The Natalie & Alice Fish Story

We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.

Wednesday, October 3, 2012

Neurology Visit--More Answers

This morning neurology and ENT came by.  The ENT doctor felt Natalie's sinus status wasn't the source of her problems.  However, we think we found some new puzzle pieces through neurology.  I do not feel adequate explaining it at this time for reasons # 1. It is not entirely confirmed.  # 2. I can't remember some of the terminology to report accurately.  

I will make a summary of what I can.

Since Natalie's swine flu incident in Nov. 2009, she has had reoccurring episodes of a "funny feeling" in her head causing her to curl up in a ball, requesting we rub her back and head.  This would happen anywhere between several times in a day… to once a month; sometimes nothing for two or three months.  We asked many doctors about this.  Nothing was determined by doctors.  We felt it was related to her brain injury from swine flu.  The damage done in her brain was mostly in the area of her right Occipital Lobe (a less threatening area).  

We thought the episodes could have been related to her eye sight.  She was seen by ophthalmology two years ago; all was well.  After consulting with other specialists, we concluded that it could easily be post traumatic stress syndrome, or something similar to anxiety.  We seemed to notice the episodes more when she anticipated a needle draw or anything related with the hospital.

She managed them well and they would improve.  However, we are told today that those "funny feeling" episodes have been seizures; subtle and hard to pin point.  This recent batch of seizures indicates that she is becoming more vulnerable.  

The MRI (from neurology perspective) of yesterday showed new traces of scar tissue in another area of the brain; the right Mesial Temporal Lobe.  This area, if altered can contribute to unexplained seizures...or can also be known as Epilepsy.  

They aren't diagnosing her with Epilepsy because they are not sure she fits the mold entirely.  However, because of this new scar tissue she is more susceptible to seizures especially when illness is present.

The neurologist wants to keep Natalie on Keppra for three months and repeat another MRI in order to determine the change.  

The dizziness she was experiencing is gone.  We learned that she was given Dilantin in the ER to stop the seizing.  This drug stays in the system for a few days and causes dizziness and confusion.  Problem solved.
The last few days have been interesting as it has provided more depth to Natalie's condition, in which we were mistaken.  We are thankful her body manifested itself now rather than later in a more threatening way; in order to find proper treatment.  Had we not discovered this (her episodes continue untreated), it could have become a much bigger problem.  

With proper management she should not know any differently.

Natalie is feeling homesick and wants to come home.  When I left today she broke down.  Tyler played a lot of games with her which helped cheer her up.  We are wondering when she might come home.  It could be tomorrow, it could be in a week.  

Because they know she was septic and haven't been able to source the bacteria, they may be more conservative in discharging her.

So much has happened over the past week…our heads are spinning.    

As for everyone else, things are looking good.  Thanks again for your love and support.


I have a few pictures to's too late so I will add them later.


  1. I'm glad you were given some answers today and pray the seizures are managed well and your brave girl can head home very soon.

  2. It's got to help to have some answers and understanding. I'm glad that Natalie is getting such good care - and I hope she can go home soon, for her sake and yours.

  3. At least answers are coming! Your sweet little Natalie has been through so much!! God has big plans for her :) We love and keep praying for ALL of you. STAY STRONG!