Well now things are really going to start to get interesting...

[mom22kids]

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!

[Tiramisu]

Ok. BTDT. Slightly different symptoms.

 

I think you'd want an MRI of the lumbar spine.

 

Wapiti, another friend here, has also been through something like that.

 

My DD had pain and tightness in her hamstrings. Any of that? Can she bend over and touch her toes while keeping her legs reasonably straight?

[mom22kids]

Ok. BTDT. Slightly different symptoms.

 

I think you'd want an MRI of the lumbar spine.

 

Wapiti, another friend here, has also been through something like that.

 

My DD had pain and tightness in her hamstrings. Any of that? Can she bend over and touch her toes while keeping her legs reasonably straight?

 

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!

[Tiramisu]

My DD had spondylolisthesis. That means her vertebra slipped forward. Wapiti's DS had a tethered cord, I think.

 

I know nothing about cp but could come cause the leg thing?

Edited July 29, 2016 by Tiramisu

[mom22kids]

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.

[PeterPan]

Glad they're getting you in!!

[mom22kids]

Glad they're getting you in!!

 

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. 

[kbutton]

Keep us posted. 

[PeterPan]

Oh don't worry, if you don't really want answers it might work out that way.  Nothing like it taking 3 neurologists (or psychologists or whatever "professional"-ogist)  to do what should have been done by the first.  (snort)

 

But for you, we're hopeful you get what you want!   :thumbup1:

 

Me, I tend to find that whatever I'm thinking is *sorta* on track but maybe missing a dimension.  That's where it gets interesting. 

Edited July 30, 2016 by OhElizabeth

[PeterPan]

Ever thought about asking for a referral to a geneticist?  I mean, when your list gets pretty funky, that would be a reasonable move.  Or at least a way to consider. You're finally getting enough evals and diagnoses that maybe they could piece together the dots.

Edited July 30, 2016 by OhElizabeth

[Tiramisu]

Ever thought about asking for a referral to a geneticist? I mean, when your list gets pretty funky, that would be a reasonable move. Or at least a way to consider. You're finally getting enough evals and diagnoses that maybe they could piece together the dots.

Neurologists can order some genetic tests.

 

Have you noticed I'm trying to be very good and not ask about joints?

[Kat w]

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!

My oldest has what they call mild cerebel palsy. I don't know how mild it can be.

 

When I first started reading your post, lightbulbs went off.

Flashbacks. Glad your getting an MRI.

 

I'm not sure how old your DC is, but ours was noticeable very early in life. Like what you said, " suspected " . I didn't know what I suspected, but I could see...something .

 

The pediatrician referred us early in life for an MRI.

 

Cerebel palsy is easily missed our pediatrician told us.

When he first said it, I about fell on the floor. I was devastated.

 

But, we did what we had to do and now she is doing very well. She's pursuing big dreams in college and career and personal life and making happen.

 

Of my 3 big kids, she had the hardest time, biggest struggles ( of those 3, every family is different) ...and now? Is the most successful if them all.

 

She learned , we learned , to push hard and overcome . served her well. She goes gangbusters now , and makes everything happen that she wants to.

 

We went through some hard times with casts and braces and therapies , made all the difference in the world.

 

Just wanted to encourage you on that. :)

 

She turned what to some, at times, may seem like lemons, into lemodade! :)

 

Ahe thinks now that she is where she is in life...BECAUSE of the CP.

 

Good your getting DC in. Good catch mama :)

[Kat w]

Forgot important part:

 

Today you would NEVER know. She runs marathons, workout like a banchee lol, is a paramedic , and premed.

 

She's married and has a baby. Well, 4 yo. Still a baby to Grandma :)

 

Physically, through braces, series of castings, and various therapies, worked out all the kinks :)

Except ....her fingers are too short . she hates that but, figures eh, if that's all I have...I'm doin pretty good :)

Edited July 30, 2016 by Kat w

[Kat w]

I just scanned some of the comments and questions ....CP definitely affects legs.

 

For us and it manifests in different ways in different kids.

 

Legs : tendons and ligaments too short. Reauired series if castings to stretch them.

 

Our big red flags was....she wasn't just a toe Walker.....she was physically incapable of coming down on her flat feet. (Achelise "heel" tendon was way too short.

( she...REALLY ...STRONGLY dislikes that term. The achelies heel)

 

Legs were similar to what you described . that was were the braces came in.

 

Fingers too short.

 

Speech problems. Tongue was too short! That one slayed me. They offered as a course of treatment to clip her tongue ( that's where they clip it underneath freeing up the tongue to be able to move long enough to make the sounds of the words. We opted not to do that . we just did speech most of her life. And by the time that was offered as a course if treatment , she was like...6 or 7 or so and ahe herself was wiggin. Totally didn't want it. We let her have input and express thoughts and desires in her treatment plan.

 

I mean. She had to live with it forever . but we had ultimate veto power as parents making sound judgements.

 

I forgot too, her ...oh man. At a loss for words...tired..been long day with HFA/ADHD off his med. ...

Arches! Lol...her arches collapsed from the tie walking. ( ironically she walked early, which the ped. Said was good BC we could catch it quicker) but...her feet turn in on the sides. The front ( ties slightly turned in ) was fixed with braces as she grew.

She dies have to wear sirta special shoes. More major suppliers carry them now and can be easily fitted and ordered in the store.

 

It's good your catching it as she's growing. The braces manipulated her bone growth and ligaments and tendons to go ~mostly~ where they should be.

 

Hasn't stopped her though . these little ones amaze me how resilient they are.

 

AND .....things have come a long way. My DD is 26 now. Symptoms started when she walked and walked at 10 mo.

 

 

Gosh ...I'm old lol

Edited July 30, 2016 by Kat w

[PeterPan]

Kat, does your county developmental disabilities board have some kind of funding for respite care?   When we're having days like that, sometimes a fresh infusion of energy helps.

Edited July 30, 2016 by OhElizabeth

[geodob]

What you describe, could be a type of 'Peripheral Neuropathy'?

Where one cause of this, can be a B12 deficiency.

A deficiency can be identified with a simple blood test.

It would be worth requesting this test, to rule it in or out.

 

 

[Kat w]

Kat, does your county developmental disabilities board have some kind of funding for respite care? When we're having days like that, sometimes a fresh infusion of energy helps.

Respit care, I never thought of that. Wow. They just may.

 

Thanks OhE, I'm going to call and check on that.

Oh it sounds like heaven haha :)

 

I've at times had one if the girls my ds20 knows come in and be with them, play games, puzzles, but she is 20 now too and engaged so on and so forth. So she's busier.

 

Monday IM CALLING :)

Thanks. Never even occurred to me there would be something like that.

Wow. Thst would be such a huge help. Dh travels with work too.

Gets a little hairy here some days :/

 

OhE, you are such a gem :) and informed. Thanks a bunch.

Edited July 30, 2016 by Kat w

[kbutton]

What you describe, could be a type of 'Peripheral Neuropathy'?

Where one cause of this, can be a B12 deficiency.

A deficiency can be identified with a simple blood test.

It would be worth requesting this test, to rule it in or out.

 

I have a family member with unexplained neuropathy who had it respond to magnesium but not B12. I don't know if they can test for magnesium, and I am not sure why she was taking the mag. It was a pleasant surprise to have the neuropathy start calming down.

[wapiti]

.

Edited September 15, 2016 by wapiti

[Kat w]

What you describe, could be a type of 'Peripheral Neuropathy'?

Where one cause of this, can be a B12 deficiency.

A deficiency can be identified with a simple blood test.

It would be worth requesting this test, to rule it in or out.

That's true. Could be a variety of things. Sorry if I jumped the CP gun. I only mentioned it BC oo ( mom) mentioned it, and our experience with it.

 

It really could be anything. An MRI though really if the best idea to pursue first (IMO) and with our experiences. 2 of my kids have greatly benefited from them.

 

I was so hesitant to do that. Might seem a little scary and to *say* MRI is all fine and good. The reality can get a lil scary as it's unfolding. Probably more fir moms though.

 

I would recommend going to the best children's hospital you have available . it was fun for my daughter . THEY made it fun.

 

Both kids played games first , lots of bright pretty murials, cool ceiling tiles that are fun.

 

Then, they took us back. They ease the kids , at least they do at our big children's hospital, room to room of discovery . each bedroom had very cool stuff to distract them and make it fun.

 

We went with open mri's. I don't even know I our children s hospital had anything but open.

 

The play music on headphones that they started them with in the first room, listening ir gaming to anything the child chose.

So that was carried over into the MRI machine.

 

Very easy transition s. And familiarity from the start of it.

 

If the child is hesitant, they back uo and can chose which very cool fun room they want to go in for awhile, until they feel more ready. It's a day or half day process for us here.

 

The most anxiety ridden person was mom ! (Me) lol

While I was dying inside I didn't show it and stayed happy positive and fun...oh cool, look at this , kind if thing to help integrate them.

 

My ds 12 , they ~tried~ an MRI at age 2. Didn't happen. So, we just went back another day. He has anxiety issues. So they reccomened we come, "play" in the rooms on days that we could so it was familiar, fun, got used to the staff, who were awesome BTW. And, we finally got there.

 

I say all this to stress what a difference a children's hospital, esp a good one,

[mom22kids]

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!

[Kat w]

Yea....mri's. Tough stuff.

 

When my little guy was 2 , took ALOT to get there.

He has the SPD, anxiety, and I didn't know it then, but is claustrophobic too.

 

First one I think we had 3 failed attempts, 2 or 3.

We just kept going and playing, not even attempting one. He got familiar enough and felt cozy enough to try....then came the 'tries'lol.

 

I never thought he'd get there.

They headphones and like you said a , pretending to be asleep approach, Ours was Disney lol.

 

It's tough, eap for our kids who have all the sensory and anxiety .

 

I'll be praying for you guys and the wisdom for the best route. :)

Big hugs

[Tiramisu]

When my DD had an MRI at a children's hospital she was able to watch a movie during it with special headphones and goggles.

[mom22kids]

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!!

[Tiramisu]

Maybe the movie goggles and a mild tranquizer if you have a doctor to work with on that.

[Kat w]

We had to,when he was older, do a child anxiety med to do it.

 

He didn't like the movie thing, that's just his preference. He just wanted the headphones and dark/dimmed goggles. ( cut down on light).

 

But come to think of it , he's still afraid of movie theaters today . we had gone to our first movie with him and he WIGGED. He just couldn't deal. Bolted out...screamed and ultimate meltdown . so...hey. That's probably why.

 

I'd love a movie when I'm having one !!! Lol

 

Our pediatrician prescribed ours. Just a couple, we took one before we left, one when we got there.

 

I forgot about that. The last one he had, we are now on intuniv so, definitely helped.

Edited August 2, 2016 by Kat w

[mom22kids]

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.

 

 

[Tiramisu]

About the movie thing, I have one child who has always become freaked out at movies. It took me many years to figure it out and now I am sure it is a problem with sensory processing, including visual and auditory. She does not have an ASD label but when she has watched simulations of autistic processing, she relates, especially when it comes to movies. She actually loves movies but the theater can be an intense experience for her. Even grown now, she will go to a movie with people she's very comfortable with but she will often have to leave the theater to go to the bathroom for a break.