Increasing My Daughter's Energy Level - the Glycemic difference

I tend to write a lot about food because I think it is so important to our overall health.  I think it is especially important to kids with Hypotonia who tend to have tend to have low energy levels.  My daughter's energy levels have been very low over the past year and I have been trying to figure out why.  Even people who are familiar with Hypotonia and the symptoms comment on her low energy and stamina.  It always made me worry that something else was going on.....

I tried a gluten free diet after reading a blog and how it had helped a child with Hypotonia.  I didn't notice a difference in my daughter's muscles but noticed a big difference in her energy level and have been trying to figure out why.  Well, with the help of a friend I think I have cracked the case!
My friend suggested I try organic wheat.  She thought perhaps she was having a reaction to the pesticides.  So I switched to all organic wheat products.  I didn't notice a difference right away but I didn't expect too.  Then after she sent me an article about bread I started giving her sprouted bread and noticed a difference right away.

 http://foodbabe.com/2014/02/24/healthiest-bread-on-the-market/

I immediately investigated.  The packing on the bread said a low Glycemic Index.  Honestly, I thought this sounded like a fancy marketing word and was not taken in by it but decided to look it up.  What I found out amazed me.

Turns out not all carbs are created equal.  We process some carbs much faster than others.  The reason for this is there are two different types of starch.  Amylose and Amylopectin.  We convert Amylopectin starch to sugar much faster than Amylose starch.  If you have high blood sugar the Amylose starch is much better for you.

My husband has a family history of type II diabetes.  In fact when we were first married he had high blood sugar levels and was considered pre-diabetic.  Since then we have changed our diet and his blood sugar levels are on the low side of the normal range.  I think since my husband issue had been solved and we were so busy looking for other issues for my daughter I hadn't considered her blood sugar!   She eats pretty much what we eat so if my husband isn't having an issue with blood sugar why is she?

I don't know the answer to that.  I can only speculate that her inactivity is having an impact.  Since figuring this out I have reduced her carbs and gone back to the "High Amylose" carbs.  We are on day 2 and her energy level is great.  She gets up in the morning and wants to play.  She comes home from school and wants to go outside (it is finally warmer in the NE yay!). This is a stark contrast to before.  She would get up in the morning and plop in front of the tv.  She would get home from school and plop in front of the tv.  I thought this is just par for the course with Hypotonia but I was wrong.  She still tires from activity and this is normal but it is not like before.

Keeping up this diet I can see will be challenging since there are so many carbs for kids and there are just so many times I can get away with veggies and hummus for snack!  But now that I know the driving force behind the issue I will have too.  It will impact her overall health!

Support Options for Kids with Hypotonia

Hypotonia has caused my daughter to have flat feet.  We don't see an orthopedist because her gait is not that bad and seems to be improving with proper shoes and PT.  I was advised on shoes and even orthotics.  I was also told that building her calf muscle will improve her arch and I have to say it has worked.  She is still very flat footed but I see a huge improvement in her gait.  In case you are wondering she wears New Balance sneakers 99% of the time.  The rest of the time she will wear a Jumping Jake or Pediped dress shoe.  Oh, and you can't buy New Balance sneakers off the rack you really need to find a store to get a proper fit to support the arch.  Not all of their sneakers are created equal but when you find the right one it is great! www.newbalance.com

Since I had been advised on the feet it never occurred to me that their might be options to help support other issues (mainly sitting in a chair).  I figured if there were things out there someone would have told me.  Well, a friend who used to work in Early Intervention sent me a link to a website with such things. www.funandfunction.com
She had suggested a device that might help my daughter sit in a chair.  The item would have been a bit embarrassing in a school setting but wondered if it would helpful at home.  I asked her PT about it and she wasn't familiar with the items and didn't have any feedback.  That wasn't really helpful but did get me thinking.
My daughter is not the only child that has trouble sitting in a chair so there must be something that can support her at school.  I called her old PT and she suggested a wedge.  She said it helps keep their feet on the ground and offer stability.  Great!

I continued my research and came across this article that suggests PT alone is not enough.  It suggests various support garments to help the core.
www.karenpapemd.com/index.php/core-support-options
I often feel that going to PT once a week is not enough but am always left with the question of What to Do?  My daughter won't  brush her teeth without an argument so honestly I don't have the energy to make her do sit ups everyday!  I often wondered if there was something to "remind" her to hold in her stomach muscles.  Turns out there is...  And your insurance might even pay for it!
Check out the article it is interesting and informative.  I am going to do some more research before I actually purchase one of these but thought it would be helpful to share.

Are kids with Hypotonia more Emotional?

My daughter is emotional.  And when I say emotional I just mean emotional.  She does not have an emotional behavior disorder she just has heightened emotions.  They are good and they are bad.  She is a very loving kid.  She gives hugs and says sweet things all of the time.  She cries, sometimes with purpose and sometimes even she doesn't know why.  And we can't forget about the anger!  When she runs cold it is Mt. Everest!  She is an only child so I don't have anything to compare her too but often wonder if this has anything to do with the Hypotonia.
Last year I met a mother of 4 and her daughter had Hypotonia.  She made a comment to me about how emotional her daughter was and it got me thinking.  This mother of 4 obviously has 3 other children to compare her too and she is the only one who is this emotional so perhaps it has something to do with Hypotonia?  I don't know.
Are kids with Hypotonia more Emotional?  Is this just par for the course?  It doesn't make any sense that they would be related but curious.
I would love to hear from other parents.

Hypotonia Treatment Woes

I have blogged in the past about getting help for kids with Hypotonia.  Dealing with the school districts, etc.  Well, I have always felt fortunate that we have insurance that covers my daughter's physical therapy and I don't have to rely on the school district.  One thing I hadn't thought of, what if physical therapists stop taking insurance?

When I found out about my daughter's Hypotonia, the first thing I did was look for a PT.  I found a great one right away.  The practice only focused on Kids, the space was fun and the therapist was fantastic.  We had to drive a half hour to get there but it was well worth it.  After about a year she informed me she was closing her practice.  She was still doing home visits but she was not licenced in our State so she could no longer treat my daughter.  She felt very bad about the situation.  I on the other hand didn't see the big deal.  I was disappointed of course but understood the decision and thought we will just find someone else.  No problem.  Well, it turns out it was a big problem!  She recommended a place that treats children but I could not get a time slot after school and the only option was to take her out of school once a week (this place was a 20 min drive).  I looked further and found only 1 other PT that treats kids in our area!  I couldn't believe it!  Everyone tells me that Hypotonia is a somewhat common problem.  I find it curious why so few PT's treat kids.

So we are seeing the new PT.  My daughter loves her and is responding to the exercises.  Great!  The other day she informed that they are considering no longer taking insurance.  Apparently, they don't take it for OT and Speech.  She said dealing with the insurance companies is getting too time consuming.  I haven't heard any more about it but wonder how much more this will cost.  Will getting private PT become too cost prohibitive?  The schools are also maxed out on budget so even if they cover her PT will it be enough?

When I went to the school district they told me the issue was medical and my insurance will cover her treatment.  What if insurance doesn't cover the treatment?  Then what?  I am going back to the school to have my daughter re-evaluated and for now insurance is covering her treatment...  The situation just got me thinking that probable in the not so soon future that won't be the case.

What options will there be to treat these kids?  It seems that current government legislation is promising to improve our children's future but I only see it getting worse.  I don't know anyone that is benefiting from the current insurance changes and the Core learning policies seem to eat up already shrinking budgets in our schools.  This means less support for the kids that are on the edge.  The only way to get help is to be on the bottom or the top.  What about the kids in the middle?  Don't they deserve our help and support.  They are now the most at risk because they are becoming the forgotten.

I will keep fighting for my daughter because I can and I have too.  I worry about a day that, it is not enough and think about the kids that don't have anyone to fight for them.

Gluten Free Diet - Part II

I put my daughter on a Gluten Free diet and am I am sorry to say it did not eliminate her symptoms of Hypotonia.  I didn't think it would since I know the reason for her Hypotonia but I was hopeful.  One thing I did notice was an increase in her energy level.  She seemed to have more energy and her mood was great!  I don't think the lack of Gluten was the reason since I saw nothing else change.  I do think it did have something to do with what she was eating.

I reached out to one of my friends who is a nutritionist.  I thought perhaps it had something to do with how her body processed wheat.  Not necessarily that she was intolerant or allergic but perhaps she converted it to energy or sugar too quickly and left her depleted of energy.  My friend suggested something else.

She suggested that perhaps she was sensitive to the pesticides in the wheat she was eating.  She asked if I fed her exclusively organic.  I do not.  I do the best I can but don't buy everything under the sun organic and I certainly don't buy organic flour.  I looked at the Gluten Free products I was feeding her and did notice that most of them were organic.  I also do buy a lot of organic snacks.  I also buy organic corn products because corn is the number one GMO crop.  So why don't I buy organic flour or other wheat products?  I cannot answer that but I am going to start buying more organic products.  Especially wheat.

Even if the switch does not increase her energy I will feel better about what I am feeding her.  After all her spikes and dips in energy may have nothing to do with what she is eating but just a symptom of Hypotonia and her Chromosomal disorder.  I can control what she eats so I tend to focus on it.  After all eating well, can't hurt!