Rewind back to his 1st MRI at 5.5 months old. We were told his MRI was perfect and that there was no damage to his brain from the birth trauma. Despite all of his challenges (listed below)
Poor/slow growth
Poor feeding/vomiting
Reflux and Constipation
High muscle tone in his legs/feet
Slow to reach milestones
Weak facial tone
Speech & Developmental therapy
Intensive feeding therapy
Seizures
All of that happens with a 'perfectly normal baby,' so they said. The specialists in Texas and New Mexico said they couldn't find anything to link it all together, and we will just treat the symptoms and everything was normal.
Normal healthy babies do not require so many specialists, therapies, weight checks, medications, blood samples, tests and procedures.
Dr. R has been such a huge help with all of this, she has gone through hundreds of his files, images, eegs, and blood work to find out why. To help us get an answer and put the pieces together. She looked over his previous MRI and noticed several white spots, and abnormal activity on his EEG from last year, despite us being told it was a completely normal EEG. The white spots in his mri from last week are still present, but they are smaller! <-- Yey! And the abnormal beta waves are still present, coming from the same location as before. The abnormal beta waves are more prominent in his sleep deprived EEG than his 24 hour regular sleep cycle EEG.
The white spots are pieces of scar tissue around his ventricles (normal fluid filled lakes in the brain) from his occipital lobe area due to lack of blood flow/oxygen from birth. There is a name for it, but Dr R wants to leave it off of his file for now and just track his progress and see what the few months bring. We have another appt at the end of March for Neuro. :)
And for another reassurance, his white spots cannot get worse. On a scale of 1-10, 3 being mild, and 10 being a vegetable (for lack of better terminology) Pacen's damage is a 1.
Pacen's next appt will be his overnight sleep study on 6 January. Here's to hoping he stays healthy for our holiday travels!!
Hey Jen! You do such a wonderful job keeping up on all the boys, I enjoy reading about them. Right now, I'm going through further digestive troubles than just gluten intolerance and have been introduced to GAPS. Have you heard of this when Pacen was having difficult food aversions? Not sure if he is still having difficulty with GI still but I've read so many success stories coming from GAPS and could only hope it might be of help to you guys if you were still having trouble!
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