BabyWhispererForums.com
EAT => Food Allergies => Topic started by: Jimbob on March 06, 2007, 17:09:26 pm
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My son was 2 in October and suffers with atopic eczema and multiple food allergies including dairy, soya, egg, peanut, gluten, citrus fruit, stoned fruit, peas, sweet potatoe, squash, broccolli, beef, chicken, shellfish, fish and olive oil. These are his main allergies but there are other things that cause mild reactions. James has never been a great eater but he used to eat small amounts which I got round by just giving small more frequent meals. Over the last couple of months his food intake has slowly deteriorated and is now refusing to eat apart from raisins. He is on neocate advance so he will still be getting lots of nutrients as long as he drinks a decent quantity. Today he has not even had a decent amount of his formula so that is making a bad situation even worse. He was seen by his pediatric consultant 2 weeks ago and he had lost a pound over 3 months. I tried to contact him today but he is in London until Friday. His consultant has said that if he continues to loose weight then he will have to have a biopsy which I did not want at first but I am beginning to think it is a good idea to make sure there is nothing serious going on. I think a lot of his problems are psycological due to the amount of pain and discomfort caused by the reactions to food. The only thing is I don't really know what I can do to help with this problem. If anybody good give any advice or share stories of similar situations that would be really appreciated.
Kelly
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Big hugs - that is very rough. Have they considered FPIES at all? Or an eosinophilic disorder? How have the allergies been diagnosed? Does he have symptoms other than excema? Maybe some of these links can help:
http://www.foodallergy.org/questions.html
http://www.raysahelian.com/foodallergy.html
http://www.apfed.org/ee.htm
You may also want to check out www.infantreflux.org - they have some people that know a lot about these issues - even if your son doesn't suffer from reflux.
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hi my lo has multiple food allergies,milk,soya and reflux.we are currently waiting for blood tests to come back but have been waiting nearly 4 weeks. >:(.our consultant is finally going to send us to a gastrentoroigist after 20 months of misery.i know the nhs is stretched but basically we have been left to sort this out ourselves,although we do get prescription bread and corn pasta and formula.i tried her on lentils last week and the reaction was terrible.i sometimes think she looks at us as though we are trying to poison her in some way,and i can only image the pain some of the reactions cause.she has a very limited diet but what can we do?she also has asthma .
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James's eczema does flare with his allergies but he also suffers from stomach pain, excess wind, runny bowel movements and mucousy bowel movents and his face goes puffy. Some allergies have been diagnosed by RAST testing and other by observation only. The only food that we have not tested from results of RAST tests are peanuts as I don't want to risk that. At one year old under the advice of a dietician we basically wened James again watching for allergy symptoms very carefully. We introduced 1 new food a week, if he reacted to something then we would eliminate it and not try another new food until the week after. After a couple of months I would retry the food to see if he reacted again to make sure it was definately that food that he had reacted to. Even though I feel that I watched very carefully for signs of allergy/intollerance I do sometimes feel that I have missed mild reactions. I will have to see how we go and I will have a look at the links and information given. Thank you very much for your replies they are very much appreciated.
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Had James weighed today and he has lost some more weight. He weighed 12 kg (26.46lb) on 21st Feb and he now weighs 11.86 kg (26.15lb). He is still not wanting to eat and is still not drinking enough neocate advance to compensate. It is really worrying and can't wait for his consultant to get back on Friday. I am not even going to bother taking him to the GP as he is not very good when it comes to eczema and allergies. He said a few weeks ago when I mentioned it to him when James was there for a different reason that it will be due to his age and that he will start eating when he is hungry enough. I was not very impressed but decided that it was pointless arguing about this issue and to just go directly to his pediatric consultant.
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Have you seen an allergy specialist?
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No, his consultants special interest is allergies and allergy related illneses but we have not seen an allergy specialist yet. Our GP has not been helpful regards to James's allergies so I will discuss it on Friday with his consultant and see what the outcome is.
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Sadly, even many of the best GPs aren't so helpful on this issue - it's just not their specialty. Good luck with the consultant on Friday - keep us posted.
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thats us at the moment.i dint bother going to the GP as all she says is its a virus,gastroenteritis or some other thing-i know its not...then she usually gives me paracetamol ::).she has not put on any weight for 6 months now and basically lives on her formula a lot of the time.apparently allergy specialists are rare in the nhs so i am informed but how ill do they expect your child to get?it is hard not to get very frustrated at this time :(.
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Jennyh, I am sorry you are going through the same thing. It is horrible watching this happen. We are lucky in that his pediatric consultant is very good and has already had him tested for cf, blood test for celiac (sp?) and had tests run on his stools plus more RAST test done about 4 months ago. Now the problem has become more severe he is wanting to do a biopsy to see what is going on inside. The only reason that he did not opt for this before was because his weight was actually quite good considering he suffers with multiple food allergies and eczema. This morning he was gagging in his cot and was a little sick, I am not sure if this is because he is not eating or if this is a symptom of what is going on. I can't wait till tomorrow when his consultant is available as this is really worrying me now.
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India is really ill at night time and i regularly have to strip her bed and her.she seems to be reacting to more food too and i think i am going to have to just wait until her next appointment in may and stay with her safe food.her dietitian is not much help either,i just wish i had the spare cash to go private.
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James has been sick once more after gagging and will now not eat raisins today. We are managing to get fluid into him but only small amounts at a time. We are managing to get it frequently though so I don't think he will dehydrate. I am trying to wait untill tomorrow as I don't really want to have to take him to A&E but will if he starts refusing lquids. He still seems to have plenty of energy and he is not sleeping more than usual which is what he does if he has a stomach bug or some kind of virus. He also has no temperature so I am still thinking that it is stemming from his allergies in some way or that there is something more serious going on inside but we will see. Tomorrow can't come quick enough now.
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I'm so sorry for both of you. Hopefully you get some answers for James tomorrow and Jenny for you soon too. Have either of you checked out the forums at www.infantreflux.org? They have some people who are very knowledgeable on food allergies and FPIES. In the meantime, as you said, keep James as hydrated as possible. Have you tried popsicles?
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James has never liked posicles I think it might be the coldness of them. We have even made our own using diluted pure apple juice and he would not have them and he loves diluted apple juice normally so it was not the flavour.
I am going to check the information on the link you mention as I think it will be worth reading before tomorrow.
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hope he feels better soon,hope everything is ok tomorrow
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So I spoke to James's consultant today and told he had lost weight and was not eating anything apart from a couple of raisins and some neocate advance. He said that even though he had lost weight it was not that much and is going to get his dietician to send us an appt to see her so she can advise how to get extra calories into him. The thing is I know how to get extra calories into him if he would actually eat food I prepared for him. We have tried all sorts of things. I would be happy to let him eat pureed food if he would eat it because then at least then he would be getting a decent amount of food in him. I am so angry that he suggested just to see the dietician my poor little boy is hardly eating and he just does not seem to have taken this seriously. I know going from 12kg to 11.86 might not seem that much in 2 weeks but how much does he have to loose before he becomes concerned. The thing that has made me most angry is that he was always really good at seeing him when I rang and his eczema was bad so I guess I expected the same kind of treatment. Maybe its me worrying over something that is not that bad, but it really does not seem that way in my eyes. Any thoughts/info would be much appreciated as I really feel there is nothing else I can do now short of taking him to A&E but they will probabl;y think I am wasting their time and not take the situation seriously.
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Where do you live? Did you post on that other forum? I'm so sorry this is happening...
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We live in the UK, so I guess its typical of the nhs really.
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I wish I were more familiar with the system there to help you. I'd definitely recommend posting on the other site and pushing for that biopsy though...
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Which site as a few have been mentioned and I am not thinking completely straight at the moment.
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www.infantreflux.org (message boards there are great)
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hope you both get this sorted soon.the way i see it they are not bothered as long as the children are not actively loosing too much weight,which i know personally is not the issue at all.i personally think by this age my lo has associated food with pain or she is ill so much of the time she has not got the energy or inclination to eat.i know the doctors are busy but living with a child suffering like this is torture :(
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Jennyh I think your right. The thing is if it is a case where they have associated food with pain then how do you overcome this. Somebody suggested to me yesterday that he could just be acting up like a typical toddler refusing food, but again even if that is the case how do we solve the problem. I even tried not letting him have raisins yesterday and just offering the other which I have been doing evereyday and it made no difference. I have decided that I am going to persevere until Wedneday which is when I will get him weighed again and if he has lost weight again then I am going to insist that something is done. The way I see it is he is either being a typical toddler, he is associating food with his allergic reactions, or there is something else going on inside either way it can't just keep going on until May. He has been eating just raisins and drinking about 3/4 pint of neocate (sometimes less) for over 2 weeks now and it can't stay like that for much longer.
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thats what i would do or ask for a different paed for a second oppinion
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James is still not eating and we are now going to be asking for the endoscopy and biopsies to be done. I have now posted on www.infantreflux.com and it has been very helpful. I have also posted www.kidswithfoodallergies.com which has also been good aswell.
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I forgot about kidswithfoodallergies - they are really good as well. And I agree - I think an endoscopy with biopsies is a good next step at this point. Definitely keep us posted - will be thinking of you.
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I had James weighed today and he has gained 12 oz which is great news. He is still not eating any of his meals though but is drinking plenty of the neocate advance which is obviously why he has gained weight. He is still eating some raisins but he will not have anything else apart from the other day when I managed to get him to have some apple puree. James then suffered with stomach pain, lots of wind and mucous in his nappy so it that turned out to be a negative experience. It is strange really as he never used to have a problem with apple puree and used to be one of his favourite foods.
I am hopefully talking to James's consultant this afternoon and I am just hoping he will take this seriously. I know that it is a good sign that James has gained weight but the refusal of food and the fact that he gets stressed and upset when it is placed infront of him is worrying. Will update when I know more.
Kelly
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Thanks for the update Kelly. I'm glad to hear about the weight gain but since he is living on Neocate Advance and raisins only I would REALLY push for an endoscopy with biopsies to see what is going on. Big hugs to you both.
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i would really push for something to be done too.India is at the point where she does not have any fruit or fruit juice at all.the consultant has said to leave her like that until next appointment.it has made a huge difference and her swollen tummy.wind,rumbling tummy and horrific nappies have eased a lot.combined with no milk,soya,wheat,cucumber etc she is very slowly gaining weight.hugs to you all........Jennifer
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After reading some other posts recently I have started to think that James should be prescribed a epipen(sp?). His reactions are quite bad to certain foods for instance dairy causes eczema flare, puffy face, stomach pain, wind and horrible nappies. He tested RAST positive to dairy, wheat, peanuts, eggs, oranges, fish and soy the only thing out of these that we have not challenged at all is peanuts. James's other allergies/intollerances have not been tested for but worked out through an elimination diet. Now from what I understand things that show up positive on RAST tests means that your child could have a ANA reaction to. So my question is should I be asking for an epipen for James?
Kelly
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It depends how severe the allergy came up on the RAST test (I believe they show up with a number of severity?). I'd speak to your doctor about that but an epipen is only going to help if he has trouble breathing as a reaction. Like I said, I'd ask about that but really focus on pushing for the endoscopy with biopsies and ask about FPIES and EE. Hope he feels better soon.
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I have finally got to speak to James's consultant again today. He has said that whilst he is not too worried about James as he has started gaining weight again now he would like to see him next week if there is no change over the weekend. Well I can't see there being but you never know I guess miracles do happen occasionally. So at least I feel he is actually taking the situation more seriously now which makes me think we are going in a positive direction. I have got a list of things I want to ask at the visit next week.
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I had James weighed today and he has lost 7oz. He had put on 12oz last week which I know was correct as I got them to weigh him twice as I could not believe it. I have spoken to the consultants secretary and he will be ringing me tomorrow and hopefully be seeing James on Friday, if not it will be next week. The secretary seems to think he will fit him in though, but we will see.
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I'm sorry to hear that, Kelly. I'd really push VERY hard for an endoscopy with biopsies so you can see what's going on in there. Big hugs to you and keep us posted.
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That is our plan when we see the consultant.
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sorry to hear that-is he still not eating anything jusy his milk?
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Just his milk and a few raisins mostly. He has also had about 2 spoonfuls of pear puree but then refused it. It did not seem to cause problems like the apple puree did though.
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i would really push for something to be done-i dont think some consultants realise what it is like to live like this every day-hugs to you all..jenny
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James has got an appointment with the consultant at 4.00pm today. Hopefully that will take us in the right direction.
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We saw the consultant and he was worried about James's weight. He said that if he carries on like this it will not be long before he is in the failure to thrive bracket. Having said that he does not want to refer James for an endoscopy with biopsies yet as he believes that he is basically being a typical toddler which is complicated with multiple food allergies. He is getting the senior dietician to see James in the next week or so to see if she can come up with a plan to get James taking enough calories each day for his needs. If that does not work they want to admit him into hospital for a few days to basically starve him until he starts eating food. At the moment I am not sure if this is a good move. I will certainly see the dietician though as hopefully she may be able to come up with some good ideas.
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at least you can see the senior dietician.would starving him not give him more issues with food?i believe no child would really not eat if they could,and as for typical toddler ::).keep in touch..jenny
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Typical toddler? Hasn't he always had eating issues? I would also think that the "starving" method might simply worsen a feeding aversion and would want to make sure nothing medical was going on first. Are you able to get a second opinion?
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Yes James has always had eating issues apart from very early on. James has started taking less neocate advance again and his eczema has flared which is making matters worse. It is not easy to get a second opinion on the NHS as the doctors don't seem to want to go against each other. Having said that I am hoping to get an appointment with James's GP today or tomorrow and basically give him the full run down with facts and figures presented to him and see if he will then refer us for a second opinion. If that does not work then after I have had him weighed on Wednesday if James has lost more weight then we could always take him to A&E and see if we can get a second opinion that way. The only other option is to go private but we have restricted funds at the moment since I was unable to return to work due to the severity of James's eczema. We were almost at the point of me returning to work and then the food strike came.
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James was weighed today and he has stayed the same as last week. I was really surprised by this as he seems to have consumed far less neocate advance the last few days. We have still not got an appointment for the dietician even though I have rang and left a message. Hopefully we will get one soon.
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how is james doing at the moment?hope he is a bit better.......jenny
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James was weighed today and he has lost 5oz in 2 weeks. We had still not received a dietician appointment so on Monday I phoned the hospital. I was told by the dietician that she would not be able to see James any earlier than his original appointment given even though the consultant has requested an urgent appointment. The appointment is not until 17th May so this means that James will be seeing the consultant again before he sees the dietician which was obviously not the idea. I asked her if she could give me some advise over the phone but she said that was not possible as she needed to see him first. >:(
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:o,could you phone the consultant and have a word about this?thats the only thing i can think of.
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James is being admitted to hospital tonight for observation. They are keeping him in for a day or 2 to monitor how much James actually eats and also to monitor his development so they can decide where to go from here. I will update when we get back. James will also get to see the dietician whilst he is there so they can decide if he needs to change from neocate advance to something with a higher calorie content.
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Big hugs and good luck to you and James. Can you push for an endoscopy with biopsies while he is there?
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thinking of you all,they might actually do something now......jenny :)
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James came home on Thursday. James saw the dietician on the Wednesday and she apologised for not being able to see James earlier as an out patient. After a long conversation and giving her lots of information she has decided to keep in contact with us every other week and she will also be seeing him on 17th May. She is also thinking of refering James to the feeding clinic which is run by herself and a speech therapist. She has assured us that James is a priority and that she wants to keep a close eye on him. She has also said that she expects it to be a long process and that it will be at least 2 years before she expects James to be eating anywhere near normal. James's consultant is seeing him on Wednesday and wants to then see James every 4 weeks until his weight improves. They don't want to change his milk just yet but may have to in the near furure. Both the dietician and the consultant have decided that starving James is not the way to go to get him to eat and that it would probably only make things worse. I had never thought it was a good idea to be honest. That is roughly where we are at the moment. Unfortunately James seems to have a stomach bug at the moment and is only drinking small amounts of his milk which will obviously not help the situation.
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hugs :)
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James is not a happy bunny at all today and will only take a few sips of apple juice and water at a time.
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Big hugs to you and James. They didn't want to do any tests, endoscopy, etc? I'd really want to rule out some physical causes first...
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James was at the hospital today to be weighed. He was 12 kg when he was weighed in hospital on Thursday and now weighs 11.4 kg. The consultant said that unfortunately that is to be expected due to him being ill. James is still not drinking much neocate but is keeping all the apple juice and water down which means he is not dehydrating. The consultant is speaking to the dietician again as he wants her to give James something to boost the calories in the neocate advance as otherwise he needs to change James to something else which they are trying to avoid.
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Glad he is at least staying hydrated but I still don't understand why they aren't doing test to rule out physical causes before just boosting calories?
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The consultant says that they have already ruled out cf and coeliac disease and that James does not have the symptoms of any other illnesses/conditions that cause refusal to eat and weight loss. They have only done the blood work for coeliac disease though which I have been told by other sources can be unreliable. Both the consultant and the dietician think that James is refusing food due to the allergic reactions he has had and that due to his age he is now connecting them with food.
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With as many allergic reactions as he has I'd definitely want him tested at least for an eosophageal disorder - have you read up on those? And yes, blood work for celiac can be unreliable - an edoscopy with biopsies is much more reliable.
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James is back to drinking neoactae and eating raisins now. I never thought I would be so happy to see him having these 2 things and keeping them down its great. It does not make our situation seem as bad as it was not that I am going to give up fighting for my son and the treatment he deserves.
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i am so pleased even raisins is something :).we are having quite a time with india too at the moment so i know how hard it is :'(.
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Just reading through and thinking about you both. Hope James is feeling better...
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Thank you for all your replies.
Jenny I am sorry that India is not having a good time at the moment.
Marisa's Mama - Yes I have read up on eosophageal disorder but despite yalking about this to James's consultant he still does not want to do further testing at this stage.
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I'm glad to hear that he's at least drinking Neocate and eating raisins. IMO though, if he ends up in the hospital again (and I pray that he doesn't), I wouldn't leave without them doing the testing. At this age, why not rule things out for certain?
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James was weighed yesterday and is now 12.68kg. I had them weigh him twice as I could not believe he had gone from 11.4kg to 12.68kg in one week. I even waited for the next mum to have her baby weighed to make sure the scales were not playing up. I know the scales at the hospital were right as they weighed him on 2 sets to make sure as he had lost so much weight in less than a week.
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James was weighed on Wednesday and had gone from 12.68kg to 12.56kg. I am not too worried about this as he had such a good gain the week before. As long as he does not keep loosing weight each week again then he will be doing well.
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how is james doing at the moment?hope he is well...jenny
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James lost a little last week. He is now down to 12.5kg. The dietician first of all did not return my calls, then when she did we were out. I have to admit she was very apologetic for not ringing sooner but that did not get my question answered and she is now on holidat untill next week. James has not been weighed this week as with one thing and another we could not make it. That is not really a problem as it is me that chooses to get him weighed each week. I wanted to speak to the dietician as I wanted a way of getting more calories into James through the formula as he is not showing any signs of wanting to eat anything new yet, which I did not expect. I have read on a different site how one mum made the neocate with rice milk instead of water and this helped her 2 year old put on 3lb in 3 months. That sounds great so we are going to give it a try. I know this is not an answer long term but at least it might boost his weight short term.
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I spoke to the dietician yesterday and she is now getting our GP to prescribe duocal for James. We should get the prescription next Tuesday. I am hoping this will boost his weight as we had to stop using rice milk due to it flaring James's eczema up. He has had rice milk before but only in small quantities. Luckily his eczema seems to be calming down quickly since we stopped the rice milk.
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hope that helps :).is he eating any better?....jenny
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James's eating is still the same :(. Hopefully this will at least bulk him up a little as long as he is ok with it. I have read it can be constipating. Will have to see how it goes.
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I hope the Duocal helps but I still do think it's a mistake for the doctors/dietician to be focusing only on weight gain. I still strongly feel he should be seeing an OT/SLP, etc for feeding therapy and also have an endoscopy done to see if there is EE present or any other issues. I don't say this to criticize you at all - you are a wonderful mother who is obviously trying so hard for your son. I say this because I'm frustrated with the medical advice you've been receiving and just want the best for you and your son. And like you said, the Duocal can be constipating... Big hugs.
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Last week James had gone back to 12.5kg before starting the duocal. He has now been on the duocal for a week on a small dose. I had James weighed yesterday and he had gone down to 12.22kg. This was a bit of a shock as I had expected him to gain weight. I suppose it could be too soon to be seeing results. I have also noticed that James has only had 2 bowel movements since being on duocal. We have now got an additional challenge as James has started with hayfever and also a cold on top of that we think so he is now only taking a small amount of neocate. This started yesterday so don't think that would have anything to do with the weight loss. I was wondering if it is possible that James is not tolerating the duocal? He is also very itchy as eczema has flared a little but not sure if thats the cold or a reaction to the duocal. Any advice would be very welcome as our dietician just told me that it is very unlikely that the duocal would cause a problem and just to carry on with it.
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I'm not sure myself but I know you also post over at infantreflux.org and some of the moms on there have experience with Duocal...
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James has not drank much neocate advance onver the last few days. He only drank 8oz yesterday in total. THe only other think he had was raisins and water. I did not give apple juice incase he filled himself up on that. I have not been giving duocal the last day and a half incase thta was the problem but that has made no difference. Last night James was crying in pain on and off for a good few hours. I think he was probably hungry but was refusing the neocate. He finally drank 5oz this morning but that still is not much really. I am hoping to speak to the consultant and dietician today.
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Good luck and keep us posted. Please continue to push them for an endoscopy with biopsies. Hugs to you both.
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hope you get to speak to the docs....hugs....jenny
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how is james at the mo?
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James is still the same really. We are about to trial neocate active as this contains more calcium and iron. It is becoming really hard to watch my son get excited about food one minute and then when you offer it he looks scared and gets upset. The odd thing he has wanted to try has give him stomach pain and mucousy poo. This happened with some special biscuits we got him as he was showing a lot of interest in Olivia's. The worst thing is he seemed to enjoy the 1/4 of biscuit he had.
Thank you for asking how he is going Jenny it means a lot. How is India at the moment?
Kelly
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terrible ???.she has exzema all over her face,reflux terrible,can hardly breathe.i think everything has hit together.
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So sorry to hear that. What have you tried for the eczema so far? It took us a long time to find out what worked well for James's eczema. Obviously as you know some of it is under control due to his restricted diet but we did have it under good control before that. If you want to ask anything please don't hesitate. I know what its like to have a child suffering with severe eczema and when you have other issues aswell it will only make matters worse. I wonder if the reflux is flaring the eczema up I know when James is poorly or gets stressed about anything it flares his eczema up.
Hope things start improving soon, will keep my fingers crossed.
Kelly
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kelly i think it maybe the acid coming up and she is smearing it around her face :-\ .thats my theory anyway.
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hat certainly can't help. Vaseline or epaderm might help as it is a good barrier emollient.
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i am using epiderm and it does soothe her a bit,just a bit down about the whole lot of it tbh :(
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Thats not surprising. I wish I could help you more. Its ashame we can't just wave a magic wand to make things right.
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:)
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James was weighed today and is now 12.66kg (27.15lb). This is good news and means that the duocal is obviously helping him put weight on. The only thing that bothers me is that his poos have been mucousy on and off and smell terrible. I guess we will see how it goes for a while longer as we see the consultant on 3oth July and see what he thinks then. We are also getting some samples of neocate active and flavour sachets to try from the dietician, but may wait until we have seen consultant for those.
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thats great about the weight.the poo situation is not though.at least you see the consultant soon.
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I am just hoping the consultant takes us seriously now as the thing he seems most interested in is his weight. The dietician seems a little more concerned now though as James's eating has not progressed at all. In fact it is worse really as he now looks scared if you offer him food . He is not too bothered about fruit chopped up as finger food but he just plays with it and does not even put it to his mouth.
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We have not had James weighed for 2 weeks as it has clashed with other things unfortunately. We only need to have him weighed once a month at the moment anyway its just me that likes to keep a closer eye on things. James is seeing his consultant on Monday and hopefully the dietician will be there aswell. We are hoping to get things moving. My husband and I are going to push for an endoscopy with biopsies to rule out anything more serious as we feel this has been going on for far too long. After reading lots of information recently we really do feel that this is neccessary. Will update you after our appointment.
Jenny, how is India now? I know she was not doing well last time I asked.
Kelly
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Kelly - I'm glad you're going to push for the endoscopy - I really do think that's crucial. Best of luck and hope James feels well. Keep us posted.
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hi Kelly.i would push for the tests too.hope James is feeling a bit better :-*.
we have some more stuff of the doc for India's face.its dipro base for through the day and then epaderm for baths etc.her reflux is really bad at the moment and tomatoes are a nightmare ::).never mind.
keep well ;).......jenny
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Hi Jenny, is India ok with soy? If not the diprobase may make thinks worse as it is soy based. This was the first emollient James was given and it used to make him more inflamed and itchy when first applied. I asked GP about this and he said that is completely normal. We stopped using this and insisted on something else. When we mentioned it to his paed consultant that he has now he said that it was a clear sign that James was allergic to it and he had also reacted to soy milk. GP's often prescribe this as it is one of the cheaper emollients in the UK. Aqueous cream is another bad one and even cheaper.
Kelly
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thanks kelly,didnt know that.she cannot have soya but do not know if she is touch sensetive :-\ .will keep an eye out.i think gp is sick of me,will not back down though ;)
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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.
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I'm glad they are doing somethimg but IMHO a phsycologist is kind of a waste for this. An aquaintance of mine had to take her DD to one some time ago for similar reasons and it basically was a nightmare - with the person basically interoogating and blaming the parents. Hopefully that doesn't happen to you. I feel so badly that they won't allow the endoscopy, which I do continue to think is necessary. Will be thinking of you.
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We are going on holiday on Friday for 3 weeks, staying with family so it is low cost. We are hoping to relax and recharge out batteries. Whenwe get back I am making an appointment for James with the GP and I am going to insist on a second opinion. In the UK I have heard that you need to go through the GP as they act as a gatekeeper to the rest of the medical professionals. We will have to see what happens but I am hoping to get further than we are at the moment.
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Good luck and have a great hoiday.
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have a nice time :)
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Three things I just have to mention. One is specialfoods.com. If EVERYTHING makes your kid sick, you are needing this.
Also, NAET allergy treatments. And... I got my kids tested for allergies and intolerances using electrodermal testing. It is based on accupuncture points. Very accurate and then you know what to avoid!
Hope you get it all worked out soon.
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Thank you for the information. At the moment I am not looking into alternative treatments though. I think James's situation needs to be takenseriously by the medical profession and then we would be able to start sorting the problem out.
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We had a great time on holiday but we are now back and its time to face reality again. At the moment I am looking on the internet to see if I can work out the best person tohave James refered to. I think if I can prove I have but some research into this myself I may be taken more seriously and that way they hopefully will not refer James to just any old allergist or GI specialist but will be one that has experience in dealing with cases like James.
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Kelly, I just have to mention specialfoods.com again. They sell foods that nearly no one will react to. You don't have to go on the full program. I ordered some stuff because we were bored with the usual. Most are rare and they are all full of nutrients, and easy to digest. The website has suggestions for you too. I realize money is an issue. I hope you can get some nutrients in him. :-*
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Hi sevenbites, we are from the UK so ordering from specialfoods.com would not be possible. To be honest we don't really have problems sourcing food that is safe for James its just that he will not try it. He looks frightened when you even suggest that he tries something and bursts into tears. We now put food in front of him and just let him play with it or remove it straight away if he does not even want it there. He will quite often sit and play with food though. He practices with his fork and pretends to feed his sisters dolls and that is fine by me as it at leasts keeps him in practice with cutlery. Does not like it if food goes on his hands though unless its a potato or something like that as long as it still has peel on. So textures and sensations are definately an issue.
I have booked an appointment with the paediatric GP for Friday with the hope that I can get James a referal.
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Maybe a psychologist could do him some good. Hoping things get better for you. :-*
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Thank you
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good luck for friday :)
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Thanks Jenny. How is India at the moment?
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have been back to dietician and are excluding loads of things again ::).she said to re-introduce 1 at a time like last time as she thinks build up of foods could be making things worse.my only concern is if she is ok with 1 and i start another will we not get the same problem again?i am trying to think it out so much my head hurts :-\ .thanks for asking :)
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I know exactly how you feel. It is a hard process, we went back to basics a couple of times with James. The thing that made it easier for us was that James never got excited by food even when he did eat normalish so did not mind being givenone food at a time. It does become fustrating though when you have a food that is fine and then thenext thing you try causes problems. Good luck, I hope it improves things for India.
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:) :)
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Friday 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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imo thay are taking the michael >:(.no advice i am afraid. :-\
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I haven't read all the posts, so forgive me if you have already talked about this, but have you seen a dysphagia/feeding specialist??? If there are foods that James tolerates "OK" and doesn't have severe reactions to, but perhaps refuses to try because he is just plain scared or is showing alot of behaviors with foods that you know he can tolerate and has liked in the past, a dysphagia specialist might be able to help while you are investigating the medical issues further...
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well last night was the worst for ages.she rolled around and cried all night then was sick at 4am :(.just got off the phone to my mam and guess what,she put chicken gravy on her veg last night.i am hopping mad.i thought of all people she understood.
how is james?
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Jenny, I am so sorry to hear that India had such a rough night. It is awful when people you think understand do something like that. I hope India starts to feel better soon. James actually had a good night, he did not eat any raisins last night and slept so much better. I am not sure if it is because he drank more neocate so did not get as hungry or if the raisins do cause him mild problems. We are going to go for no raisins again today and see what happens.
Taygensmom, James is supposed to be being refered to feeding clinic by his dietician and now his consultant but nothing has happened. It was first mentioned when James was admitted to hospital so they could monitor how much neocate he was taking and to see if he would try anything different in new surroundings. It was also so he could get to see the dietician earlier. It was the dietician that mentioned the feeding clinic at the hospital but does not seem to have followed it up. So that is another thing we are fighting for at the moment.
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I am so sorry you are going through all of this. We went through similar for only 10 months with our oldest, and gave up on Medical Doctors. They could not help me with my Chronic Fatigue for six years, and I was not going to let my DD suffer that long! >:( Most wouldn't even acknowledge food sensitivity. "Food Allergies cause breathing emergencies" Just kept putting her on reflux meds, which not only did not work, but ignored the diarrhea.
Anyway, wanted to send you some hugs!
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I had James weighed yesterday he was 12.98kg (28.6lb) dressed. This puts him around the 9th percentile which is not too bad. He still has the same issues with food so we are waiting until we have seen his consultant on 29th June to see if things finally get moving or if we can then get a second opinion on the NHS. If none of these things happen we should be able to get a second opinion privately in around a months time now although I do believe that should not be neccessary.
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My brother had reflux and low weight gain, it turned out he was missing an enzyme needed for protein digestion. Reflux is a symptom, not the disease. Western medicine. >:( I hate it.
I recommend this book: 5 yearsd without food a food allergy survival manual, nicolette dumke. lots of good info on causes and treatments, diets and recipes.
Hope things get better for you. :-*