House of Krause

I really enjoy hearing from people who find my blog. It encourages me to keep writing and sharing. Over the past couple weeks I have received a lot of e-mails from concerned parents.  I thought it might be of value to share some frequently asked questions. The information here is only my personal experience with my son and his Childhood Apraxia of Speech. Always check with your doctor, SLP, ect.

What all have you done for therapy?

Luke began play therapy at about a year and a half old through our local regional center. He received one hour once a week. This was the first step to try to encourage him to make any sounds. Mimicking animal sounds, car sounds, any type of verbal expression through play therapy. After a few months occupational therapy was added (one hour once a week). This mainly addressed oral motor weakness and overall coordination, and muscle strengthening. Luke had play therapy and occupational therapy until age three.

At two years old he began one on one speech therapy at Lucid Speech and Language Center. He receives two thirty minute sessions per week.

Luke also began a preschool program two days a week (four hours per day) right at age three. He is currently off for summer break. Preschool is a mixed class of half typical developing students and half special needs students. He received one hour once a week of group speech during preschool as well.

You mentioned twice a week?

Luke has been attending speech therapy twice a week (thirty minute sessions) for almost two years now. We are officially taking our first break. We are going to take four weeks off this summer and resume with speech in the fall.

Oh my, after typing out that list of therapies, I can say it is a WELL DESERVED BREAK!

How old is he now?

Luke is just a couple months shy of four.

Did you use PROMPT or the Kaufman method?

Our therapist used the Kaufman method. It worked really well for Luke. Luke has an amazing SLP who is well trained in the Kaufman method but also uses her own techniques and changes the program to fit Luke’s needs. We have used some aspects of PROMPT therapy. Several parents have told me PROMPT therapy has worked well for their child as well.

Where there any exercises that you found particularly helpful?

This answer would be so long, it could run for five pages. I will try to narrow it down. I encourage you to take some time to read through some of my older posts. At some point I hope to group all the activities and ideas together for easy reading.  I just haven’t had the chance.

In the beginning all of the oral motor activities were very helpful in just stimulating the mouth.   Ideas like;

Blowing bubbles, blowing whistles, blowing milk bubbles with straw, blowing cotton balls with a straw (have cotton ball races),  peanut butter or jelly around the mouth (child has to lick it off),  Jigglers(vibration) to rub on cheeks and mouth, introducing variety of food, lot’s of textures and flavors (sour, spicy, crunchy), motorized toothbrush at least twice a day, ditching the sippy cup, learning to use a straw, sucking thick liquids through a long wide straw (applesauce, pudding, fruit smoothies, milk shakes). Just to name a few.

The Kaufman method- using the Kaufman flash cards has worked wonders for Luke. It is so important to have the visual cues! CUES, SCRIPTING and PROMPTING

Our favorite language game has been Read and Rhyme by Lakeshore.

Helpful exercises change as you go through different stages of therapy. Overall just creating a language rich environment.  Talking, talking, all day long (slowly and simply), singing and music, games, puzzles, sign language, reading together, crafts, blocks, pretend phone calls, dancing, playing with baby dolls, labeling EVERYTHING in your child’s world, and having adventures!

I remember some days I would talk and repeat things so many times that by the end of the day I just wanted to cry. I remember laying in bed one night just thinking, I don’t ever want to talk again.  But these stages  pass!

Did you ever give him fish oil?

Yes, I did have Luke on fish oil for a period of time but I did not notice any difference. I hear from parents all the time that swear by it. So I encourage parents to check with your doctor and give it a try. It cannot hurt. I will likely try again.

How is he doing now?

Luke is doing really good. He is able to say most anything he wants now. Sometimes he has to stop and  think about what he is trying to get out. Especially when he gets very excited and is talking really fast. He may have to take a couple of attempts at it but he is usually successful. We are still working on more sounds. We still have more to master like, S, SH, and F. Sometimes it is hard to see the progress when you are in the situation. Many family and friends that don’t necessarily see him all the time give us wonderful comments on how well he is doing. Also how well they can understand him now! He can even sing!

Are you hopeful and confident that Luke will have a normal pattern of speech?

I am VERY hopeful and confident Luke will have a normal pattern of speech. One of the best things I did was attend a Nancy Kaufman conference on CAS. She has worked with children for over thirty years. Besides  thoroughly explaining CAS and treatment therapies (it is actually geared for SLP’s, but it is open to parents as well) she showed videos of children she has worked with.  Some of these children had very severe disabilities, and guess what, they learned to speak!  Some had very severe Apraxia, and guess what, they learned to speak several languages. How about that! It was so inspiring to see these young children (like Luke’s age) struggling and working hard in speech. And then to see them grown up, in college, doing all kinds of challenging jobs. Yes, it leaves you feeling very hopeful!

I have also heard from a friend who’s son went through the same thing. After years of therapy, her son finally graduated from speech and you would never notice any difference in his language.

The hard part is it just takes time!  How much time?  I’m not sure. The friend I mentioned, her son graduated from speech at eight years old. Then I hear of children with CAS that start therapy at two and are totally done by age three. There is just no specific answer or time. Every child is different. I feel Luke will be in speech (of some sort) for several more years, but I am hopeful he will have clear and normal speech.

What have you told Luke about Apraxia, and how do you word it if you tell him he has speech issues?

I’m sure Luke has heard the word Apraxia spoken around here many times. I have talked with Luke several times when he was frustrated or having a melt down. It has always been in just a positive or encouraging way. Things like just letting him know how proud I am of him, how hard he is working. We have cried together. Many times there was just no needs for words, he knows he struggles.  I found that hugs and holding always make both of us feel better!

Did you find it has been hard to get two syllable words?

Yes, it is a big step to get up to two syllable words. It is also hard to master vowel, constant, vowels(CVC), as well. It took a long time for Luke to reach that milestone.  It is hard for children with CAS to change positions back and forth like that. For CVC’s one suggestion would be to choose words like, pop, bib, mom, dad, pup. You are starting and ending with the same sound.

The past two years in general have been challenging. Maybe somethings have been easier than others, but Luke has worked hard all the way along. I believe his determination has been fueled by many factors. One of the most important being his connection with his speech therapist! She has never given up on him. At times when I as a mother just thought, O.K let’s just skip this, it’s to hard. he’s not going to get this…Guess what with patience, hard work, and good motivation he would do it! I can’t tell you the times I was just totally surprised at what they would accomplish. It’s just like with any thing in life, there are people who just naturally have a gift at what they do. She has a gift!

I have considered making a trip to the Kaufman center, but I’m not sure if that would be premature since I don’t have a diagnoses?

In my opinion it is never premature to start investigating your options. Time is precious. Your are the parent. You know your child best. If you feel there may be a problem, I wouldn’t hesitate to start searching out programs. I know Nancy Kaufman accepts (for a fee) videos sent in by parents. This is a comprehensive screening and can gauge if your child would benefit from coming to her program. Click here for more information.

I would also recommend Lucid Speech and Language Center. Megan McCann is the clinical director. She has a web page specifically dedicated to answering questions.  She is extremely knowledgeable and willing to send parents in the right direction. She may also be willing to do a video assessments to determine appropriate treatment plans for your child. Click here for more information.

Start searching your local area as well. There is a good chance you can find a therapist who really knows and has treated children with CAS. I hear from SLP’s who find my blog all the time. There are so many good therapist out there that are committed to helping children learn to speak.

Is a trip to see a pediatric neurologist or developmental pediatrician typically a next good step?

Apraxia is a neurologically based speech disorder. I would recommend a trip to see a pediatric neurologists most definitely. We had a few trips to the neurologist when we were worried Luke was having absences seizures. He had some testing done. It was a very scary time for us. Thankfully after a few months every thing just seemed to resolve itself.

A developmental pediatrician is also a great idea. It’s always a good idea to make sure you are not over looking any other issues that could be going on. Second opinions (and thirds) cannot hurt!

Also don’t forget to add a trip to the Audiologist, or an ENT. Always rule out any hearing issues. Luke had chronic ear infections and ended up having tubes put in. This was the best decision. After he had tubes put in, he never had another ear infection. It gave him a chance to regain his balance and made a world of difference in his over all heath.

There are some common things I hear of again and again from parents with Apraxic children. Chronic ear infections and seizures seem at the top of that list.

How do I know what techniques and qualifications to ask about, or look for in an SLP?

I would just ask how many children they have treated with Apraxia? What types of methods and techniques they use? What were their results? What types of testing they use to asses children? Will they allow you to attend the sessions with your child? I know it is not always ideal to attend speech sessions for every child but I found this to be the most helpful thing! I could see how Miss Megan worked with Luke so I could follow her example at home. You are with your child all day. Your SLP only spends maybe an hour a week with him/her. It is important to have a good understanding of what you should be doing through out the day.

Our son tends to stay away from groups of other children and avoids interactions with anyone he is not familiar with. Is it something Luke has experienced? Any ideas to make those situations better or easier?

Yes, Luke has pretty much been attached at the hip. Things are so much better now. Looking back I realize, there were many factors that kept him close, the first was ME! Right or wrong as a parent you want to protect your child. You do not want to see them put into a situation that makes them feel uncomfortable. I think that makes you very cautious (even if you don’t realize it). I often felt the need to explain Luke’s speech problems. A lot of times people would ask me. Especially when we used sign language in public. I was asked a lot, is he deaf? At that point I was Luke’s translator. It only makes sense, of course you don’t want to be in a foreign land where no one understand a word you are saying, without your translator! Luke seemed to have a hard time trusting people and warming up. He felt more comfortable with people who understood him. People who knew what his signs meant. Here is a list of things I feel really helped;

Hardest thing ever for me (still working on it) LETTING GO! Allowing him to find his own way through

Not pushing it, letting things develop in time

Having friends or family come over and play with him. Even if it was just for an hour while I was still in the room. My sister would come over one hour a week. She brought in his favorite things and did crafts with him. It’s amazing how children will warm up to people when they walk in with their favorite toys

Allowing plenty of opportunities for social interaction—PRESCHOOL

We always have a very busy house. Luke has an older brother and sister. This house is always packed with cousins, friends, and neighbors. This has probably helped more than I know

Do you have any advice on how I can get an official diagnoses?

“I don’t feel I can fight very well for my child, when I can’t get one person to stand behind a diagnoses!”

I hear again and again parents say they cannot get a diagnosis, or that their SLP is not ready to commit to a diagnoses until the child is older.

Find an SLP who can skillfully administer the Kaufman Speech Praxis Test for Children. It is just as simple as that. The Kaufman Speech Praxis Test can be given at two years of age. It will simply identify what level your child’s motor-speech skills are at. It will allow your child therapist to target that level and begin treatment.

I know completely and understand how frustrating it is to not have a diagnosis. As parents we want concrete answers. Does my child have CAS ? If not then WHAT is the problem? Read here…

How do you not blame yourself?

I did blame myself at first. Lot’s of thoughts raced through my mind. I thought maybe I just wasn’t as careful with my third pregnancy. I was angry with myself for not being more demanding with the labor department at the hospital. Luke’s birth was very dramatic. I always felt his issues were caused by neglect on the part of the nurses and doctor. If I had been more proactive and had a better plan, maybe things would have been different. But you can question this and question that and at the end of the day you have got to come to terms with the fact that you cannot go back in time and change things. Holding onto anger with doctors, nurses, and yourself is going to do absolutely no good for anyone. After some time feeling angry I just decided to turn the page. This was just out of my control, but what is in my control is TODAY, and getting my son help was the most important thing and became my mission.

Other than relying on God, what else helped you accept and come to terms with your child having severe speech issues?

I believe when you have a child and something goes wrong (no matter how big or how small) there is a type of grieving process that you go through as a parent. It takes time to work through it. You never want to see your child struggle. That is painful, very painful. It’s just something that you never prepare for. I cried a lot. I worried a lot. I took out my anger on people around me. I isolated myself.  Once I worked through many emotions, I realized all of that was going to get me no where, and far more importantly it was going to get my son no where. What Luke needed was for me to pull myself together and start finding him help. He needed a strong support system, he needed me to get tough. Which was something I had never been in my life.

I started researching everything I could. I started talking to people. I started writing, connecting with other people who were going through the same thing. Our family began signing with Luke and became excited about learning a new language (and thrilled to see him start expressing himself through sign). There was a point I had resolved myself to the fact that my son may never talk but felt peace we would always be able to communicate with our hands. Even the extended family all rallied behind him and began learning his new language.  We found a wonderful therapist (Lucid Speech). It took months and months to see real changes but CELEBRATED THE LITTLE THINGS! I always (and still do) remained focused on all the things Luke CAN DO! I realized this was going to mold Luke into the person he was born to be.  I became GRATEFUL and feel blessed that God entrusted such a sweet special boy to me.

I Had such a turn around in my heart. I went from wanting to get through all of this and then just burn every last record, every test, that my son had gone through. That just wasn’t the plan. I’ve be able to share Luke’s story through videos, blogging, writing. I was thrilled to have an article published about our journey. I learned to let go of my silly pride, and try get real with myself. I have always wanted to reach out to other people and let them know there is HOPE, and lot’s of it. Sometimes things just take time!

My mother-in-law told me a very important piece of advise very early on in our journey. She said, don’t find yourself so consumed in all of Luke’s speech that you miss out on this precious time with him.  You will never be able to get these moments back. Don’t worry so much, ENJOY HIM!

Please, if you have something to add that could be of help to others, feel free to share under the comments section.

If you are a therapist who works with Childhood Apraxia of Speech, please comment so we can find you!

I never allow comments on Luke’s You-Tube videos.  In the past I have received some of the most random and  occasionally just down right rude comments. I try to guard my son against things like that. Of course he didn’t decide to show the world his struggles with Apraxia, I did. I have second guessed my decision several times but in the end I like to think I am raising children who want to make a difference in the world.  I like to think if Luke ever questioned me about it, I could say, “You gave people hope, you showed other families what is possible!” And I like to think that would settle his thoughts. I hope I’m right.

Yesterday I was doing some random searching on Apraxia videos. I haven’t checked in on my posted videos in a long time. I was so surprised to see Luke’s very first therapy video has received over 12,000 hits. I think people are drawn to it because he looks so young. He WAS young, just barley two. A lot of people sent me responses wondering how he could even begin therapy at such a young age.  I ran across another little guy, Owen! Owen’s mom posted a video of Owen at 33 months, after six months of taking fish oil. I remember Owen. This was the video I found and watched nearly two years ago when I was searching for answers myself! This little guy is so cute. It was wonderful to see him talking and answering questions independently.  I scrolled down and started reading the comments. I chuckled as I read this one,

“Are you sure he has verbal apraxia? Cause he not even 3, and he bright!! (and really cute too.”

I loved Owen’s moms quick response,

“Yes, I am sure. He was diagnosed by a speech clinician. Many children with verbal apraxia are very bright and very cute ;-)”

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That just reminded me and reassured me of what a great idea it is to keep You-Tube comments in the off position….

CUTE? YES!

After a day at the beach Luke says, “I want to jump in a sleeping bag and go swimming!” I said, “Luke, that doesn’t sound like such a good idea.” He says, ” Yes it is, that way sharks can’t get me!”

CLEVER? For sure!

Blogs are different than regular websites in the fact that they continue to roll one continuous page.  This is not always user friendly.  It would take a new reader hours to go back through a hundred plus posts.  I decided to re-post from this time last year since I have been on the subject of the Nancy Kaufman clinic.

I’m scripting, it’s working! 2/09

There’s a reason speech pathologist spend years and years in school! There is so much involved. The fine details of speech are honestly mesmerizing. Much of the time at the Nancy Kaufman conference my mouth was hanging open and my brain was on overload. As a parent trying to really take it all in was difficult. However there are a lot of things I was able to grasp and have already begun implementing with Luke,  and It’s working!!! Nancy started off with this analogy; O.k if you have a child that has very little or no spoken language it’s likely you would start introducing sign language, hopefully the child would be able to pick up some approximations for signs. We certainly would not expect a young child to make a perfect ASL sign. But if the child makes the attempt at it, we would be very happy about the effort and would quickly learn what the child’s sign meant for that particular item. Thus the same thought should be in effect when it comes to spoken words. If a child can learn to make best approximations (to his/her ability)  for words, it’s a starting point. As time and therapy goes on you can help the child bridge the gaps and fill in the missing parts! Example Luke’s best word approximation for “Ball” may be “Ba”. L’s are very hard we can fill in those l’s later on when he gets them. Luke says “Pu-Pa” for purple. R’s again they are hard, they will hopefully come in time. Breaking down words to their simplest form and encouraging the child to make best word approximations. I love the example of breaking down the word “people”. If Luke pointed to a crowd and said “Pe-Po”, I would know what he meant. Just like I understand his signs even though most are far from perfect. That’s just one general idea. Hopefully that makes a little sense.

Another great tip that is helping so much is always putting the answer in the question.  To ask an Apraxic child to come up with answers out of thin air is extremely hard.  Example if Luke was trying to open the door I might say, “What do you want me to do?” but way better for me to say, “Do you want me to open the door?” even further I would say, “Do you want me to open door?”  The answer to my question is fresh in his mind, it was the very last thing I said. “Open door?”  Then I may ask him, ” Tell me Luke, open door?” Luke responds with ” Oh-pa,  do.”  Yes, it’s far perfect but again I’m happily accepting it and praising him big time for his attempt. Nancy was talking about scripting, a lot!  Helping your child write your his/her dialog. I’ve found a new passion of Luke’s, cooking! It’s a great place for scripting. It would be something like this;

“Luke, do you want to open eggs?”

“Tell me, open eggs.”

With my help and prompting he says, “Oh-pa,  eh-g” then he gets to open the eggs.

Even if I have to break it down one syllable at a time, “Oh- pa, eh-ga.” (open egg)

Then again same thing, “Luke, do you want to crack eggs?”

“Tell me, crack eggs”

He says, “cak, eh-ga” (crack egg)

and so on, “Luke, put in?”

Walk him through, “Pu-t, eh-n” (put in)

When you script over and over suddenly you will hear words come spontaneously. It must be that you are training the brain again and again until the cues fade, it just comes automatically. Now Luke goes in the drawer, pulls out a spoon and says, “Ma-ma cook?” I love it!

Another helpful hint is finding the child’s to die for items and activities especially when you are doing speech homework.  Naturally, Luke is  much more motivated when the reward is great! So I’ve put certain things aside and made them only for homework time. Makes homework more successful and a very exciting time for him!

These are just a couple of examples of what Luke’s is working on. I would encourage any one out there to go to the conference for yourself. See the methods over and over so you can get a good grasp of it.  Nancy Kaufman has conferences all over the country and even Canada! See her website for details. If you still wondering if your child even has Apraxia of speech you can send a video of your child, she will take a look at it, and she will call you back to discuss her evaluation. Also see her web site for more info. click here. If you are in the So. California area you can also see Megan McCann at Lucid speech in Murrieta. She is also an expert in the field of Apraxia, trained in the Nancy Kaufman methods, and conducting research in the field of Childhood Apraxia of speech. She sees many patients who travel a distance even just for an evaluation. She also takes questions on her website at Lucid Speech and Language.

I know it’s a lot of blogging about Luke but frankly my older kids are computer savvy and on to this blog. They realize when I put silly stories about them and pictures a lot of friends and family are going to see it. They usually don’t let me publish posts about them (so I keep them to myself). But Luke, he’s not on to me, YET!

Luke had the best time last night. Well, I think we all did. I drove home with a warm feeling in my heart. This whole thing  has come so full circle. It just amazes me. Looking back at this past year when I reflect on Luke I think of one word, WORK! He’s worked so hard and accomplished so much. He just had the time of his life last night when we all drove down to speech together. The whole family. Not only were we all with him but when we got there he didn’t have to do any speech WORK! Megan, her family, and their entire staff were there to welcome Three Little Words foundation. This foundation is trying to help cover the cost for children who need one on one speech therapy. An amazing undertaking.  Luke was invited to come because happily we may get to share his story.  He may be their little spokes man.

Any how when we got there,  I could tell he thought Wow, this is a party! Everyone was there. All the doors were open. He was free to roam around. Walking in and out of the receptionist space.  The other therapist office doors were open,  he was eying all their toys.

We were eating dinner on the waiting room table were we usually play quietly waiting for our turn.  I’m standing talking to my husband when I realize Luke’s MIA. I round the bend to Megan’s room and there he is. Standing up on Megan’s table pulling down everything he ever wanted. While having to do absolutely no work for it.

Oh Happy Day!

He was even having a good taste of the pretend ice cream he always wanted to try.

I was cracking up. I’m not sure how happy he’ll be next time we have to actually do therapy.

Then it was time for pictures with Megan. Things could not have gone better.  Just to sit back and watch the interaction between the two of them was a special moment for me.  To realize my sons story will hopefully help children who really need speech therapy and cannot afford it. To watch Gods plan in this unfold.

I had to click a few pictures along with their photographer. He must have got some awesome shots. His camera was clicking a hundred times for every shot I took with Preston’s little camera.

Some gifts you can’t explain. Some gifts are given so freely. Some gifts last for a lifetime.

Miss Megan and Luke

Lucid Speech and Language is expanding. Yeah! They will have a second Corona  location beginning February, 2010.  This is going to be half the drive for us. Megan has a wonderful SLP who is also bilingual doing therapy there. What I love about speech at Lucid is the creative ways Luke’s therapist gets words out of him.  She always encourages cognitive thinking in her activities simultaneously with the speech work.  It’s always something new and exciting. Lucid is truly a place of growth and encouragement for children (and parents). If you are in the area or may even have to drive or fly for that matter, it is worth it. If you are looking for an evaluation I feel confident parent to parent to say you will get an accurate diagnosis.  here. All of the SLPs are trained and have many methods of working with Childhood  Apraxia of Speech!

P.S. Did I mention Megan McCann also conducts research and lectures on Childhood Apraxia of Speech. I am so thrilled Luke has been able to be a part of her awesome work!

It has been a delight for our family.

"Look what I made!" (Did I mention S's are hard?? Snowman, Santa, Snowflake!)

I would love to hear from you if you are or know of a good speech pathologist/Center who specialize in Childhood Apraxia of Speech. It would be great to have more resources for people in different areas. I would love to use this blog to connect people so children can get help! I also think it would be wonderful to have a story page on the blog. If you feel you would like to contribute a thought or a story, I would love to dedicate a place where you can post it and share.

Blessings at Christmas Time-

No matter how simple or how complex you make it, this is an awesome language toy! This is an activity we use at Speech.  Luke got one for his birthday. This is another Lakeshore toy.  It is meant to help children learn to read and rhyme hence the name ‘Rhyme and Read’ but it works great for Apraxia. This activity contains sentence strips and the cutest little figures to fill in the blanks. In the beginning we used it in a simple way by breaking it down to a simple form. Luke would need it scripted for him, one word at a time.

Example; Bee, in, tree/  frog, on, log/ cat, in, hat/ ect.

Now we are adding in all those extra little words. Still scripting most of the time. But Luke can connect 2-3 words on his own. We just spent an hour having fun with this new toy. You can forget the sentence strips and just put together different objects. There are endless combination’s.

I also like pointing to the words to introduce Luke to reading. I am told children with Apraxia often have a hard time rhyming words in school. I figure why not get a head start with it.

Love this activity. Encourages a lot of talking. Seriously!

Our Speech Homework

Now it’s time to add back in some of those little words that children with Apraxia usually leave out.

We made this collage to practice over and over with.

She is cooking.

He is swinging.

She is sleeping.

She is eating.

He is painting.

(They are also very interested in it because they helped to make it.)

♥ If I knew how to make this post light up, flash, or blink I would!  Another Apraixa mommy sent it to me this morning….

Scientist First to Characterize Novel Syndrome of Allergy, Apraxia, Malabsorption

Newswise - A landmark study conducted by Children’s Hospital & Research Center Oakland is the first to reveal a new syndrome in children that presents with a combination of allergy, apraxia and malabsorption. Autism spectrum disorders were variably present. Verbal apraxia has until now been understood to be a neurologically based speech disorder, although hints of other neurological soft signs have been described. The new study, led by Children’s Hospital & Research Center Oakland scientist and pediatric emergency medicine physician, Claudia Morris, MD, and Marilyn C. Agin, MD, a neurodevelopmental pediatrician at Saint Vincent Medical Center in New York, however, suggests that the symptoms of verbal apraxia are, at least for a sub-group of children, part of a larger, multifactorial, neurologic syndrome involving food allergies/gluten-sensitivity and nutritional malabsorption.

“While it is critical to treat verbal apraxia symptoms that often include severe delays in expressive speech production with speech therapy, we need to start asking why these kids are having these problems in the first place so that we can identify mechanisms we can actually target to treat the cause of the symptoms,” says Dr. Morris.

Published in the July/August issue of Alternative Therapies in Health and Medicine, the new study takes a major step toward identifying the potential mechanisms that may contribute to apraxia symptoms. In the study, Dr. Morris collected information from nearly 200 families with children who suffered from verbal apraxia in order to better characterize the symptoms and metabolic anomalies of a subset of children. The data clearly demonstrated a common cluster of allergy, apraxia and malabsorption, along with low muscle tone, poor coordination and sensory integration abnormalities. In addition, Dr. Morris was able to gather laboratory analyses in 26 of the children, which revealed low carnitine levels, abnormal celiac panels, gluten sensitivity, and vitamin D deficiency among others. All children genetically screened carried an HLA gene associated with gluten sensitivity and celiac disease. “The sample size is still small and should be interpreted with caution,” says Dr. Morris. “However this is of particular interest given the recent publication by Eaton and colleagues in the July 6 online edition of Pediatrics demonstrating a greater than 3-fold risk of autism in children born to mothers diagnosed with celiac disease. This brings some credibility to the anecdotal reports of gastrointestinal and behavioral improvements in children with autism spectrum disorders and/or verbal apraxia when eliminating gluten from their diets. Although the implications of these observations remain to be determined, this association and the utility of dietary modifications warrant further investigation, particularly if we can identify a genetically vulnerable group”.

Most significantly, the data indicate that the neurologic dysfunction represented in the syndrome overlaps the symptoms of vitamin E deficiency. While low vitamin E bioavailability may occur due to a variety of different causes, neurological consequences are similar, regardless of the initiating trigger. The study suggests that vitamin E could be used as a safe nutritional intervention that may benefit some children. Growing evidence support the benefits of omega 3 fatty acid supplementation in a number of neurodevelopmental disorders. Anecdotally children with verbal apraxia will often demonstrate leaps in their speech production when taking high-quality fish oil. The addition of vitamin E to omega 3 fatty acid supplementation in this cohort of children induced benefits that exceeded those expected from just speech therapy alone, according to parental report.

“While data from a case series is by no means conclusive, the results clearly point to the need for further attention to this poorly understood disorder, and a placebo-controlled study to investigate the potential role of vitamin E and omega 3 supplementation in this group of children,” says Dr. Morris.

She points out that it is equally important for children given an apraxia diagnosis to receive a more comprehensive metabolic evaluation than what is current practice. Many of the nutritional deficiencies like low carnitine, zinc and vitamin D are easily treated. By not addressing the nutritional deficiencies, the child will continue to suffer from significant medical consequences of those deficiencies. The first step is to identify and treat the deficiencies. The next step is to try to figure out why they have these deficiencies and a fat malabsorption syndrome in the first place. However, Dr. Morris does advise families to work closely with a physician rather than trying promising but unproven interventions on their own.

In the mean time, however, Dr. Morris’s study provides the essential foundation for identifying the children who may need these treatments.

“By identifying these early red flags of the syndrome, we’ve provided a way to get these kids treatment at the earliest possible moment. While 75 percent of the time kids identified as late bloomers really are just that, 25 percent of the time there is a true pathologic condition. To miss it is to miss critically valuable time for early intervention. If a child has all these symptoms, chances are they are going to fall into the 25 percent who have a condition that needs further evaluation and treatment.”

About Children’s Hospital & Research Center Oakland Children’s Hospital & Research Center Oakland is Northern California’s only freestanding and independent children’s hospital. Children’s is the leader in many pediatric specialties including neonatology, cardiology, neurosurgery and intensive care. The hospital is a designated Level 1 pediatric trauma center and has the largest pediatric critical care facility in the region. Children’s Hospital has 190 licensed beds, 201 hospital-based physicians in 30 specialties, more than 2,611 employees and an operating budget of $312 million. Children’s research arm, Children’s Hospital Oakland Research Institute, is internationally renowned in bridging state of the art basic science and clinical research for the treatment and prevention of human disease. With about 300 staff members and an annual budget of approximately $50 million, CHORI is ranked among the top ten research institutes in National Institutes of Health funding to children’s hospitals. CHORI is a leader in translational research, providing cures for diseases, developing new vaccines for infectious diseases and discovering new treatment protocols for previously fatal or debilitating conditions such as cancer, sickle cell disease and thalassemia, diabetes, asthma, HIV/AIDS, pediatric obesity, nutritional deficiencies, birth defects, hemophilia and cystic fibrosis.

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I have heard of these nutritional and supplemental programs being used for Autistic children. I have always wondered if something like this could help Luke, especially with the past seizures. This totally makes a lot of sense. I am going to call the doctor today. We have to keep searching for answers!

Love this game. Sorting by color. Sorting by animal type. Which ones are little, which are big?? Mommy and baby. Making animal sounds. Luke’s therapist has used this game for 20 years. You can find similar manipulative’s at Lakeshore learning store.

I was very excited when I came back from a bike ride to find Dad helping Lily with her home work, and Luke with his. This is my favorite oral motor toy. A green crocodile that has big yellow eyes. You blow and the eyes pop out. Luke loves this one. O.K. So I know it was kind’a dirty to be doing oral motor toys on the drive way. But what can I say. Sometimes things like this happen when my husband is left with the kids. I’m a firm believer in dirt anyhow, so what the heck!

Among other things, we have train whistles, kazoos, vibrating star, teething ring, bumpy rings that are really great for dipping in sour stuff. Pucker -up!

Ready, set, blow!

Meeee!