Freya's Mum's Page

Hi, Sounds like you've had a rough time with Freya. The comment from your Health Visitor seems to be common of most Health visitors - uninformed!
I just hope the endoscopy gives you some answers - my son Sam had an endoscopy about 2 months ago, he also had a Ph test which showed he refluxed 43 times during the 20 hr period. This was whilst he was on his medication so they estimated he would have refluxed about 100 times. He is 2 1/2yrs and we were asured he would have grown out of this by now. His endoscopy also showed some inflamation of the oesophagus and stomach (to be expected with reflux). He also had biopsies taken (normal procedure) and they discovered Sam has hypolactasia - no lactase enzyme and therefore completely unable to digest lactose. The positive outcome is that we have some answers and I really hope you do too. All the very best. Helen

Hi Karen,
Had a crazy week! Sam has now been put on Omeprozole (10mg) and it seems to have had an adverse effect. He has been in pain, been sick, hasn't been sleeping and generally irritable. We are all exhausted and frustrated once again. I have seen GP (can never get hold of the Paediatricians!) who agreed he can go back on Ranitidine instead but to increase the dosage. Fingers crossed things start to improve...!
Can't believe your Health Visitor was struck off, it is quite shocking how useless they are! I am a Nursery Nurse and I have experienced this before in a professional capacity but it still did not prepare me for the utter negligence of some Health Professionals.
After Sam's endoscopy he was not happy! The main reason for this was because he had the PH probe inside him with a wire coming out of his nose & stuck to his face attached to a computer! He was NOT impressed by this!!! If Freya only has the endoscopy then she will be much better than this. He did come home that evening, and he was generally ok. His throat was a little sore as they spray some sort of alcohol in their throat before the camera passes through. He also had a bit of extra wind (bottom end!!) as it pushes air through the system.
I have to admit taking Sam off his meds did make him worse, I am desperate for him to be drug free but there is already some damage to his oesaphagus from the acid so I guess we need to keep that to a minimum. His reflux has improved as he's got older - the pain improved at about 15 months. However the sickness is still prevalent & very random. He can still have pain & irritabilty about once or twice a week. He now tells us when he's going to be sick and likes to help clear up! Poor boy, he knows no different!
It's a worry that Freya vomits blood, what have they said about this?
I know what you mean about other people's comments, they have no idea what we live with, but why would they? I have turned into a boring person who is only able to talk about my son's health!!! No wonder my friends tell me that he looks well enough and not to worry!!
Take care Karen, Helen

Hi Karen,
Well a better few days in this house - you would think that at 2 1/2yrs we would have had plenty of experience with Sam re his reflux but we still make mistakes! We moved him into a bed (no more cot!) but forgot to put his wedge in! We couldn't work out why he kept waking up screaming in pain 3 or 4 times a night. He also gets a little reflux cough so we knew what the problem was. Anyway, finally my brain started to function & I realised the wedge is still very much needed! Re the Omemprozole, maybe we should try it again as everyone seems to say it's a better drug. Plus it works in a different way as is more likely to minimise damage. He is back on 4ml Ranitidine for the moment. The Dr's always ASSURED me over & over again that Sam would grow out of reflux (in fact, the first Paed that we ever saw said to me "no child under my care has ever still been on reflux medication past 12 months"!) Unfortunately we moved house when Sam was 11 months old so I never got to throw it back in her face Finally when Sam was 18 months they had to admit that maybe he wouldn't grow out of reflux after all. Poor Freya is on a massive dose of omeprezole, no wonder she seems drugged up. Sadly it does sound like there may be some ulceration, did anything like that show up on her barium? Well, I hope Friday brings you some answers and it isn't too stressful for you. Sam was in theatre for about 45 mins so even though it feels like a lifetime it really is a quick procedure. Let me know how you get on Karen. Helen

Hi Karen. Been wondering how it went yesterday. Hope you are all ok.
Helen

Sounds like it wasn't too terrible for you & Freya recovered quickly, I'm sure Sam would have done if he hadn't have had the Ph probe in as well. Did you get any pics? Our gastroenterolgist talked us through the photos that they took and we could see the inflammation. Sam is very proud of these photos....he shows them to everybody!! You get the results fairly quickly then, I hope its the news you are hoping for... Sam is back on to Ranitidine (double the original dose) until the GP hears back from the consultant about what to do about the Omeprezole. His reflux has not been under control for a few weeks now and he has had quite a lot of sickness again. I feel bad about taking him off all the meds, I now realise the importance of limiting the damage internally as well as keeping Sam comfortable.
Do you have much support from friends & family Karen? Do you leave Freya with anyone? I have found this quite difficult as I am so aware of the reflux triggers with Sam and I'm sure a lot of my friends & family thought I was (and possibly still AM!) paranoid! Sadly I almost feel pleased when Sam is sick in front of them just to prove I'm not making it up!
Well, hope Freya continues to be happy - yes, those hiccups are a common occurance with Sam too!