A Reason to Blog

I’ve been trying to come up with a reason to blog for a while now. Unfortunately, I now have a main topic area. Just about 5 months ago I was diagnosed with Ehlers-Danlos Syndrome (EDS) and just last week found out I have Multiple Sclerosis (MS). Apparently I’m hitting the genetic jackpot left and right. My mind has been overwhelmed with the news and perhaps blogging will bring some clarity, allow some place to vent every now and again, and to have a place to track how things are going.

I’m not sure where this will lead or how often I’ll get to post, but here goes nothing….

Ivy

Exciting News on CCSVI from BNAC

The BNAC released a newsletter with updates on their research.  They are moving forward on the second diagnostic study and have added a third study that is actually focused on treatment.  This is extremely exciting and promising news.  Although they have not yet released the results of their first study, the fact that they are starting a treatment study makes me think they definitely found proof of CCSVI in MS patients.

While I’m on the list for the second study, so are 13,000+ other people!  So, I decided to sign up for their Diagnostic Testing.  For approximately $4,500, I can go up to Buffalo and get the tests I’ve been asking for.  For approximately $6,000, they’ll throw in some extra tests, a hotel, and limo service!!  I decided to sign up for the basic package and Posey and I can do a road trip instead of me flying there and having limo service.

I cannot believe that I just signed up for a $4,500 medical test!  I am just that curious and need to know.  There’s a small chance medical insurance will pay for it, but it’s not likely.  We’ll just have to find a way to pay for it.

Oh, the kindergarten transition meeting went well.  They are setting up tons of evaluations and observations and we likely won’t get to meet with them regarding the IEP until May!  I’m less stressed now that things have started, but now stress has shifted to nervousness.  At least the CCSVI news has me distracted!

Kindergarten Transition Meeting

Tomorrow is Little Sister’s kindergarten transition meeting, so in typical Ivy fashion, I started stressing about it a week ago and am now extremely stressed.  I spent most of my spare time gathering papers, writing notes and documenting her progress and lack of progress in key areas — cognitive, gross motor, fine motor, sensory, etc.  I have a one pager now with things I think they should know.  I even ran it by my mom-in-law who is a kindergarten teacher.  She gave me good questions to ask them, such as what will they do if she refuses to go to an assembly or gets upset during one, will they let her use a slant board or sit on a pillow, etc.

I find the whole evaluation process depressing.  It forces you to focus almost exclusively on your child’s negatives and lack of progress.  I want to acknowledge fantastic progress she has made in some areas, but that could threaten her access to services.  Therefore I’m forced to emphasize all of her problems and that has me in the dumps.

When I don’t have to compare her to other 5 year-olds, I think she’s doing pretty well, but throw her in with her peers and reality hits.  She’s still at least a year behind in most motor areas and her sensory issues keep intensifying (not that schools seem to care much about that, but it makes home life rough.)

Right now I need to focus on getting her services and an IEP.  Based on Section 602 of the Individuals with Disabilities Education Act (IDEA) (P.L. 108-446), there are 13 areas of disability that qualify a child for services and an Individual Education Plan (IEP):

1. autism
2. deaf/blind
3. deafness
4. hearing impaired
5. mental retardation
6. multiple disabilities
7. orthopedic impairment
8. serious emotional disturbance
9. specific learning disabilities
10. speech or language impairment
11. traumatic brain injury
12. visual impairment including blindness
13. and other health impairment

Per the statute:

(3) Child with a disability.–
“(A) In general.–The term `child with a disability’ means a child–
“(i) with mental retardation, hearing impairments (including deafness), speech or language impairments, visual impairments (including blindness), serious emotional disturbance (referred to in this title as `emotional disturbance’), orthopedic impairments, autism, traumatic brain injury, other health impairments, or specific learning disabilities; and
“(ii) who, by reason thereof, needs special education and related services.
“(B) Child aged 3 through 9.–The term `child with a disability’ for a child aged 3 through 9 (or any subset of that age range, including ages 3 through 5), may, at the discretion of the State and the local educational agency, include a child–
“(i) experiencing developmental delays, as defined by the State and as measured by appropriate diagnostic instruments and procedures,
in 1 or more of the following areas: physical development; cognitive
development; communication development; social or emotional development; or adaptive development; and
“(ii) who, by reason thereof, needs special education and related services.

During our meeting with the committee last year, we were told that we’d have to focus on “other health impairment” since nothing else on the list really applies.  Although she wears DAFOs, her hypermobility is not significant enough to qualify as an “orthopedic impairment.”  Previously when fighting for services, like at the 3 year-old transition meeting, all we had was a nebulous diagnosis of “hypotonia” which is really a symptom, not a diagnosis, but at the time we didn’t know what was causing it.  Now at least we have a diagnosis – Little Sister has Ehlers-Danlos Syndrome.  We have a letter from a reputable genetics specialist stating that she will need life-long physical therapy to improve strength and avoid onset of arthritis.  It also documents her physical weaknesses.

Great, you’d think!  I have a detailed evaluation of Little Sister’s physical condition and a statement that therapy is necessary.  However, as we were told last year, this could all be written off as “medical” and not “educational.”  If they do not see enough evidence of this impacting her ability to learn, they don’t need to provide any services.  They’ll do their own evaluation to determine this.

Our problem is that there is a lot Little Sister can do for a short amount of time, but then won’t be able to repeat it even moments later.  She fatigues very quickly.  Another problem we had during the 3 year-old assessment was that they looked to see if she could do something, not the quality with which the task was accomplished.  Yes, she may be able to do a fine motor task, but they tended to ignore that she was struggling or not doing it appropriately.  She may have picked something up, for example, but many fingers were involved and her grasps were immature.  If this same standard is used during her upcoming evaluations, we’re in trouble.

Schools also do not seem concerned about her sensory problems, which if you read about our experiences in Disney World, you’ll know have become quite significant.  These are not going to come out during an evaluation process.  They have to be witnessed during regular life experiences.  Just wait until they have a loud assembly, a fire-drill alarm goes off, or she simply doesn’t get her way!  I’m told she is generally fine at school, but I did get to witness a typical Little Sister melt-down at school last week.  While I was sad that she was screaming, crying, and stamping her feet, I was secretly very glad her teacher got to see it.  What caused the tantrum?  There were two chairs of one style and one different one.  Another boy sat in the different one and she wanted that one, so she threw a fit.  That evening at her dance recital she refused to participate until the color dot she wanted to stand on was given to her.  We see this all of the time at home.  She threw a huge tantrum (that word probably isn’t even strong enough) a few days ago because Daddy gave her a bath instead of Mommy.  She doesn’t quite care that doing her baths is much harder for me.  Apparently it’s my job and changing the routine did not meet her approval.  I could go on, but you get the picture.  She probably isn’t going to be one of the “easy kids.”

Sorry for going on at length about stressing in advance of the meeting!  It’s not a good thing to stress during Girl Scout cookie season.  After a few thin mints, I thought it was better to write than continue eating!!  I know not much is going to happen tomorrow.  It’s a lot like opening arguments.  It’s a time to lay out the case and learn the process.  Then they’ll schedule evaluations, after which the real battle, I mean fun starts.

Interventional Radiologists

This Is MS posted fantastic advice on how to track down someone to test for CCSVI.  They recommend trying to find an Interventional Radiologist to do the test.  Their site has a suggested e-mail you can use to get things started.  I plan to start e-mailing people tomorrow and I’m finally going to make an appointment with my regular family doctor to see if he can recommend some interventional radiologists.

Does anyone know any interventional radiologists in the Philly area or within a few hour drive?

Frequently Flu-Like

Since my third full-strength Rebif shot, I’ve been frequently flu-like.  The symptoms still only last for a few hours, but they are happening after every shot.  I’m getting a little smarter about it now.

After Wednesday night’s shot, I woke up at 4 a.m. (to pee, of course) and had a 102 point something fever.  I could feel the heat radiating off of my head (it was almost like being on Lupron again.)  I took two Tylenol and went back to sleep until 7.  I woke up feeling better than I did after Monday night’s shot when I waited until 7 a.m. to take the Tylenol.   I was able to get to work on time Thursday and felt tired, but functional and was fine by around 9 a.m.   I’m so thankful to be a teleworker, because if I had to actually have the energy to do a commute, I think I’d be using a ton of sick leave.

So, tonight I’m going to be even smarter about it.  I’m going to put the Tylenol and a bottle of water right on my night table.  That way when I roll over in the middle of the night I won’t even have to get out of bed to get the Tylenol.  Aleve (which I take before every shot) is supposed to help for 12 hours, but seems to not to a thing for me after about 6 hours.

Oh, I learned a couple of interesting things today.  Given the Tylenol recall, I looked at the bottle I’ve been grabbing from the dimly lit bathroom in the middle of the night and looked for the Lot number.  In the process I realized that it has an expiration date of July 2008.  WHOOPS!  I’m usually a stickler about expiration dates and thought this was the newer bottle I bought this summer (guess that one is missing.)  The good news is that it’s too old to be in the recall and the even better news is that I learned that Tylenol and other similar pain killers are good for at least 5 years after their expiration dates.  Apparently the military did a study quite a while ago showing that 90% of medications are good for 15 years after they’ve “expired.”  Very cool.

I also learned that it’s not good to combine Aleve with Motrin or Advil, but that mixing any of those with aspirin or Tylenol are okay since they work on different parts of the body.  Thank goodness for the Internet!

Rebif – Finished the Titration Pack

Time seems to be flying by.  I guess the holidays have a lot to do with that.  We celebrate both Chanukah and Christmas, so it’s been pretty busy here.  I was hoping to use our annual holiday party as a way to start fund raising for the MS Walk, but the original time got snowed out and the rescheduled date was a smaller crowd, so I decided to tone down the plan.  Hopefully Mother Nature will cooperate next year!

Throughout the holiday season I’ve been working my way through the Rebif Titration pack.  It’s been a very mixed experience.  I must say that my favorite part is having days without shots.  Three days a week certainly trumps daily injections.  At the end of November I scheduled out all of the shots for December and managed to avoid shots on Christmas Eve, New Year’s Eve, and on the nights before busy days.  Fitting in 3 shots a week has worked out very well.

My least favorite part?  It’s a toss-up between the actual shot and the side effects.  I find the Rebif auto-injection contraption harder to use than the Copaxone one.  Of course my Copaxone auto-ject was well worn in and I was used to it, but there’s just something about the Rebiject that I dislike.  It has a rubbery cover to the button you press to administer the shot.  There have been several nights where I’ve pressed the darn thing, but it didn’t trigger the shot.  My shot routine is to get the auto-inject in place, take a deep breathe, look away, press the button, then slowly exhale until it’s done.  One night it took three tries until the darn shot happened.  By then my husband and I were laughing so hard it was difficult to keep the contraption in place.  They’d be wise to get rid of that rubbery part on the next model.

My other complaint about the Rebiject is that it tends to allow medication to seep out of the needle when it’s being pressed into the holder.  More often than not, medication drips out which makes the shot hurt a whole lot more.  The nurse who trained me said to give the assembled device several good taps once the cap remover is taken off to shake off any drips.  I think that helps a bit, but it would be tons better if the stuff didn’t drip out to begin with.

At least after the shot I don’t have the pain I used to have with the Copaxone.  Before doing the Rebif shot, I pop a Tylenol while heating up the Copaxone heat pack which I use for 5 minutes, then wipe the spot with alcohol, wait for it to dry, do the shot, massage it for a moment, and then hold a second heat pack on the spot until it cools off.  I still bruise, but it’s a very different kind of mark.  It is a deeper red, then black and blue rather than the spots I got with the Copaxone which were a cross between an allergic reaction and a black and blue mark.

As for the side effects, they vary by the day and never last long.  I’ve only had flu-like symptoms one morning.  It was after the third 22mcg shot.  I was fine at night, but woke up with a 101.5 fever (it spiked a few times, but I didn’t have the thermometer handy to measure it) and felt really weak and exhausted.  I took an Aleve and went back to bed until 10 a.m.  I woke up feeling fine.  It was the strangest thing to have a bad case of the flu that only lasted 4 hours, after which I was completely fine and able to go out to finish Christmas shopping.  A couple of other mornings I’ve had a fever of between 100.4 and 101.4, but didn’t feel sick at all.  About a third of the time I get a metallic taste almost immediately after the shot and the next morning I get horrible stomach pain on the left side of my abdomen.  That, too, goes away by about 10:30.

I started the full dose two shots ago.  I’ve been meaning to post this for a week now, but the holidays and family visiting from out of town have been keeping me pretty busy.  So far, the 44mcg shots have been uneventful.  I’ve not been willing to chance just doing Tylenol, so I’ve taken Aleve from the start.  Perhaps one day this week I’ll see if Tylenol is good enough.

I hope you are all having a great start to the new year and that everyone has a happy, healthy, and peaceful 2010!  I’m excited about starting a new decade.  I think this is going to be a fantastic time for MS research and that treatment of this disease will look radically different by the end of the 2010’s.  Just think about how far things have come in the past decade and now with the CCSVI research, it’s a pretty amazing time which brings a lot of hope and encouragement!

Sums up my feelings about CCSVI

An article written by Dr. Ashton Embry, “Hope and Elation – Frustration and Anger – Fear and Loathing: The Contrasting Emotional Responses to the Revolutionary Discoveries in MS Made by Dr Zamboni” so completely sums up my feelings about CCSVI.

When I first heard of this breakthrough I was over the moon!  A discovery of this magnitude was beyond comprehension.  I was elated.  Within a couple of weeks, my happiness turned to frustration.  Dr. Specialist called this “too soon for prime time” and I wasn’t even about to ask Dr. Generalist about this (by the way, I’m replacing him and will start seeing a new generalist in February!)  I’d asked every person I know of in the medical community or who was related to someone in the medical world if they knew of someone, anyone (!) who would do this scan for me.  It’s been a month of searching and I cannot find anyone to talk to.

I’ve pondered doing cold-calls to cardiologists and vascular specialists, but if I can’t get anywhere with people I know, how should I expect strangers to jump on board?  I feel like I’d be setting myself up for even greater disappointment.

Fear and loathing seem a bit extreme, but I am certainly growing more and more angry about the lack of response from the US media and from the doctors who are supposed to be treating me with my best interest in mind.  I’ve grown very suspicious of everyone’s motives.  Dr. Embry captures my thoughts on this exactly.  This is such a radical change that it’s no surprise neurologists are responding the way that they are.  It’s frustrating at best, but slipping quickly towards infuriating!

I remain hopeful that this breakthrough will actually break through and that those of us who want to have the scan will be allowed to and that there will be enough doctors out there willing and able to do the scans.  I remain hopeful that research funding will be available to determine the best way to unclog our blocked veins.  I’m optimistic that this will change the way in which MS is managed with medication, but not 100% sure we’ll all be able to stop taking our current medications.  Much more research needs to be done to find out the affect of iron already in our central nervous system.  Perhaps a whole new line of medications and treatments will develop that focuses on how to deal with the iron.

I guess I do remain hopeful, but that’s just my nature.  I’m still pretty darn angry and frustrated!

Buffalo Research Update

This morning I got an e-mail from the “Combined Transcranial and Extracranial Venous Doppler (CTEVD) Evaluation in MS and Related Diseases study” folks at the University of Buffalo.  They acknowledged receipt of the online questionnaire I completed, but informed me that it will likely be 1 – 2 months before I hear back from them.  They’ll either inform me that I’m eligible or that I didn’t qualify.  Either way, it’s nice to have a time line and to know that they’ll contact me regardless.

They also reminded me that they will not be providing any of the CCSVI images to patients or their doctors, however MRI images will be available if requested.  I’ve still not found anyone to do the doppler, but I’m not giving up!  It’s just taking longer than I thought it would.