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Ok, here we go. James went to the hospital on 30th July and it was not his normal consultant. They explained that this wasdue to his appointment being changed even though I had said that we were to see the same person. The person we saw was a senior registrar(sp?). He asked lots of questions so that he had the full picture. He would not refer himfor an endoscopy as he had read on the notes that the consultant did not think it was needed at this point. He is looking into getting James refered to the feeding clinic though asthe dietician has not followed up on this. He also wants James to see a psycologist(sp?) as he thinks it would be of help. We have to ring back if we have not heard anything in 6 weeks time. So whilst they will still not refer for an endoscopy with biopsies at least they are getting things moving. At the moment I am unsure what to do. We don’t really have the money to go private for a consultation to get a second opinion at the moment which makes things more difficult. We could possibly ask my in laws to pay for it though, but though don’t seem to think the situation is as bad as it is. They have always dug their heads in the sand when it has come to James’s eczema, allergies and feeding issues.I think I will see what happens at the feeding clinic etc. I should at least give them a chance to help James now they are actually doing something. If we don’t hear anything in the time frame given then I can start mythering them again and also convinve my in laws that we do need to go for a second opinion.
I am so sorry you are still going through this. I was hoping James was getting better. I know it is so difficult to have an older child and thinking – why can’t my little boy just eat and be healthy?. It is so hard. Big hugs to you. I would think it would be better to find someone who feels that James has reflux and MFPI and DUE to those conditions, he now has a feeding aversion. That is what our GI Peds specialist says. As moms, we have a huge job in trying to get our LO’s to eat = it shouldn’t be that hard, but it IS. But, to have a doc who says that the reflux and MFPI are causing the aversions – that took a lot of weight off my shoulders. You are doing everything you can. It is just so very, very difficult.
Carson sees our specialist and he has a few other docs that he sees who then report back to our Peds Gi Spec. I have found – purely by mistake – if you ask clinics and hospitals and possibly private doctors, they will work on a sliding scale. One place had me fill out a finantial form. I just printed a month out from our Quicken on the computer and they give us free visits due to the expense of Neocate, meds and prior hospital bills. Whine a little bit
and tell them of your situation, your expenses and they may give you a break. It may not be much, but maybe worth a try. I’ll go to KWFA also. Big hugs to you!!!We had an appointment on Friday with the pars GP to get a referal for a second opinion. It was a complete waste of time. We went in and explained how James was still only having the neocate advance and eating raisins. How he looked frightened if you even attempted to give him anything else. How on the odd occasion that James had tried anything different that it would usually end up in him screaming in pain at night pulling at his stomach, mucousy nappies and an eczema flare. First of all the paed Gp did not believe that was all he was having and said that on the last letter from the hospital (which he read off the computer whilst I was there) it did not state that James needed to be on such a restricted diet. I said I know that but James will not eat anything else. He then suggested to give him toast with butter and a soft boiled egg as most children love this. I then stated that James is allergic to egg, wheat and dairy and whilst we can get safe bread and a safe sunflower spread James will not even touch it so no chane of him eating it. He then suggested to keep a food diary as this would help to find the foods that he reacts to, like we have not done this before. I then stated that all it would consist of is food that he is offered and then taken away as he will not eat it and neocate and raisins of course. He then asked what I would like him to do as he is not a specialist and I explained that we wanted a referal for a second opinion. I gave a list of hospitals that had allergy specialist and GI specialists. He said that he would not consider refering James at this point until we have had the next appointment with James’s consultant and explained the whole situation otherwise we could upset the consultant as he has been seeing James for a long time now. I responded by saying that he has done a lot for James when it comes to his eczema but nothing seems to be being done to help James atthe moment. After a long talk he said that he will refer James after the next appointment if we still feel nothing is being done to help but it would be to another paediatric consultant as he feels that they are specialised enough to deal with situatins like this. Well in James’s experience so far that is certainly not true. In a couple of months we should have more money coming in so will be able to pay for a private consultation for James to try and get things moving. I just felt so fustrated, annoyed and completely let down by the nhs after the appointment. This should certainly not be the case when a child is concerned.
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