Dyspraxic Journey

Allergy, Diet, & Supplements

Impulsivity and Reflected Emotions

I’m trying to figure out how to even start. This last week and a half have been quite hard. Poor CB has been sick with a fever that lasted for 4 days, plus a cough, runny nose, sneezing, and increased impulsivity. The impulsivity started before the fever and it has grown to such a degree that we opted to remove cow’s milk from CB’s diet again. The decision also took into account reviewing his latest blood work and past stool test to determine that his gut does not seem to be performing at optimal levels due to the high fecal fat content and the lower vitamin levels of zinc, D3, and iron saturation. Goat’s milk is still currently in his diet and he is eating goat’s milk kefir in the mornings to help combat the antibiotics he is taking. He still also gets his probiotic at night. Since he has been prone to yeast infections in the past when he takes antibiotics, I try to ensure to restore with good bacteria. Olem and I still feel that diet can make a big difference and are just trying to see if there is an optimal diet that suits CB best. There are always so many factors to consider that it is typically not one thing that we can pin such behavior changes on. Additionally, some of CB’s therapies and his preschool are coming to an end. He could be feeding off my and/or his teachers’ energies. He can be very sensitive to others feelings and we see his behaviors reflecting/modeling back others emotions. We talk with CB about some of his therapies and preschool ending but CB doesn’t say much or respond much to these comments. Who knows if this is affecting him more than he can show us.  (more…)

May 26, 2016 Allergy, Diet, & Supplements, Worries, Fears, & Ramblings, , , , , 0 Read more >

Update on Latest Blood Work

CB’s last round of blood work was 6 months ago. Since the last blood work, we have made several changes to CB’s supplements and diet. We stopped well just about everything at one point, except for the probiotics. For the last 3 weeks, we added digestive enzymes and fish oil back into his schedule. For the last two weeks, we added D3 back into his morning routine. Dairy was incorporated about 3-6x a week, mainly through cheese, yogurt, butter, and some ice cream, for about 1.5 months. We wanted to see if the dairy was impacting his vitamin levels.

We got his blood work back this week and his body was showing the beginning stages of declining iron, vitamin D, and zinc levels. I believe all of these are related. On a positive note, his IgA was 1 number below the normal range…wow! I can’t believe that he might actually have normal IgA levels soon. His Vitamin E level was still high but lower than the levels reported over the last year or so. I think the high Vitamin E levels are still related to fat absorption or fat breakdown issues. We will see if the enzymes help the matter. I thought the L-Carnitine should have helped that, but the last test didn’t reflect that. We stopped the L-Carnitine awhile back so I don’t know for sure. His vitamin K, homocysteine and magnesium levels also looked good. So now, we have to figure out why he has declining iron, Vitamin D and zinc levels. Unfortunately, since we stopped the Vitamin D3 for awhile and we added in the dairy, we can’t say for sure whether the removal of D3 or the addition of dairy caused this. We are obviously assuming it is related to one of these things, but it is always hard to know for sure since we always make several changes between the blood work dates. We have decided to test again in 2 months with daily Vitamin D3 supplements and zinc incorporated for a week or so and to keep dairy in his diet. If any of the levels remain low, then we can assume that dairy is the culprit and to cut it out and test again in another 2 months or so. If all levels return to normal, then we are going to assume that CB needs D3 supplements and that dairy plays an insignificant role. For the past tests, we saw the vitamin D, zinc, and iron levels continue to grow while D3 was a regular supplement and dairy was not a part of CB’s diet. (more…)

May 5, 2016 Allergy, Diet, & Supplements, Tests & Evaluations, , , , , 0 Read more >

Behavior – When to Worry and When to Investigate Further

I think having a child with special needs makes me, at least, hyper-aware of behavior changes. I am guessing this is the same for other parents of children with special needs. This hyper-awareness identifies a change; however, it does not necessarily result in an understanding of the change. It probably makes us more paranoid and triggers the ‘how do I fix this’ response. It is hard to know when the change is just a typical phase that will correct itself on its own or the result of some bodily issue like a bacterial infection, head pressure, or stomach problems or a social problem at school or home or some other external or identifiable internal source.You don’t want to over-react and spend too much of your time worrying about and researching something that is really just a phase. However, you don’t want to just let it go if there is something you can do to help your child change the behavior.

For CB, lately, he has really been expressing most things with strong emotion. For example, a question like “what would you like for snack?” could trigger “I WANT A BANANA.” with him yelling and sounding harsh or it could even trigger “Your are NOT NICE.” If we ask him to reply again, he will say his response calmly and many times more polite. Other things are triggering full on tantrums like “It’s time to go to bed.” or “Let’s change clothes.” My gut tells me there is something going on gut-wise. We have performed so many tests and it kinda bites to have to follow-up some of those with more tests but that is probably what we will need to do.

I think first steps are to move forward with the enzymes we purchased about a month ago and see if that helps with his high fecal fat content, tooting, and maybe even behavior.

April 12, 2016 Allergy, Diet, & Supplements, , 0 Read more >

Neck Odor Update and 23andMe

CB’s neck odor has persisted. I mentioned this in an earlier post from the fall, Weekly update on CB late October 2015. We thought it was related to starting the L-Carnitine; however, that was removed from his supplement schedule 3 weeks ago. The smell only comes from his neck and smells something like bo or a fishy smell. It just depends on who you ask. You only smell it if you are within inches of his neck, fortunately. The other interesting thing is that the smell goes away during the bath, and resumes within minutes afterwards. We have decided to greatly reduce CB’s supplement intake for the moment to see if this might be a sulfation issue caused by the b vitamins in some of the supplements. We also thought he could use a break from the fish oil since he has taken that without a break for almost 1. 5 years. CB’s holistic practitioner wants him to start Allergy Rescue as he thinks CB’s shiners are related to allergies. He also wants him to start digestive enzymes to help with the fat absorption issue I mentioned in my last post Parasite Detox with Humaworm. The current plan is to wait a week or so after the parasite detox has completed and start adding some of the supplements into the schedule one at a time. Fingers crossed, we figure out the neck odor issue. (more…)

February 25, 2016 Allergy, Diet, & Supplements, Tests & Evaluations, , , , 0 Read more >

Parasite Detox with Humaworm

Are we crazy? Well, yes, by the way, we are quite crazy for performing a family parasite detox. You might ask, why would we even think about a parasite detox? Our primary driving force in this family is CB. We got the results back from the comprehensive stool analysis and it was noted that Dientamoeba fragilis (d. fragilis) was found in CB’s stool and high fecal fat and protein products were identified which signaled fat absorption issues. This info combined with the fact that CB’s impulsive and compulsive behavior had ramped up tremendously and he had persistent shiners under his eyes, prompted me to consider that a detox might help his system perform better. Also, parasites can spread easily so we thought if one family member has one, then it is likely other family members have it. We decided on Humaworm as the detox of choice based off the reviews, the fact there are doses for all ages, and the ingredients for the children’s version were acceptable.

Well, a detox isn’t much fun. I know this is so hard to believe :). The detox is for 30 days. For the most part, Olem and I are fine. It is annoying that we have to take 2 pills 30 minutes before we eat or 2 hours after we eat and we are supposed to take them every 8-12 hours. We mostly abide by these rules. It is sometimes 14 hours between pills due to meal timing and sleep. During the first few days, the detox produced quite a bit of gas for the entire family. It tapered off a bit by the 4th-5th day. Our eyes have been off-and-on bloodshot. Stool formation for the family has been impacted. The pills can easily give you heartburn/indigestion so you have to ensure to drink enough water when you take the pills and to keep water handy nearby. I thought I had strained my back one afternoon from lifting HB too high. The pain went away and resumed 2 days later. I realized that it was actually my left kidney hurting. I drank extra water and the pain went away. This Humaworm stuff is definitely interesting. (more…)

February 25, 2016 Allergy, Diet, & Supplements, , , 0 Read more >

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 >

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 >

ARD Updates and Upcoming Biomed/Holistic Practitioner Visit

Let me just say that things are going well..oh, except for both my kiddos getting croup and my husband working to overcome his sickness. So, I guess I should say that the ARD we had on Tuesday went really well and tomorrow CB will have his first visit with a highly-recommended biomed/holistic practitioner, yay. To start, at the ARD meeting we had at CB’s school, I really felt like I was a part of the team and that my voice was heard. The next steps were exactly what I was hoping for. Wow, that is so strange to say. I really expected more push back. We didn’t actually make any changes to CB’s current IEP (Individualized Education Plan), but I didn’t expect to. This was meant to be a meeting for me to share my current concerns and to see if we could get further evaluations performed so we will get a better picture of the challenges CB faces. This will help get some of the additional supports CB will need in a general education classroom. They provided me some easy steps to get CB diagnosed with ADD or ADHD without visiting an expensive specialist so he would classify as OHI (Other Health Impairment) , in addition to the Speech qualification he has, in his IEP. Now, do I think CB has ADD or ADHD? Well, I think it is still too early to tell. Is it just a part of the Dyspraxia or is a co-morbid issue? I am definitely not trying any meds to help with his focus, at least for any foreseeable future. I am however wanting to get additional supports at school in place so he will have help with staying on track, completing assignments, and being redirected. Our school, like most schools here in the US, does not recognize Dyspraxia as a learning disability and because of this, you have to get supports in place via whatever route is available to you. For CB, the main things are for him to get help with his speech, attention & focus, and fine motor skills.   (more…)

November 19, 2015 Allergy, Diet, & Supplements, Education, , , , , 0 Read more >

Motor Cognition Lab Testing Results & Nutrition/Supplement Updates

The testing at the motor cognition lab went well. CB was easily redirected and tried to a certain degree on all the activities/tasks requested of him. I got the chance to observe the testing and was impressed with CB’s skills on the verbal component of the testing, his tossing skills, and with some of the comparison components of the non-verbal portion. Prior to the moment of testing, we were unaware that administration of an intelligence test was planned. Many times intelligence tests may not accurately reflect your child’s mental capabilities when they have verbal difficulties and/or motor-planning issues.  Since CB is younger than most of the kiddos they test, there were only 2 tests they administer that applied to CB. One was an intelligence test, Kaufman Brief Intelligence Test, 2nd ed. (KBIT-2), and the other was the standard test provided for evaluating motor skills for a child suspected of DCD (Developmental Coordination Disorder), Movement Assessment Battery for Children, 2nd ed. (MABC-2).  We also completed a parent response test related to his sensory needs. Some positive findings were that the intelligence tests prove that CB’s motor skills are not due to a lack of intelligence and that the researcher was impressed with the progress CB has made since we last talked. We knew that CB is an intelligent boy and that his motor-planning issues are not related to a mental deficit. It is nice to see that reflected in the testing, as well. The results of the motor test still conveyed a severe issue with motor skills, but the researcher felt very optimistic about his suspected prognosis. She wants to test him again around his 6th birthday and she thinks the gap between his skills and a typically developing child’s skills will more closely align. She also thinks CB will eventually be mostly indistinguishable from his typically developing peers. This is all fantastic news! It doesn’t mean we are able to lay off any of his therapies or diet restrictions but what it does mean is that the therapies and diet ARE HELPING!

(more…)

October 8, 2015 Allergy, Diet, & Supplements, Tests & Evaluations, , , , , , 0 Read more >

The kiddos started school and I am the one having the hard time, is it just me?

I was really looking forward to CB’s pre-k and HB’s mother’s day out program starting up so the kiddos would get back into their new routine. The summer chaos had settled in and there was no question that a routine would be great for all of us. CB had a lot of therapy changes and some additions so I was anticipating how it would all go. All of the new changes seemed like wonderful enhancements to CB’ learning and development. And you know what, the new routine and programs have been fantastic for CB. He is progressing well and has been playing with HB better than ever. So, the big question is, why is this tough for me? All this positivity should be beaming directly into my being and helping me to shine, as well. Unfortunately, this has not been the case.

Part of the matter boils down to me not taking better care of myself and another part is what to do with some added no kid time? I haven’t put any focus on either of these. I therefore have not eaten great in between shuffling the kiddos everywhere and have filled my free time w/frivolous things. I just finding myself not wanting to do anything when I have a free moment. You always hear about classes, articles, presentations, and on and on about how parents and especially parents with children with special needs need to make sure to take care of themselves and to make it a priority. Honestly, when you are in the thick of it and are feeling weighed down. The thought of taking care of yourself and making it a priority just sounds like work and more stress.

The realization that more needs to be done to take care of myself should help motivate me to get back on at least a somewhat regular exercise schedule and to make lunch meal prep for me, as well, a necessity. I think I just need to fill my cup up a bit more so I will have more to offer. It is probably not a bad idea to start periodically thinking about how I will want to fill my time next year when CB is in kinder and HB is in a mother’s day out program 3 days a week. That has also seemed stressful, but I think it is mostly related to perspective. I just need a new plan :).

CORRECTION STATED BELOW – So, we got further confirmation that CB in fact does have a peanut allergy. The IGE allergy testing he had done a few months back indicated he could have a peanut allergy as the numbers were slightly elevated. We have stayed mostly away from peanuts since the test. Well, last weekend, while out of town at the beach, CB ate a bunless burger with fries, pickles, some raw onions, and some bites of tomato. We knew the burger and fries were cooked in peanut oil, which seemed weird but we thought we would try it. Partway through the meal, I noticed CB’s cheeks were bright red and he had what looked like a big pimple forming on his chin just below his mouth. His lips also looked like they might be a little swollen. Since he had been at the beach, I wasn’t 100% sure if the cheeks were turning red b/c of the food or the sun. I really thought the redness was more apparent and didn’t remember the blemish. We set the food aside and gave him some food we had packed as back-up. We thought this could be related to the vinegar in the pickles b/c he is sometimes getting swollen lips from those, from the peanut oil, or from some other ingredient we didn’t even know about. Two nights ago, during dinner, CB had some thai spring rolls in peanut sauce. He got that same enlarged pimple/blemish. Guess we will keep that off the food list for now.

Diet/Nutrition Update: CB also started GSE (grape seed extract) a few days ago to help treat the yeast in his belly and a new probiotic w/30 billion active cultures (Ultimate Flora Extra Care Probiotic Supplement). We are also periodically giving him some dairy with no noticeable changes.

9/23/2015 UPDATE/CORRECTION: Yah, CB’s allergic reactions appeared to be peanut related, but they were reactions to the already known allergy, soy. The peanut sauce for the spring rolls had soy sauce in it. I can’t believe we weren’t thinking about that when we got it. The restaurant that said they cooked their burgers and fries in peanut oil were incorrect. I called them back and they double-checked the oil. It was vegetable oil with soybeans in it. It is so hard to really know what you are eating when you eat out. The cooks didn’t even know what they were using and then just guessed and guessed wrong.  I was so concerned we were going to have to start carrying around an epi pen and start having to worry about peanut exposure, as well, whew. It is nice to have one less thing to worry about for now.

September 15, 2015 Allergy, Diet, & Supplements, Worries, Fears, & Ramblings, , , , 0 Read more >