What would the process of giving gene therapy entail?
Prior to the initiation of gene therapy, we will carry a few tests to help us decide if the gene therapy is suitable for your child. Once these results are normal, the gene therapy treatment will be ordered
The gene therapy should arrive within 12-14 working days
One day before the infusion, your child will start steroids
On the day of the infusion your child will be admitted to the daycare
The infusion takes one hour
After the gene therapy, the child will be admitted to the ward for 24 hours observation or to stay at least for 4 hours after the infusion if you prefer to go home
What are the possible side effects of gene therapy?
First 3 days: Fever and vomiting
Very common: increase in Liver enzymes, decrease in red blood cells and platelet counts, abnormal clotting results
Rare: Some reports that the gene therapy affects the heart and the kidneys
The use of steroids is mainly to reduce those side effects
What is the short-term care after gene therapy?
Your child will be seen weekly for follow up appointments in our neurology outpatient department where we will be conducting blood tests and monitoring their results.
Blood tests done include Liver function tests, Renal function tests, Full blood count, Cardiac enzymes and clotting profile.
These tests will be carried out regularly over a period of at least three months.
The dose of steroids will be tapered according to the blood results
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