MRI of the brain - LONG STORY but need advice

[fourcatmom]

Hello,

 

I have not been on the special needs board to much but my dd has had a lot of different needs since she was born and we are trying to get re-tested for a learning disorder through our school district.

 

A few months ago she started complaining that she felt that something was wrong with her. Her hands really cramp up when she writes and the physical writing is very hard for her. She does not do well with spelling and her handwriting is pretty poor. She does often read words incorrectly. She makes words and letters backwards and some from the wrong direction. Even her check marks are backwards. She often has a hard time explaining herself. She has to think before she writes, even it it's one letter. She will tell you something is a D but it's a B, things like that. She does love to read and she does love to write. She is very creative. The other thing she does is when she writes a story, she has to look for pictures on the computer to match with what she is writing. So if she is writing about a willow tree, for example she would need to find a picture of a willow tree to have in her head before she could move on. I have always felt that she had a sensory disorder, always touching things, walking to close to people and that sort of thing.

 

Since she was concerned, we went back to the pediatrician and asked for another evaluation. She sent us to a neurologist. He was concerned about lack of coordination and wants to do an MRI of her brain. (I am finally at the point of my question). When I asked why, he really only stated lack of coordination as the chief issue although I am sure her birth history warrants it as well. He encouraged us to go to the school district for a learning disorder evaluation. My dd doesn't want to do the MRI, she is not afraid of the test but she doesn't want to know if anything is wrong. She wants to know if she is dyslexic but nothing else. The school district wants us to pursue the medical recommendation before they agree to testing. I am not sure the MRI is going to show anything that will help us determine how to proceed with her education. I am worried about her level of anxiety and what she will think of herself if something does come back. It still wont help us determine if she does have a learning disorder. Also, her lack of coordination isn't that bad as she plays soccer, indoor soccer and softball and gets along fine. She does have issue with fine motor though and she always has.

 

I know it's my choice whether we do the test but I do worry about her emotional health just as much. She has come a long way and we have accomplished many things. I am just not convinced that doing the MRI will produce anything good. I know that she is wired differently, I am sure it's due to her birth. It doesn't change for me who she is or how I proceed. I make accommodations as I see fit. I know it could affect her school later on. I really don't want to add something like depression to the mix because of a test or a label. Now if these things were new and she was just starting to experience them then I would do it but given these issue have been present since birth I am inclined to think that this is just the way God wanted her to be and it's not something more serious.

 

What would you do? I am sorry this is so long but I feel like I just need to put this on the table and get some good advice and make a decision.

 

Thanks if you made it all this way!

Edited April 22, 2012 by fourcatmom
privacy

[MomatHWTK]

We had an MRI done to rule out tumors simply because some of DS' symptoms were really rapid onset. We also had an EEG (I think) to rule out seizures and blood draws to check for any imbalances. I wanted to make sure we checked for both mental and physical causes of DS' difficulties. (But I'm an anxious person and wanted to cover all the bases.)

[courtney.byrum]

No answers on whether to do the MRI or not but I don't believe the school district can deny testing if it is requested - especially as their is a reason you want it done (suspected dyslexia) that would really affect schooling.

 

The neurologist suspects my dd has a lesion in her brain due to birth (29 weeks). She had no known bleeds after birth but it is suspected due to one sided low muscle tone among other things. We opted not to have her tested at the time - 2 if I recall correctly - as it wouldn't affect anything at the time so the risks of anesthesia were not worth the benefits. At 6 if we felt it might be of a benefit to know we would do the MRI but at this point we see no benefit. I'm sure at some point we will do it just so we know (maybe sooner so we don't run into the same fears from her about knowing that you are having). She has also had a major fall on her head as a toddler(she had a CT scan after that one) and a good whack to her head from a soccer ball recently so it may be good to do soon I guess.

 

I do think I would have a hard time pushing getting the MRI done if she was against it.

[amo_mea_filiis.]

The first thing that stands out me is you said she could not do milk, but was on pediasure. Pediasure is milk based and will cause problems in someone who cannot tolerate milk. I would remove all dairy from herd diet.

 

I would do the mri. It is loud, but you can stay inthe room with her. It could give you a lot of information. You could present to her in a way that is different than her thinking something is wrong with her. The brain can make new connections, so if you knew that x part of the brain was damaged or underdeveloped, you could work on ways to create new connections for tasks (like fine motor skills).

 

The school district must evaluate within a certain timeframe. Send a certified letter requesting the evaluation and the clock starts ticking, and the district knows this.

[MomatHWTK]

Oops, I think what we had was just a CT scan. Sorry. It was the short procedure w/ no anesthesia.

[mamakimberly]

Definitely get the MRI. Knowledge is power and you just don't know what it will show.

[Ottakee]

I would do the MRI. It is loud and if she has a problem with that, they can give her something to relax her or even sedate her. Our local Children's hospital has video goggles so my kids watch a movie of their choosing during the MRI and don't mind it at all.

 

You might get some answers and if there is something MEDICALLY found then therapy is much more likely to be covered by your health insurance than if it is just an LD which is an educational diagnosis.

[fourcatmom]

Thank you everyone for the advice. It sounds like the majority feel its better to go ahead with it. I actually want to do it since I have always "wondered" but I just fear that the price is going to be greater then the information. I have been very positive with her about it but at 11 I feel that I should listen to her feelings and just wanted to make an educated decision.

 

Again, thanks for letting me share and I appreciate all the info.

 

And, thanks for the info about the letter.

[wapiti]

My sense would be the same as yours, that the MRI would be unlikely to tell you anything useful. If insurance would pay for it, and if the school really insists on having this medical avenue explored, then I might do it. However, I'm not sure that even makes sense - they should do the eval for LDs *anyway*, regardless of whether some sort of injury was evident from the MRI. I would not want the PS saying well, the MRI shows this injury, so that's obviously the cause of the symptoms and there's no need to test further - no.

 

The headaches are the only thing you have mentioned that seem to point toward getting an MRI. If the cost isn't an issue, and you can convince your dd to deal with it, then I suppose it makes sense to go ahead and do it, though I would not be optimistic that it'll provide much useful info.

 

I'd feel much more confident with a private neuropsych eval rather than a PS eval, though obviously that comes at a price. If I had to choose between the MRI and a private neuropsych eval for financial reasons, I'd choose the private neuropsych eval. I believe that the information from a neuropsych eval would be much more likely to be helpful, by explaining how she processes info, and might provide much better clues as to how to proceed, what sorts of curricula to look at, etc. As you noted, the MRI isn't going to diagnose dyslexia.

 

So, why am I posting all this? A few months ago she started complaining that she felt that something was wrong with her. Her hands really cramp up when she writes and the physical writing is very hard for her. She does not do well with spelling and her handwriting is pretty poor. She does often read words incorrectly. She makes words and letters backwards and some from the wrong direction. Even her check marks are backwards. She often has a hard time explaining herself. She has to think before she writes, even it it's one letter. She will tell you something is a D but it's a B, things like that. She does love to read and she does love to write. She is very creative. The other thing she does is when she writes a story, she has to look for pictures on the computer to match with what she is writing. So if she is writing about a willow tree, for example she would need to find a picture of a willow tree to have in her head before she could move on. I have always felt that she had a sensory disorder, always touching things, walking to close to people and that sort of thing.

 

First, I'd consider getting another OT eval, someone with extensive SPD experience, to look at these motor issues, sensory issues, and proprioceptive issues, the separation anxiety, etc. Second, with a history of motor/coordination issues, possible visual memory issues, suspected dyslexia, and obviously not seeing certain letters quite right/seeing words backwards, etc., I'd very strongly consider getting a developmental vision eval with an experienced covd doc, the most experienced one you can find (preferrably FCOVD). That's different from a regular eye checkup.

Edited April 17, 2012 by wapiti

[prairiewindmomma]

I would do the MRI.

 

You need to rule out brain tumors. (I say this as a woman who buried a child due to one--we had NO idea that this could've been the issue with our child.) You also need to rule out TBI. The fact that all of this has popped up in the last few months is VERY worrisome to me.

 

FWIW, MRIs aren't *that* expensive. They run about $2000ish pre-insurance at our local children's hospital including sedation and having the neuro read the results. A 15 minute appointment with a ped neuro, pre-insurance, is about $550. At 11, I don't think she'll need sedation, but she might enjoy the video goggles.

 

And, based on our experience, push forward with the evaluation experience...they are using the medical excuse to delay doing it.

[SkateLeft]

My youngest son has had several MRIs. He has a cyst and some neurological abnormalities that need to be watched.

 

I agree with the others that if she's having coordination issues, you'd want to do the MRI to rule out physical problems in the brain.

[wapiti]

The fact that all of this has popped up in the last few months is VERY worrisome to me.

 

I must have misunderstood - if these symptoms are new, then :iagree:, absolutely do the MRI.

 

On coordination issues, it depends on what you mean by that. "coordination issues" is vague; a LOT of kids with SPD could be said to have coordination issues, and the vast majority do not get MRIs (though it would be kind of neat to see if MRIs showed anything).

Edited April 17, 2012 by wapiti

[TippyCanoe]

.

[Paige]

I suspect your Dr wants to check for cerebral palsy. That would be the "coordination" issue. If she has anything show up on the MRI, it could indicate where she may have a LD. My DDs MRI shows she is high risk for visual LDs like dyslexia, for instance. The MRI can confirm CP but it cannot rule it out. A lot of milder cases aren't diagnosed until school age because it doesn't show up until they start writing or entering sports.

[Tiramisu]

I've been through one head and neck MRI with a dd that didn't find anything, but I'm still glad I did it. I agree with the others who said to go for it, especially if insurance will cover it. If you find anything, it may help you understand exactly what's going on and possibly determine an appropriate course of therapy. It will also make getting future accommodations much easier. And, most of all, if it's anything serious that needs to be addressed, you'll know...but I doubt it will be.

 

For what it's worth, I have two dd's who have had MRI's. I was worried about how both of them would handle it. Neither of them were sedated and both surprised me and did absolutely fine. The one who had the head and neck actually was disappointed when it was over because she couldn't finish watching the movie.

 

I understand your fear and reluctance. There is a chance we may need to do one with contrast in the future and that scares me a little.

[SailorMom]

My son had an MRI of his brain at about 11 or 12 -and he did not need the anesthesia. The docs ordered it, but I laughed and said no way :)

He did great. There is no reason for a child that old to be put out.

I would do the MRI. The more info the better.

We found that all of my son's issues were caused by small balls of grey matter in the white matter of his frontal lobes.

It doesn't depress him - he already knew he had learning problems, and this just helped to explain why.

Also - SAT administrators really don't do much for kids diagnosed with 'dyslexia" - but for a kid with the long diagnosis I have in my signature? He'll get that keyboard he needs!

[Barbara H]

We did an MRI for what sound like similar issues. It didn't net a diagnosis but it ruled some stuff out which was helpful. It was a relief to me to know they didn't the child had a stroke for example. If he had though we'd want to know that because it may have helped us prevent future problems. So, for your daughter maybe it would help to frame it as right now she is okay, but some people who struggle in the way she is develop bigger problems that could be prevented and you want to know about that.

 

I will say the MRI is very loud and can be difficult for people who are anxious. I would consider talking with your pediatrician and with the nurse at the hospital and be really honest about your daughter's level of anxiety and what your options would be for possible sedation.

 

I am wondering if you've ever sought treatment for her anxiety. It is really a hard thing for a kid to feel so anxious and it doesn't tend to be something a person just grows out of. More, it is something a person need to develop ways to deal with. It may be worth thinking seriously about the possibility of some therapy that will help her learn some new skills and deal with some of the stuff she's struggling with.

[catz]

I am wondering if you've ever sought treatment for her anxiety. It is really a hard thing for a kid to feel so anxious and it doesn't tend to be something a person just grows out of. More, it is something a person need to develop ways to deal with. It may be worth thinking seriously about the possibility of some therapy that will help her learn some new skills and deal with some of the stuff she's struggling with.

 

:iagree: If her anxiety is at a point where you consider declining medical tests just because she would be too anxious, it's definitely time to work on it. :grouphug: I would definitely do the MRI. Honestly, it sounds like something that should have been done sooner given the history there.

[fourcatmom]

Just wanted to touch on a few points here since I am very tired but I will come back tomorrow and address more. First, thank you for the replies. I appreciate the feedback. The biggest thing I want to say is that NO this is not new so that is why I am questioning proceeding with the MRI. If the symptoms were new that it would be a done deal as that would more likely indicate a serious problem such as a tumor.

 

Yes, she has had treatment for anxiety. No, she is not on medication for it and I don't feel that she needs it right now. When I say that some things cause her to be anxious, I don't necessarily mean that we avoid them or change plans. I don't let her anxiety rule the house or our lives but we deal with issues as they arise and I am supportive, patient and encouraging and we work things together. For now, this works for us. We may do the MRI, there were a lot of valid points that were raised. It is mostly due to her emotional health and avoiding something like an onset of depression that makes me think twice about proceeding and not simply the anxiety of doing it. We can get through that, it's only a temporary feeling and I would be there. And, yes it is all covered so that 's not even on the radar as for my reasons. If this test had been ordered sooner, I would have done it.

 

Just to re-state, I am not declining the test due to the anxiety of the test. It is more of an issue of not really believing that anything good is going to come of it and protecting her self-image which is already very delicate, in my opinion. If I thought it was a life or death situation then of course I would do anything possible to diagnose, and treat the problem.

 

I agree with the ps info that you passed on. I believe that they just don't want to pay for it and they want to pass the buck so to speak. I will be more diligent about what my rights are and getting her tested.

 

Thanks again for all the info. I appreciate it.

Edited April 18, 2012 by fourcatmom

[Guest amyjva]

I am going to have to be very brief b/c it is 1:30 AM and I still haven't had dinner - one of those days. But I couldn't read this without commenting. I hate to throw new information out there but I work for one of the world's leading neuropsych doctors and your e-mail raises a lot of questions that an MRI wouldn't answer. My little girl is in second grade and sounds a lot like your daughter. First -

 

1) Who tested her for dyslexia? Dyslexia can be diagnosed at age 4 with 98% accuracy. It is very pricey to have an expert do the test (we paid $1500) first and then when we went for her neuropsych eval it was ($2500). The very worst thing you can do for someone with dyslexia is "wait and see." It is also called "waiting to fail," which is illegal. They get too far behind to ever catch up. Having to see a picture in her head fits with dyslexia, as does the anxiety. Actually the hand cramping fits (dysgraphia) and the lack of coordination also fits (developmental dyspraxia). My daughter has both of those but she is profoundly dyslexic. She was in public school and the anxiety stopped when we removed her.

 

2) When you say early puberty was your daughter ever tested for congenital adrenal hyperplasia? It is extremely extremely rare, most doctors will never see a patient with it. When my daughter was showing signs of early puberty I insisted on this test which I was told by my doctor and my pediatric endo that there was no way she had this rare disease. The test results came back that she does have this. The reason I ask is the early puberty and the anxiety. What CAH does prenatally causes the amygdala to be smaller which regulates our emotional response. My daughter will ALWAYS panic during a thunderstorm b/c she will not remember how we calmed her down last time. In girls CAH messes with the amygdala and the hippocampus, which can cause the dysgraphia, dyspraxia, dyslexia, and a whole lot of other executive function issues. If there was not a test done for CAH I would ask for it.

 

I am around doctors all day. I don't see the need for the MRI. I would call the neurologist and ask specifically why an MRI needed to be done. Maybe there is something he/she didn't mention. But if the clumsiness is not new (we always said if there was a glass of water anywhere in our house, my daughter would knock it over). If you have enough money do both. But I agree that the best thing I ever did for my kids (I have 3 different special need children) was to find THE BEST neuropsych doctor and have them evaluated.

 

Good Luck!

[fourcatmom]

Thank you for the response. And that was your first post. Welcome to the board. Anyways, I don't believe her anatomy is different and what would most people consider early puberty? For me, it was early but I think it was still in the real of normal, since girls are starting earlier and earlier. For her though, this added to an already overwhelming amount of stuff to deal with. Take an emotionally young child and give them an adult situation they have to deal with in school when none of the peers are going through it and it makes it tough.

 

It also says some states are required to test of it at birth. I wonder if she has already been tested?

[Finnella]

I'd feel much more confident with a private neuropsych eval rather than a PS eval, though obviously that comes at a price. If I had to choose between the MRI and a private neuropsych eval for financial reasons, I'd choose the private neuropsych eval. I believe that the information from a neuropsych eval would be much more likely to be helpful, by explaining how she processes info, and might provide much better clues as to how to proceed, what sorts of curricula to look at, etc. As you noted, the MRI isn't going to diagnose dyslexia.

:iagree: If you have to make a choice, I'd go with the eval.

 

I do think it'd be a good idea to do the MRI. I had to have one a few years ago. It turns out I'm missing a piece of my brain. That was a surprise. While I didn't have the usual complications from this condition, it turns out that I was at risk for certain hormonal imbalances. Knowledge really is power.

[besroma]

 

She does still get headaches and she does still experience pretty extreme (in my opinion) separation anxiety. She is now 11 and in 5th grade. She won't go into an unfamiliar situation without me. If I need to drop her off some place and then leave, she has extreme fears that I am going to die. Even going to the grocery store is hard as she often wants to go with me. I don't mind this but she is only going because she is afraid that I will die and she will be left without me. We have talked about this and she openly admits that she would rather die with me then live without me. For the record, I don't always let her come as I want her to work through her fears but it's hard to do sometimes.

 

 

 

Michele,

 

First.....:grouphug:

 

It sounds like you are doing an incredible job weighing what you need to do to best take care of your daughter.

 

I just wanted to mention that my 10yo daughter has similar anxiety issues. She has no developmental issues and we have no idea when or how this developed, but she at times gets incredibly upset if she cannot find me (like I am upstairs and she went by my room, peeked in but did not see me, then went downstairs and can't find me and is crying because she doesn't know where I am).

 

Though she doesn't know why she is so scared, she is. She doesn't mention death, but she definitely is afraid for some reason, though I have been at home with her since birth and give her plenty of opportunities to socialize and be with others without my being there.

 

It's strange, because I can drop her off at choir and she is fine, but if she is home with us and can't find us, she gets very upset (once my husband and I put everyone to bed and went on the back porch for 10 min. to enjoy the night air and she ended up at the neighbor's house in tears because she thought we were gone).

 

I can also tell a difference in her now that she is entering puberty, with the hormones. It is hard for them to sort out their feelings because some of it is due to hormones and they don't understand why they feel the way they feel.

 

I am hoping to offer encouragement, because though I have been home with all of my children since birth, and have had no unusual triggers like leaving her alone, losing her in a store, forgetting her, she has these unexplainable fears about my not being there!:confused:

 

I hope you get the answers you need and am so glad you are considering her emotional well being.

 

:grouphug:

[fourcatmom]

Michele,

 

First.....:grouphug:

 

It sounds like you are doing an incredible job weighing what you need to do to best take care of your daughter.

 

I just wanted to mention that my 10yo daughter has similar anxiety issues. She has no developmental issues and we have no idea when or how this developed, but she at times gets incredibly upset if she cannot find me (like I am upstairs and she went by my room, peeked in but did not see me, then went downstairs and can't find me and is crying because she doesn't know where I am).

 

Though she doesn't know why she is so scared, she is. She doesn't mention death, but she definitely is afraid for some reason, though I have been at home with her since birth and give her plenty of opportunities to socialize and be with others without my being there.

 

It's strange, because I can drop her off at choir and she is fine, but if she is home with us and can't find us, she gets very upset (once my husband and I put everyone to bed and went on the back porch for 10 min. to enjoy the night air and she ended up at the neighbor's house in tears because she thought we were gone).

 

I can also tell a difference in her now that she is entering puberty, with the hormones. It is hard for them to sort out their feelings because some of it is due to hormones and they don't understand why they feel the way they feel.

 

I am hoping to offer encouragement, because though I have been home with all of my children since birth, and have had no unusual triggers like leaving her alone, losing her in a store, forgetting her, she has these unexplainable fears about my not being there!:confused:

 

I hope you get the answers you need and am so glad you are considering her emotional well being.

 

:grouphug:

 

Hi Mary,

 

Nice to see you again! Thanks for the information. It was really hard to post all this info on here since it so personal for her but I am really torn on what to do. I know she needs the LD evaluation and we will get that but I hate having to jump through hopes and work so hard to get something that is so needed. They should do it for goodness sake. It shouldn't be a question at her age on how to proceed. I really think I would like to know what the MRI shows, if anything but I still have to weight the benefit with the risk on that one.

 

I just really want to say thank you to everyone for all your replies. I was really nervous about posting, it is so much easier to talk about curriculum but I want to make an educated decision and not one based on my emotions. I knew that gaining information from others who have walked down similar paths or the same paths would help me sort things out.

 

Thanks again for letting me share our personal story and giving me friendly and supportive advice.

[fourcatmom]

It scares me that 459 people have read about my daughter. Somehow, I thought the SN board would be smaller then the main boards which I am used to.

 

Does it bother anyone else that it has that much traffic or am I just being paranoid since I posted something personal?

[Ottakee]

Well many of us have likely read the thread many many times--each time reading the new responses and checking for updates. I don't know that 459 individual people have read the posts.

[fourcatmom]

Your right. I just get nervous when it's personal but I wanted to share and I wanted feedback. Just got paranoid.

 

I will update when I know what our decision is and how we will proceed.

 

Thanks again.

[besroma]

Well many of us have likely read the thread many many times--each time reading the new responses and checking for updates. I don't know that 459 individual people have read the posts.

 

 

:iagree: I am probably 20 of those myself! :D

[fourcatmom]

Sorry, it was a moment of weakness! :tongue_smilie:

[Finnella]

Sorry, it was a moment of weakness! :tongue_smilie:

 

:grouphug:

 

Many of us get personal over here. I think everyone understands. It is the best way to let others help us.

[Tiramisu]

:grouphug:

 

Many of us get personal over here. I think everyone understands. It is the best way to let others help us.

 

I totally agree. I don't know where I'd be if it weren't for the moms here. IRL, people seem don't often talk about this stuff except with a very close friend. Close friends can commiserate but rarely do they have the kind of experience to help us in a practical way. Sometimes we just need to reach out broadly to get the information and support we need. I can't imagine how isolated I'd be without the SN forum.

 

FWIW, I'm thinking of changing my board name for increased privacy for the sake of my children. I wouldn't want to give up this resource for support or the chance to help others who may benefit from our experiences, but a name change may be in order.

[melmichigan]

I would definately pursue the evaluation. The MRI doesn't sound as pressing. I would want to know what specifically they are attempting to rule out or in on that one since it doesn't sound like anything you mentioned is new or sudden. Frankly, your DD sounds a lot like one of mine. My youngest twin has cerebral palsy from premature birth at 35 weeks, she was a blue baby and had a loss of oxygen for an undetermined period of time due to mismanagement of care. In the end she has very low working memory and processing speeds leading to reversals, dysgraphia and a whole boatload of other symptoms, one of which is anxiety and more recently depression. :grouphug:

[swellmomma]

DS13 has had 2 MRIs, 1 at age 3.5 due to unexplained tremors, that one he was knocked out for.The second one was in Nov '10. Both showed everything okay. DD12 had and MRI done in the summer of '09. Out here when there is significant behaviour or learning issues they do an MRI. WHen ds8 gets to the neurodevelopmental clinic they will likely order one as well.

 

I would have it done if nothing else than to rule out physical reasons for the delays. If there is a physical reason for them it would be approached differently than if they were just learning issues.Well worth getting one done to rule anything out.