Medical complications of the developmentally disabled
H1N1: What to do to keep our disabled children safe and healthy?
I try not to use rubysoup as an outlet for just my vaccine beliefs, but H1N1 has been pushed to the forefront of our lives and, ironically, for those of us raising children with disabilities it is of even higher priority. Our children have been identified as a high-risk group for H1N1 and, yet, this is not news to us. In fact, our children are a high-risk group for most viral infections, including the seasonal flu. The underlying medical conditions that most of our children face simply make them more susceptible to catching infection and to having a harder time healing once they have fallen ill. This is not the first, nor will it be the last, winter that we will be super vigilant in keeping Quincy healthy…it’s just part of what we do.
With H1N1 it’s very difficult to know how to separate the hype and hyperbole from the truth. It really doesn’t feel like anyone is being terribly truthful. The CDC clearly has an agenda, which is to achieve herd immunity to H1N1 at whatever cost necessary. The public seems unwilling to have their individual health, or the health of their children, sacrificed to achieve herd immunity…many of us want our individual health to be the priority. The media is using this as a political tool, using this singular topic to either support or rail against our current Administration. It’s interesting and frustrating to watch it all play out, particularly for someone who has spent years working on the issue of vaccine safety in an environment where few really cared. Suddenly, everyone cares, everyone is an expert and everyone has an opinion.
But the ultimate question remains: what to do? I try my best to educate people. You should know if you are a high risk group. You should know that being overweight, having underlying medical conditions or being pregnant makes you high risk. You should read the package insert on any drug or medication you are taking, including vaccines, so you understand the risks. You should see a doctor immediately if you are sick…anti-virals have shown to be somewhat effective. You should practice healthy habits, take your vitamins and exercise. You should consult with a doctor or health care provider that will respect your concerns and decisions and is committed to keeping you healthy.
Recently the American Academy of Pediatrics suggested to their membership that if pediatricians have parents who refused to vaccinate their children they should “fire” them as patients. This is an divisive, ugly, polarizing issue. You absolutely will face criticism for whatever decision you make. You should not be afraid. You should not be bullied into doing something you aren’t comfortable doing. I hope we all get through this winter in good health and if you do get sick, I wish you a speedy recovery. I hope that the winter of 2009-10 goes down in history as nothing more than a huge lesson learned about all the facets of immunization and immunization policy, about individual rights, and about informed consent.
H1N1 and other fears: the complexity of making serious medical decision for our disabled children
Vaccines are my thing…I think most of my readers know this by now. It is what brought me into the world of disability. God (if there is one) gave me a healthy, perfect daughter. It was a man-made whole cell pertussis vaccine that took her from me and led me down the path I walk today. It was my choice as Quincy’s mother to vaccinate her…to do what I thought was best. It turned out to be a bad decision. I no longer take any decision regarding my children’s health lightly. I have learned the hard way that if there is a risk, and there is always a risk, then that risk can become reality in an instant.
Today we face the amped up threat of H1N1 influenza. We have the CDC and the federal government using intense pressure to have us vaccinate ourselves and our children. There are many theories out there about all this. Here are some facts to ponder: The federal government has spent nearly $2 billion dollars to purchase vaccines from pharmaceutical companies. The vaccines began clinical trials two short weeks ago…when they are offered to the public they will be virtually untested and will have a questionable safety profile. Insurance companies have joined with the federal government in the vaccination campaign. Insurance companies do not make money when they have to pay claims for doctor visits, medication and hospital bills. The H1N1 virus is mild at this point in time, but it does take a stronger hold on those with underlying medical conditions.
So, as parents of children who are medically fragile we must face this threat and make our own decisions. Do we use a vaccine that hasn’t been thoroughly tested? Quincy was given a vaccine that had been on the market for almost two decades and still suffered tragic consequences. Do we refuse the vaccine and risk our children getting ill? Who do we believe?
My advice is this…do your homework and educate yourself as much as you can. One thing you can do is watch what is occurring in the southern hemisphere where it is winter (the flu virus thrives in cold weather, which is why it was mostly dormant in the summer) and see what is being reported. In the age of the Internet it is quite simple to read newspapers from all over the world. Watch the trends in your community. Talk to a doctor or health care professional that you trust. Many health care professionals are voicing concerns about using an untested vaccine and you may be surprised at their advice. Purchase lots of hand soap, Purell and Kleenex and teach your children the importance of washing their hands and avoiding the germs of others as much as possible..
Parents shoulder the burden of their children’s health care decisions and it is an enormous responsibility. You must understand that we do the best we can. You have to forgive yourself if your choice leads to a result that you didn’t expect. We don’t always win. Quincy is living proof of that.
Alternative medicine as a treatment option
My initial impression was very positive of my new doctor. We were in complete agreement on how we look at health care. He was very respectful of my concerns and very supportive of my decisions. Turns out he is my neighbor and was aware of my situation with Quincy so I didn’t have to explain the issues that I face on a daily basis and that was extremely helpful.
This doctor is very different from most and is the first to tell his patients of this. He is a traditionally trained medical doctor who practices alternative therapies for treatment of disease. My perspective on alternative medicine is that I will try anything as long as it isn’t harmful or invasive. I mean, lots of people have found relief for chronic ailments using alternative therapies, like acupuncture and chiropractic care. I think to only look to conventional medical treatments limits one’s options. That being said, I am moving slowly into this world and fully understand that conventional medicine will always play an important role in our lives.
I am extremely healthy, so that makes his job easy. I am active, I am not overweight, and all my labs show that all things measured are in the normal to lowish range. So, that’s a relief. At this time my biggest change will be to begin taking vitamins. I have never taken supplements and am new to this world, but he believes that my body would benefit from vitamins so I will give it a try. They aren’t excessively expensive and is a fairly easy change to make. He said if I really want to feel good I should consider giving up caffeine and alcohol. That is a tough one. I am considering this, but it will definitely be a challenge if I decide to try. I love my morning mocha’s and a glass of wine in the evening.
We discussed Quincy and he was very interested in seeing her and working with her. He said he has many patients with many health challenges and wasn’t at all intimidated about treating her. He said she would benefit from using some natural approaches for aspects of her health care, such a constipation. It makes sense that if we can keep her healthy naturally, instead of with over-the-counter chemical treatments, it would be a better choice.
Finally, for all the back aches and pains that I suffer from doing so much heavy lifting with Quincy he gave me a prescription for massage therapy. Yep…massage therapy! I am going to keep this doctor around…he is a good guy. If regular therapeutic massages, natural vitamin supplements and cutting back on caffeine and alcohol make me feel better than I already do then I’m willing to give it a try!
Routine medical care for adolescents with severe disabilities
Tomorrow I have an appointment with a local M.D. who has a unique practice that combines alternative and traditional medicine. I am feeling fine, but am in search of a different type of doctor to assist us with Quincy.
Adolescents with severe disabilities fall into a funny place when it comes to routine medical care. We have our specialists, like our pediatric neurologist, who are brilliant in their areas of specialty. And, we have a pediatrician that I find is most suited for well-baby visits, immunizations (which is an issue between us), and ear infections. It has become clear to me that Quincy is a bit more complicated than what most pediatricians deal with and they really aren’t the foremost authority on what she needs. I have spoken to my gynecologist about Quincy and she is willing to take her on as a patient, but again, I think she will mostly be useful with women issues that is stuff I ’m not quite ready to face.
I need a doctor that understands the basic, yet unique, health needs of a child who sits in a wheelchair, is unable to do any unassisted weight-bearing, and requires total care for all her needs. Because children, particularly teens like Quincy, who have these challenges have very different needs for every day health. I need to understand more about her nutritional needs and I am interested in the alternative medicine because it is generally less invasive. Lord knows Quincy takes enough pills and has had enough invasive procedures to last a lifetime, so I don’t need another doctor who wants to poke and prod and prescribe more medication.
I hope my interview disguised as an appointment goes well. Because I, too, need a doctor who understands the issues I face on a day-to-day basis. I need someone who can advise me on my health and who won’t simply tell me to get more rest or find some help. I need someone who understands that my life is what it is and to take that into consideration when treating me. I have done this type of interview before and have not yet found what I am after. I will keep my fingers crossed that maybe this new doctor will fit our needs.
Seizure medication: unfortunate side effects and ineffective control
I mentioned a while ago that we were starting Quincy on a new seizure medication. Her seizure control wasn’t as good as we’d liked and she doesn’t have much room left to move on her Keppra or her Depakote. So, we began the slow process of introducing a new medication. Unfortunately, this didn’t work as we had hoped. Initially the seizure control improved, although in our experience that is a pretty typical initial result for any new medication, but as we continued to increase her to a therapeutic level she began experiencing frustrating side effects. She began sleeping far too much, she completely lost her appetite and began refusing to eat, and we battled constant constipation. I believe the constipation was more a result of her being too lethargic for her body to even function properly.
So, we are now in the slow process of weaning her off this medication. It will take seven weeks to safely take her off this drug. We are three weeks into the process and we finally have our Quincy back. She is alert and happy, has a healthy appetite and her body is functioning regularly. So, looks like we made a good decision.
The only scary part is that as we wean her down and keep her other meds at their current level, we risk an increase in seizures. So far we haven’t had much trouble with this but we have to keep our fingers crossed.
I am off to Salt Lake City for two more days of vaccine safety meetings with the Center for Disease Control. I apologize for not writing more…I have been travelling quite a bit lately for this important work and when I’m home it seems I only have time to catch up with my family and my sleep before heading out again. Hopefully by mid-March my life will slow down a little.
Weighing the risks of seizure medications against their benefits
Often when I write I think about current issues that we face raising Quincy. It occurred to me last night that we have been raising Quincy for almost 14 years and that much of what we know today is based on our experiences over the past 14 years. On many issues we still rely on our experience from long ago to help guide our current decisions.
One of our biggest challenges over the years is our constant, frustrating struggle with seizure medication. Seizure disorders are fickle bitch to manage. When Quincy was first diagnosed we expected our doctors to prescribe the magic medication to fix the problem. You learn very quickly that there isn’t a simple solution. Seizures look different from individual to individual. They manifest themselves differently, they occur in different lobes of the brain, they change as the child grows and matures. What worked yesterday may not work today and what works tomorrow may not work next year.
Seizure medication is problematic. Some are sedatives and cause drowsiness…in Quincy’s case drowsiness tends to be a trigger for seizures so these kind of meds actually cause her more harm than good. Some have potentially serious side effects on the child’s internal organs, like their kidneys and liver, so even if they are effective you really don’t want to use them for too long. Some can effect a child’s equilibrium, some can disrupt sleep, some can affect their appetite…the list is long and scary. Parents have to constantly weight the benefit of the drug against its potential side effects.
Even after you’ve found a drug or drug combination that controls seizures and doesn’t have any serious side effects on your child, you have to deal with the fact that often seizure meds stop working. This is true. What worked well for a year or two or six may just slowly lose it’s effectiveness. We refer to it as “breaking through”. The seizures find a way to break through the meds and then you have to start again.
There is a little good news…over the past 14 years there have been some new seizure medications brought to the market that have much fewer side effects and get at seizures in new ways. We have had pretty decent success with some of these new medications (Keppra, for example) and it has allowed us to avoid some of the scarier options. However, part of Quincy’s med cocktail still contains Depakote and we hope we can remove it someday. But, so far her control is pretty good and so we are willing to leave Depakote on-board for the gain of fairly decent seizure control.
If you are caught up in this very confusing world of seizure medications take heart, you are not alone. I have learned a great deal from other families who are in the same tough position we are in…what works on one child probably won’t work on yours, but just knowing that the kinds of struggles and decisions we face are the same for others brings comfort. Keep doing your homework and talking to your doctors…we are always finding new things to try and if it’s better for Quincy then it’s worth the effort on our part to make changes.
The fear and reality of losing a disabled child to their disability
This is a post that I have considered writing many times, but have thus far avoided. It is one of those dark parts of my life that I try not to visit. It is the reality that children like Quincy are fragile and that the odds are stacked against them. It is about the reality that I will probably outlive her. It is about the cold fear we face about losing her.
Just before the holidays a very young, very medically fragile disabled girl at Quincy’s school died from the complications of her disability. It is one of those things my husband and I do not discuss. Our hearts break for the family and the fear strikes home for each of us. Today I read about John Travolta’s son, Jett, dying from complications of his seizure disorder. I realize that there are so many parents out there like me who will read about this tragedy and internalize it for days. We will cry in private where no one can see us, we will not discuss it out loud, and we will share the family’s grief knowing that but for the Grace of God that could be us.
Most parents like us know this fear and face it regularly. It is what separates us from other parents. It is what causes those outside our world to judge us as “crazy”, “irrational”, or my personal favorite, “over-protective”. The judgements are fine…guilty as charged, as long as you understand that my behaviour isn’t baseless but is borne of legitimate fear. Parents raising children who are healthy will tell you the story of momentarily losing sight of their children in the playground or at the mall and that ten seconds of cold fear they felt until their child was found. That is their singular experience and for that they are blessed more than they will ever know. That is a fear that parents raising children like Quincy face all the time. It is something we live with…each of us in our own way. We find a way to function and to bury the fear to appear normal, but it is always there, popping up in nightmares or on mornings when you open the paper and read about another family losing their child.
If a family like the Travolta’s can lose their child, a family who can afford to provide every safety measure they can, then we know it is more about Fate and not about effort. Normal families like mine must sacrifice sleep, work, vacations, and a million other things too depressing to list to provide the kind of care Quincy needs. And, in the end, we know that it will be up to Fate to decide how long we get to love her, learn from her and share her with the world. I hope she beats the odds and outlives me…but I will live every single day knowing it is a gift that I am eternally thankful for. Today I whisper a prayer for the Travolta’s and all other families out there who must face their reality far sooner than any parent should.
Battling constipation with the physically and developmentally disabled
Okay, occasionally I am going to write about things that I know Quincy would rather I not share with the world. I have to apologize in advance to her for this. However, some of these sensitive issues make up the biggest challenges that parents and caregivers face in their daily care of the children. Constipation is a very real and very persistent issue. It has been the topic of numerous conversations amongst my friends who also have children similar to Quincy.
Children like Quincy do very little weight bearing activity and because they do not move their bodies as much, or in the same way, as other kids their systems suffer. The cocktail of medications they take can make this even worse. For Quincy we do several things on a daily basis to combat constipation. First, we try to always feed her meals that are high in fiber. I also use Miralax daily in her water. This product seems to be easiest to manage and isn’t fast-acting. Through trial and error we have learned what dosage to use to keep her regular without having any surprises. Finally, we will often give her an evening snack of a Pediasure with fiber to keep her regular and help with her other nutritional needs.
Even with all our efforts, sometimes she just gets backed up. I have no idea why this occurs. We are religious about being consistent with our efforts. And still, sometimes it just doesn’t work. We keep daily records on Q, to make sure we keep track of her meds and other important issues, so we know when it’s been a few days. At this point there isn’t much left to do but the ever-dreaded enema. They work. It is always a last-ditch option but there are times when there is simply no other option. Impacted bowels can be incredibly painful for our children and are a lot more miserable than an enema. So, keep a box or two of Fleets in your medicine cabinet. It’s not expensive and it is effective. Fighting the battle with constipation is worthwhile…Quincy sleeps better, eats better and feels better when her system is working properly.
Feeding a child with a limited ability to chew
Quincy has an excellent swallow reflex which we’ve been told is rather unusual for a child as disabled as ours. What it means is that she does not have to be tube-fed. The use of a G-tube for feeding comes with complications and it’s nice to not include those in her already complicated life. However, Quincy doesn’t chew or use her teeth much…when she is given food she simply tastes it and if she likes it she swallows. If she doesn’t she just leaves in in her mouth, mouth open, until it falls out. Then she will clamp her mouth shut and refuse any more bites. Luckily she is not a picky eater. She appreciates flavor and variety…our only challenge is to find foods that are soft-solids that she can swallow without choking. She is able to eat almost any pasta dish, especially if it has a heavy sauce. She can eat casseroles and soft Mexican food, like enchiladas (one of her all-time favorites). She eats oatmeal for breakfast (our favorite is Kirkland organic instant) and I pack a Stouffers frozen meal, like meatloaf with gravy or mac-n-cheese, for her school lunches. We have found that finding food she will eat isn’t terribly difficult. But the issue of feeding her can be. If she is having seizure complications or medication interactions she seems to lose her appetite. It’s quite a challenge to put calories into a child who has no desire to eat. It’s times like these that, when all else fails, we can always resort to the occasional Pediasure. Pediasure is great for the calories and nutritional content but also for the added fiber. Constipation is a constant battle and any time we can add fiber to her meals to keep her regular naturally the better. Quincy drinks water…that is her preference. We must squirt little sips into her mouth from a water bottle. It’s a slow process and requires a lot of attention and patience during the course of a day to make sure she gets all the hydration she needs. Dehydration can lead to issues with her medications and also complicates the constipation issue further so it’s incredibly important to be sure she gets plenty of water every day. What is great about Quincy is that she generally loves good food with lots of flavor. She is very appreciative when I make the effort to make a big, home cooked meal. Thanksgiving is one of those times because almost everything we make, from the main dish to dessert, is something she will enjoy. It really is much more fun to cook for Q than my other children…she complains a lot less and generally eats a lot more. She is the absolute perfect big-sister role model for them!
The challenge of seizure control
Controlling seizures is one of the most difficult, complicated hurdles we face with Quincy. There is no magic formula…it is a dynamic, ever-changing situation. There seems to be little rhyme or reason as to why she will have excellent control for stretches of time and then it all just goes to Hell. There are some factors that are obvious, like whether or not she is fighting an illness or if she has had a tremendous period of growth and simply needs a higher dosage than before. But, for those simple factors there is a multitude of factors that cannot be measured. For one, Quincy takes a cocktail of seizure medications. So you have to try to figure out which one might need to be increased. Also, you need to consider how do the meds work on their own and how do they work in combination with the others? And then we walk a fine line between wanting to keep her meds at a level that will control seizures but not so high as to have her be sleepy and drugged-out. Some of her meds can’t be increased to a higher dosage without being toxic so if they are no longer effective then we must go through a very extended process of weaning her off while slowly bringing on-board a new medication that may or may not work. I think her pediatric neurologist once referred to seizure control as voodoo and he couldn’t have been more correct. Quincy has been on almost every seizure med out there and some that aren’t even out there but that we’ve had to purchase from other countries. I mention this because up until a few weeks ago Quincy was having a great stretch of seizure control. When she has these stretches she is alert, active and attentive. But then we lost it and the seizures returned. They wipe her out physically and then her struggles begin. So today we begin a dosage increase with one of her new meds and hope that it will do the job, that it won’t over-medicate her, that she won’t suffer side effects and that our voodoo science will produce the magic formula that gives her the relief that she needs. If not, we will tweak the formula another way…always striving to unlock Quincy from the seizures that control her so she can have a bright, clear mind and a healthy, happy life.
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National Vaccine Information Center (NVIC)
