Kelly's Page

hi Kelly - I was so touched by your posting about you and Callum, and just wanted to wish you good luck for Tuesday and your appointment at Great Ormond St. Kate

Hi, thanks for your message. I did read your story with great interest (although it was in a bit of a jumble so I don't know if I got the full story as I have an apple computer and it did not open the format very well!).

I am really interested by what you had to say though. My daughter is 7 months and she is still on stage 1 purees, I have tried her with added chicken but she refused it as just chokes on it and it was practically completely smooth (I am not sure if this is cause she is still quite young for lumpier foods?). What is getting to me is the constant choking and gagging mainly with milk (neocate) and about once a day she gags until she brings up a load of clear mucus. She has had this constant rattlling/wheezing chest for 3 months now and after todays rubbish appointment with the paediatrician on NHS I will have to go back to the private consultant at the Portland. I will look into what you say more and will present Dr Shah's diagnosis to him and see what he has to say. Did you go private to see him or was it NHS - do you mind me asking how much it was if private or are you covered?

I am going to try opening the document again and see if I can get it in a better format.

The problem I have (and the doctors seem to have) with my daughter is that she is a very healthy weight and very happy so they just don't see anything being wrong despiter the fact that she sounds like she smokes 100 a day.

Thanks
x

Thanks, I hve a chance to have good reads now and it s certainly very interesting. I will definately look into it more, I just wonder with Lauren as she is thriving in all aspects apart from the chest problem and choking so not sure if it is related?

Thanks again
x

Thanks for this. I will get it all written down and email her - se sounds very helpful?

Like you say the cost is irrelevant - we have already spent £400 on private consultations largely due to lack of urgency with the NHS.

Thanks so much for all your help - I think Dr Shah might have to work overtime!!!

x

Hi Kelly,

Wonderful news on Callum! Out of curiousity what did Callum do for his testing to come to the diagnosis for the esonophillis gut disease and how long is he suppose to be on these medications to bring down the inflammation? Hope Callum just keeps getting better and better! Take care. Kay

Hi Kelly, I have been looking into delayed allergies and have now found quite a lot of information on it. It does sound like this could be an explanation to Laurens wheezing and general stuffy nose. I notice that Dr Shah did not do any testing and his theory is if the drugs work then he thinks it is a likely cause ( this is the same principals our consultant works on so happy woth that). The only thing I am interested about getting more info from you on is re the questions Dr Shah asked you - none of these are actually relevant to Lauren - apart from the reflux symptoms of arching and obvious intolerence to milk. She has never had a sore bum, she is never sick, so weight problems.....

I plan to sed an email to my consultant tonight asking about her blood test results and her anaemia and want to mention Dr Shah and the possible delayed allergy.

Great if you could let me know your thoughts and what medication Callum is on.

Oh one last thing - you mention that your friends daughter got lung damage as it went untreated for so long. What were her symptoms and history?

Thanks so much.
xx

PS - so thrilled Callum is responding so well x

Hi Kelly

Hope Callum is still doing good.

We have gone back quite a few steps since first trying to wean at 15 weeks - she is 20 weeks now. Did you first wean Callum on Baby rice, I am trying to work out if it is this that has caused Lucy's deteriation? What drugs have you now got Callum on?

I have 3 different peads appointments on Tues and Wed next week and after waiting 20 weeks for them I want to be as informed as possible.

Thanks in anticipation

Donna

I live in Canterbury, my daughter is 23 weeks old and she is my first child. She has had reflux for 10 weeks and it seems to be getting worse if anything. My HV and GP are useless. HV recommended lactose free milk! This made no difference of course. We have tried Gaviscon which helped slightly, all different formulas & bottles (now on Dr Brown). I am trying to wean her now but that is not going good. I give her her solids at lunchtime and then give her the milk about 15 mins later. Either she is sick whilst I am giving her her solids or else she is sick the solids when I am giving her her milk afterwards. Consequently she hardly keeps any solids down. It is getting to the point now when she is refusing to try most things! I am always monitering how much she is eating to make sure she is eating enough in a day. I have only just joined this website so I have not read anything on it yet so hopefully there will be some helpful advice. I feel very unhappy with it all. All people say to me is that "babies are sick" & no-one belives how bad it is! If you have any help on weaning that would be great! Thanks. Emma

Hi
Thanks for your advice. I actually live in Chartham. I went to my GP today (as Fraya is vomiting a lot of mucus now) and she checked her over and said she has a bad cold but is fine otherwise. I said that she is sick nearly every feed and showed a video of her vomiting that my husband took on our camera. After she saw that she believed how serious it is and we insisted that Fraya be referred to a paed! Luckily she agreed to do this! At last! Hopefully we should hear about this next week. Did you ever see a paed in Canterbury? If so, were they any help? it would be nice to meet another mother with a child with reflux although it is difficult to meet as up as Fraya is always ill - she has just got over chicken pox and now she has a bad cold and cough! I gave her sweet potato today with milk and baby rice and she ate it and wasn't sick! We have blocks under her cot to rise one end up and we usually sit her up for about 20 mins after each feed. She can sit up on her own now as well so hopefully that will help.

Hi
In answer to your other question about tongue tie - when my GP said that to have it cut would be "barbaric" I insisted anyway that he refer us to a specialist so he did this and said that the only one who could do it was in East Grinstead! We knew from Canterbury Hospital that there is a specialist in Margate so I got the HV to get me an appointment with him (which she did eventually!) When Fraya was 6 weeks old she had the tongue tie cut - very quick procedure and only needed local anaesthetic gel. Beofre she had it cut I had such difficulties breast feeding her, she couldn't latch on very well and would scream when I was trying to feed her. After she had it cut the feeding improved a lot (although I gave up breast feeding 4 weeks later as she wasn't gaining any weight). How old is your daughter? Has she not had hers cut?