Which made it so easy to narrow down which ones we needed having just had our Psych ed Eval results. The best part is that these are GAMES. Actual fun to play no idea they are helping games. In the past we had tried to "play to learn" but undeniably most kids can tell that they are actually playing a learning game - which some are ok with. But these games have lots of stuff going on outside the learning to keep you motivated and curious and make it fun! Here is the website: http://www.marblesthebrainstore.com/new-arrivals.htm Go to the self improvement tab and you can see games based on different skills.

Ironically last week my good friend's daughter had to have an MRI for her heart and she had the same goggles that play a movie etc. She had a great experience! So fingers crossed!!

Oh wow! So much info to digest! Thanks everyone for your input I will be researching all of this! I do know that there will be blood work drawn because the receptionist mentioned that it would not be happening on the first visit. I assume that appointment is to get the full history and then order tests. My OT says we will know what they are thinking by what tests they order. In terms of having an MRI...there isn't enough "toys" and kindness in the world that will make her tolerate that! LOL! I woudl be SHOCKED. A) she has "medical" anxiety. Due to her SPD she hates being touched. Hates dental visits etc. She will not be on board. B) Also due to SPD she finds things intolerably loud. She wears ear plugs for many things. Having recently had 4 MRI's myself I know she will freak out at the sound. C) She has claustrophobia and will panic at the thought. My nephew was put out for an MRI and I suspect she will also. We have already had discussions about MRI's and I have repeatedly told her I am not asking her to tolerate an MRI but I am asking her to tolerate the procedure required to put her to sleep so that she has no awareness of an MRI. Even that is going to be a struggle!

Thanks! Me to...I swear I am...but I just have this big lump of "GAH!!" in my tummy. We will finally have answers (hopefully) but sometimes ignorant bliss is easier than answers so I have a level of dread going on. Normal I suppose.

Thanks for sharing! i know nothing about CP either. But someone on here mentioned it and when I looked it up it listed the signs and symptoms and they were virtually everything she has every been diagnosed with: difficulty swallowing, consipation, SPD, ADHD, Visual Processing Disorder, CAPD, clumsy, poor balance on and on. It was such and AHA! moment that my gut says it is very likely.

I think we will be getting an MRI but that is because I strongly suspect she has Ataxic Cerebral Palsy and they can see via MRI if there is a lesion on the Cerebellum. She is very flexible due to yoga but I don't think she can bend over and touch her legs well because she has such poor Vestibular / propriocepton. I think she probably bends her knees to stabilize better. The shitty thing about a kid with SPD is that so much of the world bothers them (light, sound, being touched) that they learn to block it out. As a result she isn't really that in touch with what/where it hurts etc. So I don't really trust her feedback. But based on her feedback I would say she does not have that pain & tightness in her hamstrings. She mainly reports heaviness, jello, numb. But again her perception can be skewed. Do you mind sharing what your dd was diagnosed with or what Wapiti went through? I want to be able to ask the right questions and make sure we turn over every stone. Thanks!

LOL! Oh no it's funny!! Like seriously though? What gives kid? LOL Even better when we started discussing vision therapy we discussed with her what it might entail and one of the things we discussed was that some kids wear glasses with different colored tinted lenses. So one lens might be tinted light brown or green. So big thick generic framed glasses with fugly tinted lenses and she was ALL OVER IT!! Excited about them? But ear buds are very very bad! Okaaaayyyyy....

My dd was given an appointment in Oct for a full Neurological workup. Again, only happening because of the stellar advice from this board! In the past 3-4 weeks her legs have been bothering her. They are tired, numb, etc. This is not new to me as I have always witnessed her need to sit a lot. It's clear that she has some low muscle tone etc. But she never complained it was just my observations. But now they are bothering her. She has cried about them (she never cries). She is avoiding playing. She is more "lazy" than usual and says "can you xyz for me because my legs are bugging me". So I called the Neurologist on my OT's advice to see if we can get bumped to the top of the wait list. They called back to say that they will see her THIS TUESDAY! So yay. But it all feels a bit overwhelming at the same time. Turns out we will be getting answers earlier than we thought. Thanks again to all of you who suggested the workup!