Life with MS & EDS

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.

December 11, 2008

Trying to Get in Alignment

I had my first ever chiropractor appointment yesterday. I’ve been complaining of hip and neck pain, so my husband suggested making an appointment with a dr. his family has used for years. Other than getting slightly lost on the way there during a rainy day and a longer than expected wait, it was a great appointment.

It was confirmed that I am very bendy. It was kind of weird to have the confirmed by a chiropractor. My range of motion is far greater than the average adult. It’s even greater than I thought in my hamstrings, which I always thought were tight. The best part was that the dr. was very knowledgeable about MS and EDS! I got a lot of good advice, but was pretty tired, so hopefully I can remember it.

I learned:

  • I shouldn’t have Chinese food (avoid MSG and high sodium foods, including those with soy sauce)
  • Sushi is a good thing
  • Wild salmon is better than farmed
  • I shouldn’t be walking around barefoot all the time (he asked if I wear supportive shoes and it occurred to me that I spend the majority of time at home and I don’t wear shoes in the house)
  • I should be taking fish oil supplements that are higher in docosahexaenoic acid (DHA) and that aren’t processed using alcohol
  • That repetitive exercises are best (e.g., rowing machines, elliptical trainers, etc.) and that I should work up to 30 min. a day, 4 days a week; starting at 10 min. per day at the lowest setting on the elliptical is my goal (remembering to stop when tired and not push it too hard)
  • I should try to get back to doing water aerobics, but water temp is a challenge for me. It can’t be too cold (EDS – feet cramp up) or too warm (MS – aggravates symptoms). (I’m still searching for a pool that has evening classes if anyone knows of one. The pool I usually use is currently closed.)
  • When doing yoga, focus on balance
  • Keep using my headset when on the phone so that I don’t strain my neck
  • Walking on the boardwalk is much better than walking on cement (but I already knew that one)

While he wasn’t able to do an alignment where I need it most (the top of the spine called the “cervical spine”), he was able to pop the top rib back into place (trying not to think about that since it grosses me out.) It popped back in place very easily, which makes sense given my connective tissues issues. He was also able to help better align my hip (that had something to do with the sacroiliac joint or something that sounded like that, but I don’t recall the details.) Unfortunately, the dr. is limited by what he can do on someone with EDS. But, I’m extremely glad that I found someone who knows about treating someone with EDS and MS and knows what he can and cannot do. He even does the MS 150 each year. I’m seeing him again next week. It’s a good thing Little Sister’s extra therapy sessions are ending this month because it seems like I am going to have more of my own appointments going forward.

November 29, 2008

Lil Sister’s Hypotonia

I’m not sure whether to start with the MS or the EDS, so I suppose I’ll do it in diagnosis order and that involves starting with my little one. Little Sister is almost 4 and a half years old now. When she was 9 months old she was diagnosed with Hypotonia (low muscle tone.) She could not sit up, did not crawl, couldn’t put weight on her legs, and would not lay on her stomach. The base of her spine appears to come to a “Y” shape and has two dimples on either side, but otherwise nothing looks different about her. Other than hyperemesis (major nausea) during pregnancy and labor so quick a resident had to play catch ten minutes after arrival at the hospital, her entry into this world was uneventful. The pediatrician on call who saw her first did ask if there were any neurological conditions in our family history (because of her back), but we didn’t know of anything.

She began physical therapy and occupational therapy at 10 months old and we started looking for answers. We saw a neurologist at the Children’s National Medical Center in DC. The first things they had to rule out was Cerebral Palsy (CP) and Spinal Bifida. Those were pretty scary things to have to consider. Lil Sister had a brain and spine MRI which thankfully came back clean. So, her brain and spine were normal, but something was causing this developmental delay.

Therapy continued and progress was slow, but she never regressed. Thankfully her cognitive development was on track. That was rather comforting. We added speech therapy to deal with oral-motor issues. Once she got tubes in her ears and could hear again, her speech began to improve although she still drooled a whole lot and didn’t chew food correctly.

Many things occurred over the next couple of years, too many to capture here. She continued to have sensory issues and low muscle tone. She was also very bendy. About a year and a half ago she developed a series of very high fevers every 6 weeks or so. We determined that her tonsils and adenoids had to be removed. Once they came out (last December), the fevers went away and her speech (once she decided to talk again) was fantastic! The drooling stopped, too. The change was dramatic enough that she was dropped from speech therapy.

So, what does any of this have to do with EDS or MS? I’m getting there. A couple of years ago we left the DC area and came to the Philly area where she started seeing a fantastic neurologist at the Children’s Hospital of Philadelphia (CHOP). We ruled a few more things out there, but she remained “loosey goosey” – her neurologist’s term, not ours! Eventually her Neuromuscular Clinic doctors were at a loss and sent us over to the Connective Tissues Clinic. There’s only one doctor in that clinic now, so it took a while to get an appointment. We filled out the 12+ page questionnaire and had a fun time asking family members somewhat strange medical questions. We took Lil Sister to see the doctor this past June. All of our family history (actually, all of MY family history) pointed to her having Ehlers-Danlos Syndrome, Hypermobility Type (Type III).

EDS made complete sense! Once I started reading about it, it explained over 90% of my medical issues. I was always very bendy and could bend my hands and fingers in ways that could gross other people out. Of course bendiness of the joints eventually pisses off the muscles and tendons, which explains my DeQuervain’s (like carpel tunnel, but in the thumb area.) EDS also explained why Lil Sister scooted instead of crawling and didn’t walk until 26 months old, among other problems.

EDS was a diagnosis I handled really well. It explained symptoms I already had. Yes, there could be heart valve issues (my grandmother did from what we now know was EDS), so Lil Sister and I had our hearts checked to establish baselines. Both of our tickers look great! We have been advised to have our hearts checked every 3 years or so and Lil Sister will need hers checked more frequently during rapid-growth periods (puberty). Thank goodness she has state medical insurance in addition to our regular coverage! Also, I could get arthritis earlier in life, but given my family’s history I expected that. The kind of EDS we have is very manageable and Lil Sister just needs to keep getting stronger, take minor precautions, and she’ll be fine! The EDS diagnosis was a relief. We could finally stop searching for answers and just focus on treatment and moving forward.

By the way, there’s a fantastic Hypotonia Board over at iVillage full of amazing parents talking about their experiences with their fantastic children that is definitely worth checking out if you have a child with developmental delays.

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