I know that people do not truly understand that when I say that Stryder cannot speak, I really mean he cannot speak. I have seen some improvement since he started on his seizure medicine; he is actually attempting to get all the letters in his words. For example, if you ask him to say the word "Start" he will say something link "tahts." He knows what letters should be in the word and make all the sounds, but just not in the right order.

Stryder can say "Big," sort of: he says "Beee" but when he is reading, he can say it correctly, putting emphasis on every letter. BiiiGGGG- The same goes for the word "small" which is usually naa- when reading he can sound out every letter and get it right. This gives me hope that maybe through reading he will be able to start saying words. I am sure it is a lot like singing though. Stryder can sing a tune, even though the words are not there his tone and rhythm are perfect- but speech and music use two sides of the brain. When we go for intensive therapy, I will be sure to ask Dr. Strand or Becky about this.

Stryder had a seizure this morning.
We started out with a rough nite. Stryder went to sleep early, probably because he did not have a nap. I woke him about 9 to give him his medicine and he fell back asleep. He started out in his bed but woke and came to ours and didn't stop moving all night. I finally went to the couch to sleep. Stryder decided that he couldn't sleep either and joined me at 2 AM. I went back to bed at 4 when Warren had to get up and go to work, he put Stryder back into his own bed. Again, that didn't last and this morning while he was in what seemed to be deep sleep, he growled like a dog while his body got very tense and his left arm was jabbing into him. His face was very rigid and almost scary looking but as it ended, he was still sleeping.

I really hope that he is on the right dosage for his medicine, it's very scary to see him go through this. I still picture the brain damage that the DR. showed us and wonder if it gets worse when he has these seizures. All this worrying is stressful.

On a good note, Sharon with CASANA emailed me with some therapists in the area-well as close as I will probably get- and I was able to call and/or email them and got a couple responses. Stryder will need therapy 5 times a week and our insurance only covers 60 per year and 120 if it is a developmental delay, which it is, so that comes to only 2 times per week and we still have to pay the $25 for each visit. Oh this will be expensive- and to top it off, we are still not done with the testing.

I am excited to get a hold of a couple of therapists that might be able to help Stryder and am hopeful that he will get the sessions he needs. His speech seems to have become so much better since taking the Keppra. He is trying to add more letters to words and even though they are placed in the wrong places, he knows the words have them. It's actually kind of cute.

We got more results in the mail today along with new diagnosis's - Stryder has always had a hard time with certain expressions such as "How are you?" or "What did you do today?" etc. I wasn't sure what it meant, if anything but the new diagnosis really explains what the problem is. We are not sure if it is because of the seizures or if it is the result of the damaged areas in the brain that we saw on the MRI. We just hope that it will get better.

Definition of Expressive Language Disorder:

Expressive Language Disorder is a learning disability affecting communication of thoughts using spoken and sometimes basic written language and expressive written language. This disorder involves difficulty with language processing centers of the brain. Expressive language disorders can result from inherited conditions or may be caused by brain injuries or stroke.

I am working on his video now and will have it loaded soon.

Stryder has been having seizures for a while now, although we didn't know that's what they were. Two doctors have seen slowing in the language area of his brain and they also found some parts of his brain that were damaged. That's a hard thing for a parent to hear. Stryder is now taking Kepra, which may have harmful side effects, but so far I don't see it-sometimes I do wonder though.

I took some video of him playing and singing tonight. I will try tom upload it tomorrow.

Here is some info from the Epilepsy Foundation:

Seizures and Syndromes

I found this letter on CASANA's website. It's pretty much perfect for any child who needs a little extra from a caring teacher.

My Child Has Apraxia..

Dear Teacher,

This year you'll be having my very special child in your class. When you look at my child, you will see eyes that light up and are full of life. My child has many wonderful abilities and talents. He or she looks like the other children in your classroom. But my child has lived with a lot of silence and a great struggle to communicate. My child has Apraxia of Speech.

Childhood Apraxia of Speech is a speech disorder that makes it difficult for my child to correctly pronounce syllables and words. Children with apraxia know what they want to say. The words are in their heads but often the child is not able to produce the words clearly. For unknown reasons, children with apraxia have great difficulty planning and producing the precise, specific series of movements of the tongue, lips, jaw and palate that are necessary
for intelligible speech. As one expert has said, “The problem occurs when the brain tries to tell the muscles what to do -- somehow that message gets scrambled. It's like trying to watch cable TV stations without the right descrambler. There is nothing wrong with the TV station, and nothing wrong with your set. It's just that your set can't read the signal that the station is sending out. The child must figure out how to somehow unscramble the
mixed messages her/his brain is sending to her/his muscles”.

Children with apraxia, however, do understand language and speech. Yet others might mistake and misjudge their unclear speech or quietness as a lack of intelligence. Many children with apraxia experience a great sense of failure and frustration in their attempts to communicate. Some children grow even quieter; others may act out their frustration. Children with apraxia need the support of teachers and parents.

Each child with apraxia is a unique individual, with their own set of abilities, needs, and challenges. However, one common theme is that for some period of time, children with apraxia of speech need frequent and intensive speech therapy that is targeted to their greatest challenge so that they can learn to accurately produce syllables, words, and sentences. These children truly need the services of the Speech-Language Pathologist (SLP).
The SLP can work with you to help create a way for my child to communicate with you and classmates, demonstrate what he/she is learning in your class, and to continue improving his/her speech ability and communication. In addition to actual speech skills, at some point of time it is likely that my child will also need to work on expressive language and conversational skills.

Thank you for taking the time to read a little bit about my child’s speech disability.

Please let me know if there is anything I can do to help you better understand my child and his/her needs.

Here are just a few ideas about what can help my child in your classroom.

What you can do:

 A speech-language pathologist (SLP) needs to help my child
learn to speak with more ease and clarity. It will help my child if
you communicate frequently with the SLP and determine if there
are things that you can do in the classroom to help my child communicate and practice speech.

 Try to create a tension-free and interesting “communication
environment” for my child. Encourage but do not insist he/she try
to speak. Praise his/her attempts at speech, if only for effort.
Please know that sometimes my child might not respond or
might respond “I don’t know” as a way to help themselves get out
of a difficult communication challenge.

 Be patient. Sometimes the fast pace of others can leave my
child out of the experience although he/she may be able to successfully communicate if others just offer a bit more time and patience.

 Watch for and even create opportunities to help my child make friends. It can be difficult for a child with apraxia to “break into” social communication and situations. A supportive and nurturing
teacher can surely help. No child should be lonely and all children need a friend.

 Intervene immediately in any situations that involve bullying or teasing. Reassure my child that you are his/her supporter and advocate and that no teasing is acceptable.

 Be aware that sometimes children with apraxia are also physically uncoordinated, making competitive sports or even drawing, cutting, and other motor tasks difficult. If you notice something, please do bring it to my attention so we can work together to help my child.

 Keep alert for any other signs of learning difficulty. Sometimes children with apraxia have difficulty learning to read, write, spell or do math.

 My child may need to communicate in alternative ways. Often sign language, augmentative devices, or pictures can help my child as a bridge to clear speech, helping us gain insight into his
or her thoughts.

 Most of all, please include me as your partner. I want very much to help my child and to do everything possible to support you as my child’s teacher. I hope we will always reach out to
communicate and share information with each other for the benefit of my child.

Stryder has started to take Keppra for his seizures. I was really worried about giving him medicine of any kind, especially one that can have very severe side effects. He was on half dosage the first week and now is taking the full dose. Every little thing he did, I was worried it was the medicine, but wasn't sure because we just got back and it could have been readjusting. Yesterday was a great day for him though and he seems happy again today. He is still waking at night, but I don't know if it is the seizures or not.

Here is where I ask, beg and then plead for your help...if you have frequent flyer miles or access to buddy passes~PLEASE consider helping us fly back to the Mayo clinic for more testing and intensive therapy.

You can contact me via email, facebook messaging or commenting on the blog or facebook link for more details~especially about giving frequent flyer miles~I have investigated the whole gifting frequent flyer miles plan and know that it would take anywhere from 45,000 to 52,500 frequent flyer miles to make this round trip happen and that it is cheaper and easier if the "gifter" just purchases the ticket versus "gifting" it.

The cost for us to go right now is about $600 per ticket.

Catastrophic.

I had never considered Apraxia of Speech to be a catastrophic, before now.



But it was...and before my conversation with Dr. Strand, I had no idea the real definition.

Catastrophic illness is defined as any illness that requires lengthy hospitalization, extremely expensive therapies, or other care that would deplete a family's financial resources, unless covered by special medical insurance policies.

Not only that, we are still trying to diagnose him on other issues such has his mobility--
My child has a neurological condition that could have a good prognosis, IF he had the proper treatment. Treatment that our insurance company called a luxury. You read that correctly, UnitedHealth Care actually said that speech was a luxury during a phone call. EASY FOR THEM TO SAY....they have a voice.

Apraxia

Apraxia has several definitions as defined by LoudMommy.com ~

A severe speech disorder characterized by inability to speak, or a severe struggle to speak clearly.

Apraxia of speech occurs when the oral- motor muscles do not or cannot obey commands from the brain, or when the brain cannot reliably send those commands.

Verbal apraxia is a disorder of articulation characterized by difficulty with sequencing and organizing motor or muscle movements specifically for the production of speech. It may also be described as the impaired ability to motor-plan.

http://www.asha.org/About/news/Press-Releases/2011/Parents--Don-t-Hope-Your-Child-Will-Just-Outgrow-An-Early-Language-Problem.htm


Original Post from: http://maggieandluke.blogspot.com/

We got back from the Mayo clinic this week. We did get some answers, but one week just isn't enough to figure out everything!

Monday:
We met with Dr. Renaud
She said that she had the week already full of all the tests we were going to do. She asked a lot of questions, but had all the papers we sent prior to coming.
After meeting with her, we went to get urine and blood tests. She wanted to test for over 200 metabolic disorders.

We also met with Becky, a speech pathologist that works with Dr. Strand. Becky was great- When we went in there, Becky knew right away that Stryder had severe Apraxia, when no one has been able to tell for sure. She showed us the graph where his speech falls and the "dot" wouldn't even be on the graph so >1. His expressive speech is showing slowing too, because of this. She told us that she would try to get us to see Dr. Strand this week, but her schedule was very full and we probably would not.
Tuesday:
I can't really remember what tests were done this day LOL, but it was full of wandering the Mayo Clinic

Wednesday:
Consultation for sleep- Stryder doesn't sleep very much at all. Most nights he gets about 5-6 hours at the most and doesn't take naps too often during the day. He also wakes up at night a lot.

We met with Dr. Strand and I was so impressed with her. She immediately said that she didn't have a lot of time, but squeezed us in. Her ten minutes turned into over an hour! Dr. Strand is the BEST known speech disorder Dr. in the world! and to get a chance to meet with her was an honor. We were told that it wouldn't happen, she doesn't see new patients and rarely works with children anymore.

Dr. Strand reaffirmed the Apraxia diagnosis and got so happy when she was talking with Stryder. It was such a wonderful feeling knowing that someone had such compassion for someone they didn't know. She talked and talked with Stryder and even brought in another DR. just to show that Stryder had EVERY single sign of Apraxia. Unfortunately, Apraxia is over diagnosed so when therapists see it, they don't know what the real thing looks like.

Dr. Strand said that with extensive speech therepy five times a week Stryder may talk by second grade, without that-eighth grade. She wants Stryder to come back for 6 weeks for an extensive therepy session with her and Becky, twice a day with follow ups after. She was so excited to meet a child like Stryder, so willing to learn and so happy. I can't tell you how this made me feel as a mother to have someone so interested in his future. She also wants to include him in a Study .... We are waiting to get the documents from the Mayo for more Info.
Dr. Strand said that she would like to see Stryder September 10 until October 21, we just have to find more $ to get there.....

Thursday:
Results for the Sleep study were a shock! Stryder is having seizures at night-that's why he wakes up so much and doesn't sleep. He also has sleep apnea and kicking legs. We are treating the seizures with Keppra. It can change moods so I am on watch and very nervous that he has to be on medication now. They want to do more studies if we come back.

More results on the tests. Most things came back negative, but they want more tests. One of the Dr.s feels he has a disorder that is not a positive one at all, but until we know for sure I won't even talk about it or what it is. I don't want to worry about things that may not be there. He may also have Celiac disease. They did a test, but his levels were a little off and a different test is needed to determine if he has it. They also want to do more stool tests when we go back for the six weeks in September.
The Mayo clinic is amazing. Every DR. we met with had the previous Dr.s notes and if we had to do more tests that were not scheduled, we just went. All the buildings are connected by sky walks or pedestrian subways-you never have to go outside. We knew the paths pretty well but when we decided to venture outside we had no idea where we were.--
So now we have to raise more funds to get back for more testing and more therapy. Still to come are some genetic tests, Celiac disease and some stool tests--