Missed Comments

I am so sorry but for some reason I stopped getting email notifications on comments.  I really like to respond immediately, so my apologies! I will try to keep tabs on your posts!

Lithium and Kidney Damage

The news we all dreaded came to us this week:  Caroline's lithium blood levels are way too high and we have to reduce her lithium dosage even if it destabilizes her.  Great.  We are going to try adding 50 to 100 mg more of the Seroquel XR to try to counteract mania but she is already at the max of 800mg.  She has been on Lithium for five years and it has been such a great mood stabilizer for her and there is no other drug like it.  With all she has gone through this fall already, we were really hoping that a big med change was not going to be added to the mess.  But her kidneys are truly at risk now so we can't ignore this.

We took the advice of her IEP team and dropped Spanish for the year, moving her instead into a special ed resource room study hall, which she can skip to sleep in with no consequence.  The team has been so amazing and I am so thankful for their kindness and understanding.  She will have to make up Spanish possibly in summer school.  But this way she can focus more on her core subjects.  At the end of this semester, we will be arranging her schedule again so she has no first period class and can start later.  Again, amazing accommodation!

Bipolar Disorder in Children...

...is devastating.  As much as cancer, if not more because no one knows what to say or do when you tell them your child has a serious mental illness.  I still feel very hesitant to tell people that I am getting to know about her disorder.  I have experienced rejection as a result and so has she.  The good news is that the older she gets the less obvious it is that she has bipolar disorder as maturity has kicked in.  Hang in there, it can get better even though it will never go away.  There will be bad days and days that are not as bad and moments of true joy.  She asked me last night why God has allowed this in her life, she always feels like life is against her.  And it does seem that as soon as she gets going, something knocks her down, a med stops working, or side effects interfere with her life, or her education is interrupted by instability.  I get her pain.  I want to make it better.  I can only pray and hope it does.

Accommodations Finalized

We had the "final" IEP meeting today, with the school psychologist, social worker, school nurse, head of special ed and three of her teachers in attendance.  Caroline was supposed to be there but I preferred she wasn't this time because I wanted to talk about her freely as opposed to the last IEP meeting which she attended.  Basically, my assessment of the meeting on a scale of 1 to 10 was a 10, as usual.  This school's IEP team rocks.  We were able to come up with many accommodations including extra time on tests and extra time to compete assignments.

Even so, I am really disheartened by the end of quarter grades.  She ended up with three Ds, two Cs and two Bs.  I am discouraged by her inability to keep all the balls in the air at the same time.  As soon as she focuses on bringing up her grade in one class, she loses focus on her other classes.  One of the accommodations may be to drop one or two of her classes and to add in a resource period with the special ed head to provide some more oversight for her academics.  That could be a good idea.

Honestly, I am just tired of dealing with this today.   Riding an emotional roller coaster all the time when you have a bp kid gets old.

To top it all off, the reduction of the Lithium to address the vision/dizziness/headaches has resulted in a manic swing, so today she went off on a kid in PE and she has been verbally belligerent tonight, very easily irritated and angry.  Tomorrow we will go back to the previous dose of Lithium .  I made another psychiatry appointment for Monday.

Tomorrow we have parent/teacher conferences at the high school.  My husband will try to get with Caroline's teachers and I will go to see Jane's teachers.  Thankfully Jane and Mae are both doing just fine in school so that is something to be grateful for.

Vision Therapy Evaluation

Caroline had an evaluation yesterday with a Vision Therapist to ascertain if she has a vision issue that is not readily detected by a regular optometry evaluation.  Sure enough, she does.  She has a tracking problem, where her eyes do not track what she is seeing simultaneously.  This in turn results in the double vision she has been seeing.  We are so relieved to know that finally have a solution.  Unfortunately she needs special glasses to the tune of $450!  But at this point, whatever works, right?  They are tinted as well to help with the glare from the fluorescent lights.  The vision specialist also recommended therapy but we will see if the glasses take care of the issue as vision therapy is expensive and not usually covered by insurance.  To learn more about vision therapy, go to www.visionhelp.com.

Chronic Lithium Toxicity/Nystagmus

After doing some digging, I have found that lithium, when at chronically high doses, can cause scrolling vision (nystagmus) and headaches.  So a few days ago, as an experiment, for which I take full responsibility, I reduced her morning Lithium dose by one pill, 300mg, and the next day she had neither the vision issues or the headaches.  But by the afternoon she was swinging into mania, so we went back to the regular dose the next day, and, voila, scrolling vision and headaches.  Again, I would say, never reduce or stop a medication without doctor's approval!  I only did this knowing we were going to see the psychiatrist within two days and I needed some information to give her regarding the link between the lithium and her headaches.  We have also been doing this for almost ten years, so I know what to watch for.

A month ago, when we mentioned to the nurse practitioner at the psychiatrist's office that she was having these issues, she did not mention this possible connection between lithium toxicity and acquired nystagmus.  Either she wasn't aware of this or just forgot or something.  The bummer is, had we known, maybe we would have reduced the dose weeks ago and she would not have missed so much school and avoided an MRI .  We went back to see her yesterday and this time I insisted on a blood level for Lithium and also to titrate down the dose.  She agreed, so today she got 150mg less than usual in the morning.  We shall see how her day goes. I am really, really hoping this has been the source of the problem.  If she can just stay in school consistently, I just know she would perform so much better.  The weird thing is that if the lithium is at a toxic level, it happened sort of by itself, without an increase in the dose.  I guess these things can happen.

On a brighter note, Caroline's grades are not as bad as we thought they were at the end of the quarter.  She managed to bring one of her grades up from an F to a B- after retaking a test that the Geometry teacher graciously allowed her to retake.  She still has two very low grades in other classes, but the rest are As and Bs.  She knows that she won't be able to play lacrosse in the spring if she has even one failing grade or more than one D.  With that in mind, she is promising to work very hard to bring up her GPA.  She is truly an awesome lacrosse player (says the coach) and it would be such a shame if she is shut out of the game.

Bad News at the End of the Quarter/IEP

She is failing or has a D in almost every core subject. Obviously this is not good.  We need to get this ship turned around soon or we need to look at other options for her schooling.  She is still having the scrolling vision and headaches, which I am strongly suspecting in due to too high level of Lithium in her blood after researching chronic toxicity symptoms of Lithium.  She sees the psychiatrist on Wednesday and we will ask for blood work and a slow titration down on this med.  Her thyroid biopsy was postponed as the radiologist felt it wasn't necessary.  Still waiting on the results of the brain MRI.

The IEP meeting is next week.  Thankfully my husband is here and can be part of the discussion.  I am feeling quite discouraged by this first quarter, between her very real physical issues and the confusion over her schedule in the beginning and now the resulting poor grades.  Definitely doubting our decision to throw her into a big school.  As great as this IEP team is, she may need a smaller environment and more intensive help than a big public high school can give.