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Jonahsmom
04-17-2009, 08:21 AM
I didn't know where to put this thread...in the Welcome Center, or here. I am brand new here, and currently my son is decannulated. We're trying to keep it that way, but it's looking more and more like he will need to be re-trached....

Anyway, we were in Cincinnati this week for a repeat sleep study and scope. Jonah does have pretty severe reflux. We've been on Prevacid twice a day for over 2 years. Yesterday's scope still showed evidence of swelling, redness and irritation. Since it was an ENT scoping him, she wants his gastro doc to weigh in on this. Which means another trip to Cincy and another sedation and another scope....sigh. Anyway, anyone else's child not seem to respond to the reflux medications? The thought at this time is to scope him again, confirm this is from reflux, and then do the Nissen. We may or may not also place a g-tube at that time...that's a different story/decision altogether though...

If he is still refluxing stomach contents, and probably aspirating them too, then it makes sense that his sleep/oxygenation would be affected, right? We're hoping to address this and get his apnea under control. His last sleep study showed 415 obstructive events, with sats dropping into the 70's. Currently he is on a bit of oxygen, doesn't stop the apneas, but helps with the sats....

So, tell me about the Nissen. I understand it's a major surgery, with some major postoperative pain. Anyone attempt this in an older child (Jonah is 12 and has Down syndrome)....

Thanks!

Anji

Niff
04-17-2009, 08:52 AM
The main thing you have to remember about reflux meds is that they're not going to stop reflux. They just change the acidity of the gastric juices so when a child (or person) does reflux, it's less harmful to their esophagus and potentially their airway. Some kids hold their breath when they're refluxing, causing them to drop their sats. Other kids are just spitters and have no problem with breathing while refluxing. Judging by the airway issues Jonah has (coupled with trisomy 21), I'd think that Jonah is having issues with breathing that are secondary to GERD and that a nissen would be beneficial.

We were discussing getting a nissen done with Mackenzie but ultimately our peds surgeon said it wasn't necessary. Just as there are patients who get the procedure and things work out spectacularly, there are also patients who don't respond well. I was told that in particular cases where the the patient has some form of neurological/cognitive issues, the patient is more likely to have issues with retching and eating. (I have heard from other parents on the board that there are meds to help with retching.) Sometimes a patient literally cannot PO feed after a nissen. One of our nurses told us that when she had hers done, she couldn't eat meat for 4 years and she was having to chew her food to a fine puree before she could swallow because her nissen was so tight. Also with a nissen, you have to keep in mind that it doesn't allowed for any sort of burping. You will more than likely need to vent after feedings and might want to inquire about the use of Farrel Bags.

Has Jonah had any problems with eating before? If not, I'd opt not to get the g-tube until after it was decided he absolutely cannot sustain himself by oral feedings. You do risk having to have yet another surgery (albeit minor in comparison), but PO feedings are such an important part of development that I would really hate to give that up.

As with anything, there are positives and negatives to each surgery and procedure. You just have to figure out what will work for Jonah. :) Good luck! I'm sending positive vibes for a routine scope without complications. :hug:

lynn
04-17-2009, 10:21 AM
Alot of times with reflux, you may need to try different meds in different combinations before one that works can be found. Did Jonah have biopsies done- could it be eosinophils (?sp) causing the swelling and redness?
Have you checked the boards on Parent2parent [URL="http://www.parent-2-parent.com/forum"] there is alot of advice on feeding issues/ eosinophillic disorders/ reflux

JacobKaden
04-17-2009, 11:21 AM
We have 2 different medications, one to decrease the acids in his stomach - losec 2x/ day and 1 to move the food out quicker - domperidon 4x/day. I understand domperidon is not legal in the U.S., but there must be an equivalent. I know prevacid does the same thing as the losec, as we used to be on the prevacid. Perhaps he needs something to move the food through his stomach faster.

Sorry, I know nothing about the nissen. Good luck getting this figured out. When Jacob's reflux was not being managed, he had a huge number of apnea spells while sleeping. The meds keep it completely under control.;)

Ainsley's Mom
04-17-2009, 01:25 PM
Ainsley had reflux although not acid reflux. She coughed a lot and the coughing brought up stomach content which would frequently cause her to vomit. Her upper airway was completely swollen shut from it. Prevacid did nothing, nor did Zantac. She had the Fundo in October and her airway swelling has gotten quite a lot better although it hasn't resolved completely. We had none of the bad side effects you hear about with a fundo and she has not vomited once since the surgery. We had it done with an open incision and the surgeon wrapped it super tight. I'm not sure she can burp and she's exclusively g-tube fed so I don't know how eating would go. She can take a few bites and it doesn't seem to bothe her stomach. Hope that helps. Let me know if you have any other questions.

Edited to add: Ainsley has never had apnea issues despite the reflux that was severe enough to keep her trached.

Jonahsmom
04-17-2009, 02:07 PM
Thank you for that information on the Nissen. I have been researching it a bit today, and the possible complications are defintely something to consider before we make a decision.

Jonah does have some issues with feeding/aspiration. They have gotten worse since his supraglottoplasty last year....but we thicken the liquids, and most everything else he eats would be considered a "soft" diet (except for popcorn) and he is doing fairly well. No aspiration pnuemonias,at least.... We do not want to give up oral feeds either....that's something that is very important to us, and to Jonah. I guess our thought was to possibly place the gtube (cause pulmo really wants him to have it NOW anyway because of the lung damage showing on his chest CT presumed to be from aspiration), and if he didn't "need" it to eat following the surgery....I don't know, I' guess we'd remove it then..... Jonah has had 42 sedated procedures/surgeries in his lifetime, so perhaps waiting on the gtube IS the way to go....what's one more procedure, right? ;)

Thanks again for responding. We're still trying to figure this out....

Anji

The main thing you have to remember about reflux meds is that they're not going to stop reflux. They just change the acidity of the gastric juices so when a child (or person) does reflux, it's less harmful to their esophagus and potentially their airway. Some kids hold their breath when they're refluxing, causing them to drop their sats. Other kids are just spitters and have no problem with breathing while refluxing. Judging by the airway issues Jonah has (coupled with trisomy 21), I'd think that Jonah is having issues with breathing that are secondary to GERD and that a nissen would be beneficial.

We were discussing getting a nissen done with Mackenzie but ultimately our peds surgeon said it wasn't necessary. Just as there are patients who get the procedure and things work out spectacularly, there are also patients who don't respond well. I was told that in particular cases where the the patient has some form of neurological/cognitive issues, the patient is more likely to have issues with retching and eating. (I have heard from other parents on the board that there are meds to help with retching.) Sometimes a patient literally cannot PO feed after a nissen. One of our nurses told us that when she had hers done, she couldn't eat meat for 4 years and she was having to chew her food to a fine puree before she could swallow because her nissen was so tight. Also with a nissen, you have to keep in mind that it doesn't allowed for any sort of burping. You will more than likely need to vent after feedings and might want to inquire about the use of Farrel Bags.

Has Jonah had any problems with eating before? If not, I'd opt not to get the g-tube until after it was decided he absolutely cannot sustain himself by oral feedings. You do risk having to have yet another surgery (albeit minor in comparison), but PO feedings are such an important part of development that I would really hate to give that up.

As with anything, there are positives and negatives to each surgery and procedure. You just have to figure out what will work for Jonah. :) Good luck! I'm sending positive vibes for a routine scope without complications. :hug:

Jonahsmom
04-17-2009, 02:09 PM
Alot of times with reflux, you may need to try different meds in different combinations before one that works can be found. Did Jonah have biopsies done- could it be eosinophils (?sp) causing the swelling and redness?
Have you checked the boards on Parent2parent [URL="http://www.parent-2-parent.com/forum"] there is alot of advice on feeding issues/ eosinophillic disorders/ reflux

Jonah had biopsies done about 2 1/2 years ago....but not since then. Since he stopped "spitting up" we assumed the reflux meds were working.... but I will definitely ask the gastro about eosinophils....that's not something that I've heard mentioned in his case.... And thanks for the link. I'll check it out!

Anji

Jonahsmom
04-17-2009, 02:11 PM
When Jacob's reflux was not being managed, he had a huge number of apnea spells while sleeping. The meds keep it completely under control.;)


Now THAT is encouraging! Not for poor Jacob, of course...;) But it gives me hope that we COULD figure this out without having to re-trach Jonah...

By the way, I have a Jacob, too! He's 15, and is a typical teenage boy....drives me up a wall most days!

Anji

Jonahsmom
04-17-2009, 02:14 PM
She had the Fundo in October and her airway swelling has gotten quite a lot better although it hasn't resolved completely. We had none of the bad side effects you hear about with a fundo and she has not vomited once since the surgery. We had it done with an open incision and the surgeon wrapped it super tight. I'm not sure she can burp and she's exclusively g-tube fed so I don't know how eating would go. She can take a few bites and it doesn't seem to bothe her stomach. Hope that helps. Let me know if you have any other questions.

Edited to add: Ainsley has never had apnea issues despite the reflux that was severe enough to keep her trached.

That is encouraging to read, too! I've just not ever "heard" of a child refluxing to the point of causing such severe airway inflammation. Perhaps we are on the right path with this....

Do you mind if I ask about Ainsley? Her reflux is the cause of her trach? Do you mind if I ask why, specifically, reflux causes her to need the trach? Do you think that the fundo will help enough to get her decannulated? Sorry if that's too personal...I'm still learning and researching and have found other parents the BEST source of information, and support!

Anji

Kaylie
04-17-2009, 07:00 PM
Hi,
its nicw to meet you, sorry the circumstances arent the best. i have a grandaughter who has ds also, but we call it the ultimate love syndrome, anyway, does your child still have tonsils and adnoids? is his diagnosis OSA?i too think that not every meds work for each child, reflux can cause severe issues with the airway especially if its not protected, i would forsure try and switch meds for starters, then work on the other things as well. when kaylie was little she had reflux and vomited very regulary, we first used zantac, but that was dx after we were seeing it wasnt helped, then we went to prevacid, her airway shows no signs of reflux at this point, butwe still usethe meds to keep her Airway safe.. you can pm me if you need further info

Jonahsmom
04-17-2009, 10:04 PM
Is that your granddaughter in your pictures?!? She is an absolute DOLL! Look at that smile!

Anyway, yes, we've tried many meds for the reflux. We had been on Zantac and Reglan for years....after switching from Propulsid once they pulled it off the market. We've been on Prevacid now for over 2 years....it just doesn't seem to be working.

Do you mind if I ask why your grandaughter has a trach? Is it for the OSA? Jonah's is pretty severe....and we are trying so hard not to have to retrach him. He was trached as an infant....but has decannulated now for almost 10 years!


Hi,
its nicw to meet you, sorry the circumstances arent the best. i have a grandaughter who has ds also, but we call it the ultimate love syndrome, anyway, does your child still have tonsils and adnoids? is his diagnosis OSA?i too think that not every meds work for each child, reflux can cause severe issues with the airway especially if its not protected, i would forsure try and switch meds for starters, then work on the other things as well. when kaylie was little she had reflux and vomited very regulary, we first used zantac, but that was dx after we were seeing it wasnt helped, then we went to prevacid, her airway shows no signs of reflux at this point, butwe still usethe meds to keep her Airway safe.. you can pm me if you need further info

Christamae
04-17-2009, 11:19 PM
I had a fundoplication done a few weeks after my 17th birthday. It was a tight one, too. You can still eat. It is harder to swallow for a couple months. You cannot throw up or burp. I would do a g-tube in case he has trouble swallowing and so you can aspirate his stomach if he is sick and let it burp. I got my fundo because of GERD and in preparation for a surgery that would require lengthy recovery laying down. I have Muscular Dystrophy.

Kaylie
04-18-2009, 11:00 AM
Is that your granddaughter in your pictures?!? She is an absolute DOLL! Look at that smile!

Anyway, yes, we've tried many meds for the reflux. We had been on Zantac and Reglan for years....after switching from Propulsid once they pulled it off the market. We've been on Prevacid now for over 2 years....it just doesn't seem to be working.

Do you mind if I ask why your grandaughter has a trach? Is it for the OSA? Jonah's is pretty severe....and we are trying so hard not to have to retrach him. He was trached as an infant....but has decannulated now for almost 10 years!

Hi
yes that is my granddaughter in the pics,she is a beauty forsure. she was trached for laryngotracheomalacia,she was born premature and had alot of difficulty at birth(terrible birthing experience,which i am sure caused alot of her issues, but anyway she spent 5 months in the nicu and after many attempts to come off the vent they all failed) she has had her trach since 3 months old.who do you all see in cinnci for care?

BennyJam
04-19-2009, 02:16 PM
Hi Anji,

My son Ben had a Nissen fundo when he was about 8 months old. He is now 2 yrs old. He was a 25-wk preemie who was having trouble coming off the vent, with frequent episodes of projectile vomiting to the point where he was becoming dehydrated. His bronchoscopy also showed the upper airway to be very red and swollen. Before his Nissen, he was on Reglan, Prilosec, and Zantac.

After the Nissen, he came off all reflux meds. I can't say that he took off overnight, but we did see a big improvement in his respiratory status over the next couple of months (switched to continuous CPAP, decreased oxygen requirement).

Before his surgery, we were also very concerned about the wrap being too tight and affecting his swallow (especially since he had *just* started to PO feed successfully). But the surgeon did a nice job and his oral feeds also improved after the surgery. I remember her telling me that she uses the diameter of the pinky finger to estimate inner diameter of the wrap. Ben could not burp after the Nissen, so we would just vent his G-tube as needed. He also could not vomit. I was concerned about this because he did seem to have a lot of retching after the surgery--but this resolved in a week or so. I remember the recovery period overall being fairly short.

Now, having said all that...exactly one year after his fundo, Ben was hit with a c-diff infection plus a nasty GI virus. And so he did vomit for the first time after his fundo and since then, it has been as if the floodgates have opened and now he vomits ALL the time. The NIssen is supposedly still intact (by upper GI series) but functionally? It is not functioning at all (judging by the copious amounts of laundry I am doing these days). Surgeon feels that it loosened when he was so sick, but we are hoping not to have it redone.

I think that the skill of the surgeon is so important--you don't want the wrap to be too tight or too loose. Up until recently, we have been extremely happy with Ben's outcome.

I'm sorry this ended up being so long. Please feel free to email me if you have any questions.

Haley

Jonahsmom
04-19-2009, 09:34 PM
Hi
yes that is my granddaughter in the pics,she is a beauty forsure. she was trached for laryngotracheomalacia,she was born premature and had alot of difficulty at birth(terrible birthing experience,which i am sure caused alot of her issues, but anyway she spent 5 months in the nicu and after many attempts to come off the vent they all failed) she has had her trach since 3 months old.who do you all see in cinnci for care?

We see Dr. Shott in Cincinnati. We have seen Dr. Cotton also, but Dr. Shott is the one who has done all of his surgeries.

Anji

Jonahsmom
04-19-2009, 09:38 PM
Thanks for the response. I am so afraid that the Nissen will be too tight... we are just barely holding on here, without the feeding tube. We thicken the liquids, to help with the aspiration. His diet is more of a toddler soft diet, and we are very careful with what/how much he eats. But the CT scans of his chest show worsening damage from aspiration..... I'm really hoping the Nissen will help with the aspiration (ENT thinks he's aspirating stomach contents, causing the damage seen on the CT's), as well as the airway inflammation. I know that another surgery for a gtube isn't THAT big of a deal.... but I so want to keep him feeding orally.....

It's never easy, is it? But then I see his smile, hear his laugh...and remember that HE is the one fighting this....not me....and I realize, once again, that my job is to do the research, pray for guidance, and hopefully make the best possible choices for him.


Anji

Hi Anji,

My son Ben had a Nissen fundo when he was about 8 months old. He is now 2 yrs old. He was a 25-wk preemie who was having trouble coming off the vent, with frequent episodes of projectile vomiting to the point where he was becoming dehydrated. His bronchoscopy also showed the upper airway to be very red and swollen. Before his Nissen, he was on Reglan, Prilosec, and Zantac.

After the Nissen, he came off all reflux meds. I can't say that he took off overnight, but we did see a big improvement in his respiratory status over the next couple of months (switched to continuous CPAP, decreased oxygen requirement).

Before his surgery, we were also very concerned about the wrap being too tight and affecting his swallow (especially since he had *just* started to PO feed successfully). But the surgeon did a nice job and his oral feeds also improved after the surgery. I remember her telling me that she uses the diameter of the pinky finger to estimate inner diameter of the wrap. Ben could not burp after the Nissen, so we would just vent his G-tube as needed. He also could not vomit. I was concerned about this because he did seem to have a lot of retching after the surgery--but this resolved in a week or so. I remember the recovery period overall being fairly short.

Now, having said all that...exactly one year after his fundo, Ben was hit with a c-diff infection plus a nasty GI virus. And so he did vomit for the first time after his fundo and since then, it has been as if the floodgates have opened and now he vomits ALL the time. The NIssen is supposedly still intact (by upper GI series) but functionally? It is not functioning at all (judging by the copious amounts of laundry I am doing these days). Surgeon feels that it loosened when he was so sick, but we are hoping not to have it redone.

I think that the skill of the surgeon is so important--you don't want the wrap to be too tight or too loose. Up until recently, we have been extremely happy with Ben's outcome.

I'm sorry this ended up being so long. Please feel free to email me if you have any questions.

Haley