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Post by frosthf on Nov 30, 2003 13:41:00 GMT
Hi! Great to see we have a forum at long last!! Hope you are all keeping well - we're not doing too well at the minute. Jack has been unwell for some weeks now, and has been diagnosed with nasty viruses left right and centre. Thankfully nothing bacterial that required anti-biotics. Anyway, Jacks reflux has also been causing some problems for a while. He is currently on Ranitadine and metoclopramide. His Ranitadine dose was doubled in September, and although things had been looking good the old symptoms are starting to show through again  . Vomiting usually occurs in the morning, and starts with Jack getting really hot and flushed, then getting very sleepy, vomiting for England and then his temp drops quite dramatically. He sleeps for a couple of hours and then wakes up as happy as larry - as if nothing's happened! Jack sometimes vomits after meals, but not a lot and certainly not like the vomiting I've mentioned above. We're not currently under any consultant for this problem. Reflux was diagnosed by Addenbrookes in Cambridge when Jack had been admitted for some tests about 5 years ago - he was given a reflux probe test, since then all medication has been controlled by his Paedeatrician. Is it time that I asked for a refferal to see somebody who specialises in this sort of thing do you think? If anybody has any helpful information or has a child who has the same sort of symptoms as Jack, then please get in touch and restore my Sanity!! Thanks Heidi Frost xxxxxxxxx |
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Post by colles on Mar 27, 2004 12:07:49 GMT
Hi
My son Ethan had all those symptoms and was on 'domperidone' for a year but that stopped working so finally after two more reflux investigations we where advised to go for a gastrostomy tube as you can understand we had our concerns about this, But since he has had it done it has been Brilliant, he is very rarely ill with chest infections which he suffered from continuously with before hand, we did have trouble with night feeds but we stopped them and only have daytime feeds now, Ethan is into his 3rd year with his tube and has just had it changed to a entrstar peg.
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Post by caroline kelly on May 14, 2004 6:28:31 GMT
hi i have a son declan who has just turned 2 and who has lissencephaly, declan has suspected reflux but all tests have proved negative but a mother knows best. declan vomits on a regular basis which is often painful they started him on domperidome and ranatidine but this actually made the matter worse!!!!!! so b ware. he nowis going for a gastostomy in a couple of weeks so watch this space.
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Post by emma poole on Jul 18, 2004 17:34:22 GMT
hi my son montell is two now he wil not eat soilds i found that he had reflux he is now waitin to have a peg so we can feed him in to his tummy he is really underweight and it is all so horrible to see him cry in pain with a bad tummy  he has lissencephaly and gross microcephaly this is the first time i have read about others who r goin though the same thing as us . i am twenty four and also have another son who is four it is just the 3 of us TEXT |
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Post by Thomas on Sept 13, 2004 8:03:39 GMT
Hi all,
Our son Henkie also suffered with reflux with the resultant vomiting episodes. We also went the whole route with various medications, with hardly any success.
On my own initiative I stopped the meds ( related to the reflux issue of course ) and started giving him Gaviscon, the liquid variety. In our case it worked very well. I *think* the difference between using something like Gaviscon and the other meds is that Gaviscon does not attempt to regulate the acid production like eg. Zantac, but rather created a protective layer and a kind of "plug" preventing the reflux of the stomach acids/food into the oesphagus. He also has a mic-key which helps a lot with the administering of his meds, including the Gaviscon.
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lori
New Member
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Post by lori on Sept 22, 2004 2:57:21 GMT
Hi there my name is Lori and my daughter's name is madison. She is 6 months old and has lissencephaly. I am also a single mother. Being a single mother is tough at the best of times but having a special needs child makes it even more harder. Madison is in the hospital right now and is waiting to be transferred to Children's hospital in the next couple of days. They are going to do a surgery for her reflux called nissen fundoplication. With just inserting a g-tube the child is still at risk of aspirating and getting pnemonia because of the reflux. If Montell's reflux is bad you need to ask about this surgery if medication is not working. From the responses I've gotten about the nissen fundoplication and g-tube surgery all of the kids that have had it done are doing so much better. It's made a remarkable difference in their lives. What other kinds of problems does Montell have? Where do you live. If you ever need to chat feel free to email me or chat on msn if you have msn messenger. My address is softballgirl4me@hotmail.com. If I do not reply back right away it is because I am with Madison at the hospital. Stay strong.
Lori Taylor-Vancouver BC- Mom to Madison-6months-with lissencephaly.
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lori
New Member
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Post by lori on Sept 22, 2004 3:05:49 GMT
Hi Heidi,
My daughter Madison is 6 months old and has reflux. Right now she is in the hospital awaiting surgery for a g-tube and nissen fundoplication. You should ask your pediatrician about the fundoplication surgery. It's sounds like Jack's reflux is pretty bad. Madison was on Ranitidine. It stopped working for her. Now she is on Motillium and Losec. Does Jack have a feeding tube and if so what type. I have had alot of responses to my question about nissen fundoplication and g-tube surgery and everyone says yes it is a tough surgery for the child to go through but it has made an amazing difference in their child's life. Their health is so much better. No more aspirating or pnemonia and less dirty clothes to clean because of the reflux. We are our childrens voices and sometimes these doctors don't wan't to listen. I have learned not to take no for an answer and to be pushy. Enquire about this surgery and let me know what the doctor has to say. Good luck.
Lori Taylor-mom to Madison-6 months-lissencephaly.-Vancouver BC
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Post by claire04 on Oct 10, 2004 9:10:30 GMT
Hi Heidi, My name is Claire and my daughter Imogen also has problems with reflux. She also is on domperidone at the maximum dose for her size i give it to her before each feed. She is fed through a button in her tummy but have got to say since the op to put it in her reflux has in fact worsened. I find the best way with her is to feed her via a pump over an hour and after the fed leave her sitting up for an hour without moving her. This way most of the fed and gone out of her stomach withthe aide of the domperidone before each feed. I have found that u are much better feeding the child in a sitting position therefore the fed had to go down but even this has its downside if the child coughs during there feeds. But i have to say since Imogen got her nt tube out she has had less and less chest infection. I would recommend a G tube or button. But as already said these dont always gp without problems Imogen had one put in 2 yrs ago and it got badly infected and fell out. She had it put back in in june and this time its been successful.
Love Claire and Imogen
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Post by feelsalone on Feb 15, 2005 18:13:01 GMT
I realize that you posted your message a while ago, and i dont know if you have gotten anything done with the reflux, but my daughter had a procedure called a "Nissen Fundleplication" where they basically wrap the esophagus around the opening of the duodnum (opening of the stomach). they dont close it off but they do make the opening smaller. She has had no vomitting, hiccups, acid marks in her mouth--nothing. It has been a God send to us. good luck in whatever you choose.
Jen
htnhvy1@yahoo.com
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Post by John Murphy on Mar 5, 2005 15:10:16 GMT
Hi
I've been suffering from hereditary reflux disorder for years
GORD - am currently taking low-dose Nexium (20mg) which works quite well when things are a bit rough. Less costly than the alternative Losec which I used to take. I found losec a lot more effective though and generally got releif from symptoms in aout half an hour. Would advise you definitely consult a medic as to dosage and possible presciption.
Hope this helps!
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prospective mom for Ishmil
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Post by prospective mom for Ishmil on Apr 24, 2005 3:02:12 GMT
Hi! My name is Kathy. My husband and I are considering adopting a 6 year old little boy with lissencephaly. I was browsing through your contact group and felt I should respond to the conversation about reflux. We already have one special needs boy we adopted 4 years ago named Thomas ( monosomy 6, Trisomy 11 chromosone abnormality) He was diagnosed with reflux disease in March 2004/ NG tube, NJ tube, Prevacid, then finally the nissen-fundalplication surgery. Still had reflux. Formula was changed several times. In November 2004 it was so bad he wasn't able to hold anything in his stomach for three days. He looked terrible . He would cry and thrash if we tried even pedialite. We had had good experience in 2001 and 2002 with raw goats milk. Found a farmer willing to help. What an answer to prayer. From the moment the milk started going into his g-tube. He calmed down. That was Thanksgiving weekend. Thomas no longer has to be on Prevacid, no longer on the sugary formulas, the goats milk is so much better. We do have to supplement it with blackstrap molassas , liquid baby vitamin drops and crushed folic acid tablets, and stage two baby food. (carrots or spinach). Thomas has gained 13 lbs. in 6months on this regimen. This is not readily accepted by some of the medical profession. The results speaks for itself. We unfortunately had to go through being reported by our doctor to the Department of Children and Family for medical neglect. After the caseworkers visit it was confirmed that Thomas was doing better and we were able to find a doctor who would stand with us on "what works". I hope this will help someone. Let me know if I can offer any further information. email address ; thekingscleft@bellsouth.net
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Post by goat emotion on Mar 3, 2008 8:58:22 GMT
hi i have a son declan who has just turned 2 and who has lissencephaly, declan has suspected reflux but all tests have proved negative but a mother knows best. declan vomits on a regular basis which is often painful they started him on domperidome and ranatidine but this actually made the matter worse!!!!!! so b ware. he nowis going for a gastostomy in a couple of weeks so watch this space. |
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. Vomiting usually occurs in the morning, and starts with Jack getting really hot and flushed, then getting very sleepy, vomiting for England and then his temp drops quite dramatically. He sleeps for a couple of hours and then wakes up as happy as larry - as if nothing's happened! Jack sometimes vomits after meals, but not a lot and certainly not like the vomiting I've mentioned above. We're not currently under any consultant for this problem. Reflux was diagnosed by Addenbrookes in Cambridge when Jack had been admitted for some tests about 5 years ago - he was given a reflux probe test, since then all medication has been controlled by his Paedeatrician. Is it time that I asked for a refferal to see somebody who specialises in this sort of thing do you think?
he has lissencephaly and gross microcephaly this is the first time i have read about others who r goin though the same thing as us . i am twenty four and also have another son who is four it is just the 3 of us TEXT