Possible Muscular Disorder

In my gut I was worried and in September / October this worry increased. Talia was improving but very slowly. Her weight was a problem but that was not the only thing disturbing me. I was still doing weekly visits to Hospiten usually accompanied by my mum and dad for support as my husband needed ot run our business ( Hamilton Homes) and keep it going. he lost me as an employee so had lots on his hands. My parents and I would make a morning of it - grab a coffee and chat while I would breastfeed little Talia.

We tried so hard to give her a top up with formula but she refused the bottle. I am still trying and she is still refusing. This scared me as she seemed to gag. I worried that she had some degenerating muscular disorder that affected the sucking reflex yet she could easily latch on. At 3.5 months, we introduced cereals to her diet as we discovered that she would take a spoon - feeding times were painful as at first it would take her up to 3 hours to take 6oml of milk with cereal. I would wander whether she wasted away more calories from feeding and would keep turning to the breast.

At 3 months we gave her the rotavirus oral vaccine -Rotarix. The rotavirus is a vomiting and diarrhea bug responsible for many child hospitalizations. It was recommended to me as this kind of bug is dangerous and life threatening to most kids but to Talia that effect would be increased due to her low weight. However this seemed to take a toll on her body and for two to three weeks she was very weak - she seemed to take a step backwards and lost her appetite. Since then I have stayed away from vaccines - I think her body weight is too low to cope with them.

At four months her vomiting improved, although she still had lots of wind. My husband and I were worried as she seemed to have such a weak and frail body - she barely kicked or moved and her hands and arms seemed limp - it was time to take things further and our paediatrician was of the same opinion. Mum´s at school were noticing that she was falling behind and begged me to get other opinions. I did not want to panic as a mum´s connection with her child is strong - what hope did Talia have if I lost the plot. My Hospiten paediatrician was very positive and kept me going at this time although we mutually agreed that it was time to search further and get specialist advice

We would swing in roundabouts - she would have good and bad days - on good days I was sure everything would be fine - perhaps I was just paranoid and on bad days, she would barely move - once mum put her down on the sofa, her hand got caught behind and she did not flinch. We were scared as some basic reflexes did not seem present. Thanks to the positive input and support of my family and husband and kids we all have just kept going and always positively and Talia is a very happy baby. Despite this agony - she is such a pleasure to be with and seeing her with her sisters who so adore her makes me so happy.