Dyspraxic Journey

Monthly Archive: December 2015

Why all this talk about gut?

I realize that it may seem strange to dedicate a decent amount of this blog to my son’s gut issues. So I thought it might be helpful to provide some more resources and context regarding why I have taken this route and spent so much time mentioning my son’s gut over the past year. All the therapies are crucial and I would never suggest just focusing on your child’s gut if they have neurological problems; however, I think it is crucial to consider and explore if your child also has digestive issues, as well. For CB, he had chronic loose stools since he was a baby and through blood work,it was identified that he had numerous vitamin deficiencies, selective IgA deficiency, and borderline iron anemia despite eating balanced, healthy meals. I knew I wanted to help CB’s issues in the most natural way possible. Through diet changes and supplements, the selective IgA deficiency down-graded to low IgA so it no longer classified as an autoimmune condition, all vitamin and iron levels were within the normal range, and his stools were normal most of the time. I’ve noted throughout my blog the specifics but some only took a couple of months to change while others took about a year. In this same time frame, CB has made tremendous jumps with his speech, social interactions, core strength, attention, coordination, appropriate play, and become potty-trained. I believe that my son’s blood work came back with so many issues b/c he had a leaky gut.

What is a Leaky Gut?

The practitioners at SCD Lifestyle provide a good explanation:

“The term Leaky Gut Syndrome is used to describe the condition of “Hyperpermeable Intestines,” a fancy medical term that means the intestinal lining has became more porous, with more holes developing that are larger in size and the screening out process is no longer functioning properly. The fallout results in larger, undigested food molecules and other “bad stuff” (yeast, toxins, and all other forms of waste) that your body normally doesn’t allow through, to flow freely into your bloodstream.

So now that we have the general essentially meaningless definition out of the way let’s find out what is really going on…

The intestinal lining is the first mechanism of defense for our immune system. The outer layers of intestinal cells (epithelial) are connected by structures called tight junctions. At the tips of these cells are the microvilli, which absorb properly digested nutrients and transport them through the epithelial cell and into the bloodstream. During the normal digestion process the tight junctions stay closed forcing all molecules to effectively be screened and only pass into the blood stream through the mucosa cells (think of them like bouncers at the front of a classy bar). For reasons we will discuss later, these tight junctions can become “open” or permeable allowing un-screened molecules to flow directly into the bloodstream (think of it like a fish net with very small holes).”

By making the dietary changes, this has allowed my son’s intestinal wall to heal or mostly heal. What I don’t know at this point is 1) Can CB eat gluten again? 2) If so, do we need to limit it? 3) Or will he need to remain gluten-free his whole life? 4) Will the soy allergy go away? 5) By healing the gut, can it remain healed? 6) Even though we are not seeing any issues with slowly introducing dairy, are there internal problems forming that we can’t see? (more…)

December 31, 2015 Allergy, Diet, & Supplements, , , , 0 Read more >

Why saying CB has Global Dyspraxia helps Me

CB does not have an official diagnosis of global dyspraxia or DCD (Developmental Coordination Disorder). He actually doesn’t have any official diagnosis other than the loose term of speech motor disorder. For one reason, it is hard to get a diagnosis of DCD prior to the age of 5 and some doctors won’t even diagnose till around 7. CB will be 5 next month. Another reason for the lack of diagnosis is that only certain doctors will prescribe a dyspraxia/DCD diagnosis. Many doctors here in the US are not familiar with the diagnosis. The 3rd reason deals with what getting a diagnosis would actually do for the child or family. Here in the US, neither DCD nor dyspraxia are recognized by school systems as disorders so it can still be a challenge to get services even with the diagnosis. On a side note, if you have a dyspraxia/DCD diagnosis for your child, your child should qualify under the OHI (Other Health Impairment) section for special education services. Besides for services at school, it could be beneficial to have the diagnosis for insurance purposes. Insurance is so far covering the therapies CB needs (minus the high deductible and co-insurance…fun) so that is not an issue. For school, we are working around the lack of a dyspraxia diagnosis by getting a ADD/ADHD diagnosis so he would qualify under OHI.  We are also getting an OT eval performed for CB. I feel that at the moment, CB will get the same evaluations and therefore access to the same services he would get if he had the dyspraxia/DCD diagnosis by taking this other route. It would be great if getting a dyspraxia/DCD diagnosis would automatically entitle children to certain special ed services like children with an autistic diagnosis get.

Now, for me, stating that CB has global dyspraxia helps me to have a 2 word description to describe CB’s special needs. I don’t have to go into all the detail about all the different needs he has i.e., speech, fine motor, attention, motor planning, visual tracking, sensory, etc. The term global dyspraxia serves as a great umbrella term that encompasses these conditions. To some parents with autistic children, I state that CB is just off the spectrum. There are a lot of overlapping traits for dyspraxic children and autistic children. When CB was 3, we even took him to a neurologist to confirm he is not autistic.  The neurologist stated that he did not believe CB was autistic but that he possessed enough symptoms that he could diagnose him as autistic if we needed it for insurance purposes. We opted not to get the diagnosis but to keep the option open if we needed it. Many of the kids that CB really connects with are autistic children and in many situations, the parents of autistic children have assumed CB is autistic. As CB has grown, several of his autistic-like symptoms have faded. I know for sure at this point in CB’s life that he is not autistic but dyspraxic. I am not big into labels but this is one label that has really helped me understand my child even better, my son’s teachers understand him better, me describe my son to others so they better understand him, and give me a more focused approach to finding and choosing appropriate therapies and education. Having this label, global dyspraxia, helps make his future seem less scary to me.

December 17, 2015 Worries, Fears, & Ramblings 0 Read more >

Personal Navigator

So for us, we have had help along the way. Not like there has been a person that has helped guide everything we do, but there have been people providing tidbits of help along the way. You know what, I would absolutely LOVE to have a person who guides us through all the steps from identification of special needs to therapy suggestions to diet suggestions to test suggestions to specialist suggestions to best help for working with schools to the questions to ask at each phase to when to not worry and just be. The best name I can come up with for this role is a Personal Navigator. If this person exists, please private message me :).

I think one of the biggest issues is knowing what questions to ask and how to ask them. I wish there was a place to go to get most of the answers and a place to go to help calm your nerves and to help you not to worry. Why does this journey have to feel so unique, complicated, and sometimes lonely? I want others to not have to feel this. I dream that personal navigators will be more common and that these people, whatever their credentials are, will be easily accessible to parents with children with special needs regardless of financial means, physical location, or physical need.

 

December 3, 2015 Worries, Fears, & Ramblings, , , 0 Read more >

Holistic/Biomed Visit

So far on this journey, the main driving force to figuring everything out from therapies, specialists, supplements, diet, etc. for CB has been me (with a big help from my hubby). I understand that this is how our system is set up. From one perspective, it is quite empowering b/c there are so many options and opportunities for our children. We are no longer in a day and age where we find out our child is unique and we know our child will not have the same education and opportunities as typically developing children. Now don’t get me wrong, there are difficult times and struggles and extra challenges, but our children’s future is not set in stone. We get to help them in so many ways and they get to be whoever they want to be while playing an active role in our society. We are blessed in that way. On the other hand, it can be extremely overwhelming trying to figure out how to best help our children, how to get started, and how to sift through all the options from therapies to specialists (gastroenterologists, neurologists, child psychologists, behavioral psychologists,nutritionists, DAN doctors, holistic practitioners, Functional Medicine doctors, geneticists, etc.) to traditional medicine to biomed to diet changes and on and on. Plus, you have to consider what is covered by insurance and what costs will be totally out of pocket. I am fortunate that I am able to stay home with my kiddos and have the time and means to make the choices we feel will be best for CB. I hope one day that things will be easier for parents with children with special needs. I hope they will not feel lost and overwhelmed and that the resources will be easier for them to locate and access. I hope more practices will be recognized as beneficial and will be covered by insurance. (more…)

December 3, 2015 Allergy, Diet, & Supplements, Tests & Evaluations, , , 0 Read more >