Introduction - Kirstie

[Guest guest]

From Kirstie Magowan

Thought I would introduce our family. We live in Tauranga, in the North

Island of New Zealand.

I am married to and we have four children - two of whom receive

IVIG for CVID (the closest any doc has come to a diagnosis!) Cameron is

almost 12 and has been receiving IVIG since he was 11 months old. He was

born at 34 weeks, although he was pretty big - 6lb 11oz - he spent two

weeks in the special care nursery before coming home. At five and a half

weeks he had a " near-miss " cot death experience. He was blue and needed

resuscitating. He spent time in hospital then and came home on an apnoea

monitor. He continued to have severe apnoeas (stop-breathing episodes)

and at around 3 months started getting constant infections - mainly gut,

respiratory and skin problems. We were told at that stage that his

" prognosis was grim " , but they didn't really know what was going on. We

were referred to another hospital where he was diagosed as having

hypogammaglobulinaemia after only one hour!! At 12 months he weighed

only 12 lb, and looked like he was straight out of a refugee camp.

he started on IVIG and gained weight rapidly. He still has ongoing

infection problems - mostly sinus and gut. He had EBV about three years

ago, and suffers from overwhelming fatigue a lot of the time. He now

receives 9 grams of IVIG through his port-a-cath every two weeks.

is six, and until recently was receiving 6grams of IVIG every

week. She has had a pretty rough time, and I know how lucky we are to

still have her. She is very prone to septicemia and we have battled

overwhelming blood infections many times. Her digestive system is in

pretty poor shape, she takes loperamide for chronic diarrhoea,

trimethoprim for urinary infections, she is currently on abx for

suspected h.pylori infection and is losing weight rapidly at the moment.

We have been trying to reduce the frequency of her IVIG to two weekly,

but it just isn't helping her at all. She also suffers from autoimmune

complications. She has vasculitic skin lesions on her face and in her

ears pretty constantly, and had possible renal vasculitis - her biopsy

showed IgG, C3 and C4 deposits in her kidneys, but no-one really seems

to know what that actually means. She has constant hematuria. She also

has Raynaud's phenomenon and takes norvasc for that.

In spite of all their health problems, I think they are both pretty well

balanced kids. We try very hard to keep their lives as " normal " as

possible with few restrictions. Cameron is pretty good at working out

what he can and can't do and calculates the risks pretty well - he does

make a few mistakes, but so far nothing disasterous!

Our other children are Isaac, 8, and Stefanie, almost 14. Neither have

totally missed out on faulty immune systems - Isaac has borderline IgG

levels and has Raynaud's phenomenon affecting his hands and feet.

Stefanie developed Juvenile Rheumatoid Arthritis three years ago, but

that is now in remission and hopefully will stay that way.

Sorry about the length of this intro, but it is hard to cover everything

in fewer words.

Kirstie - Mum to Stef, Cameron (CVID), Isaac, and (CVID)