Ben was taken ill in march 2003, with what was thought to be a virus. After his condition deteriorated I decided to take him to our local A&E. Once at A&E it was thought that he may have meningitis, however after many blood tests he was found to have a high sodium level and was diagnosed with diabetes insipidus. As Ben is so young it has been difficult to administer his DDAVP as he has such a small amount of diluted solution. DDAVP is another name for the drug desmopressin used to treat diabetes insipidus. He had to have daily blood tests in order to find the correct dose of the drug, but now these are being done weekly. He has had to have an MRI scan of his brain in order to check his pituitary gland, which had to be done under anaesthetic due to his age.

The results of the MRI showed that Ben had a condition called 'Dysgenesis of the corpus collosum'. This is a condition where the part which connects the two hemispheres of the brain is either totally or partially absent. This condition can be associated with developmental delay, however many people may have this condition unknowingly and lead a completely 'normal' life with the condition only being diagnosed after death by postmortem.

Ben had caused some concern to our family and health visitor as he had global developmental delays, since receiving treatment for Diabetes insipidus his development seems to be improving and he is now begining to catch up in all areas of concern. The consultant looking after Ben feels that he may have had this condition for some time and due to the condition causing him to feel unwell his development was hindered. He was referred for portage before he became ill in order to try to help with his developmental delays. Since his treatment the portage worker feels that Ben has Potential to catch up easily with all areas including mobility, speech ,hand-eye co-ordination etc.

It is not known whether Ben's dysgenesis of the corpus collosum will be significant regarding his developmental delay as since recieving treatment for Diabetes Insipidus he appears to be more alert and his development seems to be improving, only time will tell.

2003

In June Ben had an appointment with an Endocrinologist from Bristol at a joint clinic with the new Paediatrician Dr Ward. We were shown the MRI scans of Ben's brain and Dr Ward explained to us the diagnosis of dysgenesis of the corpus callossum.This is a condition where the 2 hemispheres of the brain do not join properly.

The Endocrinologist and Dr Ward felt that as Ben only has one functioning nostril his medication (Desmopressin) would be better given in tablet form. So Ben was admitted to hospital to change from intranasal desmopressin to half a tablet twice a day. The transfer was successful and Ben was discharged form hospital after only a couple of days. On the night we were discharged Ben began to vomit, so I contacted the ward fearful that he may become dehydrated. The nurse told us that if he was no better in the morning we should bring him back to the ward, so the following day we were re-admitted and Ben was found to have Norwalk Virus. The ward was closed when we arrived as many other patients and some of the staff were unwell.

After a couple of days we were discharged again and after Andy and I had also recovered from Norwalk Virus we went on holiday to Menorca.

While in Menorca the weather was very hot and we soon discovered that Ben could not cope very well with the heat. During our time in Menorca Ben visited the Medical Centre for a chest X-Ray and was found to have Bronchitis. He soon recovered having been given some antibiotics. and we did have a successful family holiday in France in August.

Ben still has portage and has a new Physiotherapist who has referred Ben to have some Pedro boots made as this she feels that he could do with some extra support. The physio feels that once Ben has the extra support he should find it easier to walk and balance.

During September we had an appointment to see Mr Mercer and the Regional Cleft Palate Team, they were pleased with Ben's lip and palate and said that they would have to wait until Ben was able to co-operate before they would be able to cosmetically repair his nostril, therefore felt that we wouldn't need to see them for 5 years.

Ben was also referred to a dietician as it was felt that his weight had dropped slightly through the centiles. The dietician suggested that Ben should have extra cheese, cream, and butter added to his meals in order to add calories and also where possible food should be fried and not grilled or baked. The dietitian also suggested that Ben has a food supplement added to his drinks to increase calories particularly when he is going through a 'difficult' phase with his feeding.

During August Ben attended a local nursery which he absolutely loved. The nursery were very supportive of Ben's problems and were keen to help with any of the goals set by the Physio (Claire) or Debbie (Portage home visitor).

Unfortunately in September our childminder informed us that she would be giving up childminding so from October Ben will be attending nursery on a regular basis, and they are happy for Claire to visit them for physiotherapy sessions so that they will be able to help with Ben's mobility.