Life with MS & EDS

October 25, 2010

Little Sister Update

Little Sister had her six year old check-up.  Going to the doctor with her is always an interesting experience.  I somehow always end up feeling like a bad parent.  It’s weird to nonchalantly respond to, “So, how does she sleep at night?” with responses like, “Great, as long as it is broad daylight in her room.  She can’t deal with shadows, so we can’t dim the lights.”  I’ve lost count of the number of crazy things I’ve said in response to seemingly general questions.  It usually makes me laugh (although I try not to do so out loud in front of the doctors.)  The response to “how is she eating” was not quite as interesting.  I said that most of her calories seemed to be from juice, but we’re working on water.  I think I saw the doctor’s eyebrows rise at that one.  Little Sister chimed in with saying she’ll take a giant sip of water at recess.  I guess that’s progress.  I said that we were still at about 5 foods (mac and cheese, pasta with sauce, chicken nuggets, a variety of fruit, baked or mashed potatoes (that’s a very new addition), and cheese.)  I guess I should have added in jelly sandwiches, cereal, and the occasional waffle, in addition to snack foods.  She asked if we were using nutritional supplement and I said we were doing vitamins.  It seems like we need to consider doing nutritional supplements, like Boost shakes or something like that.  Her BMI about 14, which is at the 15th percentile.   I guess that’s not terribly low.  “Under weight” doesn’t start until 5% or less, according to the CDC.

The one thing that the doctor was not happy about was that physical therapy was dropped from her IEP.  She was quite shocked by that.  I said they dropped it because she was able to get around the classroom and the school.  I explained that we were trying to keep her active in other ways, but that soccer lessons aren’t going well, so we need to find something else to do.  She wrote a firm letter to the school saying that PT should be added back into the IEP or that she should have a medical 504 plan.  Regular PT is an important part of preventing arthritis and other painful complications in folks with Ehlers-Danlos, which she points out in her letter.  I imagine we won’t get anywhere with the school district, but I’m going to give it a try before finding private therapy.  She gave us a list of places we can try outside of the school.  These are the times I’m thankful we have supplemental health insurance for her.

She flat out refused to have her blood pressure taken.  The doctor was really good about it.  She got the manual cuff out and let Little Sister feel it and see what it did, but the tears continued until the thing was securely back in its holder.  That reminded me that we are overdue for her echocardiogram.  I need to book that at a time my husband can come with.  I think it’s going to take both of us to get her to do that.  The first one was soon before her sensory issues reared their ugly head.  I think it’s going to be a huge challenge this time around.  It’s never a dull moment!

Otherwise the visit went well.  It was great to be able to share how well she’s doing in school (except for some of the sensory things and her fine motor delay causing some frustration.)  We absolutely did the right thing in waiting a year before starting Kindergarten.  Her teacher said she’s doing well.  That was great to hear.  Little Sister seems to be having fun and that’s what counts!

February 4, 2010

Exciting News on CCSVI from BNAC

Filed under: Uncategorized — by mseds @ 10:35 pm
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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!

February 3, 2010

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.

September 7, 2009

Feeling Blue

I’ve been trying to find time to organize my thoughts and actually sit down to write this post, but I’m either not near something to write with when my thoughts come together or my thoughts escape me when I am able to capture them.  The ideal time just isn’t happening, so I’ll make do with less than ideal.  Now if only the girls would entertain themselves long enough to stop interrupting my thoughts every sentence….

My MS has been under control.  For the most part I’m still benefiting from the Solumedrol/Prednisone experience last spring.  I’ve accepted the fact that my optic neuritis in my right eye is here to stay and that the vision will never improve to 100%.  While I’m not enjoying the Copaxone shots, they have become part of my routine and are going okay.  I’d still like to replace the arm shot location, but can’t think of another body part to use since I’ve already ditched the thighs.  Every now and again I’ll use an extra stomach shot or the side of my hips, but for the most part I just suck it up and deal with the arms.

Despite my physical health doing okay, I’ve been feeling blue most of the summer.  Little Sister has been extremely challenging the past few months.  Until now, I’ve always thought of myself as the parent of a child with a developmental delay.  She walked at 26 months and has had other motor-related delays.  In all of her evaluations for services, she always placed approximately 6 – 12 months behind.  I could handle that.  However, this past spring during her evaluation her motor skills and other abilities placed her at between 30 – 36 months old.  Chronologically she was 59 months old, so she’s now showing an overall delay of approximately 50%.  The scores themselves are between a 25% and a 75% delay, depending on the ability.  This struck me pretty hard.  I’ve known that she’s not where she should be for fine motor for a long time and have been saying this to the various therapists and administrative folks who have seen her.  I know that not writing letters or most shapes by 5 isn’t typical.  However, the tests finally caught up with me.  I suppose they finally expect more at 5 than prior to this and her scores just plummeted.  It’s not that she’s regressed or anything; it’s that she hasn’t progressed.

This together with her behavior has been a real challenge.  I’ve gone from being the parent of a child with delays to the parent of a special needs child, which for me is a very big distinction.  Before I could just pretend that she was about a year younger than she really was and that eventually she’d catch up or that being off a year wouldn’t matter in the long run.  I can’t do that anymore.  Her sensory issues have dramatically escalated.  For example, last summer we were able to take her to the circus, the movies, and other similar places.  This year we can’t even go out to a restaurant without a breakdown.  She flat out does not want to leave the house unless it’s to go to school, the family beach house, or her grandparents’ houses.  She cannot tolerate any loud noises, unless she’s making them.  Rooms need to be lit like broad daylight, regardless of the time of day.  Calling her eating style “picky” would be an overstatement.  Let’s not even get into how awful it’s been trying to potty train a 5 year old!

Speaking of potty training, I do finally have a name for the stomach problem both of our girls have.  It’s called Encopresis.   It’s a condition of chronic constipation, along with reflexive withholding of the stool (refusing to go to the potty and not even realizing that they have to poop.)  This was an “ah-ha” moment this week.  It’s nice to finally have a name for this and hopefully be able to track someone down who can help us with it.  Every doctor we’ve seen, including the pediatric gastroenterologist specialists we’ve taken them both to in two different major metropolitan areas has never once mentioned this to us.  They’ve given us the basic lectures about needing to have them do potty sits (“Every day, after dinner, have them sit on the potty for X number of minutes.” – Thanks, doc, that’s helpful….)  They’ve prescribed various doses of Miralax and FiberSure.  They’ve lectured us on making sure they are drinking enough, getting enough fiber, and so on.  However, what they fail to acknowledge is that this goes beyond typical constipation.  Neither girl even notices that they need to use the bathroom!  They don’t even feel it.  They’ve conditioned their bodies to completely ignore it!  Until they tackle the psychological part of this, we’re never going to see improvement.  For now we just keep throwing out an absurd amount of underwear (we should by stock in Hanes!) and trying any way we can think of to make them use the bathroom.  A couple of weeks ago we finally put Little Sister in underwear during the day.  She’s getting the peeing part down okay.  She has accidents about 15% of the time.  But, pooping is a whole other story!  I’d like to blame this on the Ehlers-Danlos and her hypotonia.  It makes sense that since she’s stretchy that something like this could happen.  But, Big Sister doesn’t exhibit any of the signs of Ehlers-Danlos and still has this problem, so there’s got to be something else going on.  I am going on a quest to find a doctor who can tackle this once and for all.

And as if this was stressful enough, I’ve had a difficult time handling Little Sister’s outbursts.  We’ve been at the beach all week, which is our typical week before school starts routine.  It’s our second long getaway of the summer (the first being Disney and you’ve likely already read how poorly that went.)  Going down the shore is usually low stress for her.  There are days when she flat out refuses to go to the beach, so I usually stay back at the house with her.  I love the beach, but if I don’t get down there every day, that’s fine with me.  However, I cannot handle being stuck in the house 24/7.  This week it’s been difficult to get her to leave the house at all.

Here’s the event that made me just lose it.  When we’re down here we almost always cook at home.  Saturday we decided to have lunch out.  Yeah!  I was going to get to try a new restaurant and I didn’t have to cook!  We found this nice looking Italian place in town.  We got seated and I picked out something that sounded yummy.  After ordering I noticed that Little Sister seemed to need to use the potty.  I made her come to the bathroom with me and once back there she started screaming and crying!  I’m sure everyone heard us.  Getting her to sit on the potty became a huge struggle.  I pulled her pant off and held her there, not sure why I was doing that because I knew it wasn’t going to work.  After about a minute I took her off and dressed her again and ended up in tears myself.  I just couldn’t take it anymore.  Potty training has been a disaster, her behavior has gotten pretty bad, we cannot even go out as a family anymore, and I’m not handling this well.  I ended up carrying her out of the bathroom and straight out of the restaurant, asking my husband and mom-in-law to box up my lunch and coffee.  My husband followed me out and helped me carry Little Sister out to the car, where she and I just sat in the car crying.  I’m at the end of my rope with her and not sure what to do next.

We’re meeting with her occupational therapist and physical therapist a week from today.  We’ve not had the chance to sit down with them yet and I’m hoping they have more insight on things than her case manager who meets with us to do her IEP.  Although her sensory issues are not a problem at school and have therefore been a struggle to get into her IEP, they are making life at home almost impossible.  There’s got to be something we can do.  I also ordered two books on sensory integration and they arrived just after we left for the beach.  I’m ready to seek family counseling at this point.  I’m tired of crying about this and feeling helpless.  It doesn’t help that we should be seeing her go off to her first day of kindergarten this week.  I know she’s not ready and I’m 100% certain that keeping her back a year was the right decision, but it’s still hard.

January 14, 2009

Delaying Kindergarten

This morning we met with a nice group of people at our school district to hear about the transition from early intervention to kindergarten process.  There was the supervisor of special education, a school psychologist, someone from the Intermediate Unit (that’s where early intervention is coordinated here) and someone else.

For the past couple of years we’ve been on the fence about when Little Sister would start.  This past summer we were about 90% sure that she would stay in pre-school one extra year.  Then we received the “based on your child’s birthday, she is eligible to start kindergarten in Sept. 2009” letter.  There was an option for a transition meeting.  We decided to set one up so that we could talk with the school district and ensure we knew all of our options.

Our options were:

1. Sign her up for kindergarten for the 2009 – 2010 school year and have her evaluated to determine what services she may receive.

2. Have her stay in pre-school and receive the same services she does currently (which are physical therapy and occupational therapy, once a week each) and start kindergarten during the 2010-2011 school year.

We did learn that if we sent her to private kindergarten she would not receive the same services.  They offer very limited services to these children and PT and OT are not on the list.  So, Little Sister would have to remain in a pre-school setting.  That was okay.  We’re happy with her pre-school.  Until recently, we thought we’d do what we did with Big Sister who went to private kindergarten for a year and then started public kindergarten.  We did that for a number of reasons and it worked very well for her.  But, this isn’t an option for Little Sister and we’re okay with that.  It’s more important that she gets an extra year of PT and OT than it is for her to be more ready to learn how to read.

After they explained our choices, they asked about Little Sister’s strengths and weaknesses.  I am not sure we gave them everything we could have if I had thought this one through before hand, like I do before IEP (Individualized Education Plan) meetings.  I think we gave a pretty accurate portrayal of what she can and cannot do.  Her hypotonia (which is caused by Ehlers-Danlos Syndrome, hypermobility type) affects her in a number of areas.  While she’s on track cognitively (she knows her letters, numbers, asks great questions, was quizzing me last night at dinner about what starts with the “ch” “t” etc. sounds, and so on), there are many gross and fine motor things that she just cannot do.  She’s 4 and a half years old and not potty trained (still in pull-ups, rarely uses the potty).  That’s certainly our biggest problem right now (I cannot imagine her going off to kindergarten without being potty trained!)  She cannot sit still (moves constantly to keep her balance.)  She doesn’t have a lot of endurance (tires very easily and her skills rapidly decline.)  She’s just starting to alternate feet when climbing stairs and forget going down a full flight of stairs without hesitation, holding hands, or going down on her bottom (thankfully we have a split-level house with short flights of stairs.)  Her fine motor isn’t great (she switches from right to left back to right again when her hands get tired; she’s just now learning to draw basic shapes, but little else; she’s working on pre-writing skills using Handwriting Without Tears, which is actually going pretty well!)

They asked what kind of therapy she gets now and how often.  We said that she was just discharged from private OT since we were supposed to be doing aquatic therapy there, but they lost access to the warm-water pool.  They did ask if she has MAFOs and we said that she wears DAFOs (Dynamic Ankle-Foot Orthotics) and that she’s switching to Sure Steps (should allow her to have more movement in her toes.)  They also asked about social interactions.  She’s not a budding socialite, but she does okay with friends.  We also talked about her developmental milestones (walked at 26 months, etc.) and the medical testing she’s had (brain and spine MRI, EEG, genetic testing, etc.) and we talked about her Ehlers- Danlos diagnosis.  I’m sure they asked some other things, too, but I’m drawing a blank.

They explained how kids qualify for services.  There are 13 areas (they didn’t list them, so I’ll have to look them up.)  They did say that since she doesn’t qualify for speech (that was dropped last summer when her speaking really improved), that she’ll have to qualify based on her medical condition.  Thankfully medical is one of the areas.

They asked if we wanted to proceed with the evaluation process.  We could always change our minds and hold her back a year at any time (preferably by the kindergarten registration cut off of May 15th so they would have adequate time to do any evaluations.)  If we went forward, they’d meet with her teachers and/or therapists for input, watch Little Sister in her classroom, do evaluations, review existing paperwork, etc.  At this point we told them that we think it’s best for Little Sister if we wait a year.  I couldn’t tell based on our conversation if they thought she’d qualify for services or how many she’d be able to get, but I did get the feeling that they thought we were making a good decision by deciding to delay kindergarten a year.

While I’d love to know what the evaluators would think of Little Sister, I really don’t want to waste anyone’s time.  My curiosity can wait a year.  It seems that Little Sister will certainly benefit from waiting a year.

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