Dyspraxic Journey

Tag Archive: selective iga deficiency

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 >

Positive Progress based off Latest Blood Workup

Yay, CB’s progress is continually being reflected in the blood workup CB partakes in every 4-6 months or so. The highlights are that all his iron levels are within normal range, his IgA levels are still rising, his CMP was completely normal, and his homocysteine levels are getting close to the low-end of normal. What does all this mean? His diet and supplements are working!! We implemented the modified diet and many of the supplements based off CB’s original blood workup test results from April last year. You can read more about where CB started from blood workup-wise in my blog at Current diet and supplements.

The number of tests performed with CB’s blood workup has grown since his first one a year and a half ago. On the latest workup, the following tests were performed:

  • CBC w/autodiff w/platelets
  • CMP
  • Ferritin
  • Iron and IBC
  • Immunoglob IgA
  • Immunoglob IgG
  • Immunoglob IgM
  • Immunoglob IgE
  • Folic Acid?
  • Magnesium
  • Lipid Panel
  • TSH Free to Reflex T4
  • Vitamin B12
  • Vitamin D, 25
  • Vitamin A
  • Vitamin E
  • Vitamin K1
  • Methylmalonic Acid
  • Zinc, serum
  • Homocysteine

(more…)

November 3, 2015 Tests & Evaluations, , 0 Read more >

Allergy Report & First Food Reintroduction

CB is 4 years old …

Life is going well here in our little household. Olem and I are both thinking positively and just enjoying life. It is easy to see how CB’s behavior can be quite linked to our moods and reactions. CB is having a great week at school. I guess the aggression last week was either tied to the return to school after our trip and/or the reintroduction of fish oil after a 5 day break due to our little vacation. CB is still a bit off. His therapists mentioned that he did a good job and performed what was asked but that he struggled more and seemed more foggy-headed than he has been lately. When things like this happen, we immediately start looking into what is going on with him outside of therapy to see if there is a logical or easily-identifiable reason. CB is experiencing some seasonal allergies which may be contributing to these struggles. We now think the rash on his bottom is potentially linked to his seasonal allergies. We also found out he has to wear non-elastic underwear. The elastic irritates his skin.

We got 90% of his allergy report back and were pleasantly surprised. He only showed an allergy to mold (indoor and outdoor) and a borderline potential for a peanut allergy. Olem had allergy shots as a kid and was allergic to a long list of things so we really expected to see similar results for CB. CB’s nutritionist had recommended back in January that we hold off performing an allergy test b/c she felt the report would show a lot of false positives since his nutrition report showed several vitamin deficiencies and the selective IGA deficiency. I posted more about that at my Current Diet and Supplements post. Since his latest nutrition report showed that his body is in a much improved state, we decided to move forward with the allergy report.

We reintroduced plain whole milk yogurt (first casein protein introduction) yesterday into CB’s diet. He had a small amount yesterday afternoon and a small amount this afternoon. So far, he hasn’t shown any noticeable reaction. We really hope he can have yogurt again. We think CB for sure had, and potentially still has, leaky gut issues. Since his body is no longer reporting malabsorption issues, we thought it would be a good time to start reintroducing foods. We know the modified diet has helped, but we don’t know 100% why or what specific components have helped his body. Our plan is to reintroduce foods slowly, monitor CB’s body, emotional, and physical response, and have another nutrition report performed in 6 months. Hopefully, we will see some changes in one form or another that tell us when his body is having problems with a specific type of food. By performing the nutrition report in 6 months, we will be able to see if any vitamin deficiencies or malabsorption issues have returned.

Positive progress: CB stayed dry all night and urinated in the toilet on his own first thing in the morning. His sleep was very interrupted last night b/c of his younger brother. There is the chance he didn’t get to sleep as deeply and was able to control it better. Still, it is a great step for CB! Also, CB’s vestibular system is integrating more fully. He requested more types of swings during OT and at the pediatric therapy play gym and seems way more comfortable.

 

May 14, 2015 Allergy, Diet, & Supplements, , , , , 0 Read more >

The Little Light Switch and Nutrition Report Update

Just like everyone, CB has his on days and his off days. Well, lately his behaviors have been wavering quite a bit so it is more like he has his good moments and bad moments. Yesterday during his OT session, he was so positive and took everything head-on. He laughed while working with the OT on the spinning board. He actually was laughing. Just a few months ago, he was super scared and required the security of the OT riding with him just so he could tolerate it for a few spins. Whatever the OT suggested, he was on board and didn’t put up his usual walls. Most of the time for CB, his first reaction to any suggestion is no. He immediately jumps to the “I can’t do it” mentality and gets frustrated from the get go. We are currently working with him to try to shift his perspective, calm down, and try the task a few times before getting frustrated. So that was a very positive and “on” moment for CB. Today during swim class, he was totally off and sensory-seeking. He was moving the entire time and either splashing, putting water on a classmate, dumping over swim container baskets, or just not paying attention. He even was pretty off when he was in the water with his swim teacher. It is so hard to figure out what CB needs to feel focused and comfortable. Both his OT session and swim class immediately followed a nap so it isn’t like for one class he was really active beforehand and not for the other.

On another note, we got his nutrition report back and he is not vitamin-deficient anymore – yay! Now, he is still a little low on iron based off his ferritin and UBC levels, but the values continue to increase. His Immunoglobulin A levels have increased a bit. They are still low but he has moved out of the selective IGA deficiency range. We know he can produce some IGA, at least. He also had quite a low homocysteine level, slightly low WBC, slightly low carbon dioxide, slightly high vitamin e, and slightly high vitamin a levels. So most likely he still has some inflammation or bleeding. We still haven’t done the organics acid test b/c it requires the patient to not eat apples, pears, grapes, cranberries or their juices w/in 24 hours of providing the sample, and to pee in a cup first thing in the morning before eating or drinking. This is honestly too difficult right now to take on. We tried in early Jan and it was a disaster. Once CB gets in the habit of peeing in the morning before breakfast, then we will try it.

Tomorrow, if all goes well, CB will have his blood drawn for the food and seasonal allergy test. We know CB is allergic to processed soy and has seasonal allergies just based off observation. He is also battling a rash on his bottom, which appeared on and off for several months, and has shown symptoms like he may have some other food allergies. We will see if the test tells us much.

For a therapy update, CB’s ST has started incorporated straw therapy a week and a half ago. CB thrusts his tongue out when drinking from a straw. In regards to the PT developmental exercises I am performing at home with CB to work on integrating his retained primitive reflexes, this is a challenge. CB puts up a fight almost every time we perform the exercises. I need to work on a new strategy so it is not a battle. He typically doesn’t actually mind most of the exercises once we get started. It is the starting part that is so hard for him.

Glowing Glances: We visited a new park and a new children’s museum during a trip we took this past week and CB owned the playscapes. He climbed new play gyms that were not just like the ones he has seen at other parks. For CB, he has to perform tasks over and over and over before he can be successful at a task. Even then, he can forget how to do something depending on the day or environment. So it was so encouraging to see him be able to use his skills he has used in other contexts and apply them to new situations and environments. He also regularly says “of you or of ew” when prompted. Even though it is prompted, it still fills me with joy to hear him repeating the phrase “I love you”. Oh, and he regularly thanks me ” tank you or tank ew” for dinner and says “ih good”. 🙂

May 7, 2015 Allergy, Diet, & Supplements, Growth and Progress, Therapy, , , , 0 Read more >

Current diet and supplements

CB is 4 years old …

The biggest thing on my mind lately is CB’s diet & nutrition. We are currently in the beginning stages of limiting free glutamic acid from CB’s diet. So at this point, CB’s diet & supplements are as follows:

  • Gluten-free
  • Casein-free
  • Soy-free except for edamame & soybeans in his multi-vitamin
  • Artificial color free
  • Preservatives listed as acronyms free
  • High fructose syrup free
  • Animalz Multi-vitamin (2 chewables a day)
  • Nordic Naturals Omega Complete (2 capsules a day)
  • Animal Parade Tooth Fairy (2 chewables a day)
  • D3 drops (1 drop a day)
  • Bluebonnet Probiotics (1/2-1 serving a day)
  • Periodic liquid zinc supplement (10 mg) – was in his diet Jan-early March. Trying to determine if we should keep it in
  • Animal Parade Vitamin C (2 chewables a day)
  • Mulberry Juice (high in iron & Vitamin C – a few glasses a week)
  • Epsom salt baths (a couple a week)
  • Food & Vitamins free of free glutamic acid – implementation underway

When I type all of this out, it feels pretty overwhelming. At times, it feels like there is a small window where we can potentially make a huge difference in CB’s life. It feels like if we do not try enough things before he turns 6 or 7, then we will have lost our chance to make the biggest impact. We know that changes and progress will definitely continue after that age, but we feel certain brain pathways will be more solidified. Sometimes implementing all this is overwhelming and other times, it is comforting. Comforting, b/c we feel we are actually making changes to help CB.

Now we didn’t start off feeling we would be at this place, implementing all these nutrition changes and filling him full of supplements. It would be a good question to ask “how did we get here?”, especially since CB has been a good eater most of his life.

At this point, he eats many vegetables, almost all fruits, nuts, dried fruit, most breads, cheeses, various milks, some beans, and most meats. He wouldn’t eat eggs for the longest time, but he will now eat them on a regular basis. We told him that they would make his strong. (He now holds up his arms, makes fists with his hands, and makes an errrr sound after he takes a bite. We comment on how strong he is. It is so cute.) We have limited his sugar intake all his life and we have had a non-high fructose corn syrup home since before CB was born. He had fast food about 2-3 times by the time he was 2.5 years old. After that, it was primarily isolated to road trips. Most days he drank water as his main drink with a small cup of organic cow’s milk. It has always been a treat to get juice. Fruit was basically his dessert for many dinner meals. If he has ever tried soda, then it would have been just a sip (not sure this has happened though).  From about 1.5-3.5 years old, we had a hard time getting him to eat meat. I think it was too much work for him to be able to chew it. He also was not big into noodle dishes. Fortunately, that has all changed. He just doesn’t like soups or really mushy food like mashed potatoes.

We started off implementing fish oil b/c of his limited speech. We later added a multi-vitamin and probiotics to help his digestive issues. The probiotics helped him to no longer have undigested bits of food in his poop (possibly TMI). He still continued to have really mushy, smelly poop though. We tried eliminating dairy a few times, but his poop remained the same. A few months after his 3rd birthday, we had a nutrition report done that showed he had

  • selective IgA deficiency
  • iron anemia
  • low vitamin k
  • odd blood levels
  • very low zinc
  • and a few other issues.

CB’s pediatrician said she didn’t feel too alarmed and didn’t really tell us much. She only mentioned that CB may be more likely to get sick b/c of the selective IGA deficiency or stay sick longer. It wasn’t until 2 months before CB turned 4 that I came across something on the internet indicating that he had a higher chance of being celiac based off the nutrition results. The next day, we started a GFCF diet. We heard that many celiacs or people with gluten intolerance do not show much improvement in the beginning if casein (milk protein) is not also eliminated.

So we started the diet and then a month later started seeing a nutritionist. She confirmed that she thought he was celiac and gave us some supplement suggestions and helpful info about food. She felt we would see big improvements with CB’s neurological issues. We have made some supplement changes, had another nutrition report done, and met with the nutritionist again since then. We removed more preservatives from his diet and became more aware of other unhealthy ingredients like carageenan. There were definite improvements on the nutrition report. Since we had the original nutrition report done back in April, started the modified diet in December, added supplements in January, and performed a 2nd nutrition report in February, we are not 100% sure whether the diet helped the report or CB’s diet expansion which included eating more meat. In December, we also noticed that CB started showing a food allergy. His cheeks started turning pink after eating. We determined he now has a food allergy to soy. It seems like it is just related to processed soy. He also still will get mushy, smelly poop at times and red cheeks. Plus, he has been having other allergy issues. So, we are still on the journey to really isolate what is going on with our son’s body. Well, it is now mid-March, and we saw something from the biochemist Katie Reid about free glutamic acid. Her thoughts and the science she shared really resonated with me and then with my husband. Her TedTalk and speaking sessions really got us thinking about whether free glutamic acid is causing additional issues. So that is how we got to the point we are at. We will see how this diet change goes.

Positive Progress: 1) CB, HB and I have really enjoyed spring break so far. I feel we have all bonded more and are all feeling positive. 2) CB jumped with 2 feet off the couch on to the floor semi-landing on 2 feet! He landed but then dropped to his bottom. He doesn’t know how to adjust to landing after jumping from that distance.

March 18, 2015 Allergy, Diet, & Supplements, , , , , , , , 0 Read more >