cranial sacral doctor

During a recent post I mentioned being open to trying new things. I feel like this is an important part of how I live my life, but it is especially important to me in regards to Cecilia. With a cerebral palsy diagnosis you are told that the damage to the brain is done. It won't get any worse, you just address the symptoms, but the brain will not heal.

I think if you look at this through the eyes of a conventional doctor that is true. From my perspective I think the brain is capable of more than we understand. Why can't her little brain re-wire itself?

Cecilia's right hand has improved so dramatically since her diagnosis. She used to use her left hand almost all the time. Now she uses both hands and even uses the pincer grip with her right hand, which is the thumb and forefinger to pick up small objects. It has taken her right hand a little extra time to catch up, but it did.

My point in explaining all of this is that we recently visited, what some people might call, an alternative doctor.

She is a cranial sacral doctor which is will leave up to Wikipedia to explain to you. http://en.wikipedia.org/wiki/Craniosacral_therapy

She has had fifteen years of experience helping children with developmental delays. She has had a patient that was expected to never crawl or have much physical function at all and can now walk.

Yes, admittedly unusual, but everything she said to us really resonated with me. As always our trusty note-taker, my Dad, was with us. The following are some of his notes.

Discussed the MRI and how the CP diagnosis was made.

Observed that her fascia was tight

myofascial - a three-dimensional web of connective tissue that runs through the body from head to toe.

Analysis - Cecilia is collapsed on her right side. Her bio-mechanical system is not balanced. For example, she walks on the outside of her right foot and her stride does not roll through her foot as it should. When she is curling her toes, she is trying to keep her balance. There are 36 joints in a foot and a normal walk/gait has a bio-mechanical flow and chain of events. For example, her walk is affecting the normal articulation and movement of her knee, thigh, and hip. Her spiral is inhibited, which, (I think) means that things are not flowing from one harmonious movement. Any brain injury she may suffered will have zero effect on her life because her brain will repair any damage and wire around it. Once the bio-mechanical aspects are restored by her doing the actual movements, her myofascial will loosen up and the brain will figure out how to take over the new function.

Therapy Resistance training is one of the keys for her. The goal of therapy is to balance the muscles. Some pilates will be good because of the tension on the body in both parts of the exercise. Let her go without shoes. Climbing is good because of the bi-lateral movement. Things to do: tricycle - swimming - catching a ball - alternate hands when she does things - rolling her whole body on the floor. Walking in loose sand is great because it makes all the foot and leg muscles work. Every day, move her hips and legs in a circle; bring her feet up to her chest; this releases the fascia. Place her on her belly and lift her legs. Stimulate her right hand as often as possible. Avoid any CP label. Be proactive. Trust your intuition. Come back in a year when Cecilia will lay still for a few minutes.

Just having more suggestions of what we can do at home with Cecilia makes me feel really good. I will look forward to Cecilia being a little older so that we can lay her in one spot and have some voodoo magic worked on her.

Accepted! and waiting

We arrived home from a vacation to a letter that said Cecilia was accepted. So excited we have made another step. Oh, but wait. We have to wait over two months to get in for her evaluation. Why does everything in the medical field take to long? Fortunately for you blog readers the appointment is coming up at the end of July.

Shriners Application

It turned out that we had to apply to Shriners. I think at least a month passed before we even were contacted. Needless to say we probably called to check on the process half a dozen times. Just call us back and we will leave you alone.

So, we filled out the application and waited.

New Pediatrician

So, we finally changed pediatricians at the beginning of the year. Yes, I am behind in posts, but we have a new addition to the family and she is now four months old.

I really like the new doctor. He actually had an opinion on eating organic food and what sunscreen ingredients that we should avoid. These are important things to me, but I have never had our conventional doctor have an opinion.

The appointment was pretty straight forward. He thought Cecilia was doing great, but understood we felt like we could be doing more. After talking through a few options he said he would like to send us to Shriners. I don't know anything about their program, but I am open to try anything.

Changing Pediatricians

I was a guest blogger for a wonderful blog, http://abcdoula.com/blog/?p=648, during the fall. I wanted to share my experience of changing pediatricians. If you ever need any help with a new baby this is the place to come. The owner, Kimberly, is AMAZING.

Hmmmm...

I waited almost two weeks to hear back about physical therapy. I finally called and when the therapist did get in touch with me she was surprised to find out that I didn't know we don't need to see her again. Apparently we don't have to have any appointments for a year. I don't feel like this was made clear by the doctor, but ok.

This is good news, but I don't know if I can wait that long. I want to be pro-active and a year is forever in the life of a toddler. The therapist said that she won't be doing out-patient therapy anymore. She suggested that we could have a new physical therapy evaluation in six months. I will definitely be doing that. I am thinking we will look in to physical therapy and occupational around Cecilia's 2nd birthday. Knowing more can only help her.

Double appointment

I was really looking forward to having the physiatrist and physical therapist compare opinions at this appointment.

Unfortunately, when we arrived, we found out that the therapist was out with a family emergency. The doctor came in with two medical students. I am happy to have them there to learn, but it was a little overwhelming for Cecilia to have Brian, my Dad and me in a very small room with three strangers . Most of the time she sat in my lap, snuggled up and shy. Cecilia never sits still like this. Because of the way Cecilia reacted the doctor really didn't see her physical capabilities. The end result is still positive so he must have seen enough in his opinion.

We discussed the therapists opinion of not needing a leg brace and the doctor agreed. Yay!

He examined her right leg and said we need to watch her leg length. It might be a little different as she grows. He did try taking the left foam lift our of her shoe and it did have a negative impact on her walking. At this point it seems like her leg length is good.

Overall the doctor is a very observant, but quiet person. He spent most of this appointment watching and making small comments. I would love more feedback from him, but it seems like we are doing well so at this point we'll stick with him. We don't have to go back to see him for a year! He said if we notice her tightening up we should come and check in with him.

Physical Therapy Update

Our second physical therapy session seemed like it came so quickly. Cecilia has been doing great walking in her new shoes. We definitely feel like she is making improvements with very little intervention.

After the therapist watched her for a few minutes she said C will definitely not need a brace. Her shoes are great and doing what they need to be doing. The therapist took off her shoes and looked at her feet and leg. They were not stiff. She said they both feel like an average leg.

The therapist did talk in depth about Cecilia's leg snapping. The best way to describe this is that her right leg looks a little rigid or hyperextended when she walks. It is more pronounced when she is tired which I think she was towards the end of this appointment. The therapist cut two little foam lifts to put under her heals in her shoes. These should help with the snapping. Also, strengthening her legs will help.

At some point during this appointment the therapist had Cecilia walking up and down stairs. While she was walking down the stairs she was alternating left and right. The therapist said that was great because the average age for that is 3-4. It's so easy to get excited about something so minor when it is your child.

The therapist said that when Cecilia gets to the place where more high level functioning with fine motor skills is required, like playing an instrument, it may take her a little longer to learn. That is good to know, but not discouraging to us at all.

It also seemed like at some point Cecilia might benefit from more frequent physical therapy. At this stage with her age and how well she is doing it isn't worth the benefits we would see.

Even though I heard the words "no brace ever" I am not letting myself be totally convinced of that. Our next physical therapy appointment will be in another month. I am really looking forward to it because we will be meeting with the physiatrist concurrently. When I have both the doctor and the therapist in a room together and they agree there will be no brace I will let myself believe it.

Shoes

So, shoes. Like many women I love a beautiful pair of shoes, but I also like a good deal. Knowing that Cecilia's shoes are, at least for now, acting as a substitute for a brace, I am taking my shoe mission very seriously. The insurance co-pay for a brace could easily be a few hundred dollars so these new shoes have no budget. Whatever we can do to help her walking improve we will do.

We went to a great local shoe store and they were incredibly helpful. Cecilia tried on a few pair of shoes and it was very clear to us that the Ecco's made an immediate difference in her walking. Sold. They were on sale and they were still $50. Yeesh.

Since this first shoe purchase I have kept looking for deals on the recommended brands of shoes. I have gotten lucky and Cecilia now has three pair of fancy shoes that currently fit her and a few more pair for her to grow in to. Nothing like getting shoes for half off to make you feel like you've won some shopping contest. SIlly, but true.

Physical Therapy

Going into our first physical therapy appointment filled me with mixed emotions. I was really looking forward to hearing what the therapist thought of Cecilia's walking and give us information to allow us to help her, but I had anxiety about Cecilia wearing a brace. I had a prescription for the brace in my pile of papers for two months. It was a constant reminder of Cecilia's diagnosis. You can't help but think that people are going to judge my child because something is different about her. I just kept thinking that no one is perfect. Everyone has issues and we just happen to know what Cecilia's are. She will be a stronger and more interesting person because of this.

The therapist came in to the waiting room to get us for our appointment. You could tell the therapist was evaluating her walking from the moment she met her. We walked down two long hallways and went in to a little room with gym mats, toys and a little table. I handed her the prescription for the brace. Almost immediately the therapist said that Cecilia may not need a brace because her foot dynamics looked good. I definitely had tears in my eyes at this point.

The physiatrist had seen Cecilia walking about two months ago. At that time, she had only been walking about six weeks. We had definitely seen a lot of progress in her walking, but to hear the therapist say she looked good felt great.

Overall, the therapist said that Cecilia's right side was looking good, but slightly less coordinated. She is good at squatting and keeping her balance. She also has good reflexes and can catch and protect herself with both arms when she stumbles. The therapist said again that a brace wouldn't be good right now. It would just slow her down.

The therapist recommended that we massage and stretch Cecilia's right leg. She also recommended that we have her wear her shoes at least half of the day and encourage her to climb and run around in weight bearing activities.

One of the important pieces of information that we learned at this appointment is how important shoes are for early walkers and especially for Cecilia. The therapist recommended getting a shoe that would be flexible and have a rounded heal that rocks forward when she walks. A shoe with a higher support around the ankle will give her ankle more feedback and help her stability. She mentioned looking at the brands Nike, Ecco and See Kai Run.

When we left this appointment I felt a sense of relief. I don't want to get my hopes up that there is no brace ever, but at least for now Cecilia is improving on her own. We will see the physical therapist again in one month and she will reevaluate her walking and the need for a brace.

Shoes are my next mission.

Occupational Therapy

With the initial diagnosis of cerebral palsy we knew we had occupational therapy in our future. I have heard this term, but it seems like no one really knew exactly what it was. My thought was that it was therapy for her occupation of being a toddler. . . feeding herself and playing. While this isn't the definition, it is pretty accurate. Occupational therapy focuses on fine motor skills for arms and hands. It can overlap physical therapy a little bit and definitely in regards to abdominal core strength.

We went to Cecilia's appointment with an extra adult. I really recommend this if you have someone that can come with you. This allowed us, as parents, to listen, take in as much as we could and ask questions. The third person was my Dad. He took notes the during the appointment. Looking back over the notes is incredibly helpful. We are lucky because my Dad is the best and most thorough person I can think of for this job.

We learned a lot with this appointment. We thought we would be taking Cecilia to OT once a week, but the best part of this appointment is that we don't have to go again for a year! The therapist did say that if we had any concerns about her development we could return in six months.

Here are some of the extensive notes that my Dad took along with some of my thoughts. I will keep my Dad's notes in bold

-observed C walking around and playing - she kept her right arm flexed

The therapist mentioned this was probably to help her balance. Working on her core strength could help this.

- asked C to color; C did not color much

We haven't done much coloring at home because the crayons end up in her mouth very quickly.

- tested her with a puzzle

She was not very interest in this either.

- She was good at stacking small blocks and had them 4 - 5 high

- clapping - left hand moved to the right hand

We have always noticed that she has clapped this way.

- small plastic bottle with lid

- C held the bottle with her right hand and used her left hand to pick up the beans and place them in the bottle.

- therapist placed C on a long, rectangular swing to check her balance - good trunk control

- therapist placed C on a large exercise ball which is good for trunk control

Suggestions

- encourage C to use her right hand

- present items to her on the right side

- 3x/day: try to have her use her right hand for 5 minutes

- bubbles are good exercise for her right hand

- encourage supination with right hand

This is the position when the palm faces up.

- Therapist completed Peabody Developmental Motor Scales

This gives a qualitative and quantitative point of reference for gross and fine motor development from birth to age five.

- C - grasping ability - 20 months

visual motor skills - 16 months

C is currently 18 months old. In my Dad's opinion he thought she could have tested better with her eye hand coordination. She was a little distracted. I, of course, agree with him.

-cerebral palsy is not affecting/impacting her fine motor skills

-her trunk muscles are good: continue to work on them.

The therapist is going to send a report to us, but I feel like my Dad covered everything.

All good news for us!

PT canceled

We woke up this morning and, as we were eating breakfast I heard the home phone ring. I ran to get it, but I missed the call. I knew what it was. No one calls our home phone. The physical therapy was canceled. Ugh! I am frustrated, but the physical therapist had to cancel because her mother is in the hospital. We re-scheduled for three weeks from now. Grrrr. At least we have occupational therapy next week to look forward to.

Waiting

We have been waiting for over a month to get in to see the physical therapist and the occupational therapist. Both of the first appointments are two hours. I can't imagine what we will do that whole time, but I am sure it will be amazing. The PT is tomorrow. I know Cecilia will get fitted for her AFO (Ankle Foot Orthoses) at this appointment. I am really curious about how this will help her.

One of the symptoms that Dr. Steve asked us about and pointed out at our first appointment was if Cecilia kept her right hand in a fist a lot. We really hadn't noticed it. She definitely was left dominant, but we weren't sure. This is something that I pay attention to all the time now. The first week or so I was surprised how much I noticed her hand in a fist, but it wasn't all the time. As the weeks have passed I have noticed her starting to do more with her right hand. I am hoping that the occupational therapist will give us lots of feedback about how great her right hand is. It's so incredible how you can be looking at the big picture that is your child's life, but when they have any challenge, sickness(even the sniffles) or something not quite right you pay attention to every little detail. We get a little excited every time she uses her right hand. The fact that she can pick up a small piece of ice with her right hand and put it in her mouth is very reassuring to me.

The initial diagnosis was definitely hard to hear, but I never had any doubts about the diagnosis. We have cried and felt fortunate and happy and everything in between. It really could be so much worse and we can handle this. This is what Cecilia has to deal with, and our role is to make sure she has all the right people to help her.

The MRI will most likely confirm the cerebral palsy. There is a 20% chance that we won't be able to see the damage, but it won't mean that this isn't Cecilia's diagnosis.

I think right now I am more worried about the general anesthetic that she has to have in order to be still for MRI. Maybe that is just somewhere to put my worry for now.

MRI

The MRI went very smoothly. The nurse and anesthesiologist took Cecilia back. We weren't part of any of the gas or IV. When we were able to go back, she was just waking up. Her little face was all red from the tape that had been on her face. She was a little groggy at first, but as soon as they gave her a juice box she was back to herself. Within about 15 minutes she was cleared to be discharged. No vomiting or nausea the rest of the day.

Results

Dr. Steve called the next day. I wasn't expecting to hear from him so soon. I don't feel like I was prepared. I wanted to have some questions to ask him. He said that you could see the damage and it was what he was expecting. Simple and to the point. I definitely have more questions, but we will see him again in a few months. I will have a better understanding of Cecilia's symptoms through the physical therapy and occupational therapy. Watch out Dr. Steve. I am going to have a million questions for you by then.

Diagnosis

I am guessing, like anyone starting a blog, you don't know where to begin. I'm just going to dive right in. We have an incredible 17-month- old little girl named Cecilia.

Pretty early on I noticed that Cecilia favored her left hand. I research everything, so I read a few articles. I found out that babies can show a preference as early as 6 or 9 months, but they should be relatively ambidextrous until the age of 2 or 3. As she got older she hit all her developmental milestones towards the end of the age range, but always made it. She was happy and healthy and no one suspected anything was wrong.

Once Cecilia started crawling she did what we called her pirate crawl. She held her right leg stiff to the side. After crawling for a month or so she did crawl in a more traditional way. At her 12-month-appointment she was just starting to walk holding our hands. Just before her 15-month-appointment she took her first steps. Woohoo! First steps are so exciting.

As she started walking more she kept her right leg stiff, which we made sure to point out to her pediatrician. After some discussion during her appointment we were going to be sent to physical therapy and a dietician. Oh, I didn't mention she is a peanut too. She fell off the growth chart a few months ago, but we are not big people and she eats well so, whatever.

When the hospital called to schedule the appointments they said she would be seeing a physiatrist. I had never heard of this kind of doctor before. Here is a definition if you are interested. http://www.aapmr.org/condtreat/what.htm

It took us a month to get in to see Dr. Steve, the physiatrist. We saw him on the afternoon of September 9th. Dr. Steve examined Cecilia for a few minutes. He said to us "did your pediatrician talk to you about why she sent you." Uh, no. "There is a very broad spectrum, but Cecilia has very mild cerebral palsy."

My reaction probably seemed unemotional. I need information. She will need to have an MRI, wear a brace on her right foot, physical therapy, occupational therapy. It is a lot to take in when you go in to a doctor's office thinking that something might be off, but you can't imagine getting a diagnosis that sounds so scary.

We feel so lucky that the only apparent damage is a mild mobility issue. It won't get worse. We know what we are facing now and we can deal with it.

So, next step MRI.