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[baylees mummy]

Hi I Have Posted Here Before About My Bub A While Back. I Have Since Encountered A Few More Problems.... My Bub Is Now Nearly 8 Months Old And I Have Been To Se A Very Good Ped Gi About His Issues, Well So Called Good Gi. He Has Come To The Conclusion That He Is Averted From The Bottle With No Current Gi Probs And Needs His Ng Tube In Long Term And We Are Now Facing A G Tube. I Am Not Satisfied That He Is Not Haveing Any Gi Problems And That It Is Simply A Aversion. He Is Still Very Refluxy And Vomits. He Also Does Not Tolerate Any Solids At All. Hen I Give Them To Him He Will Vomit Them Up Any Where From 5 - 18 Hrs Later. He Also Vomits Blacky Brown Stuff In His Vomit Occasionally Which Has Been Confirmed To Be Blood But They Dont Know Where It Is Coming From And Blame It On His Ng Tube But He Had No Ng Tube In When It Started And For A While After It. He Also Has Very Dark Black Oily Poops All The Time. Sometimes 8 A Day Someties None. He Is On 1200 Mls Of Neocate A Day And Still Has Not Put On Any Weight In A While. He Will Gain Sometimes And Then Stop Or Loose With No Change To Anything. I Also Have Another Problem... I Want To Take Him In To See Another Gi To Get A Second Opinion But Dont Have The Money To Search For A Gi Who Would Be Interested In His Case And I Cant Drive With Him As He Gets So Worked Up He Gaggs To The Point Of Turning Blue And Theres Not Always A Place To Pull Up Or Someone To Go With. I Jus Dont Know What To Do Anymore. He Doesnt Sleep Is Alwys Sick With Some Resp Infection And Hes Had Double Ear Infections For 12 Weeks Now. His Gi Is Not At All Concerned Adn Thinks He Is Ok. Please If There Is Anything U Can Suggest I Would Love To Hear From You. I Am At My Witts End. He Is On Neocate Feeds And Zantac 2mls Twice A Day. I Have Probably Left Alot Out But Feel Free To Ask. Thanks In Advance... Tamika

[RISA]

Hi Tamika,

I'm sorry that things are still really difficult for you. I am a strong believer in trusting a mother's instincts, so please continue to trust in yours. I think it is a good idea to get another opinion from a paed gastro. It is really important that you feel comfortable with your doctor, and have faith in them, so it is worthwhile making sure.

It does sound like his reflux is still very much an issue, and especially as you think it still is. Perhaps it would be worth asking whether trialling other medications would be helpful. Sometimes drs use Zantac in combination with PPIs such as Losec, Zoton or Nexium, so that may be something you could ask them about. Have you tried motility medications as well? There are several different ones that could be tried, so that is a possibility too.

Perhaps you could ring around some paed gastros to find out if they'd be interested? That would at least be a cheaper option, and as you say, easier than travelling around to see them to find out.

I guess another option would be to see an ENT specialist, especially given his long standing ear infections. That might give you a totally different perspective, and they also deal with reflux. It may also be worth researching LPR- laryngopharyngeal reflux, or Extra Oesophageal Reflux which may give you more idea.

We have families in our group who tube feed their children, by n/g tube and by g-tube, so that might also help if you talked with them. Just to have support from families who know what you are going through, to some extent, can make a big difference.

I don't know how practical all that is, but I hope it helps. Hang in there, and keep pursuing it until you get the answers you need. I know it seems unlikely, but life does get better, and you will eventually find something that helps.

Glenda

[baylees mummy]

the gi i am seeing for bay will not mix the meds together and no meds for reflux have ever actually worked. we have tried zoton, losec and zantac now and we have never seen much change.he has been on high doses of 30 mg day and low doses of 5 mg day with no noticable change really. i have discussed possible delayed gastric emptying with gi but he says no its the aversion to the bottle.... i dissagree because he has never taken the amount he needs since birth. i have called around to see if i could speak to a pead to see if they were interested in bays cse but they wont talk to me they say make an appointment. do you know of any gi that would talk to me? i have been meaing to make an appointment with an ent but want to know for sure they will be interested before spending a pile of money and encountered the same problem that i had with searching for a gi... thanks for the research tips i will definetaly have a look... and thanks for your help again.
tamika

[RISA]

Hi Tamika,
It sounds like you have thought of most things anyway. I wish I could help, but even though your dr doesn't seem to understand your concerns, I think it is really important that you pursue it. I am a strong believer in trusting your instincts, and know that any time I didn't, I ended up finding out I had been right all along.

Perhaps it would help to trial Elecare, rather than Neocate? Sometimes one is tolerated better than the other, so that may be an option if you haven't tried it before.

It might also be worthwhile keeping a diary- record everything that is going on- his behaviour, his sleeping, any obvious refluxing, vomiting etc. Are his feeds bolus or continuous?

Have you tried altering when he has his feeds? and the rate he gets them? That would of course need to be done in conjunction with a dietitian- have you been seeing one? Also do you see a speech therapist? Have you discussed any of his problems with them?? Perhaps they can help by writing a letter explaining the issues from their perspective?
Also, do you see a paed allergist? Considering all his food issues, that is probably necessary too- and the waiting lists are very long, so it may pay to make an appt now, and keep looking for answers with a dietitian in the meantime (one who specialises in food intolerances)

As for finding an ENT or paed gastro, I wish I knew how, but perhaps ask around on the group and see if you can get some ideas of who may be helpful?? Regarding the ringing around, perhaps you could question the receptionist as to what the specialists area of interest is? Some are more interested in food sensitivity issues than others, some may be interested in gut motility/delayed gastric emptying, and perhaps that is another way of deciding before you go. With an ENT, perhaps find out if they have an interest in treating reflux children?? I'm not sure, but it may be worth trying?

I don't know if any of that is helpful, but I hope you get some answers.

Glenda

[baylees mummy]

thank you very much and u have been very helpfull. i will do the ringing around and ask the receptionist if there is any special interest the particular specialist is interested in. if you can understand that lol. i have trialled elecare before and found neocate to be the better one. how do i go about seeing an allergist? referral from GI? i have also found out recently that there are no paed GI except the one i am seeing now to see privately the rest are public through the hospitals. i have kept a diary before and showed gi but he scanned it and said nothing... he is on very slow bolus through day time at 50 mls per hour and continuous in night at 50 mls per hour aswell. we do not see a dietitian or a speech therapist but we do see a speech pathologist and she has sent away faxes directly to gi's room tellig him how bad it is and he says nothing to me about them. i must sound like the worlds biggest whinger but its all true and i have no idea what to do atm so im just getting opinions and help from anyone who will listen... he is scheduled for appointment with surgeons on august 23rd to discuss his g tube now and im getting a little scared. its actually happening and i cant do anything to stop it... he has major erosion in his nose and throat from the ng and it has to come out... thanks for listening to my venting lol... tamika.

[RISA]

Hi Tamika,
Does the speech pathologist consider the issue to be aversion or stemming from reflux?

have you tried making a list of all your concerns, and writing them down so that you can go through them at an appt with your paed gastro, including going through everything the speech pathologist mentions? Ask him directly why he considers the issue to be food aversion rather than uncontrolled reflux, and put forward your reasons very clearly about why you consider them to be triggered by reflux- his responses, his pain etc.

I'm surprised to hear that there is only one paed gastro who works in the area privately. I guess it doesn't really matter though as you still have the option of seeing a range of paed gastros through the public system. It sounds like it would be very helpful to get another opinion at the very least.

Regarding the surgical appointment- no matter what the cause of his eating refusal is, whether it is reflux or aversion, as you say, the n/g tube HAS to come out. I know the idea of a gastrostomy tube can be overwhelming, but you may actually find it helps him feel much better. A lot of the parents who do go through with getting a permanent tube say that it is easier. Would you like to talk to some of our tube feeding mums? We have an online group for members that you can discuss those kinds of things with, different to our main reflux group- it's a group for tube fed/fundo kids, and that might help you too.

Also, talk to the surgeon about your concerns- he is also a doctor and may be able to give you another opinion about what is going through. There may also be tests that he can order that will help you find answers.

To see a paediatric allergist, you can get a referral from any doctor. From a specialist the referral only lasts for 3 months, but from a GP, it lasts for 12 months. Unfortunately, there is an enormous waiting list for paed allergists, but you may be able to talk to the receptionist about getting in quicker if you explain what is going on.

You are NOT the world's biggest whinger- you are a mum who is worried about her baby, and you are trying to do the best thing for him!! That is to be expected, and I think you need to keep telling anyone who will listen so that you finally get the answers you need. Please keep trusting your instincts, and keep talking to your doctors, and I hope you find some way of getting support from your doctors.
You are doing a great job too, and I am sure you will eventually figure out what the best avenue for Baylee is.

I hope that helps
Glenda

[baylees mummy]

thank you so much for all that help. i have spoken to the speech pathologist and we are seeing her today before the surgens appointment. apparently she has asked the GI involved with bays gastrostomy to do some tests, her name is Looi Ee i think and shes aparently one of the best in qld so i will be asking her alot of questions today. i am going to get an allergist referral from his GP soon aswell. baylee has been spitting blood again lately and having cyanotic episodes while crying and while lying on his back so i will be discussing that with the GI at the surgen appointment. i have decided to give my private GI the boot for now and try and get in with the GI i will be seeing today. She sounds much nicer and she did bays endoscopy a while back. so for now thanks alopt for everything and i am feeling a little better atm and thats thanks to you so cheers. talk soon tamika.

[RISA]

Hi Tamika
I'm glad that I was able to help. I hope you get some answers and he feels more comfortable soon,

Glenda

[baylees mummy]

hi, ok well the appointment went well and the speechy said she thinks bay is aspirating his vomit and is not swallowing all his formula and he is at risk of aspiration with oral feeding so she is getting a modified barium swallow set up for him. she also talked with this new GI i saw today and the GI wants to do a fundoplication with the gastrostomy. she also wants a ph probe done and an empedence study or something?? she has put bay on domperadone and hopes his formula intake will up and the vomiting decrease. i am so happy we are finally getting somewhere and he is getting the care he needs. we are also seeing a dietician soon so we can sort out maybe getting his fluid level down and his calorie intake up in his formula and adding a thickener to it so he doesnt aspirate so often. she thinks the aspirating is the cause for the many chest infections hes had. thank you so so much you dont know how much you have helped and i cant thank you enough!! talk soon xxx tamika

[RISA]

Hi Tamika,
I'm glad the new dr is listening to you, and that they are taking your concerns seriously now! Yeay for the speechie too!! I hope the tests give them the answers they need. An impedence study is a test that will test pressures in the gut, and will pick up both acid and non acid reflux. As a comparison, a pH probe only picks up acid reflux.

Don't forget RISA has an online group for kids having fundos and tube feeding, so it may be worth joining that too.

Glenda