?Paediatric PID... (Sorry, quite long)
Jan 19, 2013 21:27:49 GMT
Post by lau85 on Jan 19, 2013 21:27:49 GMT
Hey. Newbie here.
I was just wondering (not even sure I'm in the right place to be asking) if anyone has any experience with their little ones and immune deficiency?
My three and a half year old and I are awaiting tests (6-8 weeks) for immune disorders. It has been a long and tough three years for my little man, and I'm beginning to feel like I am just being a really over protective mother. Luckily, Samuel is under a Haematologist now after spending the past two and a half years under a general Paediatrician, and a Paediatric ENT specialist. Whilst his General Paed. (Actually a renal specialist, which is a problem Samuel doesn't have!) was lovely and we got a few answers from her, and she was competent enough in some areas, but I felt I was always battling to get her to take his recurrent viruses seriously.
It started from a few months old, Samuel had numerous chest infections and viruses. Noisy breathing and mucous in his stools, coughing etc. He was referred to said Paed after he had been to GP hundreds of times. He also had bouts of eczema and Hives during these viruses. They were concerned Samuel had Cystic Fibrosis but the Sweat test came back normal. They diagnosed early Asthma at 18m and he has been on steroid inhalers since.
"Recurrent viruses" was also diagnosed.
We dealt with this for ages. Still continued viral infections, and bacterial, including recurrent Croup, needing nebulisers. Weight loss was one thing that wasn't a problem and we were told that highlights Samuel is just "unlucky" with the amount of illnesses he was getting. He hasn't ever been to nursery until September just gone, so that wasn't the reasoning like a lot of people think.
His breathing at night was getting worse, he kept (keeps) getting "croup attacks" lasting a few minutes that sounds like he has bad croup, but isn't. He was referred to an ENT specialist and after I showed a few videos, he was immediately diagnosed with Obstructive Sleep Apnoea and placed on the waiting list for removal of super massive tonsils and adenoids. .
(I'm really sorry this is long, I just need to vent and, actually it's quite therapeutic keeping it all logged)
This was May 2012. We went on Holiday a couple days after the ENT appt, Samuel developed fatigue, sleeping for three hours at a time. He had no energy (he is usually hyper which is out down to 'over tiredness' from his OSA!) I also noticed dark bruises and he'd had a few nosebleeds. I hate going to the GP because I feel we live there and they wonder "what is she bringing him in for now?!" I had taken him after we go back, and was told it was normal. He only had the one lumpy bruise. About a month after, he was still tired, moments of normal wellness and playing etc, but started getting serious nosebleeds, huge deep lumpy bruises. I started questioning myself and how I was picking him up etc...he even had petechia bruising on his wrists that mimicked finger prints... I was silently questioning his Father, my mum, me.. Until I realised it was where I had held him by the wrists to swing him around in the garden. I felt so guilty.
I took him out of hours around 7pm, and the dr did blood tests there and then. I received a call at 8am the next day from that same GP to say we needed to get him in to hospital straight away as he had abnormal blood tests. I asked on the phone why they felt the need to rush us, (in a nicer way with wording!) and he told me there on the phone that they suspected Leukaemia.
After numerous tests, thank goodness Leukaemia was ruled out, but they told us he had issues with his blood clotting and suspected a bleeding disorder. We were told it was likely von Willebrand disease. This from June, brings us to today. We are almost none the wiser, apart from the fact his operation for OSA was cancelled in August due to bleeding problems. He has been hospitalised at Christmas with a horrendous viral eat infection and tonsillitis that caused Mesenteric Adenitis and were unable to keep him awake for 36hrs or get his temp to drop (he spikes temps regularly but usually are brought down) and we finally saw the Haematologist RE: von Willebrand, we were hoping for answers as recently Samuel's dad and I had tests to see if we carried the faulty blood clotting factor. Neither of us do. Also, we found out Samuel's tests aren't consistent. They are abnormal on every test, but for different reasons. The lumpy bruises still happen, the bleeding not so much and the permanent viruses still all the time. The Haem did more bloods and said she is testing for immune deficiencies, including CVID and IGg subclass or something.
Does any of this ring true to anyone else? Does this sound like an immune disorder, even though he can deal with some of these viruses so well, that he sometimes appears 100% normal. I am going out of my mind now! Sorry this was SO long. Since he came out of hospital, he has been whiny, tired, and generally lost his sparkle it's been nearly three weeks.
Thank you to anyone to bothered to read to the end; I know I waffled endlessly.
Laura x
I was just wondering (not even sure I'm in the right place to be asking) if anyone has any experience with their little ones and immune deficiency?
My three and a half year old and I are awaiting tests (6-8 weeks) for immune disorders. It has been a long and tough three years for my little man, and I'm beginning to feel like I am just being a really over protective mother. Luckily, Samuel is under a Haematologist now after spending the past two and a half years under a general Paediatrician, and a Paediatric ENT specialist. Whilst his General Paed. (Actually a renal specialist, which is a problem Samuel doesn't have!) was lovely and we got a few answers from her, and she was competent enough in some areas, but I felt I was always battling to get her to take his recurrent viruses seriously.
It started from a few months old, Samuel had numerous chest infections and viruses. Noisy breathing and mucous in his stools, coughing etc. He was referred to said Paed after he had been to GP hundreds of times. He also had bouts of eczema and Hives during these viruses. They were concerned Samuel had Cystic Fibrosis but the Sweat test came back normal. They diagnosed early Asthma at 18m and he has been on steroid inhalers since.
"Recurrent viruses" was also diagnosed.
We dealt with this for ages. Still continued viral infections, and bacterial, including recurrent Croup, needing nebulisers. Weight loss was one thing that wasn't a problem and we were told that highlights Samuel is just "unlucky" with the amount of illnesses he was getting. He hasn't ever been to nursery until September just gone, so that wasn't the reasoning like a lot of people think.
His breathing at night was getting worse, he kept (keeps) getting "croup attacks" lasting a few minutes that sounds like he has bad croup, but isn't. He was referred to an ENT specialist and after I showed a few videos, he was immediately diagnosed with Obstructive Sleep Apnoea and placed on the waiting list for removal of super massive tonsils and adenoids. .
(I'm really sorry this is long, I just need to vent and, actually it's quite therapeutic keeping it all logged)
This was May 2012. We went on Holiday a couple days after the ENT appt, Samuel developed fatigue, sleeping for three hours at a time. He had no energy (he is usually hyper which is out down to 'over tiredness' from his OSA!) I also noticed dark bruises and he'd had a few nosebleeds. I hate going to the GP because I feel we live there and they wonder "what is she bringing him in for now?!" I had taken him after we go back, and was told it was normal. He only had the one lumpy bruise. About a month after, he was still tired, moments of normal wellness and playing etc, but started getting serious nosebleeds, huge deep lumpy bruises. I started questioning myself and how I was picking him up etc...he even had petechia bruising on his wrists that mimicked finger prints... I was silently questioning his Father, my mum, me.. Until I realised it was where I had held him by the wrists to swing him around in the garden. I felt so guilty.
I took him out of hours around 7pm, and the dr did blood tests there and then. I received a call at 8am the next day from that same GP to say we needed to get him in to hospital straight away as he had abnormal blood tests. I asked on the phone why they felt the need to rush us, (in a nicer way with wording!) and he told me there on the phone that they suspected Leukaemia.
After numerous tests, thank goodness Leukaemia was ruled out, but they told us he had issues with his blood clotting and suspected a bleeding disorder. We were told it was likely von Willebrand disease. This from June, brings us to today. We are almost none the wiser, apart from the fact his operation for OSA was cancelled in August due to bleeding problems. He has been hospitalised at Christmas with a horrendous viral eat infection and tonsillitis that caused Mesenteric Adenitis and were unable to keep him awake for 36hrs or get his temp to drop (he spikes temps regularly but usually are brought down) and we finally saw the Haematologist RE: von Willebrand, we were hoping for answers as recently Samuel's dad and I had tests to see if we carried the faulty blood clotting factor. Neither of us do. Also, we found out Samuel's tests aren't consistent. They are abnormal on every test, but for different reasons. The lumpy bruises still happen, the bleeding not so much and the permanent viruses still all the time. The Haem did more bloods and said she is testing for immune deficiencies, including CVID and IGg subclass or something.
Does any of this ring true to anyone else? Does this sound like an immune disorder, even though he can deal with some of these viruses so well, that he sometimes appears 100% normal. I am going out of my mind now! Sorry this was SO long. Since he came out of hospital, he has been whiny, tired, and generally lost his sparkle it's been nearly three weeks.
Thank you to anyone to bothered to read to the end; I know I waffled endlessly.
Laura x
