Monday, 4 February 2019

Things parents and teachers need to know about ADHD

The blood left over in the umbilical cord and placenta after a baby is born has special cells in it that can treat and even cure some serious diseases. The blood can be collected and stored — and that’s what many private cord blood banking companies encourage parents to do, in case their child (or someone else in the family) develops one of those diseases in the future.

The American Academy of Pediatrics wants parents to collect that cord blood. But instead of keeping it for themselves, they would like them to give it away to a public cord blood bank.

Cord blood contains cells called hematopoietic stem cells. These cells can turn into any kind of blood cell and can be used for transplants that can cure diseases such as blood disorders, immune deficiencies, metabolic diseases, and some kinds of cancers. Research is revealing more and more ways it can save lives. It is precious — almost magical — and absolutely worth keeping. Doing so is completely safe for the baby, and doesn’t affect labor or delivery.

The diseases that cord blood treats are not very common, so the chances of any given child developing them are low — but worldwide they affect millions of children. That’s why public blood banks are used 30 times more often than private ones. If a family has a known genetic problem that puts them at risk of developing an illness that could be treated with cord blood, then it makes sense to keep it for family use. But if that’s not the case, it makes more sense to donate it, because it’s much more likely to be needed by another family than by the baby’s family.

Giving to a public blood bank is free, but banking through a private bank costs money: $1,000 to $2,000 initially, and then a yearly fee of $100 to $200. That’s a lot of money, which means that most families who end up needing cord blood don’t have a personal supply banked for them. Private cord blood banks also don’t have to meet the same accreditation standards as public ones, which means that the cord blood may end up being less useful if it’s needed.

It is only recently that we realized how precious cord blood is; before then, we threw it out. We still throw it out heartbreakingly often. There is some advanced planning involved to collect it, which is why we need to get the word out to everyone who is or might be an expectant parent, or anyone who might know an expectant parent and can tell them about cord blood donation. There is a saying that being poor is expensive. From personal experience, I know this to be true. But I think it also needs to be said that, especially in the United States, chronic illness can be quite expensive as well. In fact, there is a huge intersection between poverty and disability/illness. As with many intersections, it is a chicken-or-egg scenario, difficult to determine which is begetting which. But one thing is clear: there are often blind spots about these expenses in the medical community and how they can impact chronically ill people already struggling with finances.

Recently I attended a seminar on the topic and was immediately struck by the lack of attention to the expense of the nonpharmacological treatments being advised to take the place of opioids. I watched the doctors on the panel enthusiastically promote acupuncture, yoga, chiropractic care, biofeedback, massage, lidocaine patches, and TENS units. Yet, many of these treatments are not covered by most insurance plans and can be very expensive to pay for out of pocket. In the case of something like massage or acupuncture, it can cost well over $100 per visit. Since these therapies usually require multiple visits to achieve long-term outcomes, it can cost patients hundreds or thousands of dollars to cover the costs of such treatments. Considering that most people with disability live below the poverty level, many people with chronic pain may not be in a financial position to fund these alternative treatments — meaning they are basically unavailable to them.

Likewise, insurance doesn’t cover so many of the nutritional and herbal supplements and compounded medications that offer chronic illness patients a modicum of relief. Recently, my physiatrist wrote me a prescription for compounded low-dose naltrexone, or LDN, to treat my chronic pain. LDN is an opiate antagonist that has been demonstrated during limited clinical trials to reduce symptoms associated with many autoimmune diseases, including pain. However, I was informed by the pharmacy that my insurance plan would not cover it, and it was $80 for a month’s worth of daily dosages. I could not afford it, so I didn’t fill the prescription. Due to its expense, I couldn’t try a non-opioid medication that could have improved my function and quality of life.

Another example is one I face right now as someone with the connective tissue disorder Ehlers- Danlos syndrome. While there is no cure for EDS, I find that one thing that helps relieve some of my pain and minimize further injury is stabilizing my joints and soothing my spastic muscles. This requires generous use of splints, braces, and Kinesiology Therapeutic (or KT) Tape. None of these are covered by my insurance and can add up quickly — especially the KT Tape, which needs to be replaced weekly — straining my limited budget. Likewise, insurance also does not pay for the seat cushions that offer me better ergonomics at my home office so that my spine and hips don’t constantly lock up.

Insurance also didn’t cover the new bed I got last year that offers better back support, or the full-body pregnancy pillow (note: I am not pregnant) that I credit as only thing that has significantly improved my sleep in the past six months. Additionally, I am interested in obtaining some compression clothing, which has been indicated as having potential to improve mobility and pain in EDS patients. But because insurance won’t cover this either, it will require a financial investment on my part that is a huge gamble. If the clothing is not helpful, I’ve sunk in a significant amount of money I cannot recover. As a low-income individual, each choice is one I weigh heavily — the possible positive outcomes versus the potential for failure, and then the money wasted on it and what it could have otherwise gone to, such as rent or utilities.

I am not sure what can be done, except to pressure insurance plans to offer coverage of alternative treatments, and for more companies that offer such treatments or distribute supplements to offer sliding-scale or discounted rates to those of limited means. Hopefully, more pain clinics will start utilizing complementary methods to holistically treat pain symptoms, such as biofeedback and acupuncture, which will offer more incentives for insurance plans to cover them. This begins with awareness and needs to escalate to active advocacy to get us there.
Attention deficit hyperactivity disorder is a childhood disorder that affects as many as one out of 10 children in the United States. Even though it’s fairly common, many misconceptions still persist. So here are five important things you should know if you are a parent or a teacher of a child with ADHD.

1. The hallmark symptoms of ADHD are inattention, hyperactivity, and impulsivity. Most kids are inattentive, impulsive, and hyperactive at times. But for a diagnosis of ADHD, these symptoms must interfere significantly in multiple places, such as at school and at home. This is a childhood disorder, meaning the symptoms must be present before adolescence. The symptoms can start in preschool, but most kids aren’t diagnosed until later in childhood. The symptoms may change over time, with hyperactivity and impulsivity being more pronounced in young children, while high-schoolers and young adults often display more difficulty with attention. Many children (perhaps as many as half) will outgrow their symptoms but others do not, so ADHD can affect a person into adulthood.

2. There are different types of ADHD: predominantly hyperactive/impulsive presentation; predominantly inattentive presentation; combined presentation. Most children with ADHD have a combination of inattention, impulsivity, and hyperactivity and would be diagnosed with ADHD-combined presentation. Other children who struggle most with hyperactivity and impulsivity would get the diagnosis of ADHD-hyperactive/impulsive presentation. A third group has predominantly problems with attention. While you often will hear these children described as ADD (attention deficit disorder), the correct term is ADHD-predominantly inattentive presentation. Girls tend to have inattentive symptoms more than boys.

3. ADHD is a brain-based disorder. Kids can’t overcome symptoms of ADHD by “trying to concentrate harder” or by willing themselves to “pay attention.” Brain imaging studies have shown that people with ADHD have structurally different brains than people without ADHD. It also runs in families. Children whose parents have ADHD have a 40% to 60% chance of also having ADHD. Sometimes a child’s diagnosis can be the first clue that a parent may have ADHD.

4. The symptoms of ADHD can make school, family, and social relationships difficult. School requires attention and organizational skills, things that can be difficult for kids with ADHD. They may lose homework, have difficulty organizing their thoughts, and have problems thinking ahead and planning. In addition, it’s common for children with ADHD to also have learning disabilities, such as dyslexia, that make schoolwork even more challenging. While kids with ADHD don’t generally have a specific problem with social skills, difficulty with emotion regulation and impulsivity can interfere with personal relationships, and so it can be hard for them to keep and maintain friendships. It can also be hard for them to follow social rules, control their emotions, or say the appropriate thing. Finally, problems with organization, planning, and focusing on what’s being said to them can make many aspects of home life quite difficult. Relationships with parents and siblings can take a lot more work.

5. There are great treatments available for children with ADHD. There are a variety of research-backed therapies that can help relieve symptoms of ADHD. Some of the most effective approaches combine several therapies, for example:

    Medication: Many parents are fearful of trying medication, but ADHD medications are some of the most well-studied across all areas of medicine. Stimulant medications (such as Ritalin, Adderall, or Concerta) are the most commonly prescribed. These drugs stimulate the parts of the brain that are understimulated. These parts of the brain are related to thinking and attention. The goals of these medications are to reduce hyperactivity/impulsivity and increase focus/attention.
    Behavior therapy: Behavior therapy teaches the child to be aware of, monitor, and eventually modify disruptive behaviors. The therapist will teach social skills, such as waiting your turn, reading facial expressions, sharing, asking for help, and reacting appropriately when teased. Cognitive behavioral therapy emphasizes mindfulness, and teaches a child to be aware of her thoughts and emotions as a way of improving attention and focus.
    Education and training: Knowing oneself, or one’s child, can help parents understand how ADHD and its symptoms affect the family unit. Parents and teachers can learn tools that can help the child learn new, pro-social, and positive behaviors. Adults can learn how to cope with inappropriate behaviors and encourage positive ones. This can help reduce ADHD symptoms.
    ADHD coaching: A coach can help students with ADHD work toward goals, see change as a positive thing, improve productivity and functioning, and keep a student accountable. This is particularly useful for older kids.

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