The symptoms, visits, transfusions and medicines of thalassemia may feel overwhelming. Our thalassemia program gives kids with thalassemia the best and safest care. We offer comfort for your family at every step of their journey.
Our care team coordinates all your needs. Our one-stop shop gives your family access to resources and expertise — all in one visit. Each child in our clinic has an annual visit with all our experts.
Our care team includes:
- Hematologists: A blood disease doctor is on call 24 hours a day, seven days a week for kids with thalassemia who need urgent medical attention. Our dedicated doctor is a thalassemia expert.
- Endocrinologist: Our program expert in the growth and development of children with thalassemia.
- Heart care: Anemia and excess iron can stress the heart. We offer expert heart care for children with thalassemia.
- Nutrition: Thalassemia can cause nutritional deficiencies. Our dedicated dietitian can provide resources or suggest diet changes.
- Audiology: Iron chelation can raise the risk of hearing loss. Our audiologist is an expert in the effects of iron chelation and thalassemia. They provide hearing screening, suggestions and care plans for kids on iron chelation.
- Thalassemia nurses: Our pediatric nurse practitioners see kids in our day hospital. Our nurse coordinators manage and plan care for these kids.
- Neuropsychometrist: An expert in how thalassemia affects the brain. We test and screen kids and work with their schools.
- Psychologist: Supports our kids and families. They offer behavior management, psychological screening and provide ongoing counseling. They also help with drug-free pain relief options.
- Social worker: Helps our families access the resources and support they need.
- Genetic counselor: Helps families understand the genetics of sickle cell disease and what it means for their family. They also discuss what a diagnosis means for eventual family planning.
- Pharmacist: Our pharmacist assists in ensuring our patients are on the correct medications and take the medications safely and effectively.
Our front desk staff will check you in when you arrive at the clinic. Bring your insurance card with you to each visit.
A clinic visit may include:
- Vital signs: Checking temperature, heart rate, breathing, blood pressure, height and weight
- Blood tests: Your child may get their blood taken in the clinic lab room. Or they may need to go to an outpatient lab.
- Medicine review: Our staff will review your child’s medicines. It is easy to forget the names of all these medicines. Please bring your child's medicines from home so we can review them. Bring vitamins or supplements, too.
- Visit with team members: A care team member will get your child's height, weight and vital signs. A nurse clinician, nurse practitioner or doctor will come in to discuss how your child has been feeling and their care plan.
The thalassemia clinic provides any care your child needs in between visits. Our care team can set up any necessary visits, labs, tests and medicine refills to ensure your child gets the best care.
If your child needs blood transfusions or IV medicines, we will see them in the Northwestern Mutual Day Hospital. Our experts will tailor a care plan of transfusions and medicines every two to four weeks.
Day hospital visits will also include getting vital signs, placing an IV and getting blood samples. We will watch your child throughout their transfusion to ensure it goes well.
The day hospital has a large community play area with:
- A craft table
- A big screen TV
- Video game consoles for patients and families
You may see a child life specialist. These experts know how to talk with patients of different ages. They have ways to help prepare your child for any procedures, offer distraction and coping ideas and plenty of fun things to do to stay busy.
A recreational therapist can offer activities to support body, mind, social and emotional needs. They also offer fun ways to stay busy.
Our thalassemia team also partners with neighboring programs. We provide second opinions and supportive care for kids and young adults with thalassemia.
