Dyspraxic Journey

Tag Archive: unintegrated primitive reflexes

Weekly update on CB late October 2015

So, what’s new with CB? For starters, CB was able to hold the Landau reflex position, which is known as the happy baby reflex or the superman, on his own for 10 seconds for 5 repetitions. His OT and PT include reflex integration into their therapy and this is the fastest progress he has ever made with integrating a reflex. It is probably not yet fully integrated, I don’t believe; however, he went from holding his head up, with supported arms and legs to holding the position on his own in 1 week – WOW! The other interesting thing is that in that time frame, Olem and I both commented about getting the sweetest hugs from CB and that he was quite happy. CB’s OT commented that she has seen numerous times when kiddos work on that reflex integration and either integrate it or make great progress, that they seem happier. Well, it may have been coincidental, but it is awesome. I told CB’s PT and she said it brought chills to her body hearing me talk about him :). Reflex integration therapy is an excellent therapy for dyspraxic kiddos. So many of our kiddos have many unintegrated reflexes and this type of therapy is one way to target these reflexes, which should have become dormant when our kiddos were younger. My son for example started off therapy with most of the tested reflexes as unintegrated.

CB’s OT also commented on how much heavier CB felt. We started CB on L-Carnintine several weeks ago. His appetite grew and he was scarfing down his food in no time, asking for more, and finishing his seconds. It was like he couldn’t eat enough. L-Carnintine can cause increased appetite so I am guessing it is related to that supplement versus a growth spurt. The guy takes after me weight-wise so he can use the extra poundage. A few days ago, his appetite settled back down to normal. Another potential side effect of the L-Carnintine is producing a fishy odor from the sweat glands. Well, starting about a week ago or so, I noticed that CB’s neck produced an odor. The smell came from his ear across the back of his neck and to the other ear. I did not smell it anywhere else on his body, not his underarms, feet, legs, etc. I thought it smelled like BO but a friend of mine thought it smelled more fishy than BO so I guess it is the L-Carnintine. No clue why it is just smelling on his neck. The smell goes away right after a bath and resumes within minutes. I’ll watch it for another week or 2 to see if it goes away.

Last Friday, we had CB’s 6 month blood workup done. A lipids test for cholesterol levels and a thyroid test were added since we had not actually looked at those in the past. Fingers crossed everything looks good. I am really hoping his IgA levels have continued to improve!

The whole family has been suffering from allergy issues. This coupled with the fact that Olem has started suffering from allergy-induced asthma over the last couple of years, which now surfaces 1-3x a year and CB waking up sneezing for months and months now, we have decided to invest in a good air purifier. I hope this helps everyone breathe better in the house, especially at night.

The parent/teacher conference at CB’s preschool was yesterday. They were extremely receptive to my suggestions. It is a very different perspective from what we experienced at the public preschool. At the public preschool, it was like the teacher would appease us by listening but  never actually make any changes based off our suggestions or comments. At CB’s current preschool, the main teacher and 2 teaching assistant’s attended and were basically like please share all your thoughts, and made changes to what and how they were teaching CB within less than 24 hours. They even asked for me to observe each month and share my thoughts, as well as, to meet monthly for updates. It is so much the opposite, that I am still not 100% sure how I feel about it :). Obviously, it is way better than last year. I guess I just want to feel like they know more than me about teaching but that I know the most about my kid. And time will tell how the teaching goes, but socially, emotionally, and physically, CB is doing quite well there. I even think his confidence is growing so it is definitely a much better fit for CB for now!

CB and HB are so pumped about Halloween and trick-or-treating this year! I can’t wait for Saturday!!

 

 

October 29, 2015 Growth and Progress, , , 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!

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October 8, 2015 Allergy, Diet, & Supplements, Tests & Evaluations, , , , , , 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 >