Constipation
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.
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.
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National Vaccine Information Center (NVIC)
