Dyspraxic Journey

Allergy, Diet, & Supplements

ADHD Meds – Will they work?

We decided to try ADHD meds after our other efforts to improve CB’s attention did not help. His neurologist prescribed the liquid fast release form of methylphenidate at a low dose. CB tried the meds out over the weekend. We noticed that he was still completely himself but he was not as distracted as usual. He mentioned that his heart was racing the second evening he was on the meds, but did not comment on this feeling ever again. His teachers all commented about how much the meds helped him focus, feel less frustrated, and be in a better place to learn. His teachers reported that his learning remained pretty stagnant the 2nd 9 weeks of school and after he started the adhd meds, learning began to progress again and his behaviors improved immediately. Since he was on the fast release dosage, he took it in the morning and just before lunch. His teachers reported that they did not give him any demanding work just before lunch when they could tell his meds were wearing off. We wonder if he experienced the rebound effect during that time as he would seem more easily frustrated. Either way, it was easy for everyone to tell the ADHD meds were helping him focus, helped his regulatory behaviors (like saying the same word/phrase over and over, randomly blurting out inappropriate words, rocking), and helped him learn and progress.

February was a very positive month for everyone! In addition to CB being happier, I got the help I needed and was able to turn my outlook around. I also started attending a parenting class for parents with children with special needs. The class provided me with some new tools for dealing with difficult behavior and I felt empowered, like I could help my son again.

March 1, 2018 Allergy, Diet, & Supplements, Education 0 Read more >

A Pebble in a Waterfall

It feels like I am a pebble slowly flowing through a stream with small cascades. The stream gradually flows into a river with larger cascades causing the water to move faster and faster as well as the pebble. The river water gains momentum until it plummets over a crashing, powerful waterfall. The pebble is flowing along and has no awareness that the waterfall is coming. Once it falls, there is no stopping it. The water keeps pounding on the pebble. The pebble can kind of see other rocks and some pebbles around it so it is not alone; however, the pounding water does not stop. The pebble is trapped under the waterfall and cannot break free. It’s shape is changing and the pebble is powerless to change it.

I have felt like that pebble over the last few months slowly gaining momentum heading in a direction I cannot control. My shape changes just a little and I have moments of vulnerability I cannot hide. As of the last couple of weeks, the water around me has moved faster and my shape is changing more. As of a few days ago, I have plummeted over the waterfall. I don’t want to be at the bottom of the waterfall just trying to move. I want to be back up on the top in the nicely flowing river. I want to come up for air. I need help!

My personality is one where I try to keep most things inside and contained. For better or worse, that is what I do. I like to control my environment around me and it helps to keep me safe and I can keep my life together. Now that I am at the bottom of the waterfall, I can’t keep everything nice and contained. I can’t put up a facade that everything is ok, or if I do, I can only hold it together for a few hours. When there is a lull, I start crying. And sometimes, it is that big, ugly gasping for air crying.

My older son with special needs has started public kindergarten. He has a good, caring teacher. He has a shared TA that wants to help. He has an IEP (Individualized Education Plan). He has a principal that wants to help. However, he is struggling. He is struggling with all fine motor activities – cutting, writing, coloring, copying, buttoning buttons, tracing and with math – 1-1 correspondence, counting to 30, visually seeing the difference in 3, 4 or 5 items and with pre-reading – correlating sounds with the appropriate letters, blending, sounding out words, and sight words. He struggles to feel motivated, to try and to stay focused. He struggles to follow too many steps presented to him. He struggles to control his behavior and his words. He struggles with being over stimulated. We knew before he started that these would be challenges. We also knew that we would have to advocate for him. I guess some of the things we did not expect are 1) An inexperienced case manager who did not know she needed to track CB’s goals 2) A school/teacher that would send a Kindergartner with an IEP to the office 3 days in a row for inappropriate behavior 3) A principal/teacher that seem to be on the same page with you and then the very next day do something completely different. 4) A school not equipped to help CB with his behavior challenges and learning disabilities. Why is it so hard? I feel like a failure to my son. I feel like I don’t know how to support him with his needs. I don’t want him to already dislike school. I don’t want him to feel inferior to his peers. In some areas, he is barely progressing and I don’t know how to help and I don’t feel the school does either. We have a request for a Functional Behavior Assessment (FBA) in order to create a behavior intervention plan (BIP) at school, but it has not been started yet.

I have also felt like a failure in my outside activities related to CB’s genetic difference. I feel incapable of motivating the group which in turn makes it hard to move forward with our organization’s goal to raise funds for research to help CB and others like him.

I am contemplating using ADHD meds with our son for the first time ever. It is a difficult decision and one that we do not take lightly He has numerous sleep disturbances every night, as well, and we are currently trying melatonin to help it. In November and December, we tried supplements prescribed by CB’s neurologist which included prescription-strength omega 3s, gaba, methylated folate (Vitamin B12), magnesium (25 mg), Vitamin B6 (12.5mg), and zinc (5mg). Ultimately, we feel it made him more hyper and he was just as inattentive. We most likely will stick with melatonin a little longer and if that doesn’t help try a little Benadryl. He wakes up sneezing just about every morning so that could help for both the disturbances and the sneezing. We feel if he gets better sleep, then his attention and behavior will improve. If this does not help his sleep, then it looks like ADHD meds will be the way to go.

I want to feel like I am not being pounded. I want to feel like I am slowly moving through the water. I want to be able to come up for air! I cannot remain alone. I must ensure to put out all these thoughts and feelings into the universe, whether it be through blogging, talking with friends, talking with my husband, talking with other parents with children with special needs, and/or talking with a counselor. This is too much to carry alone and I don’t need to do it. I don’t need to worry about being a burden or about putting my issues on others. I don’t need to feel like I am a failure and a burden and keep it inside. Inside it grows and festers and keeps the water pounding and pounding non-stop on me. I need to make a promise to get outside more, blog more, to not carry the worry/guilt/feelings alone, to care for my husband and our relationship more and to spend time thinking about positive ways to help CB feel successful and happy!

January 29, 2018 Allergy, Diet, & Supplements, Education, Growth and Progress, Worries, Fears, & Ramblings 0 Read more >

Kindergarten – In full Swing

CB gets to walk to our local neighborhood public school every morning! He may not be super-excited about leaving the house each morning at 7:10am but once he gets outside, he is ready to move and explore. He loves being outside and the walk to school is perfect. Flowers and plants to explore, vehicles of all shapes and sizes driving by, and new friends to potentially walk-with – what more could he want? He jabbers the whole way to school talking about everything he sees and shares this not only with Olem and me but with anyone walking by. CB talks with everyone which makes him already well-known at school.  It’s also garnered him several play dates with a couple of friends from the neighborhood whom he encounters on the walks to school. Beaming mama face (on the other side of this computer)!

CB lucked out this year as his kinder class only has 16 students and he shares an aide with a couple of students in the class. Socially, he is about on par with his peers. Last year he attended the 5 year old program at a nearby university program. It was play-based and allowed him to grow in his confidence and with his social skills before starting kinder. Surprisingly, eating in the noisy cafeteria with his peers has not proved to be too much to handle. Providing tasks for when he finishes eating is helping to keep him from getting into too much mischief. His headphones have also not been needed, so far. Behavior challenges have surfaced, which is to be expected, but at a lower level than we anticipated. Academically, he struggles with fine motor, math, and coordinated movement skills and his pre-reading skills are coming along, just at a slower pace. Currently, he gets 45 minutes of speech at school weekly and limited OT. He also has other accommodations and modifications based off his IEP, Individualized Education Plan. (more…)

October 23, 2017 Allergy, Diet, & Supplements, Education, Highlights, Therapy 0 Read more >

Mooo…yep, we are going to introduce you!

So, dairy has not been a regular part of CB’s diet for 2.5 years. We have tried introducing it back into his diet a couple of times but for various reasons have removed dairy each time after a few weeks or a month or so. This time Olem and I decided to add it back into his diet because 1) his latest 2 lab results look good, 2) his behavior has been more manageable for a couple of months, 3) his allergies are not bothering him currently, and 4) we do not want the food group entirely eliminated if it doesn’t need to be.

We started with whole cow’s milk yogurt today and will try it for several days, remove it for a few days, and monitor results. Fingers crossed his body accepts the change and we don’t see negative side effects.

This is sort of crazy, but CB is still in the same phase he was in from my last post in early May. What?? He has remained in a more positive place and has been more flexible with correcting his use of negative words during vocal outbursts/stems and modifying his inappropriate behavior with friends and younger brother. Maybe summer break suits him :).

CB watched his 3rd movie at the theater this past weekend, Cars3. We went to a sensory-friendly showing so kid attendance was high. CB stayed the whole time inside the theater and in his seat . He started wearing his headphones after the previews (which were slightly quieter). CB did ask to leave 2 times but his heart was not in his request. He didn’t insist on it. His teddy and headphones made him feel safe.

June 29, 2017 Allergy, Diet, & Supplements, Growth and Progress 0 Read more >

Short Nutrition Update

We have our latest update in our quest to get CB’s blood work to look unimpressive and plain jane. CB’s iron and zinc were solidly normal. IgA is just a little low, as well as, WBC and lymphocytes. Overall, it is a good report! His body seems to be in a good place. We are sticking with the GFCFSF diet and also started incorporating homemade coconut milk kefir into his diet. For the last couple of months, CB has not taken any supplements. We may add fish oil back in, as well as, a daily supplement, but not at this point.

March 9, 2017 Allergy, Diet, & Supplements, , 0 Read more >

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 >

Parasites Strike Again

For me and for most of the moms I know, after we take in the fact that our child has special needs, we set off on a journey to find the root cause of our child’s challenges and sometimes illnesses. Even when we think we have an answer, it is not the final answer. Things are always in flux and we are always learning something new. Information posted a few years ago may already be disproven or at the least improved upon. Even though we know CB has a genetic difference, genetic variance, genetic mutation, whatever you want to call it, we know that he exhibits a myriad of symptoms that may or may not be 100% related to this genetic variance. He could exhibit some behaviors because the genetic variance makes his body more susceptible to other infections, illnesses, or other difficulties.

Our latest work up results included blood, urine, and stool.  We did this as we were considering seeing a pediatric gastrointologist. This pediatric gastrointologist wanted an extensive work up including blood, urine, and stool before he will see your child. His visits are also 100% out of pocket and if he has to do a scope, a good portion is not covered by insurance. Since it was time to do CB’s usual blood work, we added in the extra tests. The good news is that we do not feel we need to move forward with a visit to the pediatric gastrointologist based off the results of the work up. (sigh of relief). The concerning news is that CB’s iron is still low and his IgA levels have fallen even lower. His wbc count is low but nothing else on the CBC. His zinc and vitamin D look fine but we supplement those. The other interesting finding is that his stool still contains d. fragilis. This is the same parasite identified in his stool from another lab almost a year ago. We treated the parasite with humaworm. Actually, the entire family took humaworm. We felt his symptoms had improved afterwards. Since we did not test again, I don’t know if it actually cured it and he was reinfected or it never fully cured it.  (more…)

November 18, 2016 Allergy, Diet, & Supplements, Tests & Evaluations, , , , , , 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 >