Two Disabilities; Two Reactions; One Child

      One of these pictures elicits kindness and compassion from people in my community and on the internet. The other photo seems to bring out the worst in those same people. The irony is it is the same child, just two different disabilities.

       

      My two-year-old just doesn’t seem to be able to catch a break. At just over a year old, he was diagnosed with a peanut allergy. Just like that everyday places like the park became threatening. Shortly after his diagnosis I posted a question on my town’s Facebook page “Does our town have a peanut free school”? We live in a school of choice state, so it was possible that at least one of the three elementary schools in our town was completely nut free. Despite being a yes or no question, my post accumulated nearly 300 comments from community members. Many were entirely negative. I was told I should home school my son because of his allergy. I was also told “How dare you claim his food allergy is a disability” after explaining that my son has a right to “free and appropriate education” under the “American’s with Disability Act” (For the record, food allergies are considered a disability under ADA).  On a different Facebook post, some internet stranger implied I should allow my child to die by telling me “you should just allow natural selection to do its job” so his child could bring a peanut butter sandwich to school.  He clearly doesn’t understand what natural selection means. Another parent recently posted a video explaining the Teal Pumpkin Project to our town’s Facebook page. While many people were supportive of the initiative, some people took offense to it. Proclaiming “the world isn’t fair” and “these kids just need to suck it up and deal with [not being able to trick or treat] it”. One woman took offense to using the holiday to create awareness stating “this isn’t what Holidays are about”.  I also posted a reminder at the beginning of summer asking people if they chose to bring peanut products to the park, could they please eat them at the picnic tables and not near the equipment. I was told I should not bring my child to the park. The amount of cruelty I see on a daily basis regarding food allergies is astounding. The fact that someone would wish my child dead just so theirs could bring a peanut butter sandwich to school is appalling.

Shortly after turning 2, my son was diagnosed with a Chiari I Malformation. A part of his brain called the cerebral tonsils is being pushed out of his skull causing a variety of symptoms. He will most likely need to have a decompression surgery within the next 1-2 years.  Around the same time my son was fitted for his first set of ankle-foot orthotics, AFOs. The cause of his spasticity, toe walking, and gait issues is unknown at this time. What we do know is that the braces have helped him tremendously. Like any 2-year-old, my son loves the park. The park closest to us is the community center park. He is also obsessed with swings. The community center park only has big kid swings and baby swings. Once he got his braces, it became extremely difficult to get him into and out of the baby swings. I once again posted a question to my town’s Facebook page asking if anyone knew of any grants for special needs playground equipment. I explained my son recently got leg braces and it was a challenge to use the swings. People in my community were extremely helpful with getting me in contact with someone at the rec center. Other people said they would help with a Kickstarter campaign if needed because the park “should be accessible for all children”.  The kindness was overwhelming and greatly appreciated. Yet the irony of it all had me laughing. Just months prior I was told by members of the same community I should keep my child home from the park due to his peanut allergy disability. Now this community is telling me that the park should be accessible for all.  I don’t believe anyone made the connection that it was the same child they had vilified in the past.

      As a society, we have come a long way with regards to how we treat individuals with disabilities, especially children. It is apparent however, that the kindness and compassion only extends to children with disabilities that can be seen.  The Universe has presented my child with two uniquely challenging disabilities. One of which brings out the best in our community. The other the worst. When I look at him though, I don’t see a child with disabilities. I see a child. My child. One who deserves to be treated with kindness in all aspects of his life. It is my hope that one day my community will see it too.

Matthew, 2 years old 2016

Holding Pattern

     On Friday we saw the pediatric neurosurgeon. Matt was having a good day, so many of his typical symptoms were not on display. It was great he was having a good day, but made it harder to explain what we see at home in terms of symptoms.

     The doctor briefly looked at his scans and confirmed the Chiari diagnosis. She also noted that he did not have a syrinx at this time. One can develop at any time though.  He had some blockage of cerebral spinal fluid on a few images, but it wasn’t a complete blockage.

     She also wasn’t concerned about the mild curvature of his thoracic spine, saying it might have been caused by movement. Which to me doesn’t make sense, as he was sedated under general anesthesia and strapped to the table.  This is something that I want to watch carefully. I am also considering getting a second read on the thoracic films.  This would be a deciding factor on how soon he would need to have the decompression surgery. I want to make sure that by waiting, we are not causing more problems for him down the road.

He also does not have a tethered cord. Which is awesome, but at the same time we are back to square one with his gait and spasticity. Of course, since he was having a good day, she didn’t see much of that behavior. She dismissed a lot what we were saying regarding his legs and gait, which irritated me.  Matt has been seeing a physical therapist weekly for almost a year. We did not enter into braces lightly, and both his physical therapist and myself were surprised when, after evaluating him, the orthotist recommended the full calf AFOs instead of braces that stop right above the ankle.  Since he began wearing the braces last month, he doesn’t fall.  Before braces he was falling 2-3 dozen times a day on accident (and many more on purpose). Aside from the occasional misstep or tripping over an object, he doesn’t fall. He is also better able to navigate stairs, however he is starting to realize that stairs are really hard for him regardless, so he asks to be carried up and down them more. He can land a two footed jump easily with the braces. Without the braces, he is able to do it ½ the time.  We have seen significant progress when he isn’t in the braces since starting to wear them last month. When asked what would be causing these issues, she said it could still be cerebral palsy, or something without a cause. I asked if his scans showed any anoxic brain injury and she said no. In mild cases of cerebral palsy however, it may not be seen on images.

      The good news is; Matt does not need to have immediate brain surgery. He will need to have it at some point during his childhood. The question becomes when. The doctor was on the fence about whether to operate at this point. We return in two months to reassess. If done earlier, she believes she will not have to open up the dura surrounding his brain and insert a patch (called a duraplasty). This is the riskiest part of the surgery because it opens him up to bleeding in the brain and meningitis. She would only have to remove an under piece of his skull and a part of his c1 vertebrae to relieve the pressure (called a posterior fossa craniotomy and c1 laminectomy).  The downside to doing it this way is that she may still have to go back in a few years later to perform the duraplasty.

     I was very glad Jay was able to go with me to the appointment. He and I have two different opinions on when the surgery should be performed.  He is very much, let’s wait and see what happens. I on the other hand, want to get it over with and hopefully never have to worry about it again. I needed the balance between our two points of view to be able to step back and take a breath. I am fully on board with taking the two months to process everything before returning to the neurosurgeon. As long as no other major symptoms arise (major headaches, issues with his eyes, loss of sensation, sleep apnea etc) I think waiting until he is closer to 3 or even 4 to perform the surgery is wise. I don’t want him to remember it, but I want him to be old enough to be able to explain what is happening in the moment. As a mother, when I see a problem with one of my kids, I want to fix it as soon as possible. But the surgery isn’t a cure. It won’t put his brain back in his skull where it belongs. It will only relieve the pressure and in turn hopefully relieve the symptoms; but even that isn’t a guarantee. While patients don’t typically get worse after surgery, they may not have any relief of their symptoms and may need one or more additional surgeries. It is so incredibly hard to know what the right thing to do is.

     Between now and his next appointment, I am going to try really hard not to excessively worry. I am going to try to avoid any more doctors’ appointments and try and fill our days with fun activities instead. Fall is in full swing and because Matt wasn’t walking last year and he was just diagnosed with the peanut allergy, we didn’t visit many pumpkin patches. My goal is to visit all of the ones in our area between now and Halloween. As a mother, I will no doubt worry. But these next two months I am going to take some guidance from the Serenity Prayer...

"God, grant me the serenity to accept the things I cannot change, 

Courage to change the things I can,

and the wisdom to know the difference."

...and change the things I can control and stop worrying so much about the things I cannot.

He Can't Catch a Break

Matthew had his full spine MRI last Tuesday. His cervical spine shows a 9 mm herniation of the cerebral tonsils. His last MRI it was 7mm. It also showed that a part of his skull called the clivus is shorter than normal. From what I can gather, the part of his skull that is supposed to contain the cerebral tonsils is too small, which causing the brain to be pushed down and out of his skull.

          His thoracic spine images show a mild right curvature. Which means my 2 year old has scoliosis. It is extremely rare for a 2 year old to have scoliosis. My understanding is that this is directly caused by the Chiari malformation.  The only way to stop the progression of the curving of the spine is to decompress the Chiari malformation: i.e brain surgery.

          His lumbar spine MRI showed the lower part of his spinal cord, called the conus, at the L2 vertebrae. It depends on what part of the L2 vertebrae the neurosurgeon considers “normal” to know whether this is clinically significant. However, Matthew’s leg issues cannot be explained with the Chiari alone. Given all his symptoms and the sacral dimple, he may have what is called an occult tethered cord, which means hidden, not seen on MRI.

          Thankfully we will be seeing the neurosurgeon on Friday morning. From everything I have read in the past few weeks, I am fairly certain she will recommend the decompression of the Chiari given all of his symptoms and the scoliosis. With what urgency he will need it I don’t know. As for the tethered cord issue, of this I am much less sure. It seems to fit, but then again, so did cerebral palsy. My biggest concern with regards to the tethered cord, is if he does have one that is hidden, it is still causing irreversible damage that will only get worse if left untreated.

          The neurosurgeon comes highly recommended from a variety of sources, including parents of former patients and from the hospital nursing staff. After his MRI on Tuesday, the nurses could not stop raving about his neurosurgeon. I am also very happy with the fact that if and when we have to hand our 2 year old over to the neurosurgeon, she will be the only one operating. We won’t have to worry about a young resident practicing for the first time on our son’s brain; the hospital he will be at is not a teaching hospital.

          I am terrified for my son. He doesn’t seem to be able to catch break. September seems to be particularly bad for him. Last September he was diagnosed with a peanut allergy (to which he also added lentil and black beans). This September is the Chiari malformation. I worry about his immediate future and his prognosis before, during, and after brain surgery. But I also worry about his long term emotional health. The peanut allergy alone sets him up for a childhood full of bullying and exclusion. Adding the limitations the Chiari puts on him (with or without surgery) I am scared for when my 8 year old little boy comes to me in tears asking why he is different. Asking why he can’t do what the other kids can. I wish I could take it all away. But knowing that I can’t, makes me fight even harder. He is the strongest kid I know. He doesn’t take crap from anyone. I just hope that personality trait stays with him throughout his life.

Out of Left Field

Two weeks ago Matthew had a MRI of his head to rule out (or in) mild cerebral palsy as the cause of his gross motor delay as well as several other issues. Nobody was expecting what the images showed. It turns out Matthew has what is called a Chiari I malformation. Essentially his cerebellum extends below the base of his skull. Many people have this and are completely asymptomatic. Others however, have severe issues related to this condition. Unfortunately it looks like Matthew falls into the latter category.  His excessive drool, low tone in his mouth and face, and choking on thin liquids are all signs that his Chiari malformation is causing issues.  His gross motor delay and spasticity in his legs may be caused by a related condition called Syringomyelia (fluid filled cysts along the spine) and/or a tethered spinal cord. He will be having a complete spinal MRI in the coming weeks to check for those related conditions.

After spending some time researching this condition and finding a Facebook group (because there are Facebook groups for everything) I found a pediatric neurosurgeon in our area who specializes in this condition. Thankfully his pediatrician is able to write us a referral to this doctor, as she has worked with her before.  I have already emailed the neurosurgeon asking what additional images she would like to have completed prior to his initial appointment. She was extremely quick to respond so now it is a matter of getting the MRI scheduled.

So what does this mean for Matthew? It may be as simple as watch and wait while limiting certain activities. It may be as complex as brain and spinal surgery to prevent further neurologic damage. The truth is, at this point we just don’t know. Someone asked if he was in pain. Honestly, I don’t know. He could very well be living with chronic pain, but because it is normal for him, he doesn’t complain.

Before his MRI, my biggest fear was it would show an inoperable, malignant brain tumor. This was my second biggest fear. Something that may not kill him, but will make his life even more challenging. There is no cure for this. Surgery will only prevent further damage. It may not even alleviate current symptoms. And no amount of Google searching could find a connection between food allergies and a Chiari Malformation. Trust me. I tried.

I don’t know much yet. We need to wait until the MRI of his spine is completed and we meet with the pediatric neurosurgeon. I do know that my son is the strongest, most stubborn child I have ever met. He has already fought through several challenges in his short life, and he will fight through this one. I just wish he didn’t have to. 

Long Term Consequences (Of Lives started too soon)

“They’re doing just fine.” It is something I have heard numerous times in the past 4 years and something I really wish people would stop saying. The fact is, while it may appear my children are doing just fine, they are not. I stated a long time ago that we wouldn’t know the full effect of prematurity until the boys get older. In my heart I knew I wouldn’t be able to breathe easy until both boys were in elementary school. We are slowly starting to see signs that both Jayden and Matthew did not escape their rocky starts to life unscathed. Each seem to have some lasting, possibly long term consequences of their lives being started too soon.

Jayden puked for the first 18 months of his life. He received both feeding and speech therapy through early intervention and “graduated” at about 19 months. From 19 months to 3.25 years I fought to get him qualified once again for speech services. Finally last November the speech therapist through Kaiser told me “yes, he is moderately delayed and does qualify for services”   and I cried. Not because I was upset he was delayed, but because someone finally heard my concerns and my son would finally get the help he needs. Currently he is receiving speech therapy every other week until a spot opens up for weekly sessions. In the spring I brought him back to early intervention to see if he would also qualify for speech through them. They looked at our history of evaluations and services and one woman proclaimed “wow, you have been asking for help for years”. I wanted to scream. I told her “I have been banging at your door for 2 years begging you to help my child. Only to be told ‘he is delayed, but 20%, not 25%. So we can’t help you’”. Given the evaluations from his current speech therapist as well as the results from their own assessments, he was finally qualified and will start receiving speech during preschool this fall. He has so many speech sound errors that when combined his intelligibility to an unknown listening is low.

In addition to the articulation disorder, Jayden’s preschool brought to our attention some sensory issues they are noticing with him. Specifically chewing/putting everything in his mouth, constantly touching things/people, He is always taking his shoes and socks off, HATES his hair/head being touched (although we are making progress with hair washing), and has difficulty sitting still even for a few minutes. I have long noticed some of the behaviors they mentioned and brought them up at his last EI intervention in March 2015. They said he did show signs of sensory issues, but again, not enough to qualify. Now that he is over the age of 3, his sensory issues must have an impact on his ability to access the learning environment, which according to Child Find, they do not. So while his IEP will have sensory accommodations, he will not receive occupational therapy.   And while I believe there are some sensory issues at hand, part of me has a hard time sorting those behaviors from “typical” 4 year old boy behaviors. Where does the 4 year old boy end and the sensory issues take over?

Matthew has a whole other set of issues that are both a result of his prematurity and also mostly likely an unfortunate mash up of my husband and I’s genetic material. His food (peanuts, lentils, and black beans) and environmental allergies are sadly a result of his DNA of which he would most likely have even if he had been born on time.

With regards to his prematurity, Matthew has some gross motor delays is pointing to a mild cerebral palsy diagnosis. As the months zoomed by and he still wasn’t making much progress on the walking front, I called and scheduled an early intervention evaluation for him. His pediatrician wasn’t concerned but that mom voice inside of me was starting to get louder. I have been concerned about stiffness in his legs since he was about 6 months old but have consistently been dismissed. He was found to be significantly delayed in his gross motor skills by Child Find and we were assigned a physical therapist who meets at our house once a week. Within 10 minutes of our first session she was able to confirm my suspicions about the tightness in his legs, specifically his left. She also commented on how his gait is off when he does walk. I had mentioned that his left leg seemed to swing spastically around when he was pushing something (the only time he would walk at the time). When she asked about his birth history and his APGAR scores (1 at one minute 6 at 5 minutes) she asked if I knew that those were poor numbers. I looked at her and said “of course I do. Why do you think I am concerned about his movement?” She also asked if I knew anything about cerebral palsy.   After a few months his physical therapist grew concerned about his oral motor skills and excessive drooling. She suggested we have an occupational and speech therapist evaluate him while he is still under the part C umbrella. The occupational therapist recommended once a month sessions while the speech therapist will be coming once a week. Because we have added services instead of removing them, I contacted his pediatrician and asked whether we should pursue a formal cerebral palsy diagnosis. My concern is that after he turns 3, without a diagnosis, it may be much harder for him to continue to receive services under part B.  She was in agreement and we are now waiting for an appointment with a pediatric neurologist.

There are times when I find myself wondering what life would have been like had the boys been born on time. Would they have the struggles they have? Would I have to know terms like “age inappropriate sound errors” and “spastic gait”? At times if feels like the weight of our world is too heavy to carry alone. Yet it becomes infinitely heavier when family and friends make comments like “they’re doing just fine” or “it could be worse”.  It makes parents like me feel even more isolated and alone.  Of course I know it could be worse. Jayden was born at 31.5 weeks gestation. We are extremely lucky that speech and sensory issues are all we are dealing with. Matthew, while only being 5.5 weeks early, was born “floppy, lifeless, and blue”. If we are in fact dealing with cerebral palsy, it is a mild form that doesn’t seem to affect cognitive or fine motor skills. I am acutely aware it could be a whole lot worse.  Our reality however, is that they are not “doing just fine”. I have fought to get them the services they need and they have fought so very hard to get where they are today. They still have a ways to go though. So the next time a parent of premature infant opens up to you with their concerns, do not dismiss them with comments like “they’re doing just fine” or “it could be worse”. Listen to them. Ask questions like “what specifically makes you think there is an issue?” and “how can I help you ?” and realize just because the child is out of the hospital and appears to be doing well, looks can be deceiving. Understand it may take years to see the long term consequences of their lives being started too soon.