I scheduled Brennen’s MRI for the first available morning appointment, as the procedure required him to fast. You can read more about the actual MRI appointment here.We got the MRI results about one week after the appointment and we were told by the neurologist that the MRI showed no signs of brain damage. Yay! However, the doctor also said that the MRI could not rule out cerebral palsy (CP). Did I confuse you here? Because this is the point where the doctor lost me. How could the MRI that was ordered to rule out CP, not rule it out? Well, it turns out that although a MRI can show structural damage to the brain it can not show if the brain is functioning normally. And it seems that CP is one of those disorders that doctor’s still do not know a lot about. To be honest, I was fuming mad at the doctor about this. I felt this was vital information that should have been given to us BEFORE our son went through the MRI so we could have decided whether or not we still wanted him to have one.
The original plan for the back x-ray was to have it done immediately following the MRI. However, Brennen was too groggy from the sedation to stand without support and the back x-ray required him to bear his own weight. Because of this, I took Brennen to get the x-ray about a week after the MRI. The x-ray was way less traumatizing than the MRI, so that part was a relief. However, getting the results of the x-ray was EXTREMELY difficult and frustrating. Click here to see why I have developed some ill feeling towards the neurologist and his staff.
As far as the physical therapy (PT) goes, the doctor had prescribed PT 2-3 days per week for 4-6 weeks. Brennen’s physical therapist felt that amount of time was overkill and instead penciled us in for 2 days a week for 2 weeks, with the understanding that she would re-evaluate Brennen’s needs before she released him. Brennen greatly enjoyed PT. For him it was like having a one on one gymnastics class. She had him stretch his legs and play games that encouraged him to walk flat-footed. By the end of the two weeks Brennen lost interest in her games and became uncooperative, something that she expected from a three-year old. During the first week of PT, the therapist felt Brennen’s toe walking was idiopathic, but towards the end of the second week she felt he was toe walking because he was compensating for some sort of weakness (coincidentally we had received the x-ray results during the second week, so I am not sure if that swayed her opinion). However, she did end up releasing Brennen from PT at the end of the second week, partly because he wasn’t showing any improvement and partly because he was uncooperative. However, she referred us to a orthotist to get Brennen fitted for a metal shoe insert that makes it difficult to toe walk. If the insert does not work, she has asked us to consider having his feet serial casted or his legs braced. Serial casting is just like when someone has a broken bone, but in Brennen’s case his feet would be casted so he can not toe walk. The casts would be on for two weeks, but they have no guarantee of working. She said that some kids have their casts removed and then go right back to toe walking. If the casting doesn’t work or if we want to avoid that step altogether, we can get Brennen fitted for leg braces that would prohibit him from toe walking. The braces would be on for up to one year. At this time, the hubby and I feel that both casting and bracing are pretty extreme options and we do not feel like we are ready to make that decision.
Next week Brennen has three appointments. First he will be seeing the orthotist to get fitted for his insole. A few days later he will be seeing the physical therapist, to evaluate how well the insole is working and lastly we have a follow-up appointment with the neurologist. Stay tuned and send us some good vibes, please!
Since I started my blog, I have mentioned several medical appointments / tests that Brennen has gone through this year. (Click here, here and here if you missed them.) Until now, I have been hesitant to share Brennen’s entire medical journey as it is very personal and emotional. Just writing this entry made me cry. Recently, while scouring the web for some answers I came across Tina at Scoliosis Family Adventures. Not only are her posts very open about her family’s medical journey, but she also reached out to me after I commented on her blog. Her email to me was filled with support and referrals (her family lives in Michigan as well). My interaction with her made me realize that by sharing Brennen’s medical journey, I may be able to offer encouragement and strength to another family.
Brennen’s medical journey began in February at his 3-year check-up. Overall, his pediatrician said he was very healthy. His asthma flare ups had decreased over the past 12 months and he had gained some weight. He was in the 10th percentile for height and the 25th percentile for weight. He has always been on the small side, thanks to having small parents. We talked about his potty training progress and she encouraged me to schedule his first dental visit. She also felt that Brennen was talking with a lisp and recommended that he see a speech therapist. Just as we were wrapping up the appointment, Brennen started to get restless and began walking around the room. Not just walking, but toe walking. This prompted a barrage of questions from his pediatrician.
Pediatrician: “How long has he been doing this?”
Me: “Since he started walking.” (He was a late walker at 16 months.)
Pediatrician: “What percentage of time would you say that he does it each day?”
Me: “At least 50% of the time.”
I honestly didn’t understand what the big deal was. It seemed harmless to me. However, his pediatrician went on to explain that if toe walking is not outgrown by the age of two, it could be a symptom of a neurological disorder and gave me a referral for Brennen to see a neurologist. I left the pediatrician’s office stunned, overwhelmed and scared. (To be continued.)
Recently, while venting to my friend Jackie via Facebook messaging, I ended my rant with, “Sorry to vent . . .but I feel better now.” To which she wisely replied, “PLEASE don’t apologize. You are welcome to vent to me anytime! We (moms) all have to support each other.”
And you know what? She’s right! Why do we (women) always feel the need to apologize after we express our frustrations to others? Let’s be honest, we have earned the right to vent! So in honor of that right, I am starting a weekly Saturday Sound Off, where I will post my top frustration of the week and you can share yours too! All posts are apology free, of course!
My primary frustration for the week (and last week) is that we still have not received Brennen’s back x-ray results (it was ordered to rule out scoliosis). In the past two and a half weeks since he got the x-ray, I have left three messages and we still have not received a return call. I can’t even get a live person to answer the phone at his neurologists’ office. Instead, my phone call goes straight to a recording that says they are either with a patient or assisting the doctor. And to top it all off, the most recent recording said that the doctor will be on vacation from 6/27-7/11!!!
I am really starting to develop a hatred for this doctor (hate might be too strong of a word, but I am definitely developing animosity) for the doctor and his practice. Would he like to wait over two and a half weeks (which will probably turn into over one month) for his son’s test results? And how much trust can I place on the doctor’s recommendations for my son if he can’t even contact us within a reasonable amount of time with the test results?!?!
Ahhhhh . . . That felt good . . .
Alright ladies (and gentlemen), it is now your turn to sound off! I’m listening.
I spent a lot of time yesterday, racking my brain for something to blog about. I came up with a few ideas but none of them inspired me to actually write. I seem to be suffering from MRI writers block.
My son got a MRI this past Saturday to rule out cerebral palsy as the cause of his toe walking. Now all I can think about is, when will we get the results and what will the results be?
I am crossing my fingers that we will get a phone call soon saying that his MRI was normal, so I can go back to being normal.
One thing that never ceases to amaze me about being a mom is my ability to go into “medical-mommy mode” when necessary. By that I mean, if Brennen is at the doctor’s and he has to be restrained so he can get a shot or a procedure done, I am the one that holds him down.
I dread going into medical-mommy mode, but it is a necessary evil. And unfortunately in Brennen’s 3 years, I have had countless experiences of going into medical mommy mode. From his newborn screen, to breathing treatments, to vaccinations, sweat tests and countless other procedures that I do not care to relive.
Today was another medical-mommy day.
Brennen was scheduled for an MRI this morning to rule out cerebral palsy as the reason for his toe walking. I have been dreading this appointment since I made it. The MRI itself didn’t worry me, it was the sedation I was concerned about.
While we were in the waiting room, I could hear a little girl crying and crying and crying. Which just increased my anxiety. Eventually it was Brennen’s turn. He did great until IV time. Then he clung to me and cried. I tried to stay strong for him. I held him while they put the IV in and tried to console him as best I could. But I have to admit that despite being in medical-mommy mode, my eyes did tear up when he wasn’t looking.
Once he fell asleep the hubby and I kissed him as he was rolled away to the MRI. We waited for a very long half hour.
When we saw him in recovery he was a little groggy. As he started to come to, he said, “I want mommy.” At that point I finally was able to breath and I was able to let go of medical-mommy mode. Well … at least until his next appointment.