Confused!

Hi Glenda,

I have become more increasingly confused as what to do to help my 15 month old daughter. We were told she had silent reflux at about 3.5 months old (when people started listening to me) and she has had chrontic constipation as well. She is on losect and domperidone as well as a combined amount of 21mL of lacative a day. The paed said it would calm down when she crawled then when she walked now he is not sure. We ahve tried taking her off the losect but symptoms became worse.

She now is on a complete dairy free diet and had an endoscope which accoridng to the specialist showed nothing other than she had reflux (something I knew already!). He increased the meds (and I fell gulity to say it but also increased the ever growing cost - which is putting a strain on the family budget - I know it should not be a consideration but it is hard not to think about it). In the last two weeks since the med increase she has had the return of hiccups and more bringing the food up to her mouth and swallowing again (even hours after she ahs eaten). Her stools are now change from rock to clay to playdough to diahorrea (I know this is the claenign out of the back up)then we start the cycle again. I am just lost nothing seems to be improving. I have another appointment with the paed Monday - any suggestions as what I should ask him or suggestions I could make to do next?

** I forgot to add she is also showing an intolerance to soy products such as milk, ice cream etc (not to soy flours)

Thankyou for your time I know this has gone on.

Melinda
[Edited on 04/10/2007]

Hi Melinda,
I am not surprised that you are confused with how things are progressing, especially as everyone is telling you things will get better at a certain age. I went through that too, and found it really devastating to cope with the dashed hopes. I'm sure you have been doing the same as most parents, and holding out until the day that this demon is meant to be gone- and when the day comes and goes, and nothing has changed, it can be really hard to cope with!! It may help if you know that crawling can actually be a time that our bubs get worse, simply because they spend more time horizontal (when we have tried keeping them upright as much as possible)

Constipation seems to be really common with refluxers, and the more parents i talk to, the more it seems to be mentioned. I'm not sure why, as there can be a lot of different reasons for that, like slow stomach emptying, some medications, other medical conditions, feeding issues, and food sensitivities. What is worse, is that constipation can put pressure on the tummy and in turn make the reflux worse, which of course just emphasises the whole issue.

With regards to her diet, from what i can gather, about half of the children who are sensitive to dairy, are also sensitive to soy, i think because the proteins are so similar. Are you seeing a dietitian (who specialises in children with food sensitivities) with regards to working out her diet? This is a really important area, and it is important that her diet is balanced and nutritionally sound. If you aren't seeing a dietitian, perhaps that would be something to talk to the paed about when you see him/her.

It sounds like her bowels are never quite stable- she sounds like she is either constipated or being cleaned out (have been in that situation myself with my kids and it's horrible). Are you talking Lactulose with what she is taking?? Perhaps Movicol (if you aren't already) would be worth asking the paed about, as it seems to be very well tolerated and often very helpful too (trouble is, it can work out expensive too). Lactulose sometimes causes a lot of wind too.

The cost of medical care can be substantial, and while you don't want to have that impact on her care, it is still a reality for most families!! There may be some things you can be doing to offset that.
First up, are your scripts lasting a month? If not, then talk to your paed about getting extra boxes ordered with each script (they cn do that on a special authority via the govt)- and say if you get 2 boxes at a time, it will still only cost the one prescription.
Another way of reducing costs, if you are using Lactulose (and stay using that), it can be purchased on a prescription too.

Since prescriptions add up, there is a safety net for prescriptions- talk to your pharmacist about that if you aren't aware of how that works.

There's a safety net for medicare as well- talk to medicare.

Um, a lot of refluxers qualify for carers allowance as well, and that can make a really big difference to families. The benefits can be a health care card and sometimes monetary benefits each fortnight. (which are backdated 12 weeks from when you apply). A health care card can give you cheaper medications and sometimes doctors fees. Talk to Centrelink regarding this.

Use generic medications where appropriate- rather than using the brand name medication, which is often dearer, use the medication that is covered under PBS (once again, talk to your paed or pharmacist about that).

Another thing is to perhaps see a paediatric gastroenterologist at some stage, as they specialise in gut issues in children. The paed may be doing a fantastic job, but it may help to get another opinion from a specialist paed as well. (you will need a referral to offset costs).

One last thing I can think of, is it might help if you consider joining RISA, as it can help so much to have contact with other parents in the same kind of situation. Most people just don't seem to understand what dealing with reflux is like, especially in an older childre (they grow out of it by then, dont they!??). Reality, unfortunately, is tht there are still a lot of children who are struggling with reflux at that age, which means their family is too. You deserve as much support and understanding that you can get, and a support group may be the best avenue for that. (there is more info on our website, the link is below)

That is a lot to take in right now, so i'll leave it there. I hope you find something helpful in that, and please continue to trust your instincts. It sounds like you're doing a great job, and please don't feel guilty for worrying about money!!

Glenda
Reflux Infant Support Association

Note: This information is general in nature and should not replace the advice or care of your doctor.