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!

October 24, 2010

Tucks – A Rebif Tip

Filed under: Uncategorized — by mseds @ 8:29 pm
Tags: , , ,

I’m so sorry I’ve not written much lately.  I’m quite far behind in things I’ve wanted to post.  I got a great tip about Rebif site reactions that I just had to pass along.  If your injection site gets red and itchy, get Tucks pads and rub it on the spot.  It stops the itching immediately for me and keeps the itch away.  It’s the only thing I’ve tried that works for me, so I had to share this tip!

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