Saturday, September 8, 2012

Our medical journey,warning a bit lengthy.

Tuesday the kids and I went to a homeschool field trip with several members of our church.We had a wonderful time and really enjoyed ourselves,but once again as I look around at the kids and teens I feel that all too familiar lump in my throat.I think it's this little seed that Satan often plants in my head saying "Why can't my kids be normal?" "Why do my kids have to go through these things?It's unfair Lord!" I often wonder what would their futures look like if they didn't have these seizures destroy so many things in their lives.

I want to take you on a journey going way back 10 years.Before July 2, 2002 life was wonderful not perfect by any means,but wonderful.We never had a lot of money,but we somehow always scraped by.I loved homeschooling it was one of the greatest pleasures I had.In the younger years we did unit studies I loved them so much they were so much fun.We did Unit studies on the states,Holling Clancy Holling books,Little House on the Prairie,bridges,volcanoes,Ancient Egypt and ones on different time periods.We incorporated Math,Science,English & History into these,plus we would make food from these things,go on field trips,and do crafts.I couldn't be happier and the kids really enjoyed it.When they went into older grades we moved to a more traditional boxed curriculum,but still did a lot of field trips and things together.Things were wonderful.

On July 2, 2002 our van broke down in Bremerton.Gilbert and I took Ariel there and left the older boys at home.We fixed the van and came home only to discover a note on the door saying Daniel had,had a seizure and is in the hospital.At this time I was absolutely clueless about Epilepsy.I just couldn't believe it. A thousand thoughts were racing in my head.We raced to Mary Bridge and discovered a very wore out looking Daniel.The doctor said he had,had a Grand Mal,but these things happen probably just a fluke.I learned that Daniel was watching his brother play a car racing game on the computer and fell over into a seizure.I asked the doctor if I should keep him away from the computer.He said no.

Later that week we had to stay up all night for an EEG in the morning.Daniel asked if he could play on the computer,well the doctor said it was okay.So I let him 5 minutes later boom another Grand Mal.That was the beginning of an absolute nightmare.Daniel started having Grand Mals weekly.In the beginning they were light induced.He would look at a lamp and instantly go into a Grand Mal.He also started having dangerously high blood pressure and had to go on meds for that.At that time we started the medication merry go round that had little success.We had terrible doctors at that time as well.Ones with very little compassion,especially for a parent new to all this.One even said we could let him convulse for 20 minutes before calling paramedics,what? I didn't know much back then,but knew that wasn't right.

Another strange thing also started happening at this time the people that we loved and cared about most started disappearing from our lives.People who we used to spend large amounts of time with started walking away from us.No longer returned phone calls started making excuses as to why we could no longer get together.Even relatives no longer wanted to be around Daniel.This was so devastating to him and us.How could people be like this? Anytime someone was sick or suffering I always tried to be there for them,to help them, bring them meals or watch their children if need be.I just couldn't understand it.I learned people not only get afraid,which is totally understandable,but they also tire of medical situations quickly.They want to go about their lives and not be hindered by such things.It's sort of the out of sight out of mind mentality.Before this the kids were very social.We always went on a lot of field trips and did activities with other people and they always had a lot of friends at their birthday parties and just around all the time.Soon after it was just us.

We saw Daniel get so many injuries and go through so many things, meds that made him gain a lot of weight,become psychotic and get rashes and lip swelling.Before all this my kids and I myself were very thin and fit.

As you can see in the picture above Daniel's face looks very puffy.

He just changed so much from the effects of the seizures,meds and injuries.It's hard to see,but if you click on the picture to enlarge it you can see Daniel's hands in a curled position something that often happened before a seizure.He also looks very out of it.More of the rest of Daniel's story can be found here:

Eventually we settled into our new normal and tried to make the best of things and to go back to some of the things we used to do,but adapted things to the new seizure precautions Daniel was under. At this time I also started noticing changes in Ariel.They were subtle at first and it had more to do with her comprehension and understanding.

She could no longer do things that she used to be able to do.Mainly it hit her academically,but it was very severe.At the age of 9 she no longer knew shapes.She seemed like she didn't understand what was being said to her.She was not this way before.We did an EEG on her,just for the fact of Daniel's history she came up Epileptic as well and also started having a lot of weird medical problems.Her story is in videos listed below.

So here we were dealing with two kids with Epilepsy then Intractable (uncontrolled) Epilepsy.

It was quite a challenge believe me.Between juggling many doctors appointments and trying to homeschool,plus trying not to make your other kids that don't have health issues  feel left out or unimportant it was a real juggling act.

Schooling with Ariel became tremendously difficult ,because she would not retain information.She would have it one minute or one day and then a day later or ten minutes later it would be gone.I felt so bad for her she would often cry out of frustration.I also started seeing Daniel's mental capacity diminish as well.He used to have a memory like you wouldn't believe.He could remember paragraphs with letters numbers and symbols all in a row.Sadly not anymore.That's what years of uncontrolled seizures do to you.

What I couldn't understand was why was Ariel so much worse than Daniel mentally? She did not have Grand Mals only petit mals in the form of Absence or Complex partial seizures.For years they told me it was all from birth,because she did have severe Respiritory distress syndrome when she was born,but she quickly recovered. I schooled her,her whole life I knew that was not true she couldn't do things now that she could do when she was younger.

It took many years of fighting with doctors saying something is very seriously wrong with my daughter.Then in June of 2009 she went into status Epilepticus and had 15 convulsive seizures back to back.The paramedics took her to the hospital laying on the table in the E.r. she just would'nt quit seizing.Load after load of medication and nothing seemed to wrok she would stop for a few minutes and then start again.

She ended up getting brain MRI's and spinal tap and was tested for a mountain of things.First I was told she may have Encephalitis,then it was changed to progression of disease.With this whole thing came something I had never seen before called Dyskenesia a movement disorder caused by a med reaction.Also after she came out of this episode she had amjor sensory issues that were very severe.She also started going in and out of status all the time.

Before Ariel's status event in 09 we had another situation happen.This happened in October of 2006.Michael was climbing a tree and fell.We originally thought he fell a few feet and landed on a bush.He seemed okay ,but said he was feeling very dizzy,so I took him to the E.R. and they checked him over said he was okay and sent us on our merry way.The next morning we discovered he had fallen many more feet as we saw broken branches all the way down the tree and there were no bushes underneath.

Michael was feeling even more dizzy and his eyes looked weird.Something about his pupils didn't look right.I took him to Urgent care where I was informed he had a level 2 concussion and was put on oxygen.We were there all day.Then he was finally released after x-rays and cat scans.After this he started having these dizzy spells all the time and would just fall asleep in the most odd places.We went to doctors for two years trying to figure out what was wrong with Michael.Finally he got the diagnosis of Epilepsy as well.With Michael though his seizures tend to be more controlled.He does tend to have more in his sleep,but not to the degree Daniel and Ariel do,but they have also affected his learning.
We've had some very tough times in the past 10 years.

Last August I took all three kids to Harborview to do testing.They came to the conclusion that all three are believed to have a genetic syndrome.Most likely a Sodium channel mutation in the brain.I've been told this is progressive.Since then we've changed meds around.Ariel got a VNS implant put in her chest that has helped her a lot convulsive seizure wise.And we just keep moving forward trying to find new treatments and things to help them.

We've learned to praise God even through the hardest of times.We've also seen where God has blessed us with kind compassionate friends along the way that have helped walk along with us and shared our burdens.We are so thankful for that.Thank you all again for your kindness,compassion and caring.Thank you most of all for your prayers.This is the kids prayer page we appreciate your prayers and support.If you visit there please hit like.!/PrayForDanielMichaelAriel

Thank you for sharing our journey!

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