emma short's Page

Hi Emma,

Was just thinking of you yesterday. How is Holly getting on? Any news on an appt with the gastro paediatrician? Mia is doing well and today is 3 weeks exactly on Neocate. She is so much better than she was but still getting there rather than being 'cured'. I gave her some carrot the other day, took her out in her buggy and had a full on screaming and arm flinging episode. Not good. So now currently experimenting with thickening her foods with baby rice. She has only had carrot and pear so far as still waiting for appt with the dietrician. On the whole she is so much better, I love seeing her laugh and smile now instead of spending her days withdrawn and crying. Have decided to keep her on 2ml of ranitidine until I finish breastfeeding, just in case it still causes her problems. Down side of Neocate is definitely the nappies! Had a truly horrible one the other day and had to get it out the house quickly! xx

Hi Emma,

Had MiL staying for a few days so been offline. Glad to hear that Holly's improving, it really lifts your spirits when you have good days. Still no news of the dietician appt but Mia seems good on solids if I add baby rice, fingers crossed it continues. Know what you mean about the distortions and what is out of habit and what isn't. Mia still stretches her neck out whilst sleeping in her cot but not if she sleeps with me. Not had any more arm flinging as yet tho. Keep in touch, let me know how things go. xx

Hi Emma,

Glad to hear that you had a good appt with the GI paed. I know how you feel re the worrying about the possible neurological symptoms. We had to go through all the tests in hospital and it was an awful time. Hope you get the results quickly. We were in hospital during the last bank holiday so everyone was off and it took forever to get the results back...pure torture. Let me know how it goes. xx

Hi Emma,

Mia doing well and all is going great with her weaning. Trying to get her to drink more water which I was dreading as last time she had the most awful sandifers attack but touch wood, all okay so far. We saw Rosan Meyer last week who has given me a schedule to follow re introducing different food groups though we leave soya until she is a year old and dairy until she is 2 or 3 years old.

Just come back from hols and poor Mia ill with bug and ear infection . She's quite miserable at the moment as temp is high but hoping it will be under control by tomorrow. How is Holly? Did you get the tests done that your paed suggested? xx

Hi Emma,

Mia still on just Neocate and it seems to be working wonders for her. We are still on just root veg and a little bit of apple and pear at the mo but have to start introducing protein, peanut and strawberries within next couple of months. I am going to start once she is over this bug. Rosan Meyer, the dietician is brilliant and was totally familiar with sandifers too. xx

Hi Emma,

Our paeditrician is Dr Rom at Viveka Clinic in London, he works there with Dr Shah and referred us to him and Dr Shah then put us in touch with Dr Rosan Meyer to go through Mia's weaning. I think Rosan works quite closely with Dr Shah. I feel very lucky to have met the right people who were able to get Mia sorted quickly. I know the journey would a bit of a nightmare for you but wondered whether you'd consider getting a referral to Dr Shah at Great Ormond, I think he would be able to sort Holly out for you. xx

Hi Emma,

How is little Holly? Hope all is well with her. Mia doing well on weaning, she is good with wheat and peanut, so that was a relief. Haven't tried citrus or kiwi as teething at the moment. Hope all is going well and you've had success with her medication. xx

Hi Emma, so glad that the medication is now working for Holly. We had a follow-up with Dr Shah today and we don't need to see him for 6 months, which is great. In the meantime I have to try her on citrus fruit, strawberries, kiwi, egg and soy. Have a prescription for a calcium supplement for her. Mia now 8 months old. Teeth are only just coming through. Had a hellish few weeks with crying, temperatures etc and now we both have colds! Hope all good with you. xx

Hi Emma,

So lovely to hear from you again and really pleased that Holly has been well on the whole. It is hard to work out what triggers their attacks, particularly if you've not had one for a while. Come to think of it, if Mia is ill she sometimes has a little bit of torticollis and I have noticed that it coincides with her being under the weather. I was looking at the photos the other day from when she was a few weeks old and in every photo she is holding her head to one side....funny how you don't notice it at the time! xx