Julie King's Page

Hi Julie how is your daughter doing on just the Neocate xx

LOL...I know what you mean about the Neocate poos, i had to make a quick dash to the bin with one today. Im so glad Mia is getting on well, it makes things easier before weaning, as that is a whole new can of worms. Holly has had a good few days, ive even got her in the pram. A few days before that she was like Mia flinging her arms, crying holding her breath,and i could hear the reflux, its scary, but i think constipation had a lot to do with it. Holly is still going into the body distortions, but not so much. Ive been out with her today, and it feels so great. I have an appointment with my GP friday to discuss the referal to a GI, as the hospital hasnt got back to me. However i may just see how she goes, This week she has had mostly fruit and ive tried to cut out apple, Its hard to pinpoint a certain food when the episodes are so frequent. I just hope she gets better, as ive really enjoyed these last few days, seeing her laughing and going in her pram. I now have to look out for what is habit and what is genuine, as she has been doing this body posturing thing for so long. I hope things continue to improve for you and Mia xxxxxxxxx

Hi Julie, i hope you had a good time with your MIL....I posted the following text on the babycentre Usa earlier..so ive cut and paste to let you know how things are going, hope you dont mind...............

'''''''I thought i would let you know how i got off with the Pediatrician GI. She was really nice, she asked me all about holly's history and birth. (She was emergency C section). She asked me about the Birth trauma she suffered. (When her scalp was torn from her Skull. 'I have pics in my Profile').



She asked me all about her Dystonic body posturing (Sandifers). I explained to her about the two types of episodes she has, also the Laryngospasm type ones. She had loads of patience and was very thorough, she also had a lot of empathy, and told me she can imagine the stress we have been under.



It was so nice to be taken seriously. She told me that she did not want to change meds as she felt Nexium-(Esomeprazole here) and Prevacid- (Lansoprazole here) were essentially the same drug and they just varied in their release times. (what do you think?)



She told me that she has arranged to get a PH study done. She also wants holly to see a neurologist



She feels that we need the tests done to see if this is some type of unrelated Dystonia. I hope and pray its not, i dont want holly going through the rest of her life with this condition..So now the tables have turned and i want it to be Sandifer's.



I took video evidence, but luckily Holly did the dystonic posturing, and the arm flinging Laryngospasm in front of her.



So hopefully these tests will give us some insight into whats happening finally. xx

Hi Julie, how is Mia doing xx

Hi Julie, it sounds like you are getting some great advice, Is Mia having any medication now or just the neocate. Holly is still having sandifer attacks, im still waiting for the probe it seems to be taking forever. She is slightly better but i think thats due to the fact that she is sitting up more. What foods have you been giving mia x

You seem to have her sandifers under control, you are so lucky to have people who understand this condition. Who is your pediatrician and where is your dietician from. I hope things continue to improve for Mia. Ive taken holly off omeprazole today, Im hoping this may help. I am fed up of trying to deal with this myself, i have the week off work so i can monitor how holly responds. xx

Hi Julie, Im glad Mia is doing so well, Holly had a PH probe a few months ago, it showed 4% reflux ( not significant) typical she had her best day ever. However at least we realised her medication was working. She still has regular sandifer attacks but not as bad as they were. Teething has caused a bit odf chaos. her biggest problem is the walker. However the more straighter she is becomming the better she seems to get. I did try her with soy and she seemed to be ok. How old is Mia now x

Hi Julie, i had a hellish few weeks with the teething too. Her reflux went crazy. How does Mia act when she is having a reaction. Holly still has regular episodes. Holly has no reactions like excema or rashes. She also never cries with her episodes it is a very hard thing to try and control. There does not seem to be any trigger i can put my finger on. I do believe she is getting better though. Im glad all went well with dr shah..he sounds really good. x

Hi Julie, thats mad i was only wondering about you the other day, Im so glad Mia is doing well. Holly was doing excellently, she started walking at age 1, we did not see another sandifer episode till last week. I thought they were well and truly gone. However over the last week they seemed to have appeared again. Its hard to know what has triggered it, I tend to think it may be her teeth as her gums have been swollen for around 3 weeks, she has back teeth comming through, her reflux is always bad when she is teething. However she has been having foods with Gluten so that could be the trigger too, its tough x

Hi Julie my previous comment got cut short there, i meant to say holly is 15 months now, so we didnt see any sandifer's for 5 months. I havent been on here for ages either, im glad you let me know how you were doing. x