| Lee had a normal delivery and was a healthy if small 6lb 4 oz. I was concerned about him not tracking with his eyes at 3 mths of age. We took him to a paediatrician who checked him out and ran many tests including bloods and urine.
The morning I was taking him for a brain ultrasound I got a call from the Doctor to come in straight after the ultrasound as a matter of urgency. When we got there he informed me I had a very sick little boy on my hands and I would have to take him straight through to the childrens hospital immediatly. We got there and were met by a barrage of specialists and many more tests were done that day. They then informed me he had ASA and explained all about it. Since then he has been on a low protein diet and Arginine. He has never had high ammonia levels and is developing normally at this stage. They say he is probably a late onset case and we are all hoping that because it has been discovered early He will continue to thrive with few problems. He is one of the happiest kids I know and is full of life. Because he is doing so well we only see the specialist every 4 - 6mths. We don't have a lot of cases of ASA here but even his Doctors are amazed at well he is doing. Lee sees and has been seeing a Chiropractor from 6 days of age. The Chiropractor is very aware of his condition and works on his immune and nervous systems to keep him well. Lee has never been ill apart from a cold each winter and I believe his health and wellness stems from this as well as diet and medication. Lee continues to amaze his specialist. Last winter (2004) he had two bouts of pneumonia and no sign of high ammonia levels. His speech is a little behind so we put him into daycare. He loves it and his speech has improved drastically. We will be seeing a speech therapist shortly to get a formal assessment made and will start therapy if necessary. Lee is also getting a full developmental check as he will be starting formal schooling in 18 months and we want to know if he will struggle in any areas. So far he seems to be doing OK. He is a very bright boy who retains a lot of information. I was worried about daycare as so many kis and so many illnesses in one place. Luckily he never seems to get any of the bugs that go through the centre. Hopefully his immune system will stay stron and help protect him. We started a recipe website for him and his Low Protein meals. That can be found at http://members.iinet.net.au/~gddoak/index.html |
| Lee |
| Lee's Information as of May 2005 |
| Contact person: Denise Email: [email protected] Birthday: 2001 Age at Diagnosis: 3 mths Other diagnoses: None Home town: Australia Siblings: 1 sister (unaffected ) Developmental Status: Normal development up to date. Liver Status: No Problems Protein allowance: 19grams Medications: Arginine 3ml 3xdaily, calcium and iron occasionally |
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