Hunter Patients Community

Important Safety Information
Product Information

Caregiver Corner: Tapping Into Resources

Kris Kelly, of Oregon

About four years after my son Devon was diagnosed with Hunter syndrome I discovered an incredible resource: Many states and counties have funding for respite care, travel expenses, and home improvements, especially if you are insured under state medicaid.

Before I learned this, I had been making many, many trips from the coast of Oregon to Portland (80 miles round trip) and at this time was a working single parent. I had to take many days off of work, I woke up at 5am to make it to 8am appointments and these appointments may have only lasted 15 minutes or up to three hours.

I took Devon to see our geneticist and ENT, to speech therapy, physical therapy, CT scans, pediatric dentist, etc... Devon also had a county caseworker from disability services. Occasionally they made home visits to ask what we needed and give us suggestions for other resources.

Years after I had been making these trips, I heard from a friend that the same county agency all along would have been reimbursing me for my travel costs to these appointments. Some covered expenses include the cost of gas, a hotel for early morning appointments, and lunches. I was glad to learn about the information when I did, but I wish that I had known sooner.

I also learned about another county resource that would pay for home improvements. At the time I had a house with a long staircase leading to the front door. It was really steep and there was no railing. The fund provided the money needed for a new staircase with extra wide, lower riser steps and handrails, creating a much safer way into and out of the house for our family.

Then, I found out about respite care. We discovered that the county had funding for it as well as the state. I was able to have my father provide respite care for Devon, giving me a chance to have the breaks I needed to restore my energy. This was a huge help to me.

It is important for us as parents of children with special needs to tap into every resource possible. We need to ask questions and find out what's available. We need to take time out for ourselves, our mates, and our other children. I think of it as refueling. Doing what I need to do to restore my energy source by having a "respite" from the pressure and challenge of dealing with a special needs child. I wanted to share this with you so that you know what to ask for and where to look for the help you need and not have to wait years to find it. I hope my experience helps you and your family.

The opinions expressed in this article do not necessarily represent those of Shire Human Genetic Therapies, Inc.

Indication
ELAPRASE® (idursulfase) is indicated for patients with Hunter syndrome (Mucopolysaccharidosis II, MPS II). ELAPRASE has been shown to improve walking capacity in these patients.


Important Safety Information


Some patients in the clinical trials experienced life-threatening immediate allergic reactions to ELAPRASE (idursulfase) infusion. Patients who have experienced severe allergic reactions may experience another allergic reaction approximately 24 hours after the initial reaction and may require prolonged observation. Patients with compromised respiratory function or acute respiratory disease may have a higher risk of life-threatening reactions to ELAPRASE infusion and require additional monitoring.


Life-threatening allergic reactions have been seen in some patients during ELAPRASE infusions. Reactions included difficulty breathing, lack of oxygen, seizure or loss of consciousness, hives, and/or swelling of the throat or tongue. Patients received an antihistamine to reverse the allergic reaction or corticosteroid to decrease inflammation prior to or during later infusions. ELAPRASE was given more slowly or was stopped early if patients had serious reactions. With these measures, no patients stopped treatment permanently due to an infusion reaction.


Because of the potential for life-threatening complications, the ELAPRASE infusion may have to be delayed for patients who have respiratory illness and/or fever.


The most common side effects that required intervention had to do with infusions. These included headache, fever, rash, hives, itching and increased blood pressure. These side effects decreased over time with continued ELAPRASE treatment.


In clinical trials, patients given ELAPRASE once a week for 52 weeks had the following side effects at a rate greater than placebo and at least 10%. Approximately:


About half of the patients in clinical studies produced antibodies to treatment with ELAPRASE and these patients had an increase in infusion reactions. The presence of antibodies on the effectiveness of ELAPRASE is unknown.

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