Cancel my dd's MRI? Update post #31

[Guest]

OK, let me get this straight, are people saying that she doesn't know her own child enough or that she is not mature enough to know if the SPECIALIST that saw her child knows what he is doing? Wow!

[Kat w]

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.

Aww, I feel for ya mama.

 

Sounds like your family needs a break. Take that break. Hug n love on each other and have a normal life together.

 

After the break, ID recommend tighting up any loose ends.

 

I've done thst too. Had to take breaks. I'm just coming off of one in fact. It's been heaven! Lol

 

I know I have to get back on it tho and it starts in about a week with PROMPT.

 

I did that a few years ago, counted on my calendar how many appts we had been too. It was a ton too.

It's hard, hard on mom, hard on the kids, hard on the family as a unit. It's good to take a break.

 

Just, getting back from that break is where the important part lies.

 

And hard lol :)

 

Please, at some point this year, when hour family is ready , please get that MRI.

 

You need the internal test as well as external. Even if just to be sure.

 

We all wouldn't be sayin it if we didn't care, and have been there.

It's tough, but well worth it .

 

Big big hugs.

Go out to dinner and a movie with hubby!

That helps me :)

Edited August 18, 2016 by Kat w

[Tiramisu]

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!

My DD had sensations for about six years and then started to have pain two years ago when her hips started to loosen up. Her biggest problems have been fatigue and anxiety. It's physiological from the body having less stability.

 

None of my kids seem noticeably flexible. None could ever do a split for example. Yet their loose ligaments allowed my one DD's vertebrae to slip apart. And another's hips and shoulders to slip in and out of the joint without a full dislocation. One simple test is if you gently pull a thumb forward and are able to touch it to the inner wrist forearm area.

 

It's actually a common but overlooked problem that can affect a loudly of body symptoms.

 

If you can't connect the issues, think connective tissues.

 

I'm not saying it's JHS. And that would not have made sense to me in the beginning but over time it became clearer.

[mom22kids]

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.

 

Edited August 18, 2016 by mermaid'smom

[Kat w]

OK, let me get this straight, are people saying that she doesn't know her own child enough or that she is not mature enough to know if the SPECIALIST that saw her child knows what he is doing? Wow!

You make a GREAT point. Really, it's true. We parents know our kids better than anyone.

 

With the symptoms and what *could be* the neuro route, is important to note here.

 

The doc cannot say with any sort of certainty what is going on inside.

 

It's been pointed out on the boards many times, you can go to 3 docs and have 3 different assessments.

 

We do know our kids...better than anyone and mermaid s mom sounds like one if the exceptional parents who really pay attention . which is why she caught this.

 

Knowing your child, does not give us that inside image view if what's goin on inside.

 

I/we only say these things, BC most of us have been where she is.

 

I have, and I know others commenting , have also,...had specialists tell us...ah nah...it's all good 'my external assessment' was adequate. Only to later find something that an MRI turned up that was *the root cause * of what the specialist was tellin us...nah. Youre all good.

 

Not all specialist are created equally. And noone can say for certain ness , what is really going in, without that image.

 

It's hard. It's really hard. Hard for moms too.

But we can't tell what's going on inside.

 

I have so wished before we lived in a time where we had x-ray vision and could see these things fir certain .

But we don't, and we can't.

 

Many/some of us have kids that have neiro issues.

We speak from experience and dealing with specialist.

 

Here's one thing about specialist . they have this....almost 'God like' opinion of themselves. I get it they have alot of school and experience.

 

That does not make them correct 100% of the time. We are all human. Specialist included.

 

And none if us, specialist included can not say with certainty ...what is going on , on the inside.

 

Only the MRI will tell us that. Even then, mri's aren't a 100%. Thy miss things too.

 

So if the mri's miss things...don't we thing even more and specialist do and does miss things?

Of course they do.

 

We come from a place of love and concern and first hand experience .

 

Some of us, things were missed by an over confident specialist.

 

That's all.

And it would be way easier for all of us to abandon this thread and be done.

 

That's where the caring about and concern comes in.

[Kat w]

OK, let me get this straight, are people saying that she doesn't know her own child enough or that she is not mature enough to know if the SPECIALIST that saw her child knows what he is doing? Wow!

You make a GREAT point. Really, it's true. We parents know our kids better than anyone.

 

With the symptoms and what *could be* the neuro route, is important to note here.

 

The doc cannot say with any sort of certainty what is going on inside.

 

It's been pointed out on the boards many times, you can go to 3 docs and have 3 different assessments.

 

We do know our kids...better than anyone and mermaid s mom sounds like one if the exceptional parents who really pay attention . which is why she caught this.

 

Knowing your child, does not give us that inside image view if what's goin on inside.

 

I/we only say these things, BC most of us have been where she is.

 

I have, and I know others commenting , have also,...had specialists tell us...ah nah...it's all good 'my external assessment' was adequate. Only to later find something that an MRI turned up that was *the root cause * of what the specialist was tellin us...nah. Youre all good.

 

Not all specialist are created equally. And noone can say for certain ness , what is really going in, without that image.

 

It's hard. It's really hard. Hard for moms too.

But we can't tell what's going on inside.

 

I have so wished before we lived in a time where we had x-ray vision and could see these things fir certain .

But we don't, and we can't.

 

Many/some of us have kids that have neiro issues.

We speak from experience and dealing with specialist.

 

Here's one thing about specialist . they have this....almost 'God like' opinion of themselves. I get it they have alot of school and experience.

 

That does not make them correct 100% of the time. We are all human. Specialist included.

 

And none if us, specialist included can not say with certainty ...what is going on , on the inside.

 

Only the MRI will tell us that. Even then, mri's aren't a 100%. Thy miss things too.

 

So if the mri's miss things...don't we thing even more and specialist do and does miss things?

Of course they do.

 

We come from a place of love and concern and first hand experience .

 

Some of us, things were missed by an over confident specialist.

 

That's all.

And it would be way easier for all of us to abandon this thread and be done.

 

That's where the caring about and concern comes in.

[mom22kids]

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.

 

[Kat w]

I have a story of a very close friend here, that very simar symptoms surfaced around mermaids moms lil ones age.

 

I don't want to share it BC I don't want to scare mermaids mom.

 

There is a reason 10-13 or so intelligent been there done that moms...are urging her to rule out a nuero issue.

 

Some of the stories haven't been shared, for the very reason I'm not sharing my friends story.

 

We don't want to overly alarm her.

 

But, that specialist made a determination, that no human can determine.

 

Only an image can tell us that, even then...images miss stuff.

 

That's all, we care. We don't want her down the road to be at a place going, omg. I should have ruled it out, now? It's irriversable.

 

Thays what were saying.

We have protected her from specific stories that are on the extreme and horrible end of the spectrum (not autism but nuero speaking).

 

There's a reason, all of these respectable women are saying the same thing.

 

I know mom has anxiety about the MRI.

That's not a good enough reason to not get it done.

 

Like I said, we care. It would be way easier for all of us to walk away and say nothing. That's not what were doing .

 

We are trying to point out, the other side of missing what a simple image would uncover.

 

Yes, she knows her child and well.

 

But, she does not have x-ray vision.

 

Just as you challenged me the other day Canadian mom to read on autism. I wasn't crazy about that. But I needed to hear it and I needed to do it.

 

I listened to your wise words and am reading the link you provided and trying to find others.

 

Just because we don't want to hear it, doesn't mean it isn't good for us, or what we need to hear and more importantly ....do.

Edited August 18, 2016 by Kat w

[mom22kids]

I have a story of a very close friend here, that very simar symptoms surfaced around mermaids moms lil ones age.

 

I don't want to share it BC I don't want to scare mermaids mom.

 

There is a reason 10-13 or so intelligent been there done that moms...are urging her to rule out a nuero issue.

 

Some of the stories haven't been shared, for the very reason I'm not sharing my friends story.

 

We don't want to overly alarm her.

 

But, that specialist made a determination, that no human can determine.

 

Only an image can tell us that, even then...images miss stuff.

 

That's all, we care. We don't want her down the road to be at a place going, omg. I should have ruled it out, now? It's irriversable.

 

Thays what were saying.

We have protected her from specific stories that are on the extreme and horrible end of the spectrum (not autism but nuero speaking).

 

There's a reason, all of these respectable women are saying the same thing.

 

I know mom has anxiety about the MRI.

That's not a good enough reason to not get it done.

 

Like I said, we care. It would be way easier for all of us to walk away and say nothing. That's not what were doing .

 

We are trying to point out, the other side of missing what a simple image would uncover.

 

Yes, she knows her child and well.

 

She does not have x-ray vision.

 

Just as you challenged me the other day Canadian mom to read on autism. I wasn't crazy about that. But I needed to hear it and I needed to do it.

 

I listened to your wise words and am reading the link you provided and trying to find others.

 

Just because we don't want to hear it, doesn't mean it isn't food for us, o what we need to hear and more importantly ....do.

 

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.

 

Edited August 18, 2016 by mermaid'smom

[Kat w]

I see that you're offended. Was never my intent.

 

I won't say another word about it.

 

Its only BC we care and we see things from a more objective lens.

 

Very sorry I have upset you . that was never my intent.

 

I will back off and stay away.

:) best of wishes to you and you're daughter.

[mom22kids]

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?

Edited August 18, 2016 by mermaid'smom

[Kat w]

I supported taking a break.

 

I've been there too. Just on the tail end.

 

I said. Breaks are good, we need them. I know. I get it.

 

There are months I am sure gonna have a nervous breakdown. Really. I get it more than you know.

 

This is tough stuff we deal with.

 

Without breaks, I am quite certain me ans my real life friends would have had a form of a nervous breakdown .

 

I only and others too...wanted you to , when ready, to get an image and rule it out.

 

Thsts all. We deal with the daily reality of nuero issues and see the importance that we caught them sooner rather than later.

 

Later findings...bou...talk about a nervous breakdown . that's the mother of all breakdowns.

 

We don't want tat for you.

 

Noon said don't take a break. I even said...take a break and when your ready...blank.

 

I said...go to dinner n movie w hubby.

 

That's all, we know the realities that we live with day in and day out.

 

We wanted to help another avoid that issue or not let it get too much further down the road.

 

I get it. I have been flat out ticked off at ppl suggesting such things.

 

I realized later ...the wisdom in their words.

[Tiramisu]

Is hypermobility the same thing as low tone?

Like Kat said it's not the same. Tone is neurological and has to do with muscles at rest.

 

Lax connective tissue comes from differences in the stuff that makes it. In the type I'm most familiar with, the collagen is simply weaker. Sometimes they can find a genetic marker for it, but not in the most common type that affects the joints.

 

There are different types of collagen in the different connective tissues of the body: joints, skin, blood vessels, eyes, and the tissues that hold organs in place, including the brain. The GI tract is another area.

 

A person won't usually have weaknesses in all those areas and the joint type is not only the most common but the most benign, not counting the pain people can develop, particularly women whose hormones make them looser anyway.

 

In at least on type of heritable connective tissue disorder, you can have low tone in the very early years. For example, DH was low tone as a baby. I can almost see it in the skull shape, IYKWIM. He didn't walk until 18 months. He has a healthy tone now, but his hands and wrists are dramatically flexible because that's the connective tissue. He has torn ligaments and has lower back and hip pain that he keeps in check by keeping the srrounding muscles strong.

 

Now my brother who is almost fifty and hasn't exercised or stretched since high school is very flexible. He never had tone issues.

 

Because of hormones, men tend not to maintain flexibility so when you find it in a man, it's interesting...at least to geeks like me.

 

Research has confirmed the connection between lax joints and anxiety but newer research is even showing connections with ADHD, ASD, and some psychiatric conditions.

 

It's also significant for dysgraphia because it affects proprioception and makes it harder to stabilize the hand, wrist, shoulder.

[Kat w]

In fact, I was so close to full on break down several months ago, I had to go in an antidepressant .

 

Changed my world.

 

I know honey, I've been there. I get it more than I want too.

 

Live on the MRI side of things, and know way more things than I ever wanted to or care too.

 

Unfortunately , I do know things.

 

How could I sleep at nite or live with myself if I didn't spare another mom and family of the same things by not sharing info I have?

 

I couldn't. That's why me and others pressed.

 

Noone said don't take a break. We know...breaks are essential. We all take them. You have to fir our own mental health.

 

We are no good to ourselves or our kids if we're losing it.

 

After my last round of testing, I lost it.

 

That's when doc out me on cymbalta.

 

I know, I get it. As I said...me and the other moms...get it way more than we ever wanted to .

Edited August 18, 2016 by Kat w

[MomatHWTK]

It's OK to trust your doctors. I've not seen anyone give a reason why you shouldn't other than vague "oooh spooky." 

 

We had extra testing MRI or something for DS because his emotional symptoms were sudden onset (or seemed to be).  I doubt if there would have been any brain scans, seizure study, etc. if I hadn't asked. 

 

It's not as if you aren't going to be on the look out for issues. Worst case scenario, a slow growing tumor is present and a few months won't matter. If it were a fast growing situation, you'd know. KWIM?

Edited August 18, 2016 by MomatHWTK

[Guest]

It's been pointed out on the boards many times, you can go to 3 docs and have 3 different assessments.

Kat, neurological conditions are MEDICAL. The comment you are quoting here has been said about psychological assessments.

[Kat w]

Kat, neurological conditions are MEDICAL. The comment you are quoting here has been said about psychological assessments.

No, it's been said about thst too.

 

I have more experience than I care to with neurologists ...

 

3 diif neuro will in fact often times get you 3 diff opinions

[Kat w]

Kat, neurological conditions are MEDICAL. The comment you are quoting here has been said about psychological assessments.

Canadian mom, I posted today on my Latin post and it's worth repeating here.

 

You are one of the most kind, loving, compassion ate , sweet, warm women I've met, be it real life ir on forums.

 

We need you here. You I believe are a missing element to us.

 

Rho I am a private person, and wouldn't normally do this, I'm going to share a bit of my story and my kids stories ....

[Guest]

I'm confused also! I'm confused and saddened that this mom opened her heart here looking for advice and has now been put in a position to have to explain herself and her decisions, yet people STILL don't get it. Shaking my head.

[Guest]

No, it's been said about thst too.

 

I have more experience than I care to with neurologists ...

 

3 diif neuro will in fact often times get you 3 diff opinions

Well, I'm so glad people on this forum have more expertise than professionals that have spent over a decade specializing in their field! Edited August 18, 2016 by Guest

[Tiramisu]

Maybe this will reassure you if you need any reassurance.

 

My DD with leg issues got a lumbar spine MRI but NOT a brain MRI, nor did the possibility of a brain tumor ever come up with the leg issues. Not once.

 

My other DD who had the "sensations" had a brain and cervical spine MRI to check for MS lesions, no possibility of brain tumor ever was brought up for her either.

 

I will tell you, when that same DD was suspected of having even a benign tumor for very different symptoms, the doctor had her in the MRI machine THE SAME DAY. I don't think doctors take chances with that stuff, especially with kids.

Edited August 18, 2016 by Tiramisu

[mom22kids]

Maybe this will reassure you if you need any reassurance.

 

My DD with leg issues got a lumbar spine MRI but NOT a brain MRI, nor did the possibility of a brain tumor ever come up with the leg issues. Not once.

 

My other DD who had the "sensations" had a brain and cervical spine MRI to check for MS lesions, no possibility of brain tumor ever was brought up for her either.

 

I will tell you, when that same DD was suspected of having even a benign tumor for very different symptoms, the doctor had her in the MRI machine THE SAME DAY. I don't think doctors take chances with that stuff, especially with kids.

 

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

[Guest]

Kat, I appreciate your kind words. It's because I care that I speak up, often at a risk of being ostracized.

[mom22kids]

I think I am getting a better idea of what is happening here and I am becoming less confused.

 

Kat W - based on what you are saying here now - I understand that your concern is a knee-jerk reaction to your own situation and not mine.  I get that.  I am not entirely certain of the entirety of the situation you are in - partly because I am new here and partly because I suck at remembering details - but I can imagine that some of the things you have experienced have been traumatic for you and that you might have some lingering unresolved issues about that.

 

I can appreciate that you wish you had caught things sooner and perhaps that regret has clouded your perception of my situation.

 

Thank you for doing your best to inform me of how hindsight is 20/20 and that only medical tests can definitively rule out the possibilities.  I do appreciate that you believe you have my best interest at heart.

 

At *this* point in time we are going to see how all the new changes play out (glasses, FM system) and keep an eye on anything concerning.  I am also going to FINALLY start taking seriously the concept that my child could be actually gifted with exception and see if that info changes things for her.  Again this is something that I have heard repeatedly buy was not in line with my perception of gifted.  I can see that I need to educate myself on how complicated gifted can be.

 

 

[Kat w]

I've had 3 back/spinal surgeries. Over the course of 20 years.

 

I go monthly to a nuero specialist.

 

I have spondyolosis , scoliosis, kerstosis as well as many another cavk and spinal issues.

 

From the original back surgery at L5-s1 20 years ago...the scar tissue is slowly closing off the canal to my organs.

 

I have benign (so far) tumors on my kidneys, bladder, a narrowed uerethra thst has caused kidney disease . ...now, all this falls in line with the neurologists and neurosurgeon .

 

I am slowly losing feeling and use of my limbs.

 

The neurosurgeon told me 20 years ago that the scar tissue would be my enemy and lasering it only makes it worse in the end BC it builds in attempt to 'heal itself'

 

I need surgery at the top o my spine. I have disc degeneration from top to bottom.

 

This is why I have so many typos. I live in backspace hell.

 

The damage done is irriversable and will only get worse.

 

The estimated time for me to be in a wheelchair is 5-8 years based on its latest progression.

 

Thebln the top...I will lose loss of the arms too...that puts me eventually in a motorized wheel chair and who knows. Maybe a trache.

 

My boys (adopted) were born drug addicted and with fas.

 

To simply say...drug addicted. Most ppl don't know what that entails.

 

The neiro pathways to the brain are all amiss and most not able to be corrected thru therapies.

 

My DS 12 is under the care of a pediatric neurologist. My youngest is under the care if a diff Pediatric nuero.

The boys seebtheor neurologist 4 times a year. I go monthly.

 

I have been through 23 diff neuros to include neurosurgeon s between the 3 of us.

 

We have gotten VERY different Dx, tests, and long-term prognosis by many diff docs who are leaders in their feild.

 

We've traveled to them. Seen them locally...we have no problem changing docs and obviously, have.

 

I am not the only mom on the board who says....you can see 3 diff docs and get 3 diff opinions.

 

REALL, alot if not most when they day that ARE IN FACT referring to a nuero.

 

Unfortunately myself and other moms on the LC board, have more experience and been through more neurologist than we would ever want to.

 

We aren't referring to...phsycoligist most times.

 

We moms deal with tough stuff here.

Ita not our first rodeo...now....do we need to be told...what doc to which we refer.

 

We KNOW neurologist... We've been in the children's hospital s and getting second, third and forth opinions. From....NUEROLOGISTS AND /OR NUEROSUGEOONS .

 

So please. Don't tell me...to which docs we refer . don't tell me to which doc I refer.

 

There are more money Ms on this board that deal with nuerologists, than don't.

 

So yes...

 

When we say...3 different docs...we MEAN neurologists.

 

We figure, when we say that....that's implied BC that's what mermaids moms dealing with.

 

Trust me. We fully understand the difference in a neurologist , a neurosurgeon , vs. A mere phsycoligist.

 

Canadians may think we amareicans have no idea what were talking about when it comes to medical care BC you all have a socialist health care system.

 

We amareicans understand, when you take capitalism out of the equation , therefore reducing /eliminating competition, your health care providers education, furthering education , and quality all decline.

 

Just BC you have *access* to *free* healthcare....does not a good doctor make.

 

They can get by with doing sloppy work. Sloppy cavelier dismissive evals and DX.

 

IMO, mermaids mom was done a disservice by not a complete picture of what's going on.

 

I do not mean to slam your health care system.

 

But, you 'told' me I basically didn't know what I was talking about.

 

I have had message convos with some of these women. I know their struggles and what KIND OF doc they've seen.

 

So yes, when they say doc?

They mean neuro.

Again, it's implied.

[mom22kids]

It's OK to trust your doctors. I've not seen anyone give a reason why you shouldn't other than vague "oooh spooky." 

 

We had extra testing MRI or something for DS because his emotional symptoms were sudden onset (or seemed to be).  I doubt if there would have been any brain scans, seizure study, etc. if I hadn't asked. 

 

It's not as if you aren't going to be on the look out for issues. Worst case scenario, a slow growing tumor is present and a few months won't matter. If it were a fast growing situation, you'd know. KWIM?

 

Thanks!  Agree completely.  I feel really comfortable with the fact that his thoughts were in line with what we have heard from others. 

[Kat w]

PS. I broke my back 20 years ago as well as my tail bone....dint telle...you won't get 3 different assessments from 3 different neurologists and neurosurgeon s...cuz...I HAVE.

 

Over and over and over again.

As each next issue stemming from broken back and back surgeries.

 

Yea....they DO.

[Kat w]

No mermaidss mom...I also have a CP kid...it's not a knee jerk reaction . I read and followed your post long before I commented.

 

I've had nureos and diff ones with 3 of my kids over 25 years.

 

That is far from a knee jerk reaction.

[mom22kids]

Kat w that was very courageous of  you to share your story and be vulnerable like that.  Thank you.

[mom22kids]

No mermaidss mom...I also have a CP kid...it's not a knee jerk reaction . I read and followed your post long before I commented.

 

I've had nureos and diff ones with 3 of my kids over 25 years.

 

That is far from a knee jerk reaction.

 

Fair enough.  Can you specifically relate to me what I have said about dd that concerns you?  Specifics?  Things that I have discussed that don't seem "explained away" to you by all that she has going on?

[Kat w]

Well, I'm so glad people on this forum have more expertise than professionals that have spent over a decade specializing in their field!

Ha! Oh how all of us wish...we had zero experience with it.

 

We took the time to comment...to follow your story...to put time and thought into it...

Trust me all of us have other things to do.

 

I told you. I won't comment on another thing.

 

Not like you want it anyway

[Kat w]

Fair enough. Can you specifically relate to me what I have said about dd that concerns you? Specifics? Things that I have discussed that don't seem "explained away" to you by all that she has going on?

The passive aggressive Ness dies not help.

 

I am no specialist.

 

But, we know enough to know, when it's time to bring one in and get a second or third opinion.

 

I mean, did you even take the time to READ my story? I read yours and carefully pondered it before I commented.

 

I have 3 kids who soent their entire life under the care if a neuro. We don't want that life.

 

I have been under the care for over 20 years. Think I want this life?? Think I want the experience??

 

No! None of us do...

Don't shoot the messenger .

[Kat w]

...and...I'm done. Not commenting at all on any of your stuff.

 

Don't like our advice???

Don't ask

[mom22kids]

Kat w - Canadians may think we amareicans have no idea what were talking about when it comes to medical care BC you all have a socialist health care system.

 

I want to clarify before it gets further misconstrued that any comparisons I have ever drawn between US and Canadain medical care was only to highlight that we are not restricted from access to testing because of red tape, insurance, funding, access to services or cutbacks.  We are fortunate enough to just be able to request these services and often get what we want.  My family dr put up a bigger fight to keep my dd off ADHD meds than she did giving me access to a Neurologist and MRI's.

 

When we ask for services not much else comes into play other than does the situation warrant it?  If there is any sort of gray area they just go ahead and check for the sake of it. 

[mom22kids]

The passive aggressive Ness dies not help.

 

I am no specialist.

 

But, we know enough to know, when it's time to bring one in and get a second or third opinion.

 

I mean, did you even take the time to READ my story? I read yours and carefully pondered it before I commented.

 

I have 3 kids who soent their entire life under the care if a neuro. We don't want that life.

 

I have been under the care for over 20 years. Think I want this life?? Think I want the experience??

 

No! None of us do...

Don't shoot the messenger .

 

You know what I have tried REALLY hard to choose my words in a way that conveys my sincerity.  It is YOU that keeps copping an attitude about what I am saying.  Unbelievable that I am seriously just trying to get your feedback on my situation. the specifics of what concerns you and you call me passive aggressive?!? 

 

Done.

 

[mom22kids]

Ha! Oh how all of us wish...we had zero experience with it.

 

We took the time to comment...to follow your story...to put time and thought into it...

Trust me all of us have other things to do.

 

I told you. I won't comment on another thing.

 

Not like you want it anyway

And this wasn't even my comment!!

[Guest]

Kat, never did I say, you don't know what you are talking about. I also did not criticize your Healthcare system. I think you took my words and made assumptions that were not intended on my part. I truly feel for what you are going through! I have lived in 3 different continents, 4 different countries. I have dealt with many doctors from different medical fields and have come to one conclusion. The Healthcare system does not make the doctor. The person makes the doctor.

[Guest]

And this wasn't even my comment!!

Yes, this was confusing to me as well. I didn't know who it was meant for!

[Kat w]

I don't know what you're referring to that wasn't your comment.

 

Doesn't really matter .

 

The medical system differences , doesn't much matter either.

 

Point is and the one I tried to make eas the that 10ish or so smart cookie with loads on never wanted experience tried to help and have you basically the same advice.

 

If you do t want it (maybe that's the one you're referring too) than don't ask.

 

When you ask for advise, and it's advise you don't want.

Then turn around and you and Canadian mom get upset about it or basically say...enough.

 

If it's enough, stop commenting . that's what I do.

 

I get advise all the time I don't want.

 

Canadian mom I get it and think its vwry cimmendable of you to defend your friend. I'd do it too.

 

My intent was to help not hurt. Things get misswd by the professionals all the time. Countless times.

 

I was gonna be out. But I wanted to respond to mermaids mom. BC it matterrdd to me.

 

Thank you mermaids mom for the kid words a little upthread.

 

 

Hope both you ladies have a good nite and sorry my emotions ran high.

Take care

Edited August 18, 2016 by Kat w

[Guest]

Kat, Mermaid'smom and I met on this board recently, when I started posting again.

 

As for staying away from the LC boards, unless you have another personal reason, I for one never intended for that to happen. And even though I can only speak for myself, I am pretty certain Mermaid'smom did not intend for you to feel that way either. So, please do NOT stop posting on my account. As moms of SN kids, I would hope to see us supporting each other, not feeling ostracized, or misunderstood, or other ill feelings. We don't need that! I think we already all have enough to deal with.

 

Take care of yourself and have a good night :-)

Edited August 18, 2016 by Guest

[Guest]

Also, note, it was the unjustified pressuring, not the comments or experiences shared, that were the issue. It's one thing to share an experience, quite another to insist that your (referring to anyone, not you specifically) experience with your child(ren) will be the same as someone elses.

Edited August 18, 2016 by Guest

[Heathermomster]

OP, please don't be upset.  You don't need our approval at all; however, I'm glad that you were able to cancel the appt.  It's great that your DD flew through the recent testing, and I sincerely hope for you and your DD that the question of MRI never comes up again the rest of a long and fruitful life.

 

When my DD had her MRI, the wait was maybe 3-4 days, not 3-4 months, so I think that MomatHWTK made an excellent point.  If the attending physician saw a serious need, the MRI would have been planned sooner.  I don't understand the Canadian medical system.  Would they push someone back that was already on the MRI waiting list and get this child in quickly if the need was high?  IDK.  

 

I hate radiology and sedation.  If I think too long on the subject WRT my DD, I would collapse into a heap on the floor and not sleep for the next three nights, which is unacceptable as I am the hinge pin of my little family organization.  I love my children and they need me.

 

If I had a $1 for every time I read a response that did not jive with mine, I would be rich and offended morning, noon, and night.  We don't have to agree with one another, and it's ridiculous to assume we know the OP's situation.  Opinions differ and we need to respect that.  I'm not engaging this thread anymore.  Watch me exit stage left.....

 

 

 

Edited August 18, 2016 by Heathermomster

[Guest]

deleted for privacy

Edited August 12, 2017 by Guest

[mom22kids]

Thanks everyone. Kat w I am hoping you don't leave.  You have an amazing story and clearly more strength and resiliency than most of us will ever need to find.  Your voice is valuable here.

 

Sorry if I came across frustrated.  It just felt like the same cycle of KNOWING your child has an issue and no one believes you but in reverse. 

 

Heathermonster - I think in Canada there is slots left open for emergencies.  So when I was having multiple breast MRI's (which ended up with me having nothing) they always got me in immediately and once on the phone the lady said "We still haven't filled our 11:am emergency slot -it's not likely we will now - can you come in then?". Same with this Neuro when I called to see if I could get bumped to the top of the waiting list because of my concerns she said "let me talk to the Dr and see if your situation warrants giving you an emergency slot".  So I don't think people get bumped often.  But I am sure that it probably does happen.  My brother in law had to get an MRI on his ankle - nothing serious - I'm sure he ran the risk of getting bumped.

 

Anyway...I think nothing more needs to be added to this thread.  I appreciate all the feedback :)

[Kat w]

Thanks for the kind words mermaids mom.

 

It has been tough. The everyday that I'm left with is even tougher.

Your right, sharing my story wasn't easier. It was only because of my soft spot and fondness thst I have for you and Canadian mom that I shared.

Yes, I know other will read and that's OK. It was to you and Canadian mom thst I fel I could open up to. You 2 have a sweetness that we greatly need here. I really appreciate it.

 

MH emotions ran high. I have alot going on in my personal life.

 

Found out only days ago that my my grandbabys brain is shrinking.

Begged my daughter to get an MRI, so I suppose as I ponder further, you had a point in, things I've experienced played a role in it.

 

My granddaughter s brain in utero was too small and my daughter refused the MRI for 4 years when the docs said she needed it.

 

Now she finally went. And her brain is shrinking . she and I are devastated.

Sure dads not happy, but he doesn't get it all so he is in avoidance.

 

She was also told what mg daughter and I knew, but also stuck her head in the sand for 3 years. Now shea one doc appt away from am ASD DX.

 

Ahe wasted time for early intervention .

I do here at my house what I can, what I learned with the boys.

I have her around 3-5 days a week. Mom is a paramedic and dads a cop. They work goofy hours. So I keep her overnite.

 

The last doc appt....still typing have to post. On an old slow phone

[Kat w]

The last doc appt my daughter had, they arranged to get her into an early intervention program.

 

It's 3 hours a day 5 days a week.

 

My boys went 6and half hours a day. But 3 hours is way better than the nothing hours lol...that she didn't have before.

 

It's devastated us all. My daughter is a wreck and beating herself up BC she didn't /couldn't bring herself to act quicker.

 

The shrinking.if the brain, BC I didn't go to the doc appt cuz her hubby was wanting it just them when my daughter was telling him she needed her mom (this is my CP kid 26) and thst her mom would know what questions to ask,....now he sees , oh boy, this is bad.

So she made another appt to ask questions and figure out what we can do.

 

I am (now thst I write this) hoping geodob will chime in and offer some advise.

 

I had her for 5 days after my daughter found out, grandbaby being autistic has that keen sense (they have stregnths in other areas BC they lack in so many).

 

Grandbaby knows somethings wrong, she can sense it and all the tests.

She was sort of a wreck too. Cried alot, was unsettled. Nightmares.

 

My daughter called and asked if we could have dinner tonight just she and I.

 

My lil CP kids, has always turned to mama when things get tough . we went thru CP together, she remembers me being in er face in PT when she'd fall Learning to walk again after full leg casts longterm stretching the ligaments and tendons...in her face telling her...she can do this. Get back uo, finish on a positive note.

 

She knows, she wouldn't be where she is if it weren't for the mama she has (her words ).

 

Was and is hard. Even harder now with the grandbaby.

 

I help homeschool and watch her 3-5days a week . I've begged my daughter to slow ber schedule down.

 

She's also premed.

 

She sees now. She should have. He baby needs her like she needed me.

 

She's living with the guilt of it.

 

The shrinking brain has all of us completely devastated. Way more than the autistic DX.

 

What are the odds and how much can one family go thru.

It's shocking hubby and I are still married lol.

And we actually like each other and wanna stay married haha :) ( humor helps)

 

So. I just didn't want the same regret for you. I know it was alot with so many ppl saying the same thing.

 

I care about you, I've followed your story everytime you post even if I don't comment.

 

I think your brave and iys obvious how much you love your daughter.

 

I have been praying for you and guidance and wisdom in the situation.

 

I think the warmth, and loving kindness that both you and Canadians mom bring here to the board is precious :)

 

And needed.

I have a soft spot for you mermaids mom. Following your story and seeing the things I mentioned above...I'm glad you're here.

 

You and Canadians mom.

 

I just might stay.

Been hard for me. Struggled with it only recently.

Like I said tho, the kindness from you guys...

Kindness begets kindness :)

 

Thanks a bunch fir listening.

 

This is a thread I bet your happy is derailed huh? Lol.

 

Thanks a bunch guys.

 

I'm glad I know you both :)

[mom22kids]

Kat w - You are the sweetest thing ever!  The fact that in the face of all your pain and struggles you take the time to come here and help others and say such kind encouraging words makes you a very special asset to this board and I am touched that you have taken the time to read my story and offer your opinions.  Opinions that I value - which is probably why I wanted you on board with my good news so bad! LOL

 

Hugs to you and your beautiful family!  Nothing but peace and love here for you!  Keep us posted on your grandbaby!

 

 

[Crimson Wife]

OK, let me get this straight, are people saying that she doesn't know her own child enough or that she is not mature enough to know if the SPECIALIST that saw her child knows what he is doing? Wow!

 

The OP is not a physician and the specialist is claiming to be "100% confident" without doing a full eval. He cannot know for certain that there isn't a neurological issue without some sort of imaging, either MRI or CT scan. He can say that it's unlikely to be a neurological issue based on the external tests and symptoms, but he's cannot rule it out until he gets imaging results.

 

[Crimson Wife]

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.

 

Saying this gently, but no, you haven't. Not until you get the results of the MRI. That neurologist could very well be giving you a false sense of security. I'm sorry that this is anxiety-provoking but you really have no idea what is "imaginary" and what is real until you have the FULL eval. And that does include not just external tests but also the imaging.

[TranquilMind]

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.

 

Goodness.