Sunday, February 2, 2014

Ups, Downs and in Betweens

This last couple of months there have been changes with Carter that are alarming and confusing.  In the middle of the night, we will check on him to find he has very high fevers (105), shaking and foam around his mouth.  We are able to bring down the fevers with tylenol and motrin (over a 2 hour period).  Once the fevers are gone, he has no symptoms of an infection and no more fevers.  The foam around his mouth can only be explained as seizures.  I talked to his neurologist about this a couple weeks ago and she thinks he has autoimmune issues.  We have always noticed that he over heats easily if he's over dressed or outside too long in the summers.  And if he gets sick, his fevers sky rocket fast and stubbornly.  But never in his life have we experienced spontaneous fevers and seizures.  This happened again this morning around 3:30 a.m.  I heard him making odd noises, so ran downstairs to check on him.  His face was covered in a sticky foam and even his shirt and arm were covered.  I cleaned him up, checked his temp (105) and gave him tylenol immediately.  I laid beside him for an hour and rechecked his temp (still 104.8) so gave him Motrin.  It finally came down.  While I was running errands early this afternoon, my husband witnessed another seizure-like episode (eyes rolled back and mild shaking).  I called the on-call palliative care doctor to discuss these terrifying spells.  The doctor called his neurologist and discussed the issues.  The neurologist called me back and said to up his phenobarbital and use Clonopin if we see more episodes.  That's it.  We are left to fear and wonder what is causing these changes and have been instructed to take him to his primary care doctor this week if fevers or seizures persist.

Last week, I also took him to the eye doctor for an exam.  I was very nervous about this appointment because Carter pokes his eyes constantly and I have been so worried about what kind of damage he may be doing to them.  The eye doctor noticed right away that Carter's pupils do no respond to light.  We have always noticed that and wondered why.  We have always said he is our little owl.  The doctor said it could either be from his muscle relaxers or issues with his nervous system.  She said she sees it in adults and children quite often.  The good news was that she didn't see any damage to his eyes from the poking.  The bad news was that she worries that the progressive aggression to his eyes could be from a neurological issues that could cause him to be blind.  The anatomy of his eye is fine and functional, but it is very common in people who are inflicted with Mitochondrial Disease to lose their hearing or vision due to the brain not processing what it sees or hears.  She referred Carter to a specialist who can do more extensive testing to determine how well his brain is processing what he sees.  Now we wait.  His appointment at the specialist on February 21st.  Once we know whether he can see or not, we will order tinted glasses to protect his corneas from the UV light and hope that this will help him explore and look up more (when light isn't so bright to him from the dilation).

Just when his development is at it's best and he seems to be on the upswing after a rough fall with pain and aggression...we face new challenges.  We face more unknown and more fears.  I am left to re-evaluated and make new plans.  This past month, Carter's motivation has waned and he doesn't seem as eager to cruise and play.  Seizures are always a huge risk for him and my heart is telling me that this is the issue.  My Monday will be spent making more calls to his specialists to ask what we do now.  I'm not a wait and see kind of momma...I want testing and answers.  I want my son to be safe.

This journey as a mom to a little boy whose life changes from moment to moment, I don't think my mind ever really relaxes.  Fortunately, he has stayed out of the hospital since early November and I am hoping we can keep it that way.  But if these fevers and seizures don't stop, I worry he will end up in the hospital soon for testing and observation.  

On a positive note, I created a team this past week called "Energy for Carter" to raise money that is being donated to Special Olympics of Michigan.  Our team has raised 75% of our goal of $400.  Yesterday morning, my twin sister and I took the plunge and jumped into a frozen lake in Carter's honor!  We dressed up in 80's gear and represented our little warrior!  We were even interviewed by channel 6 news before we plunged.  A lot of people have asked how it only response is "COLD!"  But it was worth it for the amazing cause.  

1 comment:

  1. Unexplained fevers are no fun! We have seen some with our daughter, though not nearly as high. When she was having seizures, any fever could trigger them. Sometimes it was because of teething. Other times it was the convenient "something viral" - about which you can do nothing but keep the fever down.

    So sorry you are battling the seizures. Surprised that your doctors are using phenobarbital for seizures in mito. It can interfere with mito function.