I wanted to give you a quick update on Connor as we are now over 3 months since his decompression surgery.
The past month has been really, really difficult. Connor has been experiencing extreme fatigue, daily headaches and pretty severe irritability. It’s been really challenging to be around him and I am doing my best to figure out what is causing the symptoms. Usually the only thing his teachers have to tell me is that Connor is really tired at school and sometimes has a hard time focusing but about 3 weeks ago his teacher started contacting me about some issues she has been having with Connor in the classroom- inattention, not following directions, being disrespectful. My little guy is just not feeling well & it is now causing problems in the classroom.
So I started by taking him to his pediatrician. She feels the symptoms are likely related to one of his genetic mutations. She agrees with me, though, that the symptoms are concerning and need to be looked into further so she sent us to Dr. Bernes, a neurologist at PCH. She was kind enough to make a phone call to him herself and update him on Connor and ask that he sees Connor as soon as possible.
A week later we saw Dr. Bernes. He also is concerned with what is going on and commented on how Connor looked so different from the last time he saw him (July 2015). He agreed he looked super tired & “subdued”. That is exactly how I would explain Connor’s mood lately…either calm, tired & depressed looking or pissed off screaming nasty words at me. It’s absolutely heartbreaking. Dr. Bernes was especially concerned with how tired Connor is right when he wakes up. He is sending us to another neurologist at PCH who deals with sleep issues. We will likely have to repeat the sleep study.
We saw an allergist earlier this week to discuss the bumps on Connor’s arm and the possible link to food allergies/sensitivities. I have always questioned these bumps but after a friend was sharing about her son and his food allergies & skin reactions I knew I had to look into this further. The allergist did a scratch test looking at the 8 most common food allergies and 17 environmental allergies. Connor tested positive for soy and possibly wheat as well as many trees, grass & insects. So, we are trying an elimination diet with him, taking out all soy & wheat/gluten from his diet. Many parents of special needs children have reported improved behavior when taking out gluten and other allergens from the diet so I am praying this will help Connor feel better. He also wants us to give him allergy medication twice daily & follow up in four weeks.
Yesterday we saw the PA for Connor’s neurosurgeon. After updating her on how the past month has been, I knew what she was going to suggest. As much as I hate to do this, I know we need to to get a clear idea of what’s going on with Connor. So, in a couple weeks Connor will be having another MRI (his 4th 🙁 ) under anesthesia. Obviously we have to wait to see what the scans show to come up with a plan but I know there is a possibility for another surgery and that makes me really, really sad.
Of course I’ll update when we know more but that’s it for now.
