Addleyʻs Update

Addley is a year old now.  She is the sweetest little thing, loves attention, hugging, playing, laughing and following around her siblings.  Of the three children, she is the dare devil...the one with little to no fear to try anything she might see her brother or sister doing.  She was the earliest to walk independently at 10 months and since then there has been no stopping her.  With that independence and fearlessness comes plenty of opportunity for bumps and bruises.  Since she was about 6 months old we discovered that when she gets hurt she holds her breath when she cries.  At first we didnʻt know what was happening, but in retrospect I can see all the signs now.  There are different types of breath holding spells and I am by no means an expert in any of them, but it appears that Addleyʻs are the most rare type (and the most severe).  She experiences a combination of cyanotic and pallid spells that (unfortunately) trigger seizures.  Scott and I refer to them as "episodes" because at this point we have not been given a medical diagnosis or term to apply to them.  She experiences about 2 per month and all have resulted in varying degrees of seizures. (meaning how long they last or how long it takes for her to recover fully)  We finally got a neurological evaluation and the dr. agrees that they are breath holding spells of a severe form due to the seizures that they trigger.  They are not the common ones that people hear about in children who hold their breath during temper tantrums.  These are entirely reflexive and she has no control over them.  They do not happen every time she is hurt nor can we predict when a hurt happens if she will have a full blown episode.  Consequently, we have been scheduled for an EEG (to rule out a seizure disorder, which the dr seems confident it is not) and an EKG to determine if there are any abnormal rhythms in her heart that might be triggering the seizures during these injuries.  I have not blogged about this intentionally...mostly because I havenʻt had any answers to give to all the questions from friends and family, but also because Iʻve been in denial and hoping they would just go away.  From what Iʻve been told and read, children grow out of these episodes as late as the age of 6! Her tests are scheduled for Wednesday August 4th.  We both apologize if we have forgotten to give anyone updates regarding Addleyʻs episodes - at this point we have no answers.  Unfortunately, the test results will not be reviewed with us until our next appointment with the neurologist on September 8th.  I will try and keep you all updated as information is available.