Back to Spain

The rest of our UK trip was a whirlwind - the days following the brain scan were filled with trips to the geneticist, neurologist for further opinion on the scan and a few trips to a laboratory for bloodtests. My poor Talia -constantly poked and priked. Taking blood was traumatic as she was still bruised from earlier tests and she was not well hydrated. Well to cut a long story short - we are back in Spain and are still seraching. The last few months I have just been focusing on physio, swimming and speech theraphy. We are at Aprona everyday now and are working hard to build up Talia's muscles. The geneticist has come back with results and so far all genetic testing is fine however he has pointed out that Talia's lactate levels are high, suggesting that there may be a metabolic poblem somewhere. Further to these findings, I called Materno Infantil who do not think the elevation is significant - however after Talia lost 100g a couple of weeks ago, I decided to go back to the Costa del Sol and re-visit a doctor I saw there in November. To be honest, the service I have received there has been far superior to the servicein Malaga. Yesterday they repeated the lactate test and within an hour had the results - incredible!! Unfortrunately it is still high and this means that we need to do further testing in terms of a muscle biopsy. Apparently there are only two places in Spain that do this so we may have to head for Barcelona.

The doctors yesterday were fantastic andthe nurses in the Costa del Sol were playing with Talia. There were about 3 doctors watching her and they even tried to analyse a new test that they have never done before - for once I felt as though somebody cared here in Spain. Finally I could see a team coming together.

The doctors also took spinal fluid yesterday - they did a lumber puncture. They warned me that Talia may suffer from headaches and backache afterwards. We were sent outside to wait as they needed to concentrate without us around. It is so difficult to watch your child suffer - I feel emotionally exhausted.

Last night was awful, Talia cried lots and was obviously in excruciating pain - I was beside myself as nothing would calm her. Ithink that holding her only worsened the back pain. Eventually we put on my mum's deep relaxation CD and within 10 minutes, Talia was asleep. We repeated this a couple of hours later and managed to soothe her again.

My poor baby - she is beautiful and I hate to see her suffer.

More Blood Tests

We saw the endocrinologist who on seeing Talia confirmed that she had weak muscle tone but explained that from what he had been told that he had expected her to be worse. She was having a good day on that visit. He really did not think she had hypothyroidism as she just did not fit the stereo-type. I asked for advice on feeding. He recommended that I stop cereal feeds and go back to just breast. He claimed that the quantity of cereal she was getting was insignificant and that she would gain more weight from the breast. I was confused by this - I know breast is best but if she wasn't putting on weight I wanted a magic formula or vitamin - I wanted something fattening. I felt like my milk really wasn't right.

The Dr claimed that he really did not know what Talia had and that his own gut led him to believe that she had some kind of metabolic illness so he wanted to run some more blood tests to check this out. He claimed that there were at least 200 metabolic illnesses and many that existed that had still not been founded or defined so in not so many words he told me to be patient as we may never find out what she is suffering from. Patience - my foot!! tell a mum with a newborn that is not thriving to have patience - something all Drs love to say but something that a mum finds hard to deal with.

So yet aagain more bloodtests were scheduled. At first they let me in with Talia but then the nurses (after asking me to hold her while they pricked her) then told me I should leave the room as they could not work with me around. I was baffled as 2 minutes prior they had asked me for help!! They were a little offish and I found this sad as when you see a mum and child - surely empathy would teach you to treat the family with tact but I found the staff very cold. Despite the latter they were formal and did take the blood and carry out the job professionally so I guess that´s all that matters.

The lDr said he would call when he had the results.