Medication Mistake

I am in charge of making sure that we all get our medications taken and refilled. I am usually good at this but recently I made a big boo boo. I am the one that had to suffer the consequences. We were getting ready for vacation. I called in all refills. Picked them up and filled all daily medication boxes. What I didn't know was that the pharmacy did not fill one of my prescriptions.  I did not catch this and filled my box with doses of a very similar looking medication that I had never been on before.  This medicine had been called in by my Rheumatologist without my knowledge. on our last visit she was going to check on something and see if insurance would cover it. This was a non sedative muscle relaxer. I took this for over a week thinking it was my kidney medication. I have Lupus kidney involvement therefore I must stay on Cellcept to keep my function normal. I noticed swelling in my feet which I contributed to all the driving. Fatigue was something that I deal with everyday but I could hardly get off the couch. This went on until I noticed that the pills were not the correct ones to go into my weekly sorter box. The pharmacy ran the prescription through with no problems but was told that the insurance company would not pay for it prior ... After being on the correct medicine my flare has been less noticeable. My advice would be even if medications looks similar READ the bottle. I am very careful with medication and would prefer to live without it but thankful that God has given knowledge to doctors and scientist on how to treat our physical needs.

Diagnosis Process

When my son was three the first diagnosis that made since to me was something I saw in a book called aspergers syndrome. We got in with a developmental pediatrician who ordered speech therapy. I left thinking speech was ridiculous, he has an amazing vocabulary. Instead I enrolled him in a developmental pre school. He went part time for 2 years. By the end of 4 yr. old pre school, I took him for Play therapy.  After a couple months they suggested we get a psychological evaluation.  We then saw a child Psychiatrist who told me to read The Bipolar Child and set up therapy with a male therapist who had no children,  He agreed that the little guy was quirky, anxious and had a temper. He had no clue as to how to get this child to use the bathroom like other 4 year olds. After awhile therapy was history. We enrolled him in kindergarden. He had really bad separation anxiety.  He spent his 1/2 day of kindergarden talking about sharpies. He would tell his teacher what colors they made and what kind of points they had. He would blurt out noises in class and had a hard time sitting in his seat and doing any writing. He was put on ADHD meds. which helped him survive kindergarden but he was soooooooooooo evil when the meds wore off.  He got off the school bus threatening to blow up the school and my how his vocabulary grew that year.  He learned every cuss word know to man... His testing was very uneven. He was exceptional with word recognition, decoding, reading but his math/handwriting was not good at all. He was seeing a new therapist who also thought he met the criteria of Aspergers.  We saw the Developmental Dr. again who had no doubt that he has Aspergers.  His exact words were a psychiatrist wold give him 12 labels but the best diagnosis for him is Aspergers, sensory integration and Dysgraphia. With these labels, we were able to get an IEP for 1st grade, He was able to get speech and OT. He had a great teacher and Special Ed teacher. I volunteered all year so we made it. He was also on medication to stabilize his anger outburst.  Second grade was good too.  His teacher had an Autistic child so his behaviors did not bother her.  He had been in the same school for 4 years and knew everyone. Third grade was another story. He had to move up to the intermediate school.  He had so many changes and did not know the staff. He did not want to go to school. He would fight not to go. He was sick a lot too. He couldn't keep up with the work.  He could do the work at school with help but had no clue as to how to do it at home. He was moved away from the other kids because he was disrupting the students from doing their work. He shut down even more. He was always telling, which wasn't very popular with his peers. He was being picked on and teased. The special Ed teacher made arraignments for him to ride the Special bus to promote independence.  He was teased about this too. We went through many medicine changes. We tried moving him to the Autism class. He left the class and told the principal that he had problems but not like those kids. He was then moved into another class for the last 6 weeks. He had been getting honor roll but this teacher expected more so his grades dropped. He was still fighting us to stay home. This summer was worse with peers. Fourth grade did not happen. I went to orientation alone.  He never went.  We had home bound teaching for the first half of the year. The second teacher convinced me I could home school. We pulled him out and tried a computer program called Switched on School. It is a really good program but we had to unschool for awhile because he had totally shut down. We went to yet another therapist that we stayed with for 4 years. We did individual and group therapy. We saw a very caring psychiatrist who was recommended by the Developmental Ped. He was at wits end with meds as my son was growing.  By now we had added ADHD, Anxiety, Dyscalcula and Bipolar to the diagnosis. We continued different methods of home schooling. We saw very little Aspergers at this stage of progression.  When we started 7th grade we tested at learning RX and saw how bad things were still going. I found a program called Play Attention that would be covered by our insurance. We moved again to Christian Psychotherapy.  We have therapy there twice a week as well. He receives play attention a computer based program to help him focus. He also receives talk/play therapy. His therapist specializes in Education. She ran a long series of tests over a 2 month period. This is were we are now, still Aspergers, ADHD combined, bipolar by history, meaning he has shown behaviors, conduct disorder, and learning disabilities in Math/Writing, dysgrapia and Dysclcula. We are seeing a Psychiatrist who prescribes medication but looks at the core health.  He prescribes diet, and natural supplements. He ordered testing for EEG for food sensitivities, testing for Neuro transmitters and sent us to a Dr. of natural health for hair analysis.  This test showed that he was lacking in so many minerals and was anaemic. He was not toxic to chemicals that one would expect.  His diet has been so restricted as most children on the Autism Spectrum that he is suffering greatly.  We have added a liquid supplement/trace mineral. We noticed his coloring looked better right away. We tried a GF/DF diet with much resistance. It is on hold for the time being as it added more stress to all of our lives.  He is attending church which has always been a problem for him and anyone sitting near him. He enjoys home school bowling and wants to meet new kids.  He finally realizes that the kids who treat me bad that are nice to me today are still going to set me up.  We are making progress sometimes it feels like baby steps or some days we have regression.  But God knows what He is doing and we trust him to guide us and give us wisdom in raising this wonderful child of mine.

THINK Aspergers

My son has Asperger Syndrome. He like other kids on the Autism spectrum want to be social and have friends. It does not come naturally to them. They have to be taught social skills from social stories, social skill groups, TV/movies, computer,games and patient people who work with them on this area. These kids THINK differently. They THINK Aspergers.  My son is very animated, moody, anxious, and loving. He wants friends so badly. He copies lines from movies, cartoons, and video games.  He says things that are not appropriate and sometimes disrespectful.  He sees himself on the same level as adults. He often interrupts because what he has to say is what is most important at the moment.  He is not trying to be rude, he is being Aspergers. These times can be teaching moments if Mom remembers to THINK Aspergers and not be impatient or embarrassed.  My son is quirky as most AS kids are.  They all have special interest. That is all they think about and talk about. This drives other children away and they don't seem to understand why.  He is emotionally immature.  Asperger kids are at least 3 years behind their peers.AS kids test unevenly.  They seem so smart in some areas that adults expect to much from them. They are very literal. They are confused by metaphors, idioms and lies.  They know a script and if the script is not followed they become angry or emotionally upset.  They are easily taken advantage of and bullied. Our kids do not respond to typical parenting techniques because they are not typical.  Consequences are not something they learn from. They need us to be calm, stay sane and not react. AS kids feed off our emotions/stress. They are prone to melt downs/Rage/destructive behaviors. Medications, diet and therapy can help. 

As a parent of an Asperger child I need to educate myself in order to get the proper help and services for his specific need.  I need to pay attention to his emotions and act accordingly to prevent meltdowns, THINK Aspergers.  I need to Respect his needs even if they seem unusual or senseless.  I need to build his interest and strengths.  I need to THINK abilities not disabilities.  I need to provide outlets for his negative emotions.  I need to offer him new sensory experiences in small doses.  I need to be his advocate.  I need to allow him to experience anger, frustration and unhappiness w/o judgement or criticism. I need to respect his fears.  I need to collect my thoughts before I respond to him.  Each Asperger child is unique. Without a proper diagnosis a child will go through life not knowing why they are different.   Why do they THINK Aspergers? We as parents need to THINK Aspergers and educate those around them about Asperger Syndrome Disorder.

Sensory Issues in Autism/ Asperger Syndrome

Sensory Integration is like indigestion of the brain. Autistic children are affected from this every day. They can function better with help.   New situations are scary because they are unpredictable. Hard-headesness is a survival skill for these kids. Humans learn to cope with a changing enviroment by being flexible. Autistic kids are not flexible.They are very rigid, they like sameness. They appear stubborn because they are not the boss of their own body. They are not in control so they try to control us.  Their lives are full of uncertanties and obstacles that are not part of the script that they know. They have trouble adapting to lives demands. They require our attention tailored to their needs.

www.tonyattwood.com for more information on Sensory issues.

Teens Now

I really haven't been around today's teens other than seeing the mischief of the neighborhood. I was thinking WHY did they put me with teens in AWANA this year.  I worked with 3-5th grade girls for 10 years, I feel safe there.  I didn't even like the teens that I have met.  That was September.  I had a lot of praying to do... Lord love them through me. Now, that the AWANA year is close to an end I have a burden for these kids. (teens) They live in a different world than I grew up in. Cyber World where every thing is instant.  What pressures they must feel.  Can you imagine being a girl in high school having a bad hair day/mood swings/boy problems/pimples ect. and your face being posted online for all to see.  Cyber Bullies...Yes they are your friends and enemies and we thought we had presure. Kids today can't sneeze w/o worring that someone caught it on there camera phone. How do we expect them to be respectful? They have not been taught RESPECT for GOD, parents or authority figures. They hear so much disrespect from those in charge that they we are reaping what we have sown. We grew up with dress codes at school. We stood with our hands on our hearts to say the Pledge of Allegience to the flag.  We were allowed to pray at school.  We said yes sir. We did what we were told or there were consequences.  Not sure how I got on this but was trying to say life is different than when we grew up.  They need safe places to go because they will find places to hang out.  They need role models who are not Bad Examples. They need youth groups where they are loved and accepted for who they are. Places where they can learn how to live  and be what God intended them to be. They need our love acceptance and prayers.

Todays teens are not the bad people I expected them to be.  They are stressed, children in growing bodies trying to find out who they are.  They need our help.  If not us as Christians the worlds. Whose view do you want for your children and grandchildren?  I was taught at a very young age, :Don't let the world around you, squeeze you into it's mold."  This is what I wish for our teens.

Natural Approach

About a year and a half ago we met Dr. Charles Parkercorepschblogspot,com where we started a new journey to find solutions for our son. He was very optimistic.  He saw his problems as internal/gut related and gave us a lot of hope,  He is the first Dr./Psych./therapist that offered us HOPE.  He ordered neuro transmitter testing, labs, and we did 110 food allergy testing. Of course his neuro transmitters were way off.  His food sensitivities were so many that there was very little to eat.  I shopped organic and prepared Gluten free, dairy free, egg free, tried to cut out sugar, food dye, and just about everything that US people eat.  That didn't last long.  He ended up in the hospital twice.  His rage/explosiveness was worse than ever.  He was stabilized and we had an okay year until the medicine stopped working again.  You have to know that some people never see this other side to my child.  He can hold it together until he is in the safety of those closest to him. That would be US.  He  has no desire to take the supplements or follow a special diet.  He referred us to Dr. Bonnie Rose ND www.NaturalHealthDr.com.  She is a very caring, educated doctor with a nutritional approach. She did a hair analysis. Today we received the preliminary results. She was able to describe what was going on with him by all of his imbalances w/o a medical history.  She could see his rage, mood swings, depression, impulsive and adhd/bipolar behaviors. She is also moving into Dr. Parker's practice next week, which is a giant plus for us as they work together. I feel like the puzzle pieces are coming together.  She has Fibromyalgia as I do.  She recommended the same supplement that he will be starting on Christmas Eve.  We will start together.  She has a lot of Hope for him.  She is so excited  for his future. He has so much potential.  She feels that he was born with most of these imbalances which have caused malnutrition even though he appears to be over weight. My prayer for the New Year is for him to become healthy/happy/ and be able to enjoy life w/o stress/anger. For three years his prior therapist has been preparing us for Residential treatment, but we know God Gave Us This Child and has a plan and Purpose for him.

Holiday Headaches

Holidays are stressful.  Let me say that again, Holidays are STRESSFUL... IF you have physical health problems, special needs or are just human, Holidays are stressful!!!!!!

 You can plan the perfect Christmas. Make your house look like a Hallmark movie or decorate your yard to impress your neighbors.  You can out do your children's friends parents when it comes to gift giving. Give gifts that you cannot afford or will be paying for until the next Christmas. You can put pressure on yourself that will make you so exhausted that you cannot enjoy the day, memory or the joy of giving.

I know this because I have done these things. Giving is joyful but not when you give because it is expected.  I have hurt so bad after cooking for two days for a perfect Christmas Dinner that all I have wanted to do is take a pain pill and sleep.  Let's not even get into baking...

Last year my child's big present was a keyboard.  One day he may play it.  Guess what he loved?  It was a book about World War II.  He read it out loud to us all morning. He was so thrilled.

I love Christmas but every year they rush it earlier and earlier so that by December 25th all the stores have is valentines and spring apparel. People take there trees down the next day because they are over it.  That is the week that we should be celebrating.

This year I plan to remember the true meaning of Christmas. I am not going to over do or over give and try not to over eat.  I want to give from my heart. I want to relax and enjoy the memories.  I want to enjoy my family, relatives and friends.  I want to remember that it is a celebration of the birth of Christ.  I want to take time to reflect His Goodness and Grace.  I want to remember The Reason for the Season.

:For God  so loved the world that He gave His only begotten Son, that whosoever believeth on Him shall not perish but have everlasting Life." John :16

Yet a New Approach

Today we met with a therapist at Christian Psychotherapy.  She takes both insurances meaning no co-pays...She also does Play Attention which is a computer based program used for ADHD and other disorders.  She wants to work on a therapy for Trauma called EMDR.  I am so excited.  We have been with the same therapist for 3 1/2 years.  We are ready for a change.  Puberty has come and behaviors are constantly changing and keeping us on our toes.  We want to do Learning RX too for cognitive skill training. It is pricey so it is on hold for now.
My husband's MRI was normal.  All we know at this time is that his vitamin B levels were elevated and a statin was stopped.  This has caused muscle weakness. He also had a normal muscle biopsy. He seems to be doing a lot better now that the constant appointments are slowing down.  

Special Needs Families

If you have a member of your household who has a physical, mental, emotional, learning difference or medical disability consider yourself a special needs family. Welcome to the club.  It is not so bad.  It is just a way of life. It is your normal.  It is not to be understood or appreciated by most.

 People may not understand why you have good intentions but cannot be dependable.  They may not see/feel your pain or understand your illness or your loved ones differences. You will probably be judged, criticized or even talked about for not doing what others think that you should be doing.

Life is not easy for the normal family.  Times are hard for all.  Let's try not to judge anyone that we have not walked a mile in their shoes.  Instead let us pray for these families.

If you are a special needs family consider yourself blessed. God cannot trust everyone with what He has entrusted to you. 

What if and Whens

What exactly is your child's diagnosis?  Why are you raising him?  Wouldn't he be better off with his kind?  You home school him?  You are not his mother?  What's going to happen when he gets bigger?  He needs to be social.  He needs to fit in.  He needs to.....  Eye brows are always raised. 

Yes I have been asked all of these questions and a multitude more in the past twelve years.  Do I answer them?  Sometimes I do and sometimes I grit my teeth.  Sometimes I even wonder why our normal seems to be so different than typical.

We are trusting God for the what if's and whens.  As for a diagnosis, it is just a label or many. I can say his therapist and psychiatrist feel he can get a better education at home.  The special ed  teacher that test him yearly recommends one on one teaching for him. 

We have storms in our lives that cause us to question and rethink our goals.  We wonder how much abuse do
we put up with in a special needs child and how capable is capable? The storms will continue to brew but the sun always shines. 

Hurricane Irene Heading our Way

We started our week with a earthquake in Virginia.  We are now awaiting a powerful hurricane that will travel up the east coast. We had 14 inches of snow last winter. All of these are not common for our region.  We see snow but not large amounts.  We have effects of hurricanes but not evacuations.  Earthquakes are unheard of. We are as ready as we can get.  Preparing for the worst and hoping/praying for the best.  Be safe.

August 2011

Where did the summer go?  It has been sooooooooo extremely hot and the air quality poor due to the dismal Swamp fires.We have been indoors way to much.  We have not even used our grill since May.  Looking forward to some cooler temperatures so we can clean out the shed and get rid of some of the clutter around here.  Our plan is to get our home in repair so that we can move in two years. If The Lord sees fit we would like to move to Summerville, SC to be near family.

Our son has started Martial Arts and still likes it after three weeks.  It is a Christian program where they memorize scripture and it teaches character.  His instructor has taken a job out of the area so we will meet the new one on Monday.  He is not good with changes.  I hope they will hit it off.  If not we have another option to take the class at a different location.

We will be home schooling again this year.  We have not found a school that meets his needs.  We have not been on the special diet but need to do this gradually again so that he will not feel deprived or different.  He has intestinal issues and we see a different Gastrointestinal specialist this month.

We still have not received any definitive diagnosis for my husband.  The muscle biopsy was negative.  They have stopped some of his medications and vitamin supplements.  He had high levels of B6.

I am still hoarse after many months.  I am sure the poor air quality has contributed.  I am assuming it is the Sjgroens, medications and acid reflux.  The endoscopy test revealed a hernia that was stretched during the test. Actually the acid reflux has been worse since they repaired it...

My step daughter and grandaughters health have improved.  They are doing a lot better as this has lifted a great burden from my heart.

I would ask for prayer for a 4 year old name Sawyer who is in the hospital with kidney failure.  Pray for a miracle. His family home schools as well.

Hope you are all enjoying your summer.






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June has been a challenge.

We have been bombarded with medical appointments and co pays this month.  Therapy is always twice a week.  My husband has had numerous appointments with specialist and Friday an outpatient muscle biopsy. We also squeezed in two days of westcock-johnson testing for home school.  Needless to say we are all exhausted and tired of appointments. 
The good news is my son did really well after not making any  effort with his school work.  He scored way above levels on English, 8th -10th on parts of the test. He was in 6th grade.  We just have to work with writing and sentences.  He also went up a level in Math which was only made possible by a patient tester, prayer and the amazing calculator! He has always been behind in math, yet he was getting A's in public school with special accommodations. He just doesn't get Math!!!
My husband is healing from the biopsy.  He still has numerous test before we find out any results.  He is resting and in good spirits. We  are having a laid back weekend before starting another week of appointments... I am thankful for health insurance just wish it covered more.
Looking for a friend or mentor to do things with my son this summer with good character.  We had to do an increase in his medication a few days before testing.  He was very manic.  Obviously, he was stressed about the testing.
We are also expecting another grandchild.  My oldest stepson told us this week that they are 16 weeks pregnant.  Praying for them and that he will get a great job.
A lot on our plate this month but God never gives us more than we can handle.   

Let's Step Back

Stepping back on medication for us is being off ADHD medication.  Today we are starting  Detox supplements for our son.  He has never responded well to any of many medications. All of which have side effects such as weight gain, loss of appetite, eating non stop, craving sweets, constipation, ect...
Our hope that the Amino-D-Tox and Milk Thistle by Design for Life, will cleanse his system which will enable him to respond to medications as needed to make his quality of life better..  This was ordered by his mental health physician for 30 days.
So far he is louder and more hyped, which is normal for him w/o a ADHD med.  He is able to sleep with the clonodine which is helping all of our moods.
This is the next step of our journey, one that was missed because of his lack of cooperation.  We found Dr. Charles Parker at corepsychblog who has taken a real interest in him.  He is working on his total health his bowel issues and brain issues.
We were told by our developmental pediatrician that Aspergers was the best diagnosis at age 5 but a psychiatrist would come up with 12 different labels. Since that time he was right, he has been given many labels.  He had early intervention with many hours of individual, group, speech, OT and an IEP through 3rd grade.  At that time we decided that an individual education plan should be supplemented individually. That is why we home school.  He can learn where he is on different levels.  We are getting ready for the testing required by the state.  Has he progressed, yes but will a test show this?

Sleep,,,, Heavenly Peace...

If you do not have a sleep issue in your house then you are LUCKY and will probably find this boring.  First of all my husband has 2 sleep disorders.  If he doesn't get a good nights sleep, with a sleep aid and his breathing machine then coping becomes next to impossible.
My child  has never sleep through the night until we added a sleep aid at age 5.  He seems to be on the night shift if not medicated.  About 6 weeks ago we tried a different ADHD medication.  We had to stop the clonidine.  We'll what can I say but we have all been rather cranky...Clonidine was added back, Intuniv stopped.  Miracle, he fell asleep with his head on the clean linens in the laundry basket thinking he was gonna stay up again.  I got him to bed and he slept 12 hours, then 8 the next night.  We are w/o ADHD meds. but WE HAD SLEEP!!!!  Without proper sleep he is more prone to rage/tantrums and true irritability.
I too rely on a sleep aid, I have a compromised immune system, I Must Sleep... Coping is a whole lot easier with a good night of SLEEP...Every body benefits.

Medication Challenges

Today I am ready to throw out the Neurotin, not working for fibromyalgia pain...  Health insurance would not pay for cymbalta so I must try this.  Give me back my anti depressant at least I could cope better with the pain and my child!!!
My child is not explosive today nor is he cursing non stop.  Which is something that therapy has not helped.  It's not like he lives in a home where we speak it.  He has his days and nights reversed since his last medication change...He has an appointment Monday so I am working on my list of what we need to change.  He does not respond well to medications.  We did IGG testing which shows he has food sensitivities to almost everything.  We have tried a Gluten,wheat, dairy, egg, cashew, yogurt, yeast, free diet.  He is very uncooperative. If it says gluten free, he won't try it.  He is a picky eater.  He only eats it if it looks right. Yes he is spoiled and over protected, but he also has sensory integration issues.  When I grew up I ate what was on my plate, I can't imagine telling my mom that I was not going to eat her crappy food.  This is part of his mood disorder, I am not to take it personal but it is!!!,
What does that mean, how do you not take it personal when you spend your life loving your child, taking him to doctors, therapist, OT, speech, group,home schooling, because he can't handle school, playing with him because he can't keep a friend and you are the target of his anger and aggression.
Yes, bring back the anti depressant, not coping as well as I'd hoped.  Puberty is kicking in and I can't see things improving anytime soon. Ii will never give up on my sweet little boy who can be the sweetest child in the world until his switch goes off...Prayers and hugs for my sweet child xoxo  Mom




 

Lupus Awareness Month

May is Lupus Awareness Month.  I was diagnosed in 1990. Today I set up a face book page for our local chapter.  Join us at :Lupus EVA chapter
www.lupus.org
Let's Band Together for Lupus  Go to the LFA National site for all current information, trial drug studies and ways you can help
I will spend another day telling My Lupus Story.  Today I have an explosive child to deal with. Which is another blog we won't get into today.

 

Challenge to Blog

My first challenge with this project is learning to blog.  I have never had a computer class so be patient with me.  I'm learning. I'm not a gadget person. I don't play games so don't waste your time sending me all those request on face book.  I only use a cell phone to call for emergencies and never read the manual so don't leave me a message, I won't check it or please don't text if you expect a response. Technology is not my thing.  On the other hand my husband is a systems annalist retired, whatever that is and my child taught his teacher and the other 3 year olds how to work the computer in pre school..  I ask them for help but don't usually understand how to do it the next time.  I think we work from different sides of the brain... anyway, I don't really know where this blog will go but tune in from time to time as I share from my heart what God has allowed us to experience and how life can be with a special needs child.

Our Love Story in a Nutshell

     Once upon a time in a little Church, across the room they met.  They were  at a support group but they became a support system.  After a traumatic event, he rescued her.  He was there to meet her every need as she healed . They dated and were married one year later. God brought them together.