Harry McIntyre-Gay
DOB 2nd Sept 2008
NHS number: 647 729 3137
ST Peter’s Hospital number: 1388354
GOSH Hospital number PX314932
Harry has EGID (Eosinophilic Gastro Intestinal Disorder) which is an inflammatory bowel disease. This means that he has multiple allergies and intolerances which give him painful and damaging symptoms in his esophagus, duodenum (area of intestine shortly ‘after’ the stomach) and colon. He also has gut and bowel symptoms that relate to damage already done which are not directly triggered by foods or drinks consumed.
Be aware that he reacts to injected medicines also. The first time is often okay, but second and subsequent times get progressively worse as his gut decides to reject it. He must be given life-saving intravenous medicines if there’s no alternative, but consider very carefully what is injected into him because the inflammation can be excruciatingly painful and last for several months.
Harry also has Ehlers-Danlos Type III Hypermobility which means that he is double jointed in every joint in his body and dislocates joints very easily. He suffers from joint pain, particularly when walking.
Please note, to date, Harry has had all the required NHS vaccinations in the program at St Peter’s Hospital under Dr Haddad’s guidance and supervision.
Harry consultant at St Peter’s Hospital, in Surrey is Dr Diab Haddad.
Contact:
Diab.Haddad@asph.nhs.uk (will reply quickly if you mention Harry’s name)
St Peter’s Hospital
Guildford Road,
Chertsey,
Surrey,
KT16 0PZ
Tel:
01932 722477
Secretary: Sheryl Gauci 01932 723293
sheryl.gauci@asph.nhs.uk
Harry’s consultant at Great Ormond Street Hospital is Dr Neil Shah
Contact:
Neil.Shah@hcaconsultant.co.uk (difficult to contact via this means)
Rubi Begum (she will be able to contact him)
Secretary to Dr Neil Shah
Consultant Paediatric Gastroenterologist
Tel: +44 (0) 7554 428 969
Fax: +44 (0) 20 76822161
Harry’s Dietician has known him since he was 12months old and knows him extremely well. If help is ever needed to source his milk, she is the person to contact as she has a direct relationship with Nutricia who manufacture and supply his formula.
Dr. Rosan Meyer
Specialist Paediatric Dietitian, RD
B.Dietetics, Post Grad Dipl Dietetics, M. Nutrition, PhD
Registration: HPC UK DT6798, BDA 6097
Tel: +44 (0)7734 995 508
Fax: +44 (0)207 904 5782
84 Harley Street, London W1G 7HW
Email: info@rosan-paediatricdietitian.com
Web: www.rosan-paediatricdietitian.com
Harry’s GP is Dr . Jakubowski Surgery no: 01932 828200 patient id: 45050
Medicine schedule: All are given via oral syringes
Azathioprine 50mg/5ml oral suspension – 3.25ml given once a day after or with food. Usually given in the morning.
Prednisolone 5mg soluble tablets- these are given often but in varying amounts- you must check the dosage and if he is currently on this with Dr Haddad as he will know
Azithromycin Suspension 200mg/6ml 3.25 ml given on Mondays Wednesdays and Fridays only, in the morning.
Cetirizine Hydrochloride sugar free oral solution 5mg/5ml One 5ml spoonful twice a day- one usually in the morning and at 7pm (summer times only)
Zinc Sulphate Monohydrate Effervescent Tablets sugar free 125mg 1 tablet per day dissolved in approx. 4ml water and given via oral syringe
Rantitidine s/f syrup 75mg/5ml 5ml twice a day- one in the morning and one at 7pm
Omeprazole – during periods of severe reflux pain – 20mg at night
Antibiotics: wherever possible Azithromycin should be given. This is because of the negative impact that most antibiotics have on the gut.
Harry suffers with air born allergies in the summer months and also uses Piriton – the normal dosage for his age. In addition he uses Flucticasone Furoate Nasal Spray Suspension 27.5 micrograms/spray 1 puff in each nostril. Salbutamol Inhaler 100micrograms/puff & Clenil Modulite 100micrograms/puff
He can be given the following meds on a discretionary basis, for pain:
Calpol – standard dose for age
Harry can be given a heated pad on his tummy to relieve pain. Because of the format that we give this at home, he refers to it as ‘polar bear’ or ‘elephant’ so this is what he’s asking for, if he uses these terms.
If Harry asks for ‘Bunny night night’ he is referring to his comforter- a muslin cloth with a rabbit sewn on it.
If Harry asks for ‘milk’ he is asking for Neocate LCP, but he is badly allergic to the new formulation with the image of a bottle on the tin. We currently receive the old formulation direct from Nutricia (image of a crib on the tin) and can bring it for him to drink. Do not give the new formulation to him or any versions available readily form pharmacies as this is not the correct blend for him.
Please bear in mind that Harry is quite private and controlled and in many contexts conceals or denies the pain he feels. It’s a good idea to ask obliquely “Where is it hurting?” rather than “Does it hurt?” and if he denies feeling pain, ask him if he would like polar bear warming up (his wheatie bag).
Harry is totally potty trained. If his stomach is flaring, he will begin to wet himself and also soil himself as the pain intensifies. This is the only time he does so and is a clear indication that his gut is suffering. Prednisolone is the usual treatment for this.
Harry Drinks:
Neocate LCP (old formulation - image of crib on tin) as requested throughout the day and night, warmed up in a cup with a lid on. NB-He will not drink it in a cup without a lid as the smell is overwhelming and will prevent him from drinking it. He drinks a cup almost every night around 4am as he cannot drink large quantities during the day so usually wants more during the night. He normally has around 150-200ml per cup. Do not substitute with other versions of Neocate or with other elemental formulae.
Tap water
Do not give squashes, cordials or juices.
Harry can only eat the following:
Potato!
Chips- nothing on them at all no salt or vinegar or ketchup. Can cope with them cooked in oil. Loves chip shop chips.
He will eat baked potato completely plain with no butter or anything on.
Boiled new potatoes
Micro chips
Crisps- unflavoured only. He is okay with lightly salted kettle chips or Tyrrell’s naked or lightly salted.
He can now also have some popcorn- Tyrrells Poshcorn sweet & salty, Propercorn Sweet & Salty and M&S sweet & salty popcorn.
He can also have a drumstick lolly pop or a chuppa chup lolly pop or a few Harribo jelly only sweets (Starmix)
Do not be tempted to give him butter on his potato or in mashed potato. His diet really is this limited. His symptoms if you move away from this include, passing streams of mucuous, blood, completely liquid stools, constipation, pain, sweating, rashes on face and body, blistered skin on his bottom with peeling skin.
ICE information:
Mum – Paula McIntyre-Gay – m: 07793 732188 – h:01932 854694 – w: 01932 839400
paulamcintyre@hotmail.com pmcintyre@stgeorgesweybridge.com
Dad – Chris Gay – m:07802 483129 – h:01932 854692
ICE information if we cannot be contacted or are incapacited – these three people can drive, have or can get keys to our house for meds, polar bear, elephant, cups etc. Dave(mum’s partner) or Maria (au pair) can come and collect Harry, keep him company in hospital, bring things from our house for him etc.
Mum’s Partner- David Pharo – david.pharo@aonhewitt.com 07974 395880
Maria –au pair – 07563 833494