Neuro-immunotherapy checklist
Treatment
- Why is neuro-immunotherapy the right treatment option for my child? What are its potential benefits?
- How did you confirm the diagnosis of neuroinflammation? How conclusive were the results?
- Is this part of a clinical trial or an approved therapy?
- Does this treatment mean my child鈥檚 immune system will be compromised?
- What is involved in a trial of treatments?
- Why might this be needed?
- How many does this imply?
- Do the different trials have potential side effects? Short-term and long-term?
- How long might it take before we find the right one?
- What are the potential side-effects?
- What are the potential costs?
- How effective is this treatment? What are the chances it helps/does nothing? If it doesn鈥檛 help, what happens then?
- Has the disease progressed far, or have you managed to capture it early? How much impact does that have on the treatment?
- Does this treatment broadly impact the immune system or is it targeted in anyway?
- Does this prevent using any other forms of treatment or clinical trials?
- Is there anything that can be done in the meantime to address any of the side effects being experienced?
- How much evidence supports the decision to start neuro-immunotherapy? Can you provide me with the literature?
Procedure
- How is the treatment given to my child?
- What drug is it and how does it work?
- Are there any risks with the procedure?
- How long will the procedure last for?
- Will my child have to stay in hospital?
Medical care and recovery
- How frequent and for how long are follow-ups necessary?
- What should I monitor at home?
- What do I do if I recognise side effects?
- What are the chances of relapse/re-appearing symptoms?
- Are there things I should be mindful of in recovery, given the immune system may be compromised?
- Is there any impact to my child鈥檚 immunisation schedule?
