Gastro Parents Study Day at GOSH

Hi,

for those families unable to make the gastro parents network study day on september 10th, I've had a look at my notes and tried to decifer them..... here is a summary of what happened on the day (they may not be fully accurate as it was a few weeks ago now and my notes are a bit vague!) and i've just listed them in point form.

Some of these points were made in response to individuals questions rather than just in the main body of the doctors talks. I should also point out that these points won't be relevant to all gut issues - i only noted down things that were relevent to my family. 

Please don't rely on the accuracy - confirm points with your consultant or doctor.

General Gut Issues: 

- There are similarities between the nervous system in the gut and in the brain so it's possible that things like behaviour are affected too in children with gut problems.  There is also a possible autonomic component that is being looked in to.

- Sensory and Pain Issues: Children can find it harder to process their pain appropriately when its being going on for many years and sometimes they can react to lower pain levels.

- Allergic Shiners: these dark circles under the eyes haven't been fully explained yet but possible explanations could include: secondary to rubbing of their eyes if they are irritated, a general sign of being unwell or related to autonomic dysfunction e.g blood vessils affected.

- The doctors clarified that allergies and intolerances are different. allergies are an immune system repsonse. Intolerance related more to pharmacological reactions. There are different allergy types - Type 4 is delayed and involves cells and symptoms can develop slowly.

- They talked about Non-IGE mediated food allergies (in relation to EGID) and how eosinophils move from the blood to gut tissues and can cause reactions there.  They also said EGID can be seasonal and some children may be more affected over the pollen season.

- Constipation can be a problem and is usually defined as less than 2 motions a week as well as 1 of 5 other symptoms e.g pain passing stools or straining. The stools are usually darker in colour. The causes vary but can include myopathy (disease of the muscles) and neuropathy (disease of the nerves). Diarrhoea can be caused by congenital problems as well as acquired problems e.g allergy.

Eosinophillic Gastrointestinal Disorder

- EGID is increasing (400% increase in last 10 years)and has wide range of symptoms. Still not acknowledged by all medical professionals.

-A parent asked about the link between EGID and children collapsing - the answer was that some children may have hypoglacaemia, although this isn't a formally recognised symptom of EGID.

- Muscles and nerves can be affected as well as sinuses, skin and lungs.

- Eosinophils release 5 toxins and this can cause inflammation.

- Treatment: Nalcrom can be good at stopping 'mast cells' responding.  Ketotifen and cetirizine can help the histamine. Steroids often used.

- EE is  now being called EOE.

- 2002-2009 a study looked at 500 children and found a 57.4% recovery rate. however, recovery meant they no longer need to see a GI consultant and not that they were completely symptom free.

- Still not known if the eosinophils are the bad guys or the good guys (repairing or causing the damage?)

- early onset associated with milk, egg, soya and later onset associated with wheat and fish.

- Three groups of patients: Food Sensitive group (mild, only need diet changes), Food Partial Sensitive Group (moderate, need diet changes and some medicines), Food Insensitive Group (Severe and need a lot of medication)

- skin prick and patch testing not useful in EGID.

- 'tolerising' means introducing small amounts of a food to encourage tolerance. some say that some foods can be tolerated when baked.

- azithromycin can help - not just an antibiotic, it can stabilise too!

- constipation can be part of motility problems.

- the magic number in eosinophil biopsies is 15.  If eosinophil count is low, its possible they could be in the tissues instead.

- boys are more affected (70% are males)and its thought that the male gene is the culprit in EOE. ongoing twin studies suggest genetics are a risk factor. there has been no 'older mother' effect found. Most sufferers are male, caucasion, have high rate of atropy.......

- future children could be affected, in fact after having a child with EGID, the next child could have it worse.

- steroids and special diets can reverse scarring!

- 2/3rds also have 1 of these: rhinitis, eczema, asthma, environmental allergies.

Reflux: 

- relfux is a symptom not a diagnosis. Primary reflux can be due to a lax sphincter. Secondary reflux can be related to inflammatory or dysmotility.

- feeding problems are commonly associated.

- other problems with GERD can include: infections, sinusitis, wheezing, apnea, cough, sore throat, dental erosions.

- Impedance tests can help look for non-acid reflux.

Coping Strategies at Home for children in pain: 

- distraction ideas e.g TV, cooking, computing, blowing bubbles, computer games, where's wally puzzles, chat about favourite activities.

- learn a new skill so that they child knwos they are good at something.

- you could buy the book 'Whose poo?'

- you could try making your own picture book of your childs experiences, and look through it together.

- Try progressive muscle relaxation e.g pretend to be a soldier then relax into being a tree flopping in the wind.

- try using imagery - think of a special place e.g a beach to escape to away from the pain.

- There are places locally to get help - you could try: 1) through your local hospital 2) CAMHS 3) through your consultant

- extra help and support may be needed during procedures, in early childhood, during school transition times, when reaching adolescence and when transitioning to the adult service.

Schools:

- for help you could contact your education welfare office. They also help if children can't attend school.

- persistent absence is when a child misses 20% of school. More than 3 absences in a school term will trigger a register check.  A consultant, not a GP, is needed to say your child is 'unfit for school' and you need this to trigger home education.

- a child has the right to 'reasonable adjustments' in school e.g support staff, toiletting, timetable changes.  IEP's may help and gather evidence if you feel your child needs a SEN.

- residential trips - offer to be a volunteer so your child can go.

- for more info: www.direct.gov.uk, www.education.gov.uk, www.ace-ed.org.uk

The Diet Kitchen:

- in September a product called Neocate Spoon is coming out - a weaning food.

- 50% of gastro allergic kids with cows milk protein allergy also have a soya allergy.

- rice milk isn't recommended for children under 4.5 years as their main drink. Cooking with it is fine.

- Feeding problems are common in gut disorder population - 16% of normal population are tricky feeders but its' 40% in the gut population.

- when introducing foods you can 'overcook' them to kill as much protein as possible. can also start with 'lip swipes' only. Some foods may only be tolerated once a week and not all the time,. Get advice on food reintroduction.

I hope this helps!

Thanks

Kitty

ShareThis