It is likely that there will be a number of various medical professionals involved with the care of your child and there will be lots of documents to keep tidy.
These could include:
Children’s Community Nurse
A nurse from your local hospital will be assigned to your child to visit you at home and help with any concerns you have. If your child has a naso-gastric tube or a mini button for feeds and medication, then your Community nurse is able to change/replace these.
Specialist Teacher Advisory
Will use fun visual activities to for Visually Impaired monitor tracking skills and responses to visual stimuli.
- Paediatrician (for development)
- Nephrologist (kidneys)
- Endocrinologist thyroid function
- Metabolic disease consultant
They will work alongside the consultant to ensure your child receives all adequate nutrition to vitamins and minerals
To help with regard to gastroesophageal reflux
Can help your child develop core muscle tone and balance and all seating needs
Deals with hand splits, specialist footwear etc.
If there are concerns with the development of bone structure in the hands, feet and legs
Can help your child develop muscle tone
Provides educational toys to help with development and learning before starting school. Service is provided by your Local Authority.
Speech and Language Therapist
Can help with speech and language development as well as feeding issues
Deals with coliosis, which is a curvature of the spine, can be an area of concern with CDG patients
Dr Stephanie Grunewald, Consultant in Metabolic Medicine at Great Ormond Street Hospital sees a lot of CDG patients in the UK. If you feel her input would be helpful, then she would need to receive a referral from your hospital consultant.
How should I organise my child’s medical notes?
- Lever arch files are an excellent way to store hospital medical notes and clinic letters as well as any reports from therapists.
- If your child is under care of more than one hospital, then use one lever arch file per hospital.
- Write the contact names and phone numbers of everyone involved in your child’s care inside the front cover or on a piece of paper in the front of the file. Also include your child’s hospital number. This saves searching through the medical reports for contact numbers.
- If more than one person is involved in your child’s care at the same hospital, then use dividers to separate their reports and/ or clinic letters.
- Include extra spare dividers in case your child is admitted to hospital. It is useful to be able to then file any admissions forms, discharge forms and, if an operation is required, medical consent forms.
- On the spine of the file write your child’s name, hospital name and child’s hospital number. If your child’s care is shared over more than one hospital, it just makes it easier to grab the correct file.
- It is a good idea to have a home-to-hospital file that you keep with your child, should they need to be admitted to hospital. One of those A4 plastic files are great for this task. It is helpful to include two copies of your child’s medicine schedule and list of medicine. This way you have one to refer to and another to hand over to nursing team. If your child has a dietician involved; particularly if s/he has a specialised formula feed, include the dietician’s recipe for making up the feed. Include the amount of milk per bolus feed. If your child is on a feeding pump, include the rate ( e.g. 85ml/hr) and the total volume (e.g, 540ml) In our experience, the nurses have been grateful to have sight of what medication is used, the dosage, and when it needs to be given, as well as information for any formula feeds that need to be made up.
- Also keep a copy of the latest clinic letter from the consultant.
- If your child has a care plan with your GP, include a copy of this too.
- Keep a notebook and pen with the file too. This way, you are all ready to jot anything down when you are talking to the hospital, either face to face or on the phone. It is not easy to remember everything and it helps to be able to refer back to conversations and what has been discussed.
- If you have found any articles on the internet relating to CDG that you found helpful, print them off and include in your home-to –hospital file.