Battles against terminal illness, anxiety, and life!

Go Time

We have less than one week until we fly out.  We are first landing in Dulles, so that we may head over to Justin’s aunt and uncle’s house, where we will also meet up with Justin’s parents, Mel and friends, and then some of our local buddies.  Then, we will drive up to Baltimore.  Monday we are going to the aquarium with Jaime and her daughter, and we are really excited about that!  Tuesday is our big doctor day, and Wednesday another doctor visit.  Then, we fly out on Thursday for home.  Whirlwind.

Many people have asked us about symptoms.  What symptoms specifically Braden has.  This was taken from the A-T Children’s project.  You can find it here. If Braden experiences it, I will put a bold “Yes” next to it.  I will also do my best to put the age he started it in the next column.

While not all patients with A-T experience all of the possible symptoms, most patients experience at least a handful of the following:

Symptom Percentage of A-T Patients that Responded to the Survey
(total 114 patients) Experiencing Symptoms
Average Age of Onset
Ataxic Gait   Yes 96 2    1.5
Telangiectasia 94 5
Slurred Speech*  Yes 91 1-1.5
Vision Problems  Yes 80 Unsure
Drooling  Yes 79 2
Fatigue  Yes 78 7   2
Slow to Process and Respond when Speaking  Sometimes 68 6
Tremors  Yes, but they are slight right now. 61 2.5
Lower than Average Weight 58 4
Skin Conditions 42 8
Frequent Infections 39 5
Graying of Hair  Yes 37 11  3
Numerous Birth Marks  Yes 36 Birth
Aspiration while Swallowing   Yes 34 14  Birth
Sensitivity to Loud Noises  Not positive 32 3
Depression 28 17
Warts  Yes 25 11  2
Pain  Sometimes 25 11  2
Allergies  Yes 25 2
Nausea 25 9
Gagging while Swallowing  Yes 24 11  Birth
Sensitive to Medication 19 14
Dizziness 18 11
Loud Breathing when Not Sick Yes 17 15  2.5
Unexplained Crying  Yes 15 2
Joints that Pop Frequently 13 14
Rapid Emotional Changes  Yes, but could be age related. 13 9     2.5
Trouble Controlling Bladder Yes, but could be age related. 13 6     2
Sensitivity to Strong Smells  Yes 11 5      3
Sweaty Palms 11 12

So, there you have it.  I will allow you to draw your own conclusions.  We will have internet access on our trip, and I will do my best to keep you updated.  This blog will most likely end up being my dumping ground.  I am going to take notes on my laptop while there.  So, we will see what happens when we get there.


Comments on: "Go Time" (3)

  1. I’m so excited to finally meet you, even if it’s for such a trying trip. Me and the fam are happy to make meals, do laundry, or provide a needed distraction if warranted 🙂

  2. Our docs at Hopkins send us a ridiculously long narrative of each visit – takes abour 2 weeks until it gets home. Its nice so that I am sure I caught everything in my own notes AND its an official document of the appts for the medical files shouls anyone ever need that. Ask for it – its your file – you have a right to it!!!!

  3. Wow Becky. This sure paints a picture of how you must be feeling.

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