Your young man is now in high school and likely aiming for college. And while he still doesn’t have all the answers to life’s challenges (despite what he may believe), it’s in this period of time that responsibility for his life and well-being is slowly lifted from the shoulders of the parents and moved to him.
This is easier said than done, but keep in mind that the goal is for your young man to become independent as he enters adulthood. The more he bears these responsibilities, the easier the transition will be for everyone.
– Medical Responsibility
While the parents should still supervise their child’s medical treatment and care, it’s time to put him in charge of most of his medical care. This includes:
• Making appointments and talking with medical professionals;
• Calling his nurse or HTC when he is injured;
• Keeping an inventory of his medical supplies;
• Ordering his own supplies;
• Unpacking and organizing those supplies;
• Making him responsible for filling out his treatment logs.
At doctor’s offices and HTC visits, allow your young adult to speak for himself, and remind any staff members that they are to speak to him directly (as much as possible), and not just about him.
Go over questions with him before and after visits, and have him follow though with getting the information.
Subjects for discussion:
By following through with medical responsibilities and showing dependability in school (attendance, grades, etc.), your teenager will be showing you that he’s ready to take on other responsibilities typical of his age, including getting a driver’s license, driving, getting (and keeping) a job, and other such things.
In conjunction with all that, this is a good time to reinforce good habits like being on time, saving money, and being trustworthy.
– Life after High School
As parents, you should be involved with getting your teen to consider his future. Some things to consider:
• College or trade school;
• Scholarships that are available specifically for people with bleeding disorders;
• Career choices, specifically looking at jobs that won’t promote or create bleeds;
• Health insurance: through parents, a job, or other group plan.
– Health Insurance
Parents should be aware of how their children are being covered, what kinds of caps or limits will come up in the future, and what options are available (either through an employer’s insurance package or a government program). Keep your teen informed of all this information, as he will have to be responsible for his health care soon enough.
Contact your HTC if you need help understanding your coverage and options.
– Dating/partner in life
As your teen enters the “dating scene,” he may not want to be up front with his health condition right away. Talk with him about how and when might be appropriate to let others know, and be supportive if he has troubles.
It can be helpful to understanding the underlying genetics of his condition. More information on this can be found here, and you can contact your HTC for help as well.
Following are some common injuries or conditions to watch for at this age and into adulthood:
– Blood in the urine (hematuria)
It doesn’t take much blood to change the look of the urine, and chances are that nothing significant is going on. Drink more clear liquids and rest in bed to check for sure, and call your HTC if you are still concerned.
– Gastrointestinal bleeds
G.I. bleeds are mostly detected by noticing blood in the stool. Although not common at this age, it is important that your teen knows what to look for and alerts you to anything out of the ordinary, especially if it is accompanied by abdominal pain. It’s best to let your doctor or HTC rule out anything serious.
Bruises are just a part of your teen’s life. He bruises more easily than others. Sometimes you’ll know why he has them, and other times they’ll seem to just appear. The bruises may look nasty, but they’re really only a problem if they get bigger or cause pain. If you think one is growing, consider drawing a line around it with a marker to know for sure.
Applying an ice pack to a bruise can be the simplest treatment, and is often enough. But if there’s a lot of pain or he stops using the part of his body that is bruised, it’s best to call your HTC.
Nosebleeds happen to everyone at some time or another. They can come on in drier climates or as the weather changes. It’s best to try to prevent them in the first place. Try using saline nose spray and using a humidifier in the house, and make an effort to dissuade your teen from picking his nose.
If a nosebleed persists for an unusual amount of time, you can use Aminocaproic Acid (known by the brand name Amicar®) (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000450) to control the bleeding. An infusion of factor may be needed, possibly in conjunction with Amicar®. Your hematology team is the best source to turn toward.
– Head bumps
If your teen receives a blow to the head or a similar injury, he will need a factor infusion and head CT. Remind him that he needs to alert you to any such injuries, so you (or he) can call your hematology team for instructions as soon as possible after the injury.
– Mouth bleeds
Mouth bleeds can be very hard to control. Where other injuries call for pressure or ice to help, that’s not so possible when the bleeding is in the mouth.
Keep in mind that good dental hygiene — regular brushing and flossing — will keep the tissue in good shape and lessen the possibility of bleeds from dental problems.
You can use Aminocaproic Acid (known by the brand name Amicar®) (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000450) to control the bleeding. You can also try having your teen drink ice cold liquids. Depending on the severity of the bleed and the severity of your teen’s bleeding disorder, an infusion of factor may be needed, possibly in conjunction with Amicar®. Your hematology team is the best source of specific directions on how to treat mouth bleeds.
–– Dental Care: Orthodontia and Teeth Extractions
Your HTC should be helping in setting up a treatment plan for any dental work. This plan may include a dose of factor and Aminocaproic Acid to prevent bleeding.
A bleeding disorder does not rule out braces, if your teen needs them. The same treatment plan for general dental work should work, if bleeding occurs. Check with your HTC to be sure.
– Muscle bleeds
Muscle bleeds will appear as swollen and tight to touch, but likely won’t show the tell-tale bruises that other injuries might. The bleed is accompanied with significant pain, which may result in your teen refusing to use the limb involved.
Most muscle bleeds will require one or two infusions of factor to resolve them. It’s best to call your HTC whenever you detect a muscle bleed.
An ileopsoas bleed is one that affects the lower back, hip, or groin. While it can be fairly common, it is serious, as it causes significant pain in the affected area and surrounding areas.
This bleed needs aggressive treatment by a doctor, or the patient risks permanent nerve damage, so call your HTC immediately.
–– Calf and Forearm
Bleeds in the calf and forearm also need to be treated immediately and aggressively. They can lead to Compartment Syndrome (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002204), meaning that the nerves in the affected are compressed. This leads to significant and long-term pain.
Call your HTC immediately for help.
– Joint bleeds
Target joints, or joints that have been a common area of repeated bleeds, may have become a part of your teen’s life. After repeated bleeds to the same joint, the surrounding tissue begins to degenerate, creating arthritic pain in the joint. The problem is that the pain for arthritis and joint bleeds is very similar—adults often have trouble telling the two apart—but the treatment for each is opposite.
If the joint is used for 15-20 minutes and begins to feel better, it’s a good bet that’s arthritis pain. If not, it’s likely a joint bleed. Call your HTC with the symptoms and they can help formulate a plan of treatment.
Bleeds in non-target joints still need to be treated quickly. It’s common for teens to downplay the pain or try to “tough it out.” Keep reminding him about the important of treating things quickly and watch for changes in their movement or activity to tell you that something’s wrong.