|Addie chewing on my bracelet, waiting for her appt at Dell Children's|
We've been watching Addie for tone issues and tightness since birth and didn't really notice any. Until a few months ago. Addie's always shown some weakness in her left side but had pretty even tone in all her limbs. At her OT eval on March 15th, her OT noticed that one of Addie's legs seemed shorter than the other. Something our PT had not noticed. So when I mentioned it to her PT, she checked Addie's legs out very well, pulling and bending and laying her on her belly to check each segment of her leg against the other one to see if she could identify which part was shorter than then other. It seems they are all equal. So Addison has what's called apparent leg length discrepancy. Meaning it's most a tone issue - aka tightness - that is drawing one leg up higher than the other. In the process of her thorough once over, Addie's PT also noticed that she has uneven thigh folds. Basically a crease in her chubby thigh on her left leg that she doesn't have on her right leg. The uneven leg fold combined with the leg length discrepancy concerned the PT enough for her to suggest asking Addie's pedi for a hip x-ray to check for hip dysplasia. Basically, to see if one of her hips was pulling of out the socket to the point of even dislocation.
So when we were at Dr. N for Grayson's 9 yr well check, I mentioned it to Dr. N and she wanted an x-ray done and then said we should be referred to a spasticity clinic -- for kids with CP. I had felt like Addie had CP once we started seeing the one sided weakness and especially after we saw the tightness in her left foot and her left hand fisting more. I was prepared for this and even slightly relieved that I wasn't the only one thinking this way. I took Grayson home and brought Addie right back up to the radiology department that afternoon to get the x-ray done.
I heard from the nurse the very next day that the radiologist impression was that her hips were normal (PTL!) so now that hip dysplasia was ruled out, we were moving on with the spasticity clinic referral. This was back at the beginning of April. Well, two weeks passed and I hadn't heard from the clinic so I called to follow up and was able to talk to the nurse I needed - after calling about 5 different places - and got her in on April 25th. Thankfully Melissa was able to take a half day off so Jack could still go to speech and so she could meet Grayson off the bus. Also, thankfully because this meant I was able to take Addie to the appointment by myself and not have to drag Jack along with us. I could actually concentrate on what the doctor's were saying. YAY!
We arrived about 5 minutes early, when we were suggested to be 15 mins early but hey - early is early in my book. Especially when schlepping a 24 lb 11 month old and all her stuff with you! I had organized her medical binder the day before, labeling all her MRI discs by date in case they needed to view them and had her ECI PT and OT goals with me to show them those as well.
We were called back, given a hospital bracelet for Addie, weighed in and vitals taken and then shown to a room.
The first person that came in was a physical therapist. She was VERY impressed with Addie and said she was doing great with her physical milestones. She felt like Addie was on track for her age and was doing too well for any intervention but it would be up to the doctor to decide. The doctor is a rehab specialist, a physiatrist. Basically a PT with an MD. So it was nice to get a second opinion from both a PT and a PT MD if that makes sense.
The doctor made it into the room about an hour after our original appointment, not because they were running late but you just have to go through stages. The whole point of a spasticity clinic is to see everyone you need in one place since CP is a multi faceted medical profession diagnosis.
The doctor, another Dr. N, really took her time with Addie. She played with her, and had her track and reach for toys. She really worked on getting Addie to reach with her left hand, even if it meant I had to hold her right hand down to get her to do it. She checked her reflexes, tone, spine, shoulders and hips.
And she looked at me and said "Who in the world referred you to us?"
I laughed and said well it's kind of a long story and explained the whole process as to how we ended up with an appointment there.
The doctor said it tongue in cheek, but basically what she was saying was that thankfully, PRAISINGLY, Addie is doing so well she does not need the services of the spasticity clinic at this time.
She said that, yes Addie does have CP. Any motor planning issue that is the result of neurological issues is cerebral palsy. Something I knew already and had mom diagnosed months ago. Addie has a type of cp called hemiplegia. Meaning she has weakness and tightness in her muscles in only one side of her body. Her left side. This could be because her right ventricles are still much larger than her left. It could be from the brain bleeds that were found at 10 days old. It could be from the collapsed cortex when she overdrained. It could be from brain damage caused from pressure from all the fluid before she was born. We don't know and most likely never will.
But it doesn't matter what caused it.
We are doing everything we can to help her.
Dr. N explained that there are steps the go through with a kid like Addie (or any kid with CP for that matter). 1. Is this child in therapy? Yes she is. 2. Is this child being massaged and stretched to keep the tendons in her legs long... to keep the muscles growing so the bone will continue to grow? Yes 3. Is this child standing in proper form? This was the one that got us going in the route of AFOs and CP talk with our pedi in the first place. But Dr. N feels Addie has a great stance. It helps that Addison has learned to bend her right knee now to accommodate her shorter left leg. For a while she was picking her left leg up instead of weight bearing on it, and we were concerned she was stopping to weight bear on her weaker side. But that's no longer the case. So no AFOs (braces) for Addison at this point in time. They want to see how she progresses on her own since she is doing so well without them as of now. The leg length discrepancy is so slight they don't want to correct it as of now anyway, hoping that the muscles in her left hip will relax and it will go away on it's own. 4. Does the child need botox injections for contractures and spasticity? No - thankfully. Dr. N said she's no where near that point and that her hemiplegia is very mild. Thank you Lord! The list went on but once you reached a few no's the next steps were more invasive, for more severely affected kiddos.
We were basically kicked out and told to come to see Dr. N at her rehab clinic next time instead of the spasticity clinic. The ortho doc came in while we were talking to Dr. N to fit her for AFOs, the next step for 90% (or more) of the new patients at the clinic and Dr. N turned him away. Said Addie was too much of a rock star to need him. It seemed to please the ortho doc. I can imagine, in a clinic like that, it's a pleasure to not be needed.
We left with instructions to come back in six months, keep doing what we are doing, and contact them if we see things 'progress' rapidly. I says 'progress' because CP is not a progressive disease, the brain damage is done and doesn't get worse. But the way it manifests and the way the muscle tone changes as they are used more can appear to worsen.
I'm extremely pleased and thankful for the news we were given. I knew the diagnosis of CP was coming.... I actually felt better knowing it was confirmed by a doc and I didn't have to keep saying "It's not official yet....". CP is a broad spectrum of diagnosis just like hydrocephalus. And we are so very blessed that so far, Addie is falling on the mild side of the CP spectrum.
Blessings ~ Aimee