This is the first post in a new series on Special Needs Parenting. I'm honored and thrilled to be asked to join this phenomenal series. At the same time, I feel nervous and exposed. Two out of my three children have life-altering, chronic medical issues. While it's something I'll talk about openly if I'm in a safe space, it's kind of like Fight Club everywhere else. The first rule of Fight Club is that you don't talk about Fight Club. I hope this is enlightening but if it turns out to be raw and ugly, I suppose that's what I need right now.
Moving on...
We're in the "maybe you're special needs, maybe you aren't" camp. I think my kids are special, and they have a lot of medical needs. Our mostly invisible needs put us at risk for all the unsightly things people with special needs face. There are a lot of emotional needs between my kids, our marriage faces the dreaded 90% divorce rate, and our monthly insurance EOB packets are novel sized. But by the grace of God, statistics are just numbers... much like the lovely "out of pocket max". At the end of the day, the most painful parts are the random messages that either oversimplify or demonize treatment options, or worse, peg you as an ungrateful brat for failing to recognize that so many people have it worse.
I warned you this would be a little raw. Bear with me. I've had so many amazing people in my life, but sometimes it's the ridiculous statements I fixate on.
Let's move on to the meat and potatoes...
Juvenile Arthritis with Uveitis
This story is a little complicated, so I'm going to skip some details and fast-forward the story a bit.
When my firstborn was 27 months of age, she woke with a swollen knee. We had heard her bang it the night before, but we brushed it off since she didn't seem to be in pain. Besides, I had issues with knee swelling my whole life, and it was never considered to be a big deal. This wasn't her first instance, so I chalked it up to genetics. By that evening, she was spiking fevers near 104. It wasn't that the fever was high - it was that she would be 99 and 10 minutes later be 104. The extreme shift left her shaking violently. We rushed her to the ER. Dr. Google said it looked like a knee infection, and those are serious.
Within 45 minutes of walking in the door, we had x-rays which showed nothing. An OR was scheduled to address a knee infection, but in the meantime, the Orthopedic surgeon on call wanted an MRI to make sure. It was a fantastic call because as they prepped her for surgery, he called it off. Instead, they admitted her to the hospital, and he gave an initial prediction of Juvenile Idiopathic Arthritis. The next step was to get her fever and heart-rate under control. It was a long, long night of alarms and such, but she eventually stabilized, and we were sent home. I couldn't wait to finally see a rheumatologist and prove him wrong.
Long story short... I was wrong and he was right. It was unusual because a diagnosis of JIA usually takes around 6 months. It went fast because as it turns out, my daughter also had a complication called uveitis, which is inflammation in the uvea of the eye. As with many JIA children, it is asymptomatic, meaning it can only be detected by a special test given by an ophthalmologist. Her eye situation was dire. She was a 4+ in both eyes, which is the worst grade you can get. 1/5 children with this condition go blind, even with the best treatment possible.
We've been on this path for 5+ years now. While she has permanent damage in her knee from the prolonged swelling, her joints have done well, for the most part. We went through cortisone injections in her knee and jaw. We never identified issues with her hands, but she stopped using her fine motor skills for a few years. Thankfully, she uses her body well these days. Unfortunately, we still battle the eye issues. We made it one year with quiet eyes, but a flare has returned recently.
One of the most difficult aspects of JIA is the treatment options. Our first line of defense was a chemotherapy drug called Methotrexate. I'm extremely natural minded, so I was hesitant at first, but her eyes were in a crisis state. We bounced between the pill form and the subcutaneous injection. Yes, we had to give weekly injections of a chemo drug to our child at home. I know it was awful, not because I remember it being so, but because I blocked it so strongly. She would cry because it made her feel so sick. I would cry at the thought of torturing her. Several hours each week were spent ramping up to a 2 minute process.
We eventually added a biological drug called Remicade, which has been magic for us. We were able to abandon the dreaded Methotrexate for good. For years, my daughter was vacant, taking little interest in life. Once we adjusted to this medication, she became vibrant, and her eyes finally cleared! We're in a spell where it isn't working as well for the moment, but we're hopeful that a weight-adjusted dose will even things out again. She must take this as an infusion in the hospital. Since it's every 4 weeks, we make a fun day out of it.
Did you know that Juvenile Arthritis affects around 300,000 children in the US? In fact, it affects more children than juvenile diabetes, cystic fibrosis, and muscular dystrophy combined. You can learn more about the symptoms here.
Hemophilia
My third child is a boy. He is the type of child that was smiling hours after birth. When he was four months old, there was an incident where I went to put him in the Ergo carrier, and he screamed. It took me another day to realize he was in extreme pain in his left knee. As it began to swell, I immediately made an appointment with our doctor. After an ultrasound, we were sent to an orthopedic specialist. In fact, it was the same specialist who first saw my daughter in the ER. He once again suspected JIA and sent us to rheumatology. Rheumatology felt he was too young for JIA but noted how horrible his skin rashes had become (more on that path below). After being passed around for x-rays, ultrasounds, and tube after tube of blood work, no one had an answer on his knee. By this time, months had passed. He tried to crawl a few times, but for the most part, he skipped straight to standing.
My daughter was in physical therapy to help with her knee damage from JIA. Since he was still having issues limping, our PT offered to see him. However, she told me she had a strange suspicion but didn't want to worry me. She gave me a list blood work that she wanted run before she would work with him. Our primary doctor agreed, and they were run on a Friday. The following Sunday, my phone rang. It was the lab. The technician told me they never call patients directly, but they couldn't get in touch with my doctor. She told me I had to rush my son to the nearest ER at once. I didn't understand what was going on. She finally explained that my son's blood didn't clot at all, and that it was a life-threatening situation. Since he was near 10 months at this point, I thought she was overreacting. I promised to call my doctor first thing Monday morning. The following week was a whirlwind, but the bottom line was that he was diagnosed with Severe Hemophilia Type A (Factor VIII).
Hemophilia is often thought of as a hereditary condition, but 1/3 cases are spontaneous. For some unknown reason, that statistic keeps increasing. As a spontaneous carrier, I am a new line. It's extremely rare to miss severe hemophilia for that long. It is typically diagnosed at birth, either from excessive bleeding from circumcision or the cord stump. However, carriers are often missed, even though most are symptomatic. I have always bruised easily and had horrific nosebleeds as a child. I used to train in figure skating and had several incidents where an injury turned into prolonged joint swelling. I even bled excessively during surgery and struggled with anemia for years on end, but no one considered a bleeding disorder. You can learn about carrier symptoms here. As it turned out, we discovered that our daughter is not only a carrier as well, her body overuses the bad gene. She has been diagnosed with mild hemophilia as well as JIA.
The one saving grace about hemophilia today is that you can live a normal life. Just a few decades ago, a severe hemophiliac didn't survive until adulthood. While many people think hemophilia means dying from a paper cut, it's internal bleeding that poses the biggest threat. Hemophiliacs can bleed spontaneously for no reason at all. These bleeds can happen in a joint or muscle, causing pain and damage. In a worst-case scenario, the bleeding occurs in the head. While treatment has been around for several decades, the earlier treatment was based on blood products. During the 80s, most of the medications available were tainted with HIV and/or Hep C. Over half of the hemophilia community passed away, although there are a number still living with these conditions. While I'm grateful that we have different options today, I'm still saddened by what happened to our blood brothers.
And speaking of treatment... Our son is on factor replacement three times per week. This means that every Monday, Wednesday, and Friday, he gets an injection of the synthetic protein his blood is missing. This helps prevent bleeds. The challenge is that this must be injected directly into a vein. My husband and I have been trained to complete this task. It is arguably one of the hardest things I've learned how to do as a parent. In the majority of cases, children in this scenario get a port to make it easier. However, given his severe eczema (more on that below), that wasn't an option for us. At this point, we have it down to a science. But it also means we can't leave him for more than a day or two at a time. If he does get a bleed, we may find ourselves giving infusions every day until it resolves.
Food Allergies
Food allergies have become so common that it may seem a little ridiculous to talk about it. Overall, this has been one of the most painful aspects of the parenting journey. Our youngest, yes the one with severe hemophilia, started to show symptoms at three weeks of age. He was exclusively breast fed but began to develop a strange rash on his checks. The rash continued to worsen and spread until his skin was an inflamed mess from head to toe by several months of age. Every diagnosis we got was eczema. We changed everything that touched him. We tried every popular cream - including some I imported from Europe. No matter what I used, he kept getting worse.
As we were investigating his swollen knee, an immunologist we crossed paths with thought it might be food allergies. He ran some preliminary testing that showed positive results for seven foods. However, the allergist he tried to forward us to said it wasn't possible for a breast-fed infant to have allergies that young. My momma gut told me something different, so I began cutting those foods out of my diet. Lo and behold, he started to improve.
The center that began treating him for his hemophilia quickly referred us to an allergist who took the situation seriously. After blood work and scratch tests, we identified 22 foods. I immediately changed my diet and adjusted his. He was completely clear within a month. I was introduced to my new friends - right and left epi-pen jr. Thankfully, he's dropped a few allergies, but the list is still a bit painful. He's severely allergic to dairy, eggs, peanuts, tree nuts, fish, shellfish, sesame, and sunflower seed. In most instances, simply touching the allergen is enough to elicit a strong reaction.
In many ways, food allergies have been the most restrictive guest at the party. We had to stop visiting the homes of friends because trace amounts on the floor or furniture causes massive hives. We can't walk him into any restaurant, nor can we purchase food from one. I know a lot of people say they don't eat out but we REALLY can't. EVER. People can't cook for us. Most kitchens have too much cross contamination. There's very little prepared food I can purchase. I cook every little thing from scratch and I don't get days off. There are no more family gatherings for holidays or birthday parties. I challenge you to walk through 24 hours of your life and consider where food and food residue doesn't rule the day. I didn't know isolation to this extent could exist. Sometimes it physically hurts. I had always challenged myself to win the "most laid-back parent" award. Being forced to hover has been one of the most humbling experiences of my life.
If you think you or your child has signs of food allergies, please get a referral to an allergist. In many cases, it seems like pediatricians and/or family doctors want to handle it. Please understand that the field changes vastly ever few years, and those professionals are not adequately trained. Also understand that allergies can develop at any age. For reasons that are not well understood, more and more adults are developing new and severe allergies. The ONLY thing that can stop anaphylaxis is an epinephrine injector. An antihistamine, such a Benedryl, can stop symptoms but it will never prevent a case of full-blown anaphylaxis from turning fatal.
If you made it this far, you deserve an allergy-friendly cookie...
So this is what we live with. It's just a snippet. I hope I did it justice, but I also hope I didn't make it sound like we have no life. I won't lie. Some days are tough. But at the same time, it can be manageable with the proper action plan in place. We're slowly figuring out how to thrive versus simply surviving. The hardest part is the emotional shrapnel we all face. Sometimes I think our middle, "shadow sibling" has it the toughest (FYI - a shadow sibling is a sibling to a child with special/medical needs).
Would I change it? In a heartbeat. But since I can't, this has forced our family to pull together in ways we never would have before.
Bess
Follow me on Facebook.
If you enjoyed this, please visit the other wonderful blog participating in this series. You are sure to find a wealth of information on Recognizing the Signs of various special needs.
Moving on...
We're in the "maybe you're special needs, maybe you aren't" camp. I think my kids are special, and they have a lot of medical needs. Our mostly invisible needs put us at risk for all the unsightly things people with special needs face. There are a lot of emotional needs between my kids, our marriage faces the dreaded 90% divorce rate, and our monthly insurance EOB packets are novel sized. But by the grace of God, statistics are just numbers... much like the lovely "out of pocket max". At the end of the day, the most painful parts are the random messages that either oversimplify or demonize treatment options, or worse, peg you as an ungrateful brat for failing to recognize that so many people have it worse.
I warned you this would be a little raw. Bear with me. I've had so many amazing people in my life, but sometimes it's the ridiculous statements I fixate on.
Let's move on to the meat and potatoes...
Juvenile Arthritis with Uveitis
This story is a little complicated, so I'm going to skip some details and fast-forward the story a bit.
When my firstborn was 27 months of age, she woke with a swollen knee. We had heard her bang it the night before, but we brushed it off since she didn't seem to be in pain. Besides, I had issues with knee swelling my whole life, and it was never considered to be a big deal. This wasn't her first instance, so I chalked it up to genetics. By that evening, she was spiking fevers near 104. It wasn't that the fever was high - it was that she would be 99 and 10 minutes later be 104. The extreme shift left her shaking violently. We rushed her to the ER. Dr. Google said it looked like a knee infection, and those are serious.
Within 45 minutes of walking in the door, we had x-rays which showed nothing. An OR was scheduled to address a knee infection, but in the meantime, the Orthopedic surgeon on call wanted an MRI to make sure. It was a fantastic call because as they prepped her for surgery, he called it off. Instead, they admitted her to the hospital, and he gave an initial prediction of Juvenile Idiopathic Arthritis. The next step was to get her fever and heart-rate under control. It was a long, long night of alarms and such, but she eventually stabilized, and we were sent home. I couldn't wait to finally see a rheumatologist and prove him wrong.
Long story short... I was wrong and he was right. It was unusual because a diagnosis of JIA usually takes around 6 months. It went fast because as it turns out, my daughter also had a complication called uveitis, which is inflammation in the uvea of the eye. As with many JIA children, it is asymptomatic, meaning it can only be detected by a special test given by an ophthalmologist. Her eye situation was dire. She was a 4+ in both eyes, which is the worst grade you can get. 1/5 children with this condition go blind, even with the best treatment possible.
We've been on this path for 5+ years now. While she has permanent damage in her knee from the prolonged swelling, her joints have done well, for the most part. We went through cortisone injections in her knee and jaw. We never identified issues with her hands, but she stopped using her fine motor skills for a few years. Thankfully, she uses her body well these days. Unfortunately, we still battle the eye issues. We made it one year with quiet eyes, but a flare has returned recently.
One of the most difficult aspects of JIA is the treatment options. Our first line of defense was a chemotherapy drug called Methotrexate. I'm extremely natural minded, so I was hesitant at first, but her eyes were in a crisis state. We bounced between the pill form and the subcutaneous injection. Yes, we had to give weekly injections of a chemo drug to our child at home. I know it was awful, not because I remember it being so, but because I blocked it so strongly. She would cry because it made her feel so sick. I would cry at the thought of torturing her. Several hours each week were spent ramping up to a 2 minute process.
We eventually added a biological drug called Remicade, which has been magic for us. We were able to abandon the dreaded Methotrexate for good. For years, my daughter was vacant, taking little interest in life. Once we adjusted to this medication, she became vibrant, and her eyes finally cleared! We're in a spell where it isn't working as well for the moment, but we're hopeful that a weight-adjusted dose will even things out again. She must take this as an infusion in the hospital. Since it's every 4 weeks, we make a fun day out of it.
Did you know that Juvenile Arthritis affects around 300,000 children in the US? In fact, it affects more children than juvenile diabetes, cystic fibrosis, and muscular dystrophy combined. You can learn more about the symptoms here.
Hemophilia
My third child is a boy. He is the type of child that was smiling hours after birth. When he was four months old, there was an incident where I went to put him in the Ergo carrier, and he screamed. It took me another day to realize he was in extreme pain in his left knee. As it began to swell, I immediately made an appointment with our doctor. After an ultrasound, we were sent to an orthopedic specialist. In fact, it was the same specialist who first saw my daughter in the ER. He once again suspected JIA and sent us to rheumatology. Rheumatology felt he was too young for JIA but noted how horrible his skin rashes had become (more on that path below). After being passed around for x-rays, ultrasounds, and tube after tube of blood work, no one had an answer on his knee. By this time, months had passed. He tried to crawl a few times, but for the most part, he skipped straight to standing.
My daughter was in physical therapy to help with her knee damage from JIA. Since he was still having issues limping, our PT offered to see him. However, she told me she had a strange suspicion but didn't want to worry me. She gave me a list blood work that she wanted run before she would work with him. Our primary doctor agreed, and they were run on a Friday. The following Sunday, my phone rang. It was the lab. The technician told me they never call patients directly, but they couldn't get in touch with my doctor. She told me I had to rush my son to the nearest ER at once. I didn't understand what was going on. She finally explained that my son's blood didn't clot at all, and that it was a life-threatening situation. Since he was near 10 months at this point, I thought she was overreacting. I promised to call my doctor first thing Monday morning. The following week was a whirlwind, but the bottom line was that he was diagnosed with Severe Hemophilia Type A (Factor VIII).
Hemophilia is often thought of as a hereditary condition, but 1/3 cases are spontaneous. For some unknown reason, that statistic keeps increasing. As a spontaneous carrier, I am a new line. It's extremely rare to miss severe hemophilia for that long. It is typically diagnosed at birth, either from excessive bleeding from circumcision or the cord stump. However, carriers are often missed, even though most are symptomatic. I have always bruised easily and had horrific nosebleeds as a child. I used to train in figure skating and had several incidents where an injury turned into prolonged joint swelling. I even bled excessively during surgery and struggled with anemia for years on end, but no one considered a bleeding disorder. You can learn about carrier symptoms here. As it turned out, we discovered that our daughter is not only a carrier as well, her body overuses the bad gene. She has been diagnosed with mild hemophilia as well as JIA.
The one saving grace about hemophilia today is that you can live a normal life. Just a few decades ago, a severe hemophiliac didn't survive until adulthood. While many people think hemophilia means dying from a paper cut, it's internal bleeding that poses the biggest threat. Hemophiliacs can bleed spontaneously for no reason at all. These bleeds can happen in a joint or muscle, causing pain and damage. In a worst-case scenario, the bleeding occurs in the head. While treatment has been around for several decades, the earlier treatment was based on blood products. During the 80s, most of the medications available were tainted with HIV and/or Hep C. Over half of the hemophilia community passed away, although there are a number still living with these conditions. While I'm grateful that we have different options today, I'm still saddened by what happened to our blood brothers.
And speaking of treatment... Our son is on factor replacement three times per week. This means that every Monday, Wednesday, and Friday, he gets an injection of the synthetic protein his blood is missing. This helps prevent bleeds. The challenge is that this must be injected directly into a vein. My husband and I have been trained to complete this task. It is arguably one of the hardest things I've learned how to do as a parent. In the majority of cases, children in this scenario get a port to make it easier. However, given his severe eczema (more on that below), that wasn't an option for us. At this point, we have it down to a science. But it also means we can't leave him for more than a day or two at a time. If he does get a bleed, we may find ourselves giving infusions every day until it resolves.
Food Allergies
Food allergies have become so common that it may seem a little ridiculous to talk about it. Overall, this has been one of the most painful aspects of the parenting journey. Our youngest, yes the one with severe hemophilia, started to show symptoms at three weeks of age. He was exclusively breast fed but began to develop a strange rash on his checks. The rash continued to worsen and spread until his skin was an inflamed mess from head to toe by several months of age. Every diagnosis we got was eczema. We changed everything that touched him. We tried every popular cream - including some I imported from Europe. No matter what I used, he kept getting worse.
As we were investigating his swollen knee, an immunologist we crossed paths with thought it might be food allergies. He ran some preliminary testing that showed positive results for seven foods. However, the allergist he tried to forward us to said it wasn't possible for a breast-fed infant to have allergies that young. My momma gut told me something different, so I began cutting those foods out of my diet. Lo and behold, he started to improve.
The center that began treating him for his hemophilia quickly referred us to an allergist who took the situation seriously. After blood work and scratch tests, we identified 22 foods. I immediately changed my diet and adjusted his. He was completely clear within a month. I was introduced to my new friends - right and left epi-pen jr. Thankfully, he's dropped a few allergies, but the list is still a bit painful. He's severely allergic to dairy, eggs, peanuts, tree nuts, fish, shellfish, sesame, and sunflower seed. In most instances, simply touching the allergen is enough to elicit a strong reaction.
In many ways, food allergies have been the most restrictive guest at the party. We had to stop visiting the homes of friends because trace amounts on the floor or furniture causes massive hives. We can't walk him into any restaurant, nor can we purchase food from one. I know a lot of people say they don't eat out but we REALLY can't. EVER. People can't cook for us. Most kitchens have too much cross contamination. There's very little prepared food I can purchase. I cook every little thing from scratch and I don't get days off. There are no more family gatherings for holidays or birthday parties. I challenge you to walk through 24 hours of your life and consider where food and food residue doesn't rule the day. I didn't know isolation to this extent could exist. Sometimes it physically hurts. I had always challenged myself to win the "most laid-back parent" award. Being forced to hover has been one of the most humbling experiences of my life.
If you think you or your child has signs of food allergies, please get a referral to an allergist. In many cases, it seems like pediatricians and/or family doctors want to handle it. Please understand that the field changes vastly ever few years, and those professionals are not adequately trained. Also understand that allergies can develop at any age. For reasons that are not well understood, more and more adults are developing new and severe allergies. The ONLY thing that can stop anaphylaxis is an epinephrine injector. An antihistamine, such a Benedryl, can stop symptoms but it will never prevent a case of full-blown anaphylaxis from turning fatal.
If you made it this far, you deserve an allergy-friendly cookie...
So this is what we live with. It's just a snippet. I hope I did it justice, but I also hope I didn't make it sound like we have no life. I won't lie. Some days are tough. But at the same time, it can be manageable with the proper action plan in place. We're slowly figuring out how to thrive versus simply surviving. The hardest part is the emotional shrapnel we all face. Sometimes I think our middle, "shadow sibling" has it the toughest (FYI - a shadow sibling is a sibling to a child with special/medical needs).
Would I change it? In a heartbeat. But since I can't, this has forced our family to pull together in ways we never would have before.
Bess
Follow me on Facebook.
If you enjoyed this, please visit the other wonderful blog participating in this series. You are sure to find a wealth of information on Recognizing the Signs of various special needs.
Autism What to Know and Signs to Watch For | Natural Beach Living
Sensory Processing Red Flags | Lemon Lime Adventures
Seeing the Signs of Childhood Trauma | STEAM Powered Family
Recognising signs as a first time special needs parent | My Home Truths
Hemophilia, Juvenile Arthritis, and Allergies… Oh my | Grace and Green Pastures
Myths About Recognizing Developmental Delays | Life Over C’s
Recognizing the Signs of Reactive Attachment Disorder | The Chaos and The Clutter
7 Sanity-Saving Tips if You Think Your Child has Special Needs | B-Inspired Mama
When They Say It’s Just Your Parenting | This Outnumbered Mama
Signs That Your Early Reader Has Hyperlexia | And Next Comes L
How to Deal with the Unexpected Learning Disability | Kori at Home
Forgiving Myself for Denying the Signs of Autism in My Daughter | Parenting Chaos
Ripples on a Pond: Warning Signs of Early Childhood Development Problems | 3 Dinosaurs
Oh Bess, this is absolutely beautiful! I had tears running down my cheeks through at least half of the post. And oh those food allergies I'm right there with you as Bulldozer has over 30 and Sunshine has 13. Thank you so much for taking the time to write this, to share your story. It is unbelievable the challenges your family has gone through. I love the honesty. There is so much in this post! All I want to do is give you a hug!
ReplyDeleteOh Bess, this is absolutely beautiful! I had tears running down my cheeks through at least half of the post. And oh those food allergies I'm right there with you as Bulldozer has over 30 and Sunshine has 13. Thank you so much for taking the time to write this, to share your story. It is unbelievable the challenges your family has gone through. I love the honesty. There is so much in this post! All I want to do is give you a hug!
ReplyDeleteAs a coeliac I completely understand the impact of food allergies on everyday life but I don't know how you manage so many of them - managing one is hard enough for me! I had some knowledge of haemophilia but I did not know much at all about juvenile arthritis or uveitis. Thanks for sharing a glimpse into your life and everything you do to help your kids with their complex needs x
ReplyDeleteAs a coeliac I completely understand the impact of food allergies on everyday life but I don't know how you manage so many of them - managing one is hard enough for me! I had some knowledge of haemophilia but I did not know much at all about juvenile arthritis or uveitis. Thanks for sharing a glimpse into your life and everything you do to help your kids with their complex needs x
ReplyDeleteWow! I can only imagine how emotional that was for you and your husband at the beginning. It's so hard when your child/children are sick and you feel helpless. I am so happy to hear you all have been working together at everything and your kids are doing so well.
ReplyDelete