What to expect at follow up appointment???????

[bpato]

Hi

This might be a really stupid ??? to ask but I was wondering if you might be able to give me some idea on what to epect at our follow up appointment with the pead. gastro????

We saw him for the first time, after pushing and pushing for it, nearly 4 weeks ago. At this time he put DS on Zotron to see if this helped to improve things.

Before starting the Zotron DS wasn't particularly interested in solids and was still on 5 milk feeds a day. He was also constantly reguritating food and vomiting every night at 9pm. since startin the Zotron we have dropped two milk feeds and are now eating 5 times the amount of solids as before.

The Dr didn't say much about the meds and how long he will need to be on them, just that if he was treated earlier maybe we wouldn't be where we are now.

So what should I expect??????????????

Belinda

[RISA]

Hi Belinda
Please don’t think that any questions you may have are stupid! To be honest, I always felt much better about an appointment if I knew what to expect, and I suspect you are the same. I would always try to work out what my dr would say, and what the course of action would be. As a word of caution, I always spent so much energy just trying to get to the appointment (and counting down the hours til it came) that afterwards always felt like such an anticlimax. No matter what the appointment brought, I always left with the exact same child as I walked in with (funny how that works lol).

By the sounds of things, the Zoton has been wonderful for your son. I’m sorry that it was such an effort for you to get there, especially as he was able to help so much, but good on you for persevering. I’m presuming that his reflux is completely under control now as you haven’t mentioned any other issues. Not only is that exciting, it is proof your instincts were right, and you were on the right track!

There are lots of different ways that doctors can deal with the problem from here, so of course I may be way off the mark with my thoughts. I’ll give it a try though. For some, investigations may be necessary, but because the Zoton has been so effective, there may be no need at this stage. I’m guessing that your doctor will leave him on Zoton for a while, even if he does plan to take him off it down the track (judging from his comment “if he was treated earlier maybe we wouldn’t be where we are now”). Quite often, if there is some inflammation as a result of the reflux, it can take a while to completely heal, and I’m guessing he will want to be sure it is okay before there is any attempt at weaning.

To some degree I think it will likely depend on how well the reflux is under control, and his development. Is he walking yet? Since a lot of refluxers do improve when they are walking (as they are upright for a good portion of the day) that may impact on how he manages your son. If he isn’t yet walking, he may leave him on medications for longer.

I’d imagine he will be happy things are going so well, and he will leave things as they are for the time being. Another thing I’m sure he would be thinking of, is that your son must have been too uncomfortable to eat before. It is quite common for reflux children to associate pain with eating, and refuse to eat as a result. Hopefully, given that he is eating so well now, even if he had associated it with pain in the past, it will be completely forgotten now. He’d possibly like to ensure that stays that way by leaving him as is for the moment.

There are lots of different ways he could tackle the next appointment, and treatment is often a matter of trial and error, so I don’t know how much that helps. He may wish to see you again in a couple of months, or he may refer you back to your gp to take over his care now he is doing so well. He may try weaning off Zoton if all continues to go so well, or direct the gp to try after a set timeframe. It isn’t unusual to try weaning every so often, to determine if the child is ready to cope without medication.

When is your next appointment? I hope it goes well for you. At least now you don’t have to keep pushing to get your son the care he needs, and hopefully you have managed to educate your gp along the way.

Glenda

[bpato]

That's for that Glenda.

Our next appointment is this Wednesday (11th).

DS isn't walking indpendantly yet, but is scooting around the furniture with no problems.

Just another question though, how to you tell if the the child is ready to cope without meds?????????? Is it just a case of the sign of reflux are no longer there????????? I guess my biggest concern is that DS will have to be on meds long term due to the fact that he wasn't treated for soooooo long. Could this be a possibilty????????????

Oh another thing DS still only with eat smooth food. He wont eat anything with lumps in it. He like to much on toast and sandwhich ans biccies , but just sucks on them then spits the bit back out. Any adivice with how to tackle this and start to get him to eat lumpy bits would be great, or should I not push this to much and wait a bit longer??????????????

Thanks again

Belinda

[RISA]

Hi Belinda,
I hope your appt goes well. Don’t forget to make a list of all your questions, and go through them with your doctor. There’s nothing worse than thinking of something you needed to talk about just after you walk out of their office!!

With your concerns on medication, I don’t think it necessarily follows that he would be on medication for a lot longer because he wasn’t medicated til now. It’s a good sign he is doing quite well already, and I would think the doctor will be really pleased to know that. It is so hard to know how long his reflux will be a problem, or he will need to be on medication as they are all so very different. It is one of the things that make dealing with reflux so difficult. That also makes it impossible to tell with any accuracy if your child is ready to cope without meds. It’s definitely not an exact science. That’s sometimes done with judgement or instinct, or plain simple trial an error, and guidance from the doctor. It’s often a time where the child has been stable for a month or more, and there is nothing in the near future that is likely to flare it (like teething, vaccinations due, a holiday that may involve a change in routine or things like that). There is probably no ‘right’ way to do it, and the dose may be reduced, it may be given less, or it may be stopped cold turkey. If you find it isn’t the right time, you simply go back and the medication and start over some other time. Sorry, not too much help there.

With his eating issues (being unable to eat lumps): it isn’t unusual for refluxers to only tolerate purees for quite some time (even 18 months), and many will gag if you try to mix lumps into purees, or spit lumps out. They seem to often have problems with accepting different textures or sensations. It may be okay to wait a bit to see if it changes, especially as he hasn;t been on medication for long, but why not discuss your concerns when you see the paed gastro this week? They may be able to refer you to a Speech Therapist who would be able to offer you lots of strategies.

You may find his eating continues to improve slowly over time, as he stays on Zoton a bit longer, but as with anything else, let your instincts guide you. If you are concerned, follow it up.

I hope you get some more answers at the appt, and please let us know how you get on,

Glenda

[bpato]

Hi Glenda

The appointment went well and we were problem in an dout in 15 mins. I am not sure if that is good thing or not!!!!!


The Dr is really happy with DS improvements with eating solids and the fact that he has dropped the two milks feeds. He has said to keep trying with the lumpy stuff and just offer it now and then , and he will eventually get the ideas.

We are continuing on the Zotron for at least the next few months to see if he puts on some wieght. He also said that he want to have a look down there to see what is going on but tha twill be discussed after we see the respirtory Dr he has reffered us to. He was a bit peeved that we hadn't already see her, and I think he was expecting that to have already happened. he wasnt us to see this other dr to rule out allergies.

Our next appointment is the 6th December so we will hopefully know more about the next step then.

Thankyou for your help.

Belinda

Oh one last thing, how do they go about lookin ginside??????????

[RISA]

Hi Belinda,
I'm really pleased your appointment went well, but he must have covered a lot of ground in those 15 minutes!!

I'm a bit confused about the allergies- are you seeing an allergist separately or is that somehow tied in with the respiratory doctor? I hope you get some answers though, and once again, your efforts to get this appointment were obviously justified. Well done!!

Does your son have a lot of respiratory problems? These are often related to the reflux, though they don't specifically know how.

By 'having a look inside', I would think he is meaning an endoscopy. Did he not clarify that? An endoscopy is the only way I know of being able to physically look inside; they use a flexible fibreoptic tube to look at the lining of the oesophagus and the stomach. If your son has significant respiratory issues as well, perhaps he is wondering if the respiratory doctor would like to be involved as well? Perhaps that is why he is waiting until you have seen them. Is that meant to be organised before you see him again, or he aims to discuss it further at the next appointment?

I hope you get some answers soon, and well done for such great progress. I hope he puts on some more weight soon too,

Glenda

[bpato]

Hi Glenda

He wants us the respiritory Dr as Ds has had a persist cough now for 5 months. He has been on ventolin which helps a bit but hasn't gotten rid of it. He want us to see this DR to rule out asthma and allergies ect so I am assuming that then leaves only the relfux as the cause. He was goign to follow up with the R Dr to get us in before our next appointment.

He wants to look down to get to good idea of what is happenign and the best way to manage it. he hasn't set a date just emntioned that at this stage he was stil considering it.

Hope that all makes sense.

To add injury to insult yestarday Ds got a bad case of gastro adn have been vomiting since yesterday morning. We seem to of slowed down now so fingers crossed were are past the worst.

Thanks again for the help and advice.

Belinda

[RISA]

Hi Belinda,
Sorry to hear he hasn’t been well. Nasty!! Any illness can flare reflux too, just so that you are aware if it takes him a while to pick up again. I hope nobody else in the family gets it now!!
Good luck with getting all the other things sorted out too. From our experience it all seems to be tied together- having a cough is common with reflux, and also with asthma, and they both can flare each other. I hope you get some answer though. It sounds like you are finally getting somewhere,

Glenda