Brennen’s Medical Journey: Appointment Update August 5, 2011

As I previously mentioned, this week was jam-packed with appointments for Brennen.

We started the week by getting him fitted for shoe inserts that are meant to discourage toe walking. The inserts are made of metal and are designed to make the soles of his shoes less bendable. I think Brennen saw the inserts as a challenge. Similar to when I tell him to stop jumping on the couch. The more I tell him to stop jumping, the more he jumps. In this case, Brennen realized the shoes made toe walking more difficult, which made him even more determined to do it. And like every determined  three year old, he figured out a way to get what he wanted.

A few days after the appointment with the Orthotist, we paid a visit to Brennen’s physical therapist to evaluate how the inserts were working and discuss other options. Immediately, the therapist recognized that he was toe walking despite the shoe inserts and asked if we had made a decision in regards to casting or bracing his legs. I was prepared for this conversation as the hubby and I spent a lot of time researching and talking about our decision. I explained to her that we were not on board with either option. We would understand the need for it if he exclusively walked on his tippy toes. However, Brennen can and does walk flat-footed at times. In addition, his range of motion in his legs and ankles has not been limited due to his toe walking. I told her we would prefer to keep any eye on him and if anything changed for the worse, look into those options at that time. And guess what? She agreed! She said she would release Brennen from PT as long as we agreed to do the exercises and stretches that she taught us and get back in touch with her if anything changed. Yay!

Later in the day after the PT appointment, we had a follow-up appointment with Brennen’s neurologist. I had prepared myself for this appointment by putting together a small folder that included our family medical history in regards to toe walking and scoliosis,  notes about anything out of the ordinary in regards to Brennen from conception till now and a list of questions. The folder helps me feel more in control of a situation that I have very little control over.

The neurologist first reviewed the results of Brennen’s x-ray. He confirmed that it indicated 13 degree scoliosis but also agreed with us that it was possible that Brennen was not standing appropriately for the x-ray. (Picture squirming & uncooperative 3 year old in front of a x-ray machine.) Moving forward, Brennen will get an x-ray every 6 months to monitor the scoliosis. As of now, no treatment is required. The MRI was reviewed again and the doctor reiterated that a mild version of CP can not be ruled out. In regards to toe walking, the neurologist agreed that the shoe inserts were not beneficial and wholeheartedly recommended braces. Also known as ankle foot orthoses or an AFO. So much for my victory dance earlier in the day. 😦 His argument was that Brennen’s foot could become deformed due to amount of pressure being placed on his toes and the tendons in his legs may not grow as long as they should due to the amount of time Brennen is on his toes. Although, this was not what we wanted to hear, we recognized that it was better to do the bracing sooner than later as the average time in an AFO is 3-12 months. We decided to try bracing now so that Brennen would be out of them before he started pre-school next year. So next week Brennen will be seeing a new Orthotist (his doc didn’t like the previous one the pt person sent us to) to get fitted for an AFO. I also inquired about the possibility of Brennen having some sort of sensory disorder. Here is a little background as to why I suspected a sensory disorder. It took Brennen until he was about 2 years of age before he would walk on grass, he still will not walk on sand, he has very sensitive hearing and is easily overwhelmed in crowded places. After some discussion, the doctor agreed with me and recognized that part of his toe walking may be due to sensory issues. However, insurance companies do not recognize sensory disorders as a medical issue, so any professional treatment would be out-of-pocket. In all reality, we have been treating Brennen’s sensory disorder on our own. We gradually expose him to things that make him uncomfortable until he becomes desensitized to it. We will continue to do this and we will research some ideas on the internet as well.

Although this week did not turn out exactly as we would have liked, we recognize that these things are do-able. The good news is that once the AFO is on, we will greatly reduce the number of appointments we need to go to. 🙂 We will only have to do a x-ray every 6 months and visit the neurologists’ office every 3 months to see how the AFO is working. I am looking forward to a time in the future when all of this is just a vague memory, but in the meantime we are going to make the best of it and recognize that despite our challenges we are still very lucky to have so much happiness!

Brennen’s Medical Journey: MRI, X-Ray & Physical Therapy July 28, 2011

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!

Brennen’s Medical Journey: The Neurologist

As you already know from Brennen’s Medical Journey: Toe Walking, Brennen’s 3-year check-up resulted in a referral to a pediatric neurologist to further investigate his toe walking. After waiting 2 months for the appointment, the day finally arrived at the beginning of April. I approached the appointment with a lot of apprehension as I did not know what to expect. When we signed in at the front desk, I was handed a stack of papers to fill out. Some of them were the standard medical questionnaires that you get whenever you go to a new doctor, but others asked in-depth questions about my pregnancy, Brennen’s birth, Brennen’s milestones and our family medical history. I panicked a little trying to fill out the medical history. Many of the diseases I checked “no family history” because I was not aware of anyone having the diseases but at the same time I didn’t know for sure. I was also having difficulties filling out Brennen’s milestones. I couldn’t remember them all. The only ones that stood out in my mind were the ones he didn’t achieve “on time.” For example, he never crawled, instead he scooted on his butt. He was also a late walker, at around 16 months. But I did the best I could and I chided myself for feeling like a bad mom because I couldn’t remember them all.

He was scooting on his butt in this picture. It was the cutest thing!

We waited for over an hour before we were finally called back. At that point, Brennen had already reached the end of his patience and I had run out of things to entertain him with. Initially, I spoke with the neurologists’ assistant. He pretty much just reviewed the paperwork and asked pertinent follow-up questions. He also examined Brennen. He mostly concentrated on Brennen’s legs, in regards to reflexes and range of motion. After the exam THE neurologist came in and I sat in the room while he conferred with his assistant about our conversation and Brennen’s exam. It was a weird fly-on-the-wall kind of feeling. The neurologist performed his own exam and then had Brennen walk in the hallway so they could see his toe walking firsthand. He ended our visit by summarizing his findings and putting forth his recommendations. He said upon examining Brennen, he felt Brennen’s reflexes were too reactive and that his muscles seemed tight. (I attribute the “tightness” to Brennen not wanting the doctor to touch him.) He also mentioned that many neurological disorders also involve speech delays, which he knew Brennen was in the process of being evaluated for. He said he was hesitant to rule Brennen’s toe walking as idiopathic, which basically means without a known cause, because as far as I knew, there was no family history of toe walking. Therefore, not wanting to let Brennen’s case “slip under the radar,” he recommended that Brennen get a back x-ray to rule out scoliosis, a brain MRI to rule out cerebral palsy and attend physical therapy.

Again, I felt stunned! I remember talking and nodding, but I wasn’t really there. I remember going through the motions of collecting the necessary paperwork for the tests and gathering our things to go home. I just could not believe that all of this grew out of Brennen being a toe walker. It’s not like he exclusively toe walks, he can walk flat-footed. My mind was also stuck on the MRI and the thought of taking Brennen to the hospital to be “put to sleep.” I just couldn’t fathom doing it. I remember calling the hubby on our way home, talking to him as tears streamed down my face. The hubby’s first response was anger. Anger at why this was happening and why the doctors were making such a big deal of it. We both yearned for this chapter in our life to be behind us.

Brennen’s Medical Journey: Speech Therapy July 27, 2011

After the crying subsided from the shocking news of Brennen’s 3-year check-up, I went into responsible mommy mode. I called the neurologist and secured the first available appointment, which was two months from the date of my call. I also made Brennen an appointment to get his hearing tested as that was a pre-requisite to making an appointment with a speech therapist. As a side note, finding someone to do a hearing test on a 3-year old was quite a task. His pediatrician’s office wouldn’t do it because they said kids under the age of five are too difficult to do hearing tests on. We ended up securing an appointment through the Macomb County Intermediate School District (MISD), at no cost to us.

Brennen’s hearing checked out perfectly! In fact, the audiologist tested him at a lower level then she normally would and he responded to everything! This was no surprise to the hubby or myself as Brennen is very sensitive to noise. In fact we actually have a pair of Peltor Kid’s Earmuffs that we use daily while running the vacuum, the blender etc. We even took them on vacation.

Once Brennen completed his hearing test we were able to make an appointment at our local elementary school to get his speech evaluated. Luckily, in Michigan, speech therapy is offered through the public school system and therefore speech evaluations and therapy is offered for free to kids! As you may recall, Brennen’s pediatrician thought that Brennen talked with a lisp. Interestingly, the speech therapist did not agree. However, the therapist felt that his speech was delayed and thus evaluated him with the Goldman Fristoe Test of Articulation. The test was basically a set of flash cards with a different picture on each one. The therapist would show Brennen a card and then he had to tell her what was on it. The results of the test indicated that Brennen was one year behind in his speech. The therapist noted that he had a tendency to use jargon while he talked and also deleted the final consonants in some word. The speech therapist recommended that Brennen join a group therapy session at the school that met one time per week. At this point there was only four weeks left in the school year, so Brennen would only attend four sessions.

As far as Brennen was concerned, his speech therapy class was “school.” So he was very excited to go each day and even insisted upon wearing his backpack even though there was no need for it. By the end of the four weeks the teacher told me that Brennen may not even need to return in the Fall because his speech seemed to be more clear. As much as I would like to credit the teacher for his “improvement”, I feel that he just became more comfortable in the strange environment and thus sounded clearer.

Brennen’s Medical Journey: Toe Walking July 26, 2011

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.)