Depending on your child's symptoms and number of trigger foods you may be required to attend hospital on a regular basis especially at first. Hospital visits can be needed for various reasons; diagnosis, general check up, dietitian assessment or follow up. Tests such as blood, skin prick tests and gastroscopy and/ or colonoscopy (upper/ lower scopes). Or hospital food trials and oral food challenges for known trigger foods. Below we hope to summarise some of the important aspects of these visits and how best to prepare for both them and any unexpected hospital stays your child might have.
General paediatric, allergy or gastroenterology appointments:
It is worth calling the hospital before your appointment to check if skin prick tests are going to be performed. If they are, you may need to check when antihistamine medications (if currently prescribed) need to be stopped and if they require you to bring any samples of more unusual foods your child may have reacted to. Also check that a consultant will be present. Some allergy clinics are nurse only.
Consider taking the copies of the following:
A detailed food diary, showing when foods were given and what/ when reactions occurred.
Any photographs or videos of reactions or symptoms (eczema/ rashes/ mucus/bloody nappies)
A brief list of foods that have caused problems and the symptoms that occurred plus a list of any foods that are well tolerated for the doctor to keep
A clinical history timeline for your doctor to keep, see here for example
Some or all of the FPIES information on our info for HCP's page can be left with the consultant if he/she is not familiar with FPIES.
If they concede they are not familiar with FPIES then do not be embarrassed to ask if they can refer you onto a tertiary referral centre (usually larger city children's hospitals) for more help.
Some children have a variety of symptoms and the allergy consultant may wish for your child to be seen by a gastroenterologist too. The above information should be taken to that appointment also.
Q. what will happen at the consultation?
A. This will vary greatly between clinics but usually a full history will be taken then the doctor will examine your child. Further tests may be done such as a blood sample to test for general health, IgE allergies and maybe Coeliac Disease. Some clinics also perform skin prick tests, where a sample of the food is placed on the skin and a small prick made through it, it is not painful and only takes 10 or 15 minutes to get results.
Your doctor may want to refer your child to a gastroenterologist and will most likely organise a dietitians appointment for you.
Q. What should we ask the consultant?
A. Again this will depend on whether the consultant is familiar with FPIES or not. Example questions would be:
Which part of the diagnostic criteria for FPIES does my child not meet? (diagnosis of FPIES can usually be given if there is profuse vomiting and lethargy 1-6 hours after the ingestion of a particular food on more than one occasion. There does not need to be diarrhoea or shock to get a diagnosis)
If you don't think it's FPIES what could cause these symptoms?
If you are not familiar with FPIES, is it possible to be referred to another consultant with experience of the condition?
Which foods should we avoid for now?
Which foods would be best to start with?
Do food trials need to be in hospital?
How much and how often should we give the food to be trialed?
How long does a food trial need to be before a food can be deemed safe?
When and how should we re-try foods that have caused problems?
What should we do if our child has another reaction?
How can we contact you/ your team if we have any problems?
Can you write us an Action plan/ A&E letter?
How long will it take to see a dietitian? If you don't have already you can request a prescription for formula milk such as neocate or puramino and possibly a special weaning food known as neocate spoon.
"Food! We are lucky not to be in very much and our hospital isn't far away but eating became an issue so quickly. We were able to have a family member bring us something safe and half decent to eat"
"Safe food for little one. Food for yourself thats actually edible! Things that are quick and easy to prepare. Our hospitals don't provide food for mum/dad only breastfeeding mums. The kitchens generally only have a microwave, fridge and facilities to boil water. Make sure you have enough nappies, wipes and formula, including bottles. Phone charger. Little ones comforter and blanket. I even take his pillow. Plenty of vests and if you can footless baby grows for easy access for obs. Clean clothes for you. Wash stuff if you're staying long enough including towels if sensitive to detergents. A sling or carrier."
"Our one thing we can't forget is the iPad. Pre loaded with peppa pig. Best £9.99 I ever spent to keep him occupied. Especially whilst on IV gut rest. As we are modular we need to bring all his powders with us plus his own brand medicines that he's safe with. I always pack a bag for me with wash things, pjs, clean underwear and change of clothes. Plus a snack for me so I don't have to leave him. And depending if the ward allows I bring his buggy so if we are both going stir crazy and he's well enough we can go for a walk around the hospital"
"Comfort blanket/toy is a must!"
"Flip flops, especially for in the shower"
"Do some play therapy at home beforehand. For scopes we made a mask and played the 'go to sleep game' with teddies, daddy and then the girls and for their actual scopes they weren't scared of the mask and took such big breathes that they were asleep after about the breathes! We also played at taking blood including the magic cream using moisturiser and clingfilm.
It made a huge difference. And take a comfy pillow and some decent strong coffee for yourself (currently in hospital with M and relying heavily on both!)"
"Safe brand of painkiller and other meds for your child."
"For appointments: Red book, write a list of questions you would like answered, write down anything important that is said. Take someone else with you to watch little one if you can."
"Bag of toys and snacksfor the waiting room. For afternoon appointments take a dinner incase the clinic over runs or you're waiting at pharmacy for a long time. Tablet with programs loaded or an extra person to entertain your child so that you can talk to the doctor."
" I always keep a bag of food, toothbrush or mouthwash, magazine, change of clothes and other essentials in the car that way if we have an emergency hospital visit we don't have to think about it. It even came handy when I got rushed in for my hernia that ruptured, it got me through the first 24 hours"
"I keep a document filed on the computer with a detailed history including dates and reactions as I can get flustered or forgetful during appointments. I print a recent copy every time I see someone (they have often kept it!) so I can keep timelines ordered and accurate."
"For appointments I always bring someone with me who once C has been checked over can then take him to play room so I can talk to doctor properly. Have a list of questions and things I want to discuss as my memory isn't great x"
"Write everything down symptoms, reactions etc. I always find it best to bullet point/document everything in a timeline so that you don't find yourself rambling during an appointment and you don't forget anything. Video and take pictures of things as they happen so you have them as back up. If possible, bring another person to appointments with you so they can look after your child whilst you speak to the doctor"
"I bring her favourite toys, I get 2 piece pj's it's easier for obs and for checking for a rash etc
Appointments bring a bag load of patience, I try time it that she is due a feed around the appointment so I can keep her in her buggy. With food everywhere I panic.. A few handy toys. As well as above advice"