Landau Kleffner Syndrome

Today is Epilepsy Awareness Day.  One of Kamiree's diagnoses is Landau Kleffner Syndrome which is part of the epilepsy family.  I have never got in depth with it so I am putting LKS in simplified terms with the help of epilepsy.com so people can understand our daughter better.

1.  In the typical case, a child between 3 and 7 years of age experiences language problems, with or without seizures. The language disorder may start suddenly or slowly. It usually affects the child's understanding of spoken language the most, but it may affect both understanding speech and speaking ability, or it may affect speaking only.

Seizures are usually few and often occur during sleep. Simple partial seizures involving movement are most common, but tonic-clonic seizures can also occur.

2. Its symptoms are "acquired aphasia" (the loss of language abilities formerly present) and usually a seizure disorder. The children usually have generalized tonic-clonic and atypical absence seizures.  This was the hard part for us, because Kamiree lost ALL language she had learned up to the age of 3.  You don't realize how much they say at that time, but video's from that age show us Kamiree was talking and conversing before this syndrome got her. 

The EEG is often the key to the diagnosis. A normal EEG, especially one done when the child is awake, does not rule out this disorder. Sleep activates the epilepsy waves in these children, so sleep recordings are extremely important. Sometimes the abnormality is seen only during sleep.

The boundaries of the Landau-Kleffner syndrome are imprecise. Some children may first have a delay in language development followed by a loss of speech milestones. Landau-Kleffner syndrome (or a variant of it) may also occur in some children in whom language function never develops, or in others whose language skills move backward but who very seldom have epilepsy waves on the EEG. The exact relationship between the epilepsy waves on the EEG and the language disorder is imprecise, although in some cases the epilepsy activity may contribute to the language problems.

3. After age 10, only 20% of patients still have seizures. The clinical course of the disorder fluctuates and it occasionally disappears on its own.

Some children are left with permanent language difficulties. Most commonly, these are children in whom medical or surgical therapy does not eliminate the epileptic patterns on the EEG.

Kamiree is having seizures 30% of the time, but we are unaware of them.  Only through an overnight EEG did we realize she was having these.  Medication can help a little, but does not stop them completely.  We are praying that she will not have permanent language difficulties and that the speech therapy we are getting her will help her when she comes out of this.  

Thank you for all the support with Kamiree!  We are blessed to have you all in our lives and praying for us!  

References

http://www.epilepsy.com/epilepsy/epilepsy_landaukleffner

Joy comes in the Morning

After waiting patiently (okay I know that's a stretch) we got to go see Kamiree's new neurologist today to get test results from her EEG on January 22nd.  I always hate these appointments because if you go in with optimism you usually leave crying, and if you go in with dread you usually leave crying.  So what's that leave us??  Lots of crying.  It's always at these appointments you again realize that you don't have a "normal" kid.  I know some of you are already thinking...there is no such this as normal...but I disagree.  If I had a normal kid we wouldn't go to the Children's hospital every 2 months just to hang out and see some doctors.  I know there is worse, I know Kamiree is not on the worse spectrum in many minds, but again you don't live with her or have to deal with her mood swings and problems everyday like I do.
We found out Kamiree is having spikes still 20-30% of the time, with most of them happening at night. This is good news, because she was at 50% before we tried any drugs.  The spikes did go up a little from the last time, but not enough to warrant change.  It was explained to us that basically this medication is covering up the problem not stopping the spikes.  There is no medication that can stop the spikes.  Kamiree has not had a huge regression in the past 6 months, which is HUGE, but we could be coming upon one again soon.  You never know with this syndrome, so for now we laugh and TALK with her and pray to God she doesn't go back to where she was.
Her neurologist also showed us her MRI from this past summer and showed us 2 white spots that are barely visible on her brain.  He said this might be possibly from a brain infection and might be the tip of the iceberg for all her "problems."  This was the first time anybody has told us that this might be the root of everything.  His recommendation is to have another MRI this summer and see if the spots are still visible and we will know something might have happened.  He said the brain infection and hearing loss then may be related!  Another step forward to finding what's going on, but another guess as well.
He also ordered a genetic test.  I have always wanted this just to see if this syndrome might affect the other kids.  I don't want another child like this, saying this does not mean I don't love Kamiree.  I'm saying it would be so incredibly hard, as if it's not now, but in a way that I wouldn't be able to explain.  There is only so much I can take, and I want to know what our future may hold basically.  Even though honestly, if it is my DNA's fault I'm going to feel guilty.  I have always taken Kamiree's diagnosis as my fault as a mother and even though I deep down know that I am not GOD and cannot control what my child was born with or developed later...you can't help but think what you could have done differently.  Especially if it really was a brain infection...how did I miss that?!?!  I just have guilt and hurt for my daughter.

This being said, he recommended every therapy we can find (which we have been doing), and to continue on this new medication for at least 4 more months.  To give her the best chance of as much of a "normal" life as we can give her.  Hearing this though really did bring confirmation that we are in the right place.  I know I say that often, but for some reason it never gets old to hear or find out.  I don't love Denver, but I love what it is doing for our daughter.  We have found people to love us, pray for us, comfort us, and best of all be our "family" down here.  My MOPS group has changed my life.  I no longer sit inside my house sulking for this life I have been given.  God is comforting me through these people and showing me He cares.  I do still want to scream why!? and I still don't understand why!? but God does and really that's all that matters.

Progress

We had such a great Christmas break!  It's amazing how fast 2 weeks goes when you are on vacation :) As great as it was...it was a struggle for Kamiree.  We went to Thermopolis for a lot of it and Kamiree just struggled with not having a routine.  We love not having a schedule, sleeping in, staying up late...but Kamiree did not.  She had a lot of breakdowns and was always ready for a fight.  Chris and I had decided she was doing so good (before all the breakdowns) that we let her have a little gluten.  We have actually never got her tested for gluten intolerance we just noticed that she seemed to act out when she had it so we made the decision to have her have a gluten free died.  Let me tell you it was horrible!  Within an hour is when she went crazy.  Bad plan for us and we immediately went back to no gluten but she then was sneaking it and had no control left.  After the first 5 days of being in Wyoming she had totally lost her mind and we had to do everything she wanted or she went crazy.  Our lives were back to what they were 6 months ago...maybe even worse!
We did do speech almost every night with her, and she did change a major sentence she has been having a hard time with.  She often says "Please help you" and now she can say "Please help me." :)  It's the little things right?!?

Kamiree with the twins Teagan and Taetum

We have been back in Colorado for 2 weeks now and things have settled down a lot.  Routine is best for Kamiree and boy do we have one this semester.  She has 3 days of speech, 1 day of horse therapeutic riding, and 1 day of gymnastics.  The busier we keep her though, the more progress we see in her.  She only struggles with speech because it is hard for her, but the other things she loves.  I am going to try to get her in to get some OT soon and maybe meet with a behaviorist that can help us with some of the issues we are having.  One of the biggest in the last 2 months is being scared.  It's not a normal child being scared, but terrified to go to the bathroom alone, or really pretty much anywhere alone.  She has even been grabbing Tenley (who is almost 2 ) to protect her.  She won't sleep in her own bed.  And by that I mean she won't sleep!  Chris and I took turns and sat in there for 3 hours and she actually goes crazy where she is screaming and keeping the whole house up.  It's not a normal scream either, a high pitched making people in the neighborhood aware kind of scream.  So we now have a 6 year old that goes to sleep in our bed at 8:30 and has become tolerable for the next day because she has sleep!  I need help at helping her!
BUT...all this being said :)  We got her report card in the mail yesterday.  Colorado does this grading system from 1 to 4.  1 being not progressing as fast as we would like basically, 2 almost proficient, 3 proficient, 4 advanced.   The first quarter she had all 1's and 2's.  I will tell you as a parent of Kamiree, I was excited she had any 2's at this time.  I have this fear that she will never be able to catch up to her grade level because she has so much going against her.  This quarter she had no 1's (Yay!!) and some 3's :)  That means our baby girl is proficient in her age for some things!!  Math concepts is one of them and she really struggled with them last quarter.  All her IEP goals had progress on them and no regression!  For someone with Landau-Kleffner Syndrome this is rare and exciting!  I don't want to put pressure on her to be "normal" because she's not, I just want her to do her best and now I can see she can excel and catch up.  The most exciting part for me is that in language concepts she is now proficient with ASL.  That means when someone signs to my daughter she understands them 100 percent of the time and can sign back!  That is amazing to me and another reason why Chris and I need to learn sign and am signed up for a class starting in 2 weeks.
I'm sorry this was a long one, but so much has happened it seems :)  I have to just share that I have been begging God to show himself to me these past 3 months because I have struggled with Kamiree's problems, our financial situation, and everything that seems to keep going "wrong" in our lives....and He did show me Him in so many ways.  It's not just the huge amounts of money (all relative) that came in so we could give our children a Christmas and buy tires for our car, but knowing He has us in the right place.  I need proof, I need to get over that, but God knows what I need and showed me He loves us and cares for us and He is watching over us everyday, every minute, every second, He is there.  I needed to know that and feel that this Christmas break, and He understood that.
If you are praying for us please specifically pray for Kamiree's EEG that happens on Tuesday to Wednesday please.  She gets to do an ambulatory one (which means she gets to come home after they put the electrodes on) which is much better then staying in the hospital!  This is to see how the new medication is doing with the electrical activity!  Thanks everybody!

A Year Out

I can't believe it has been a year since we found out about the first diagnosis of apraxia of speech for Kamiree.  I decided to read my past blogs from this year and can't help but feel like I am there at that moment still.  Kamiree has made improvements..Praise God for the behavioral ones!  I just received an email from her speech therapist here that said she spoke with the school SLP and she said Kamiree is a whole different girl since the first day.  WOW!!  To hear those words is amazing!

Omaha changed our lives.  I won't ever forget my husband sobbing beside me as we found out our daughter might never be the "normal" girl that all parents want.  She would always struggle with speech and in some cases might never speak.  I won't forget the gloomy skies and rain that plagued Omaha the week we were there.  Our moods going from happy to complete silence and despair as we watched Kamiree on a screen as she hid from the doctors and screamed and punched them.  We had never seen that way and couldn't believe our precious daughter was capable of the behaviors she had.  Finding out most of her screaming was because she didn't comprehend the situation and she was mad because she didn't want to do "hard" things anymore.  Oh the sadness I feel still.  She is still struggling with all those skills that are hard for her and might for the rest of her life.
But, one year out I can say she is improving.  We aren't in this stand still life of her never being able to learn new things and us just watching her crying all the time.  That was our December of 2011, not 2012 :)  My favorite is to hear her laugh now.  For most parents that might be a forgotten sound because they hear it oh so often, but for us we only hear it periodically and it brings such happiness.  She doesn't run away from her speech therapist anymore :)  She doesn't punch her speech therapist anymore!  She says sorry when her speech therapist tells her she isn't working hard that day!  She doesn't run out of her classroom anymore :)  She doesn't punch her classmates anymore!  She caught up on sign language for her age in 12 weeks!  She tries to talk first and if we don't understand she signs!  She doesn't scream when I tell her no bread or pizza dough or anything with gluten :)  She says "make Kamiree sick" and I just nod and she stops!  She smiles :)  She is a fierce fighter when she wants her way!  This is what I'm thankful for the December of 2012.  We have a LONG way to go, but so much has been accomplished in just one year.

Thank you for all the encouragement from friends/family/strangers/ect!  Thank you for loving my daughter when she is so hard to love sometimes.  Thank you for making cookies with her and teaching her new ways to do things.  Forcing her to do things somebody else's way just not hers.  Thank you for the money to put her in specific therapies that will help her.  We could never thank every one enough for everything you have done!  Prayers being the most important!  I can feel it on the days I'm ready to scream....thank you!

Life the normal

I am sorry it has been so long between updates.  Life is passing by and here we are in November!  I can't even began to describe the feelings in my heart because honestly it is indescribable.  I am so overjoyed with the accomplishments Kamiree makes on a day by day basis and then feel trampled by the human emotions that come with having a special needs child.

Point one...we went to Colorado Children's Hospital on October 29th to do a repeat EEG on Kamiree.  I honestly felt bipolar that day.  This was when we would find out if the drug Keppra was working or not.  My mother instincts told me it was not...or at least it had taken my sweet girl away from me and we were living with her evil twin.  I love Kamiree dearly and when Chris and I sat back and realized all the changes we had made in our lives so that we wouldn't have Kamiree cross the going insane line and beating us all up it was a lot!  My mom had come down to watch the other kids for the week so she got to see how crazy I am also :)  I went from not being able to sit still to crying in a hyperventilating way all in a matter of minutes the morning of Kamiree's EEG.  I always feel like we live a normal life until tests come up in Kamiree's life.  Then I realize she is not "normal" and she is hurting inside and not able to tell us and so I feel helpless.  I wish that I could take all this from her and just give her one diagnosis instead of 4 or 5.  That's our normal, that's her normal....

Getting the electrodes on is always the hardest part.  Unfortunately, Kamiree has sensitive skin and they seem to break through her skin and give her scabs when they come off.  The smell is nauseating and a headache is imminent.  After the tears goes long hours begging for the electrodes to come off because they hurt.  I love children's hospitals because they have instant Disney movies, so that really does take away hours and hours of time that wouldn't be pleasant.  She watched Cinderella twice and just like that it was bed time.  I always just stare at the EEG screen seeing what is going on, so it was a blessing and a curse when the nurse shut it off and I couldn't stare at it.  Sleeping is always great as you have to keep unwinding the electrode cords from around your daughters neck as she somersaults left and right all night long.  

Thankfully, she had lots of activities to do from her family!

Thankful for the song and verse, Joy comes in the Morning!!  My Aunt Jodie had come in the morning to spend some time with us since Chris went back to work.  By ten o'clock the neurologist came in and said the spikes are down at night and so medication is working!  Here is one of those "up" times :)  He recommended getting her off the Keppra quickly (Praise God) and going to another medication that does the same thing but does not have the evil twin side effect.  We do have another ambulatory EEG set up for the end of January to see if this new drug is working.  This way we can get the electrodes on but she gets to sleep at home instead of a hospital!

God is good!  He is good when Kamiree is mean/evil/grumpy and good when she is loving/kind/a blessing to be around!

We had Kamiree's teacher conference and were told she has already come to 85% sign language for her age in just 12 weeks!  Her speech therapist tells us that she is constantly going up a level on her speech every other week.  We know she has a LONG way to go, but the improvements make a LONG way not so bad.  We know that God is in control, and we love Him even though our life is not perfect.  We love Him even though our daughter is special needs.  And we even love Him when live seems to not be able to be any harder. 

Kamiree's birthday was November 2nd, and so now we celebrate the fact that she is 6 years old and is able to say sentences!  Maybe by 7 she will be telling us stories :)  

Happy 6th Birthday Sweet Kamiree!  Keep on fighting to talk!

Hello Rollercoaster

If there is anything that I have learned in the past 4 weeks of living in Colorado it is God has granted me patience, and for that I am thankful.  Believe me, 2 years ago I would say that I was not a patient person at the least..but through our daughter Kamiree I have learned and been taught that gift which is crucial to Kamiree's upbringing.  Not that I would be so boastful to say that I don't have my days.
Kamiree is doing good  and bad.  See why it's a rollercoaster? ;)  This syndrome is so frustrating because she will have the comprehension of a 2 1/2 year old and then in the next minute of a 5 year old.  Her brain is constantly having problems and I can't even imagine what she feels like.  I get so mad when I can't remember a word when I'm trying to tell a story, which I'm sure most of you have had, and she has this all day long.  Except it is whole thoughts.  Her speech therapist says it's like she had a stroke, but without even really learning the language first.  That's like pretty much saying "Good Luck Kamiree."  Good thing I don't believe in luck, but the power of God to heal or not heal.  I'm content either way most of the time.  Even though nightly I cry out to Him to please heal her, please let her understand us, please let her know You, and please help her not be so frustrated.  Just a few simple requests right?
Yesterday was a day when I could say, wow I'm happy!  I am trying not to base my happiness on how Kamiree acts or doesn't act, but I have to tell you that that in itself a task.  I picked her up from school early to bring her to speech therapy and she kept saying, "No Bri."  Which that is her speech therapist.  I kept telling her we were going to see Bri, and she kept replying back no no no no.  Well, we got there and she jumped out of the car and went in by herself and 30 minutes later came back out with Bri and told me she was happy.  Yes, so am I dear child I thought in my head!
We hurried home to eat dinner quickly and head out for AWANA.  Kamiree has never really liked being around a lot of people, and well our church is huge so we figured she probably would never stay by herself.  We walked into the church and she ran into the Kindergarten Sparks room and told me to leave.  Awesome!  Feeling good about this day!!  We came back 1 1/2 later to find her in a room with 12 words on the board and 2 girls signing the words and saying them...John 3:16.  Kamiree was trying her hardest to do the verst so they gave her a vest and book and she skipped happily out of the room to find Kaden and hold his hand all the way to the car singing.  I kept telling Chris, "Wow, I'm happy, she's happy!"  You have to understand, this doesn't happen very often at all so we take these small blessings and smile...which sometimes doesn't happen for days.
We get home, check email, and there it is...the bad part of the day...Kamiree had a rough day at school, screaming, running out of the classroom, drawing on tables.  I just don't get it.  I ask her about it, and she tells me she doesn't like school.  Actually, I was pretty proud of her for saying a complete sentence, haha!  But, sad that it's so hard for her.  Motor planning is tough for our little girl, and just another thing that frustrates her in this life.

Even though a day like this happens far in between, I'm thankful for days like this.  I love to see Kamiree laugh and love and smile.  It makes all of us that way, and not so many tears.

Lots of Change

Well, we are officially living in a new state, new house, new smell in the air, and a new vision for our family.  We have lived in Colorado now for about 2 weeks and still very much getting used to it.  It seems like we are in the car all day long running Kamiree to school, speech therapy, hippotherapy, and my least favorite, doctor appointments.  While I knew that moving here was basically for Kamiree, we are trying to balance some other activities for our other children to make sure they feel loved as well.  This is such a huge task with 5 kids I feel like screaming.  The last thing I (we) want any of our other children to feel is unloved.  The other 4 drive with me to all these designated areas, including a half hour in both directions for her speech therapy with at least 45 minutes sitting in a waiting room.  They are great kids I have found out in these past 2 weeks, because a lot of kids couldn't do that day in and day out and they do...thank God for iPads! :)
Tuesday we went to Kamiree's neurologist to find out the MRI results as well as a game plan for her electric activity that is occurring in deep sleep.  Thankfully there was no tumors found or any other abnormalities.  But, he did think that she fits the description of a child with Landau-Kleffner Syndrome (which only about 250 kids have ever been diagnosed with since 1957) While this didn't surprise us a lot, since I had been researching it since Omaha where they said it might be, it still hurt.  The neurologist has decided to start her on Keppra and then do an EEG at the end of October to see if it has stopped the electric activity.  If not then on to the next drug.  Basically, LKS will either take her speech forever or she can moderately get it back, or get full language back.  While getting full function back is basically slim to none chance.  We are trying to stay optimistic, but I will tell you this week has been a huge blow.
After this appointment we headed to her speech therapy appointment where her speech therapist confirmed that she believes she has aphasia as well.  LKS does cause this, so again not a huge surprise BUT this means we have a right sided deaf LKS apraxic daughter.  I just feel like the waves are getting bigger...we are in a middle of a storm.  Each day we wake up and we are still in the middle of the ocean...I just want to see an island at least!!!!!
This being said...we are not giving up!  We have Kamiree in private speech everyday as well as her having it 2 days a week in school.  We put her in the deaf school here so she is learning sign language, which apparently is not affected with this syndrome in 40% of cases, and learning how to communicate.  Our speech therapist said it right when she told me yesterday, "Shiree you have to expect she is going to come out of this and talk or there is not a goal."  That's all it took for me to get over this pity party that I so want to stay in.
Chris loves his job here, I love the opportunity that is available for Kamiree as well as the other kids here, and so this is our new life.  Please keep praying for us!!  We miss Thermopolis immensely!  I miss my friends so much, life is lonely here.  But, the goal is what keeps us going.
That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. 2 Corinthians 12:10