Should I be concerned? Hormones or something else...

[SunshineMom]

My dd12 has cerebellar hyperplasia (1/2 cerebellum which controls motor, speech, emotions,etc aka "little brain") and I have been noticing more and more that she is forgetting things which are important to her.  I don't know if I should follow up with some sort of evaluation, I wouldn't know where to begin, btw, or just chalk it up to hormones.  Yesterday, we went to Winco to purchase a pumpkin for each of my two girls and the store, unfortunately were out of any decent ones.  We decided to go to another Winco closer to our home today.  We talked about this plan several times throughout the day, at least three times.  We headed out, starting driving and she asked me why I wasn't going to the Albertsons.  I didn't understand why she was asking me that. It turns out, she thought we were getting our pumpkins at Albertsons.  My younger daughter and I were just dumbfounded and couldn't believe that she had forgotten that we were going to Winco.  A while back, I found that she was leaving the last letter of her first name off...what?...we corrected that.  Today, I asked her to tell me her address and she couldn't remember.  That one scared me and we will be working on that.  I know she has issues with her short term memory but lately it has been more obvious.  She is also forgetting how to spell words she once knew.  On the upside, she has learned all her multiples, can do division, simple fractions, some word problems, etc. however other skills like handwriting has not improved since third grade.  She is doing very well with WWE3 and will complete it in a few months. Her speech has remained stable after years of speech therapy however her overall processing is slow which can be tiring for listeners who need to be patient as she finishes thoughts.  She is not able to make friends with her peers but we have found a safe and rewarding social circle for her but the kids are young (7/8).  She reads a ton, her reading level is 5th grade but she is choosing to read below that level. She keeps plugging along with school at her own rate which is fine, I guess.  I am keeping my expectations realistic but sometimes I'm not sure if I should be more concerned or just accept her reality.  She's in some tough shoes because she also has to deal with her learning disabilities with a younger sister who is accelerated.  Some days, I really do want to hide under a rock and raise a white flag.  I choose not to think about all of this too much because I just worry and become ineffective.

[OneStepAtATime]

Honey, I am so sorry you are facing such an uncertain situation.  I don't have any answers or any experience with this particular issue but I know in general how you apparently feel at times.  I am sending you big hugs and wish I could help.

 

My daughter is bright, in fact she tested in the gifted range, but she is dyslexic and dyscalculic.  The dyslexia is remediating nicely, but her dyscalculia is far deeper than just having extreme trouble with basic addition, subtraction etc.  She has no sense of the passage of time, finds calendars and clocks extremely challenging, and cannot seem to effectively "sense" how long it takes to do anything.  These are critical life skills that she simply does not have at the most basic level.  I never realized how much of my ability to plan out my day and get things done was based on a sense of the passage of time, short and long term.  I can look at a clock, do some quick arithmetic and know how much time I have left to complete my current task before I have to leave.  I then translate that math number into a "feeling" of how much time that actually is and a "feeling" of how much i can get done in that time frame.  She doesn't have that feeling at all.  15 minutes feels pretty much the same as an hour or two to her.  Therefore, she has no idea how to budget her time.  She also has no sense of money, no sense of seasons, passage of days and months does not translate into a feeling either, etc.  

 

While our situations are not the same and I don't want to presume in any way that they are, I do understand and there are days when I worry, too, until I don't get anything accomplished.  Will she be able to function effectively in a work environment?  Will she be able to manage her personal finances?  Will she be able to get her kids to school on time, or herself to work, or make deadlines in college? Is there something else I should be doing to try and remediate this besides what we are already doing?  At 13 she is very aware that other students are doing things in math she just doesn't grasp and it affects her self-esteem.  What about when she is an adult?  What if she still can't determine how much change she should get back without counting on her fingers?  What will she think about herself if she still has to ask others if she can accomplish her current task in the 30 minutes she has left?  What if she still can't read a calendar and know what "I have to get this done by the end of February" really means?

 

I also understand about the sibling issue and it is a hard place to be as a parent.  My son is also dyslexic, but he does not have dyscalculia.  When they were younger the difference wasn't so glaring.  It becomes more so every day.  He loves history and is really, really good and just "getting" all the complex interweaving and passage of time through history. He loves talking about it and can tie it all in to current political, religious and social structures and situations.  I guess because of that lack of the sense of time, history makes no sense to my daughter.  Time lines don't really help either.  She sees her younger brother breeze through many math concepts (though not all) and history and it hurts her, I know it does. She also has difficulty understanding spoken words when spoken too quickly, although she rarely says anything so most people don't realize it in conversation.  This means that when I read to her, I have to read fairly slowly and it also means she cannot listen to books on cd.  Spoken words go too fast.  Even reading slowly, there are times my words don't translate and she gets frustrated.  She says it just sounds like a bunch of sounds strung together.  On the other hand, her younger sibling LOVES for me to read to him and wants me to read pretty quickly and he remembers passages we have read weeks or even months later and can quote them verbatim and understand the context of the quote (even though he is the one with the auditory processing issue for blended sounds).  She struggles with this daily.

 

I have rambled on and I'm sorry.  I wish there were something I could do or suggest.  I don't know anything about cerebellar hyperplasia but if you are noticing deterioration in certain areas, you may very well want to check things out.  I can think of at least a dozen instances where I or someone I know had a Mommy flag go up, we didn't follow our instincts and it was a mistake.  It could be as simple as hormones, but it would give you more peace of mind if you knew for certain.  Does she have a very knowledgeable pediatrician who could steer you in the right direction?  Ours wasn't.  Nice lady but she misdiagnosed my son's thrush as a baby, knew next to nothing about dyslexia and had never heard of dyscalculia.  However, you may be luckier?  Have you tried doing a google search?

[SunshineMom]

OneStepAtATime...yes, not sensing the passage of time would be difficult and the frustrations with processing information not quick enough must be challenging for your dd.   :grouphug:   Your son also presents his own unique challenges. I get pulled between my two kids as well...one slower learner and one lightening fast...it is very mentally taxing.   I admire your determination and commitment to your children's emotional, spiritual and educational progress--WOW!  I know the kind of sacrificing it takes.

 

What I don't know is if there is anything I could actually do that would change how my dd12 processes or stores information.  Are there medications?  She is functioning but I think I need to dig around some more.  In the past, I have not gotten much of a response from the medical community.  Cerebellar Hypoplasia is rare and there is no "cure."  DD12 is actually doing very well considering some of the other cases I have read about, again is this normal for her or something else?  I think I would like to see another MRI for dd12 and speak with a neurologist.  

[OneStepAtATime]

The National Institute of Neurological Disorders and stroke apparently has a list of places where they are doing clinical trial for this particular disorder.  Even if you are not interested in enrolling your child in a clinical trial, perhaps they also have a list somewhere of places to get additional evaluations and assistance?

 

As for an MRI, if you haven't had one recently, that might help.  I would hope there would also be someone able to follow up and explain the findings effectively.  My niece has a brain tumor (slow growing, thankfully) and her first MRI many years ago finally revealed what the issue was. Before that, there were a ton of misdiagnosis (how do you make that word plural?).  Unfortunately, sometimes MRI's after that were not explained well or interpreted accurately.  It depended on who was reading it.  Definitely helped, though, to track the situation in her brain over time and help them to determine what to do next.

 

It is wonderful that she has you.  I know this is hard.  I will ask around and see if anyone else around me has any experience with this or has a suggestion.  Several aquaintances are doctors.

[PeterPan]

Jewel, the forgetting with the teen years is more like a fog from fatigue.  It's stuff they know but it drops from their memory.  They eat more, sleep more, get grouchy while doing their math because they're tired and don't put it into words.  To me, given what you've said, I'd probably want a check in with the doctor.  That doesn't seem to me to be the normal teen thing.  Is she tired?  If you give her an hour to rest in bed, does she fall asleep?  That would be your check.  If food or a nap doesn't help, I'd say it's something else.

 

 

[OneStepAtATime]

Jewel, just wanted you to know that I hadn't forgotten about asking.  So far none of the doctors in my area know anything that would be helpful.  Sorry.  Still asking.