Infections, Immunity, and Allergies
Commentary
I want to say upfront that I am neither pro-vaccine nor anti-vaccine, and this commentary is not just another position paper on what has become a very contentious issue recently. Instead, this is a series of reflections on the very difficult decisions that need to be made by parents of children with neurological, metabolic, or neuromuscular disorders about vaccinating their children.
This Month's Focus: Infections, Immunity, and Allergies
The Never-Ending Sinus Infection
by Melody Pohla
It seems like we have been dealing with headaches, facial aches, thick colorful drainage, sore throats, teeth pain, congestion, and coughs related to sinus infections in my family since before I can remember! I have had ongoing issues with sinus infections, as has my dad. Little did I know that sinus infections would affect my children even more!
Our IVIG Story: Treating Immune Deficiencyby Melody Pohla
It seems like we have been dealing with headaches, facial aches, thick colorful drainage, sore throats, teeth pain, congestion, and coughs related to sinus infections in my family since before I can remember! I have had ongoing issues with sinus infections, as has my dad. Little did I know that sinus infections would affect my children even more!
by Jenny Hobbs
IVIG or intravenous immune globulin is something our family first learned about in February, 2005. While my kids have more issues than an immune deficiency and some of this may never be your experience, this is our journey. Everyone is going to have a different story, but there is always enough common ground that we can all learn from each other, especially when something is uncharted territory for your family.Letting Your Dairy-Free Child Thrive
Allergies and intolerances to milk protein, along with lactose intolerance, are some of the most common food-related problems faced by young children and require dairy avoidance or lactose-free diets. Other children may also be placed on milk-free (casein-free) diets if they are on the autism spectrum or have other neuro-behavioral diagnoses. Many families decide that the best option is to remove all dairy products from their child's diet, and in some cases, from the diets of the entire family. While this diet may be difficult, many dairy substitutes are now available that allow children to continue eating their favorite foods. Your child can live dairy-free and still thrive!
Specialty Article
Pain and Palliative Care
The Importance of Early and Aggressive Pain Treatment in Children with Complex Medical Issues
Kristi is an adorable and happy three-year-old who was deprived of oxygen at birth and is now diagnosed with severe cerebral palsy. While she was an infant, Kristi was incredibly irritable and struggled with reflux and vomiting, but she eventually progressed to 25% oral feeding and 75% G-tube feeding. Six months ago she had a virus that caused vomiting and diarrhea. Since that time, she has become irritable again, appears to have nearly constant abdominal pain, vomits frequently, and has only been able to tolerate slow G-tube feeds.
Frankie is a vibrant six-year-old who is diagnosed with a maternally-linked mitochondrial myopathy. While he is reasonably healthy, he does experience difficult to treat constipation, intolerance to heat, migraine headaches, and occasional bouts of severe vomiting. Four months ago he fell off his bicycle and fractured his left leg. His fracture has healed, but he continues to have tingling and stabbing pain in his leg, along with color and temperature changes in his foot. At times, the pain also affects his other leg.
These two children are representative examples of the large number of children with both chronic pain and complex medical issues, particularly those whose conditions are neurological or neuromuscular in origin. In addition, the type of pain these children experience is often atypical or non-specific, making it difficult to treat. Many children like Kristi and Frankie experience neuropathic or nerve pain, visceral or internal pain, or functional pain without clear organic cause.
The Importance of Early and Aggressive Pain Treatment in Children with Complex Medical Issues
Kristi is an adorable and happy three-year-old who was deprived of oxygen at birth and is now diagnosed with severe cerebral palsy. While she was an infant, Kristi was incredibly irritable and struggled with reflux and vomiting, but she eventually progressed to 25% oral feeding and 75% G-tube feeding. Six months ago she had a virus that caused vomiting and diarrhea. Since that time, she has become irritable again, appears to have nearly constant abdominal pain, vomits frequently, and has only been able to tolerate slow G-tube feeds.
Frankie is a vibrant six-year-old who is diagnosed with a maternally-linked mitochondrial myopathy. While he is reasonably healthy, he does experience difficult to treat constipation, intolerance to heat, migraine headaches, and occasional bouts of severe vomiting. Four months ago he fell off his bicycle and fractured his left leg. His fracture has healed, but he continues to have tingling and stabbing pain in his leg, along with color and temperature changes in his foot. At times, the pain also affects his other leg.
These two children are representative examples of the large number of children with both chronic pain and complex medical issues, particularly those whose conditions are neurological or neuromuscular in origin. In addition, the type of pain these children experience is often atypical or non-specific, making it difficult to treat. Many children like Kristi and Frankie experience neuropathic or nerve pain, visceral or internal pain, or functional pain without clear organic cause.
Feature
Facts about Weighted Blankets and Directions to Make Your Own
by Linda McInnis
My daughter with Rett Syndrome and Mitochondrial Disease would never sleep through the night. There was always something that set her off. A skeptic by nature, I never thought a weighted blanket could do much to calm a child. Boy, was I surprised.
Only those closest to my daughter have a remote chance of figuring out her ways. For instance, she doesn't flinch at the sight of a needle, but screams loud enough to wake the neighborhood if she has gas pain. Her weighted blanket calms her down by affecting her sense of movement and touch.