Dyspraxic Journey

Tag Archive: probiotics

D. Fragilis Is Reportedly Gone

One thing that we have learned on this journey is that CB has a sensitive immune system. He doesn’t get sick often, knock on wood, but his system is sensitive to random infections, bugs, and immune suppressors. During the last few years, he has tested positive for yeast infections, anal strep, d. fragilis, selective IgA deficiency, multiple vitamin deficiencies (despite eating healthy and a variety of foods), food sensitivities, and allergies. OK, some of these are common, but I don’t believe anal strep and d. fragilis are all that common.

The latest culprit is d. fragilis, dientamoeba fragilis. D. fragilis is a parasite that lives in the large intestine. It is controversial as to whether it is pathogenic. If you do a quick search on the web, you will see many anecdotal reports stating that it can cause IBS type symptoms, decrease the body’s ability to absorb iron, and can be very hard to anihilate. You can read more about dientamoeba fragilis at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3862407/. (more…)

January 5, 2017 Allergy, Diet, & Supplements, , , , 0 Read more >

Nutrition, Supplements and Therapy Update

Here is a quick summary of CB’s supplements, therapies, schooling and diet.

Supplements

  • Morning
    • Vitamin D3 – 1 drop (Franklin & Friends – 400 IU)
    • Multivitamin – 2 chewables (Garden of Life Vitamin Code Kids Chewable Whole Food Multivitamin)
    • L-Carnitine – 1 capsule (Now L-Carnitine Fitness Support 500mg)
  • Evening (Before Bed)
    • Probiotic – 1 capsule (RenewLife 15 billion)
    • Fish Oil – 1 teaspoon (Nordic Naturals Omega 3 1600)
    • Vitamin C – 2 chewables (Nature’s Plus Animal Parade Vitamin C Natural Orange Flavor) – Periodically 2-4x a week

Therapies

  • Speech – 4x a week (2 private therapists and 1 therapist through proportionate share)
  • Occupational – 1x a week
  • Physical – 1x a week
  • Extra-curriculars
    • Piano Lessons – 1 x a week (to improve fine motor and motor planning)

(more…)

September 18, 2016 Allergy, Diet, & Supplements, Therapy, , , , , , 0 Read more >

Nutrition Update – Low Iron

Feeling a bit bummed today…CB’s nutrition report came back with low iron, high UBC, low cacl % iron saturation, low IgA, slightly low zinc, high vitamin E, low WBC, and improved vitamin D3. I believe the persistently high vitamin E levels are due to CB’s high almond intake so this is understandable. His IgA level is 6 points lower than it was 2 months ago but the second test was taken in the morning while fasting so that might account for some of the difference. The zinc is the exact same value as 2 months ago and the vitamin D increased some. The vitamin D increase is easily explained by the additional time in the sun plus vitamin D supplements for the first month or so after the last test. However, the vitamin D3 level is not as high as we would like it to be. CB stopped having dairy in his diet one month before the last test. There is definitely the potential that adding dairy back in caused the decline in iron. Even though the dairy was in his diet before the last test, maybe it took more time to really impact his intestines and then his iron levels. From this we know only adding vitamin D3 supplement does not bring up the iron and zinc levels. We also know that although the probiotics are helping, they are not enough.

We feel at this point, we are going to take a step back and look through his previous nutrition reports to find when his levels where the best. It seems like October of last year, his vitamin levels were quite solid with the exception of low IgA (although it was improving) and high vitamin E (still high almond intake). For now, our plan is to get back on the following supplementation routine. CB will also remain GFCFSF plus we limit dyes, no HFCS, any preservatives with initials for names, no carageenan, and no MSG. (more…)

July 7, 2016 Allergy, Diet, & Supplements, Education, Tests & Evaluations, , , , , 0 Read more >

Summer is Now in Full Swing

I can’t believe it has been a whole month since I last wrote a post. With school ending, camp starting, and trips to two states and another country, it has been a bit of a whirlwind. It is hard to determine where to start.

Well, for the latest nutritional update, CB had blood taken today so we will know in a week or so whether his vitamin levels are back to normal. I believe I mentioned we ultimately decided to completely cut out dairy again. It just really seemed like the factor contributing to the declining levels. We will see soon. Otherwise, for the last month, CB regularly gets probiotics at night, but that has been the only supplement. We will most likely add the enzymes back in to help with his regular smelly gas after he eats. We were waiting to make any additions/changes till after we receive the blood work results. We quite giving him the vitamin D drops b/c he is getting so much sun everyday. We will also need to think about adding the multivitamin back in. I am really curious to see how his Vitamin E levels and to see if his fat absorption has improved.

I have now met another family with the same genetic mutation as my son. It was so affirming and feels really good to know you are not alone. Although our children are different, it is easy to tell how the genetic difference greatly impacts both our children’s lives. Still not much is know about SETBP1 loss-of-function mutations so we still have to address each symptom, i.e., speech therapy for the motor-planning disorder, OT for the fine motor challenges, PT for core strength, balance, and coordination, diet for sensory needs, etc. It would be nice to be able to help the root cause, but who knows if/when during CB’s life this level of information will even be known. I am reaching out to as my knowledgeable professionals and researchers as possible to find out what we can. (more…)

June 29, 2016 Allergy, Diet, & Supplements, Genetics, Growth and Progress, , , , , 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 >

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 >

CB’s Evaluation, Therapy, and Treatment History

CB is 4 years old …

I touched on CB’s diet in an earlier blog, but I don’t think I have gone through CB’s evaluation, therapy, and treatment history.

CB was 10 months old when his daycare provider informed us that CB was developmentally behind and did not seem to catch on to things like his peers. This was extremely hard to digest.

CB’s first introduction into the therapy world was with a warm, yet challenging Physical Therapist. He was 15 months old. She helped CB learn to walk. He started walking (ability to walk across a room) at 17.5 months. His PT would push him further than I ever would but she knew just how much to push him to help him grow and move past some of his frustration. It was a good experience and we ended therapy shortly thereafter.

CB started gymnastics at around 19 months old. We thought it pretty much worked kind of like PT as it got him moving and trying new and different physical activities. He hated the big parachute for most of the year and needed a lot of herding to keep him somewhat engaged.

The month after CB turned 2, he was evaluated by a PROMPT speech therapist and given the diagnosis of a moderate receptive-expressive language disorder and a moderate-severe neuro-motor speech disorder.  He started PROMPT speech therapy the following week 1x a week. The next month, Early Childhood Intervention (ECI) evaluated CB and determined that he had a significant speech delay. They started their services within the month and came to our house 1x a week. The ECI interventionalist helped CB with speech and social skills (i.e., sharing, taking turns). After 3 months of private ST, it was determined that the PROMPT speech therapist, although nice, was not pushing CB enough. We decided to end private ST and continue with just ECI. About 2 months before CB turned 3, a licensed ST from ECI started coming to the house 1x a week, as well. CB progressed but at a pretty slow pace. ECI evaluated CB for OT help but he was not far enough behind to get help. Although, I think if I had replied more accurately, he would have qualified. As a parent new to the special needs processes, I responded to most things with the best case scenario response. I think I replied that he ate pretty well with a fork and spoon. He still doesn’t eat well with a fork and spoon. It is still challenging and he gets food all over himself 9 out of 10 times when eating. ECI was helpful in training us how to talk to CB and how to play in a more helpful manner. My husband and I are not huge talkers so it felt very unnatural to talk about what we were doing all the time and to repeat what CB was saying. I think this information helped us tremendously and helped CB’s confidence. When we started saying what we understood him to be saying and not phrasing it as a question, I think he started to feel that we really understood him.

At 2 years 11 months, the school district evaluated CB and determined that he qualified for the PPCD (Public Preschool for Children with Disabilities) program due to his delayed speech. For his school district evaluation, he mainly produced 2-3 sounds for everything. Most of his responses were bah, buh, or duh. When the evaluator asked if we thought the evaluation was representative of his skills, we responded proudly that we thought he tested well because he had tried to answer every question with a response. He normally didn’t do that. He many times wouldn’t even provide a response when you asked him to say a specific word or to repeat after you. CB received 2 private ST 15 minute sessions and 1 group ST session at PPCD. CB also started private ST at the same time 1x a week. 2 months later, CB started taking Nordic Naturals Fish Oil, Probiotics, and a multivitamin. AT 3.25 years old, CB’s pediatrician approved blood work due to CB’s chronic loose stools (sometimes with undigested food bits) and developmental delays.

During the summer, there was no PPCD so CB attended a language camp for a month. Then he took a month long break from therapy because we were out of the state traveling. He still continued to progress during the break. When the fall semester started up, CB moved to swim classes since he could not move up in gymnastics since he was not potty trained. I am so thrilled the switch was made. He absolutely loves his swim class and the class is only 2-4 kids total each class. He also started private OT services 1x a week and increased private ST to 2x a week. CB also started karate. It is a class for kids with special needs. At 3.75 years old, I determined from the blood work performed earlier that year that CB had a much higher than average chance of being celiac. The next day, our household went (GFCF) gluten-free and casein-free. Within 2 months, we saw improvements globally for CB from speech to gross motor to fine motor to sensory awareness (he could feel temperature changes outside). Our household also went soy-free within 1.5 months of going GFCF b/c CB started to present with a soy allergy. His ST sessions at PPCD remained the same. In March, we added Physical Therapy to his schedule to focus on integrating his retained primitive reflexes. He has a long list of unintegrated primitive reflexes. She also works on other gross motor skills, as well. I perform the developmental exercises at home anywhere from 2-6x a week. For most of the exercises, I have to do them in passive mode. Surprisingly, CB handles his schedule quite well and enjoys all of the activities.

Some things we have learned along the way 1) the PPCD structure has been extremely helpful for improving CB’s executive function, focus, attention, independence, social skills, speech and potty-training skills. 2) CB has visual, auditory, gross motor planning and execution, fine motor planning and execution, coordination and balance, food sensitivities, speech, and sensory issues 3) to listen to CB and to work within his limits and abilities 4) stop/change therapy if it isn’t working 5) seek answers and ask questions 6) even though we have heard it over and over again, we are our child’s biggest advocates.

Positive Progress: 1) CB is now completely in underwear except for diapers at night. He has been wearing underwear at school since the beginning of Dec but continued to have accidents on a regular basis. We let CB direct when he was ready to start wearing underwear at home and that is working out well. He also decided this week that he doesn’t want to wear diapers during naptime. He still needs quite a few reminders so that he pees in the toilet, and not accidentally in his clothes or on the floor. He even had 3 days accident free. Yay!!

2) We arranged to meet with an expert in the dyspraxia field in the upcoming weeks! We also have talked with a director of a motor planning and coordination lab. We are feeling very positive this week and feel we are moving in the right direction.

3) We upped CB’s fish oil earlier this week. He is now taking Nordic Naturals Omega Complete liquid form .He was CRAZY for about 2-3 days. However, his articulation, fluency, and the amount of language he used improved. He also climbed a new type of monkey bar about 6 -6.5 feet tall (4-5 times) to get on a playscape.  It seems like in the past, the days/weeks or so following an increase in fish oil, CB makes a big jump cognitively, physically, and verbally. We then see a little dip and then a leveling off at a higher level from where CB started.

Low: CB still has light shiners under his eyes, a rash on his bottom, and some digestive issues periodically. Arghh…we have made quite a few diet changes but we still need to keep tweaking and testing to see what is still ailing CB.

April 15, 2015 Allergy, Diet, & Supplements, Education, 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 >