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Feeding problems and concerns around low weight

Hi

I have just joined this community forum and would like to introduce myself and explain a little about our daughter and her condition. Both mum and I are becoming concerned about her overall health and need some support and guidance from those with CP and those who are parents or carers.

Erin is 21 years of age and has athetoid or dyskinetic CP. All four limbs and trunk are very significantly affected and she has very little voluntary movement. Erin was diagnosed with this condition around 6 months old after losing a lot of blood when she was born. Erin is an alert and interactive person despite her struggles with verbal communication and her difficulty in using alternative and augmentative approaches. She has many friends, attends college and loves her boyfriend, boccia, brother, cinema and listening to books and music.

Our concerns right now are around feeding. Erin has dysphagia and we have seen a significant reduction in her capacity to eat and drink. Since she turned around eighteen years eating and swallowing have slowly become more difficult. We also know that this reduction in feeding capacity does seem to correlate to some extent with the very slow growth of wisdom teeth as when Erin experiences pain then her whole body tightens and she struggles even more with motor control. Erin used oral baclofen for a number of years to help with muscle spasm and we decided to stop using this as we felt it may have contributed to her feeding difficulty. Baclofen seemed to reduce her tone around swallowing and control of food in her mouth. Erin’s neurologist suggested Carbamazapine and we really only trialled it for around a month as we think it made little difference and increased nausea and reflux. Erin takes Omeprazole to reduce the impact of reflux and in the last year she had a Videofluoroscopic swallowing study and a barium swallow test. Swallowing study showed an irregular swallowing pattern and the barium swallow showed that although food takes time to travel down the oesophagus, there was no scarring or abnormalities in the gastrointestinal tract. This has been very hard winter for Erin as she continues to lose weight and has picked up every winter bug that has been going around.  Mealtimes have become quite stressful and Erin takes a long time to eat small quantities of food. Previously Erin was a very healthy and robust person and we feel her immunity has been significantly reduced as result of her loss of weight.

Erin’s dietician, SLT and gastroenterologist have all recommended that Erin has a gastrostomy procedure so that she can be fed with a tube. We are concerned about Erin having a surgical procedure and all the risks that this entails but are all very concerned about her low weight and how this is beginning to bring many health complications.  As parents we are getting a bit confused about how best to help Erin. She does communicate reasonably well with us but it is difficult to get very specific answers from her about when and where she experiences pain or discomfort. Often Erin will let us know if she has stomach cramps or a sore mouth but it feels that sometimes both Erin’s responses and our observations are not as accurate as we would wish them to be. We tend to see the day to day issues but are becoming confused about the bigger picture around how her condition affects her.

We would be very keen to hear from others who have experienced similar difficulties as Erin or those who have cared for those with similar concerns as ours. Please also excuse me for writing at such length as I know this is likely too much text for this notice board.  We just don’t want to make an uninformed decision for and with Erin.

Many thanks

Austin

Erin’s dad





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