|Jul 06, 2003|
Pam from Australia email@example.com
3 children with GERDBenjamin, our first child was born in 1997. He was not diagnosed with reflux until he was 20 months old. We saw numerous Doctors, and specialists, both in the US and Australia, all of whom said there was nothing wrong with our son. Some went as far to say that I was an incompetant first time mother. They did however concede that our son had 'Failure to Thrive', but that was not a function of medical problems. I was told to power pack his food - great if he would eat it - he wouldn't of course.
I am a physiotherapist and I have worked in pediatrics for most of my career. Now I am a full time mum. I thought I had a fair idea how to mother well. I was also aware of what was normal and what was not. Nothing prepared me for what we went through.
Our son screamed all night. He looked at food like it was poison. He could not be consoled and no type of sedation, pain medication or sleep training techniques caused him to sleep. He did not vomit much though - he just starved himself. He got sick with viruses all the time. He got gastro at least once a month and it would last at good 10 days each time. No one would listen, no one would believe us and we were left feeling that we were perhaps crazy after all.
Then one day I had had enough. I said very calmly to my pediatrician that I would not leave his room until I got a referral to a gastroenterologist. I got the referral.
What a wonderful man this gastroenterologist was. He asked me this very simple question 'If I had a magic wand and could grant you any wish you wanted, what would that be?' I replied, 'That my son would sleep'. Then he asked 'If I could grant a second wish, what would it be?' I replied, 'That my son would eat'
With that, and an assessment we were admitted to a children's hospital under the diagnosis of failure to thrive. While there, numerous investigations were conducted including a barium swallow, which showed free and marked reflux, an endoscopy which showed esophagitis, and a bone age study, which showed our son had the bone age of a 10 month old at 20 months. Our son finally had a diagnosis that meant something. It meant that we were not so crazy after all and that he had been suffering with this for far too long. He was medicated with 20mg of Losec (a proton pump inhibitor). He was a completely different child. In a couple of months he wwent from being off the growth chart to being in the 30th percentile. He slept through the night.
When Ben was 2, we had another baby - a girl called Abigail. At 3 months we realised she had the same disease. We went straight to the gastroenterologist this time. Her disease was worse and not well controlled by medication. We have been through the same rollercoaster with her - and it feels like we are down more than we are up. She has had endoscopies and a pH probe test which showed 200 episodes, mostly at night, some lasting as long as 19 minutes. She too screamed all night and hated eating. She is almost 4 and had a fundoplication 5 weeks ago as the losec and then nexium 40mg were not working anymore. I am thrilled to say that we have a different child now - she is so much better.
Believe it all not, when Abby was 2, we had another baby - a boy, Thomas. By this point, my husband and I felt like the living dead all of the time. It was no surprise to learn that he too had GERD. And it was even worse still than the other children. He too went through invetigations confirming this disease. He too is on 40mg of Nexium which is not controlling the disease. He is having a fundoplication on 25th July this year. We can't wait. It is awful seeing him suffer this way. He vomits constantly, hates food and screams all night. When he is in pain, he gets angry and aggressive and it is like he has a complete personality change. We survive by taking care of him in tag. We get about 3 hours sleep each night- it has been like this for almost 6 years now in total. At least one of them will have a bad night on any given night. Some nights all 3 are bad.
We had stopped medicating our first son, Ben, when he was 3 as we thought he was better and had outgrown the disease. We started to worry over the last 6 months as he was displaying some of the symptoms. Remember he had silent reflux. He had an endoscopy 3 weeks ago which showed he has esophagitis. He is back on medication and we have to see the specialist in 2 weeks to see where we go from here.
Parenting has been radically different from what we expected. We feel like we are just trying to stay alive most of the time. But it could be worse. And we are thankful for many things and would not swap having these 3 beautiful children for anything in the world. It is heartbreaking seeing them in pain, but it is heartening that there are solutions. Not perfect ones, but at least there are options. We are gradually getting relief and we hope a year form now life will get a bit easier.
This is our story,
Kind regards, Pam
|Jul 09, 2003|
|I just read your story and I can relate to at least feeling dead all the time. My second daughter was diagnosed with Arthrogryposis a neuromuscular joint disease. In the NICU she began with incoordiation of suck swallow breath. Then she just could not suck enough to gain weight. She had an NG tube to suppliment and eventually she stopped sucking all together at 3 months. Finally we switched doctors and he felt she had milk protein allergy causing inflamation causing reflux as well as poor tone. Now she is taking Prevecid daily, has a G tube and has just started eating cereal by spoon in mouth at 6 months. She is now 11.5 #s we are thrilled. Good luck with yours. Trish |
|Sep 08, 2003|
Pam from Australia firstname.lastname@example.org
3 children with GERD update email@example.comI am writing to update you on how things are with our children. Last I wrote in July, Abby had just had her fundoplication. She is a completely different child. It has been a big success. She is now medication free and thriving. Abby is now 4 and is eating a normal diet. She can swallow meat and all the gagging, burping, vomits, crying at night, food refusal and constant pain are gone. She no longer craves milk and can keep herself occupied for hours. She is relaxed and can even sit down while we read a book without squirming and losing interest. We are amazed.
Thomas is now 2 and had his fundoplication was on July 25th. He too is doing so well. All his symptoms are gone. He is SLEEPING!!!!!!!! He sleeps through the night. It is the first time in 6 years that my husband and I have slept. We are not sure what to do with our new life! Tom is no longer angry and agressive and actually has a calm and quiet nature. He too can keep himself busy for ages and actually loves other children rather than terrorising them. The eating thing is coming along slowly. He had quite a tight and full wrap done as his disease was really bad. He is hungry and wants food which is good. We are just giving him small amounts often so he can cope. He is progressing well on texture.
Our eldest, Ben, 6, is back on the medication - proton pump inhibitors and is much better also. He will have a fundo next year - we have had enough stress for this year. He has gained a kilo since being back on the meds and is concentrating at school.
Life is so much better. For 6 years we have experienced what has felt like a living hell. But things are so much better.
I just wanted to share some encouraging news. There is hope and positive outcomes.
|Oct 20, 2003|
How was the recovery from the fundo? Our baby will be having one next month. She is 9 months and have run out of other options. I have only heard negative things about the fundos. Do they really work? Was recovery difficult - did your children have g-tubes?
|Oct 20, 2003|
Mom of 3 year old Chelsea with severe GERD, 2 fundos and hernia repairs, chronic GI pain, laryngospasms, RAD, subglottic stenosis, chronic congestion, and food allergies AND 4 month old Gavin with GERD and MSPI
Sorry your little one will be facing surgery next month, BIG HUGS!
ONe thing to keep in mind is that a lot of people that have had great experience aren't really on these boards. My son has had two fundo's (a Thal and a revision to Nissen). The Nissen was the best thing we have done for him. He is doing well with his GERD. He is tube fed, but my son also has other tummy issues (dumping and gastric bile reflux).
Good luck and if you ever want to chat, feel free to contact me.
GJWTemple@aol.com 254 791 1789
|Oct 21, 2003|
|Hi Kathy, Pam here. I live in Perth, Australia. There is only one surgeon here who can do laproscopic fundoplications but he is considered one of the best in our country. He does a Nissen - a full wrap. In his opinion he does a full wrap because he believes that is required to stop the reflux long term. He has a 98% success rate of full cure from refluxing. The other 2% have significant improvement but may still require medication. . They are often the complex patients who have other problems, like cerebral Palsy. 90% of his patients can burp after the surgery. Both of my 2 children can, but it took several weeks. There was quite a bit of discomfort until that happened as there was gas build up that they have had to learn to pass out the other end! I am giving you these stats, as it is something you could ask your surgeon. I found it helped us in the decision making process. Not that we had much choice besides surgery though. I am pleased to say it has been a fantastic success and I am so glad we made the decision. The other thing the surgeon told us was that in years to come, if the wrap stretched and was less effective, he could go in again - more than once. If they were too tight he could loosen it also. Not that he has had to do the latter on his patients. He explained that the fundo grows with the child as the wrap itself is the stomach and not anything artificial. What is important, he explained is doing a 360 degree wrap that is stitched well.
The recovery was about 6 weeks until things were more normal. The first couple of weeks were the most stressful - when food got stuck because of the swelling or if they ate too much they had problems wretching. Keep the food amounts small - very small. In a lot of ways it will be easier with the food thing for you as your child is so young and probably mostly on milk and runny food anyway. Our surgeon doesnt use G tubes post op. We managed fine without them. It seems they are using them in the States. I cant really comment, except to say that they seem to help with releasing the gas. My 2 year old is not able to burp a lot so he does have abdominal distention - but not to the point where the doctor thinks he needs a G tube. I know if it gets bad enough they can put one in quickly to release the gas. We decided to keep our children pretty isolated for the 6 weeks of the recovery. We did this to avoid them catching gastro and other illnesses. We didn't want to stress their bodies any more!
I know of only positve stories here in Perth of people who have had their kids done. I go to a support group which has been an enormous help. It seems you often only hear of the bad experiences on the net.
I am so thankful we had the fundos done and actually look forward to going through it with my 6 year old next year. I hate seeing him suffer and look forward to him getting on with life normally. The Surgeon said that with enough force, Abby will be able to vomit - she had a moderate tension wrap done. So if she were to get gastro, she would be able to vomit a little - which is good. Tom however, has had a tighter wrap done as his disease was worse. He will not be able to vomit. I am not looking forward to dealing with this, but am sure we will get through it.
This has been my experience. Life is finally much more normal now. But it was a long and tortuous process getting to the decision of surgery - not an easy thing to decide. You are doing the right thing asking lots of questions. It is good to talk to others, but make sure you speak a lot to the gastroenterologist and surgeon. I ended up getting so confused hearing all the peoples experiences and what I read on the net. It was great to finally talk to the experts who were reputable.
The only thing I would change was getting the surgery sooner!!!!!!!!!
Hope this helps. If you want to email me, feel free firstname.lastname@example.org
Regards, Pam |
|Oct 29, 2003|
FundoThanks for your input. It is encouraging. We have talked with the Ped GI and the Surgeon. The meds are just not working for Elizabeth. She is still vomiting sometimes 20 and 30 times a day. The nights are awful as the reflux is worse. It is obvious that she is in pain and can't sleep.
You are the first person to say that the fundo was a positive action. Even the surgeon gave us all the negative side-effects first. I want Elizabeth to get better and even if she must remain on meds, if she is able to sleep at night and eat without hurting, it will be a success.
The surgeon will determine the type of fundoplication once he starts the surgery. He says most will be the Nissen. He will not do a g-tube as he feels Elizabeth oral defensiveness is not beyond repair. She does turn down food and has a swallowing issue, but she also has a strong desire to eat. The gas and bloat will be a problem, but he feels we can work through that.
If she has a swallow issue because of swelling, he will insert and ng tube. She had one of those for 3 months when she was first diagnosised with reflux. She is still on Neocate formula. And it seems to be agreeable most of the time.
This is my first contact with acid reflux. I have learned a lot about this disorder and know that a lot more needs to be done for infants. The most dreaded phrase has been, "she will learn to deal with it" and "she will outgrow it". We can only hope she will outgrow it and as for dealing with the pain, it is the worst thing in the world for a parent to witness and feel so helpless.
Thank you for letting me vent. I do appreciate your comments. I feel much better.
|Oct 29, 2003|
FundoI am glad you have been able to vent. One of the worse things about this disease is that you can't see it and most people think you make it all up.
Your little girl's reflux sounds severe with the extent of her vommitting. I assume you have had things like pH tests done. Our surgeon did the wrap tighter on our son than our daughter as his disease was more severe. He found the tests useful to help determine the tension on the wrap. As I mentioned before, he trained in the US where full and partial wraps are done. He only does full wraps but will vary the tension of it. He believes the partial wraps are not effective in stopping the children refluxing. This is only his opinion, but is backed up with good outcome statistics.
I am harping on this as I was paranoid about having a Doctor that was an expert at this procedure and would have travelled to go to a good one.
I agree about the oral defensiveness. My kids have had terrible defensiveness but are gradually getting better. An OT may be a help to you if things don't get better over time after the fundo. They can help with oral stimulation techniques -things like tickling their mouth with a little toothbrush etc.
Keep us posted as to how you go
|Nov 17, 2003|
|Pam, Elizabeth had her fundo 2 weeks ago - I am so glad we did it. We still have some issues. She had gas bloat - and that is a problem, but I do believe her body is beginning to adjust and make some accommodations. Already she wants to play and is sitting up and trying to crawl more. She is a much happier baby. So far, she wants to eat and will try a few foods. We try not to force the issue as she isn't crazy about the different textures but our OT is working on this already.
Thanks for being there! Your message was the only positive I read on a fundo and I was envisioning only the worse. She had the full wrap, but no G-tube. I was so glad we were able to forego that. But to see Elizabeth with smiles and she hasn't thrown up in 2 weeks - is just too much for words. Thanks again for all of your support and encouragement. |
|Nov 18, 2003|
ElizabethI am so happy that things are going so well. It is great she had the full wrap. We too have gas bloating, but it gets better over time and our Tom has just started to burp a bit which helps. It is nothing compared to dealing with reflux!!! Our kids have not been mad on texture either, but it is getting better. The surgeon encouraged us to go slow as there is a lot of swelling for up to 6 weeks post op. Lumps can get stuck at the wrap. Our kids returned to a normal diet with lumps and all by 6 weeks. I have heard some children progress a lot quicker.
I am positive your lives will just keep getting better and better from now on and you will start to really enjoy your little girl. Here's to a life of getting a good nights sleep and to a little girl who is pain free and who can live a normal life!
Take care and God bless you and your family.
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