Christopher Edward Diamond
Living with Intestinal Lymphangiectasia
Updates
24th July 2009
We got a letter from Dr Garside today, telling us the results of the overnight o2 saturations test. He says the results were normal. I guess that means that despite my lungs regularly getting ripped to bits by infections, they seem to repair and function fine in between the infections. Happy Days!
9th July 2009
While at the hospital on the 7th, we were given an overnight oxygen saturation monitor, to check how my lungs are performing overnight, when my chest is clear of infection. I had to wear a funny thing on my finger, fastened to a computer machine thing all night, as you can see in the picture below.
7th July 2009
Today, my Daddy took me to the hospital again to have the CT scan done on my chest that Dr Garside so kindly arranged just a few weeks ago. I had a lot of fun in the CT department where I had to lay on my back on this big bed and go for a ride through a big white doughnut. I wasn't scared at all because I had a brave tiger teddy on the bed with me to keep me safe and my Daddy stood right at the side of me but he had to wear a big green apron and he looked a bit silly. I was a very good boy, held my breath and stayed very still when the lady asked me to and after 15 minutes, it was all over. I cant wait until I have to have another ride on one of them doughnut beds, they're wicked!
18th June 2009
Wow, what a relief, after just 3 days of the antibiotics, I was feeling much better, and after taking the full course, I feel great again.
12th June 2009
Well yet again, I have another bad chest. My Daddy rang the doctors, but there are 'no appointments' until monday! What a surprise. Good job that nice Dr Garside at the hospital gave my daddy some antibiotics to make up for me for just such an occasion.
4th June 2009
Today, I get another free day off school to go and see my Consultant, Dr Garside at our local hospital, the Huddersfield Royal Infirmary. I like it there because they have a big play room where i can paint while i wait to see the doctor. When we saw Dr Garside, he was quite impressed with my general developementbut was not too pleased to hear that when I become 'chesty' at home, the GP's receptionists feel unable to grasp the severity of the situation and only offer me an appointment with a doctor within 2 or 3 days, by which time, my chest is really sore and I am awake all night crying, unable to breath properly. So to remedy this oversight, Dr Garside has prescribed me some antibiotics in dry powder form that my good old dad can make up in to medicine as soon as I start with a 'crackly chest' and therfore fight the infection before it has time to get a good hold of me. Dr Garside is also arranging for my CT scan to be done at HRI within the next few weeks so he can get the ball rolling on the treatment needed for my chest.
1st June 2009
Today, I had some 'really important tests' done by the 'school nurse', and despite me being under the care of some of the leading consultants in the country who are more than happy with my progress considering my conditions, in her opinion, my growth is 'not satisfactory', and she is going to contact my Mum and Dad to discuss the matter!
You just can't please some people!
In fact, her 'results' show that my height is 99.7cm (3' 3¼") and weight is 15.4kg (2st 5½lb), which means in the 7 weeks since visiting Dr Mario, I have grown 1.7cm (well over ½ inch) and put on 200grams (nearly ½lb). For such a little boy, I dont think that is bad in just 7 weeks!
May 3rd 2009
For those of you who are medically or technically minded, or just plain curious, these are my latest blood and biochemistry results,
from the armful of blood they took from me at Newcastle. (I swear my arm is still a little empty and floppy!!)
Blood
Haemoglobin - 12.5
Platelet Count - 666
MCV - 79.8
White Cells - 5.1 (neutophils 2.6, lymphocytes 1.2 and eosinophils 0.7)
Clotting
PT - 12
aPTT - 34
Fibrinogen - 4.2g/L.
Biochemistry
Albumin - low - 34 g/L
Ionised calcium - 1.19 mmol/L
Liver Function
Bilirubin - normal
ALT and albumin phosphatase - 72 U/L
Parathyroid hormone - 19 ng/L (range 10 - 60)
Serum Immunoglobulins
trough IgG 4.3 g/L (range 4.9 - 16.1)
IgA 0.47 g/L
IgM 0.41g/L (range 0.5 - 2)
Total IgE was raised at 846 kU/L
Lymphocyte Markers
Showed Lymphopenia with 466 T cells (240 CD8+, 198 CD4+) 300 NK cells, and 420 B cells.
Percentage wise - 38% T cells, 25% NK cells, 34% B cells.
The pattern of mainly T cell Lymphopenia, low IgG and IgM and low albumin is in keeping with the diagnosis of Intestinal Lymphangiectasia.
April 14th 2009
Well, me and my Dad went on a long drive today to see my special Doctors, Dr Hodges and Dr Abinun in Newcastle. They seemed to be quite happy that I am growing well (98cm / 3' 2½") and gaining weight (15.2kg / 2st 5lb). They gave me a thorough examination and took lots of blood off me, almost an arm full, to do lots of test. They are also going to write to one of my other Doctors, Dr Chetcuti, to arrange a CT scan and Spirometry testing to further diagnose and treat my lungs. Besides seeing my Doctors,, I had a great day out with my Dad in the car as we drove the 250 mile round trip. I had my laptop in the car to keep me occupied so I could talk to my Mummy back home on the instant messenger and play on 'Ben 10' on the internet. Boy, don't you just love technology!
Me, talking to my beautiful mummy on MSN
April 8th 2009.
Wow, I am now 5 years old so I am a big boy now. I have got lots of great presents for my birthday but still not feeling too well. Hope I feel well soon so I can start and play with all my new birthday stuff.
April 7th 2009.
Well am going to sleep back in my bed tonight and see if I can get a good nights sleep before my birthday in the morning. I think my daddy could do with some sleep too so i have told him i will be ok tonight so he will go to bed too. He says if I wake up in the night I can wake him up so I think I might be ok until about 3 in the morning, then i might sneak into his bed !!!
April 4th 2009.
Guess what? Yep! I've got another chest infection, and quite a bad one this time. We usually manage with my nebuliser at home when my breathing is bad, but over the last few days I have deteriorated quite badly and I think it scared my Daddy a bit so he took me to hospital where they checked me out and soon had me sorted with some antibiotics and calpol. I have been awake with my Daddy for several days and nights in a row now because as soon as i lay down, I start coughing and having bad trouble breathing, so my Daddy stays up all night with me on the settee and we watch 'Ben 10' together!
I am having to have my nebuliser through the day and night as well as high dose antibiotics as well as calpol and ibuprofen to keep my temperature down. My chest is really tight and it is taking quite a lot of effort to take each breath. I hope this doesn't last long, I'm tired.
You can see how bad my breathing has become in the Movies section of the site.
April 2nd 2009
Have started with a bit of a 'chuggy' chest again. Not too bad at the moment, but based on past experience, I know exactly where it's heading! My daddy tried getting an appointment at the GP's but they've no appointments until after the weekend! If only I knew 3 days ago, that I was going to be ill?!?
Oh well, bad times! Here we go again!
January 30th 2009.
Well my mummy has just come home from hospital after having her final operation and she hasn't got that bag thing on her tummy anymore. She is still sore but she says she will be better soon, then we can play fight again, but for now I just enjoy having lots of cuddles with her. I love you mummy x
