Question:

He did not think that I could be successfully diagnosed by another sleep study, and wanted me to see a specialist at Montefiore Medical Center in the Bronx, New York (I’m on Long Island), who saw more unusual cases.

Scott, I wrote to you, re: this problem on the SleepNet forums. Unfortunately, that site is owned by people who really have no conception of what "Internet" is supposed to entail. (Such as closing for weekends…as if problems go away.) Their censorship is grating. Could I ask you the name of the doctor you’ll be seeing? I’m intrigued by his experience with unusual cases: I get very little relief while on CPAP and have numerous arousals as well. Thanks.

Response:

Scott You have nothing to fear with Dr. Thorpy.  He is a great sleep doc.  Your numbers are in the cut-off range for norm to mild. Many will not treat if under RDI of 10 unless significant sleepiness or high blood pressure, etc. You may have other sleep problems that are causing arousals.  Leg kicks, UARS (snore arousals), etc. Do you have reflux?, asthma? etc. Take all of your old data and a new sleep diary when you go to your appointment. Good luck! Bret, RPSGT "Scott" <Heimd…@spamless.invalid

wrote in message

news:Heimdall-BDE099.16465907102003@news4.srv.hcvlny.cv.net…

In article <3F831302.8090…@socal.rr.com, NormC <no…@socal.rr.com wrote: What lab and was the pulmonologist a diplomated sleep doc?  See http://www.absm.org/Diplomates/listing.htm Sleep Improvement Center in Stony Brook, NY, and yes, he was listed. There should have been a written summary of the results of your PSG, and

you

should have a copy, so that you can answer some of your questions

yourself.

It should indicate if the following were accomplished:

electroencephalogram, – Hide quoted text — Show quoted text -

electroocculgram, submental electromyogram, body position, movement, electrocardiogram, oxygensaturation (pulse oximetry), nasal oral

airflow,

throat microphone, chest and abdominable wall movement, and anterior tibial electromyogram. I have it. I know that most, perhaps all, of the above were performed, but I don’t see them specifically listed on the summary though some (e.g., O2 saturation) can be inferred.. Are you aware that there is more than one kind of sleep apnea?

Titration is

for obstructional sleep apnea, but not for, what is sometimes called,

perhaps

erroneously, central apnea.  My neurologist diplomated sleep doc uses

the

term, neurological sleep disorder, more specifically, "intermittent

breathing".

Yes. I raised the issue of "central" apnea with the doc, and he said it was a possibility. However, the 2nd doc thought apnea itself may not be an issue. Well, I had the 2nd study, and was fitted with a CPAP. There should also be a written suumary of your titration that you should

have

a copy of. Have it. Didn’t work?  How do you know this?  What was your pressure set at? 120cmH 2 O at the center, though I believe they set the home device to 12. I state "didn’t work" to mean that I found no improvement. You really need to quantify these things for anyone to try to help you. the PSG: # apneas/hypopneas: 16 (REM), 33 (NREM) Maximum event duration: 12.0 (REM), 17 (NREM) Hypopnea index (events/hour): 17.6 (REM), 8.0 (NREM) Apnea index (events/hour): 1.2 (REM), 0.2 (NREM) Average baseline saturation: 94.7 (REM), 94.7 (NREM) Average low saturation: 92.2 (REM), 92.3 (NREM) Minimum saturaion: 92.2 (REM), 92.3 (NREM) Apnea/Hypopnea index (events/hr): 3.2 (REM) 6.7 (NREM) Respiratory Event Mix (Total Number) Obstructive: 16 (REM) 32 (NREM) Central: 0 (REM), 1 (NREM) Mixed: 0 (REM, NREM) Total arousal summery: Total apneas/hypopneas: 49 Total respiratory effort related arousals: 4 Total PLM arousals: 0 Total Spontaneous arousals: 254 Apnea/Hypopnea Index (AHI): 10.1 Respiratory Disordered Index (RDI): 16.7 PLM Index: 0 Spontaneous Arousal Index: 52.1 TOTAL SLEEP FRAGMENTATION INDEX: 68.8 I hope the specialist is a neurologist, and I hope he is a neurologist diplomated sleep doc!!!  IMHO, because of your bike accident, and the fact that you associate your sleep disorder(s) with the accident, you should have seen a neurologist sleep doc from the beginning, unless you had/have pulmonary problems. Yes to both. Michael Thorpy, MD. Director, Sleep Wake Disorders Center; Montefiore Medical Center Associate Professor of Neurology, Albert Einstein College of Medicine — to email *off-topic* responses, change "spamless.invalid" to

"optonline.net"

Response:

In article <%1Jgb.6850$qK1.5449…@news2.news.adelphia.net

,

 "bs" <some…@adelphia.net

wrote: You have nothing to fear with Dr. Thorpy.  He is a great sleep doc.  Your numbers are in the cut-off range for norm to mild. Many will not treat if under RDI of 10 unless significant sleepiness or high blood pressure, etc.

I do indeed have hypertension, which presented during the same period as the sleep disorder (i.e, never a problem prior).

You may have other sleep problems that are causing arousals.  Leg kicks, UARS (snore arousals), etc.

No significant leg movements or snoring were observed during the PSG.

Do you have reflux?, asthma? etc.

Occasional reflux, no asthma. — to email *off-topic* responses, change "spamless.invalid" to "optonline.net"

Response:

Posted and emailed (because of your server problem) Scott wrote:

OK, I thought I’d posted this sometime back, but I can’t find any trace of it on my news server or Google Groups.

FWIW, I recall your post here, but it no longer is on my news server or available in the GOOGLE archives, which provides more evidence that all posts do not make it to the GOOGLE archives.  (I trust that you do not have your newsreader set up for ‘no archive’.

I’ve had a sleep disorder for at least 6 years, I’ve always half thought it could be traced to a motor vehicle accident (with me as a bicyclist), or perhaps a generally high stress level.

If you sustained a brain injury, it could be related.  Maybe you are suffering from more than one sleep disorder.

About 4 years ago, I had an at-home sleep study, which didn’t produce very usable results (according to some physicians I consulted).

There is a right way to be evaluated for sleep disorders.  This is not it.  Is this way wrong?  __IF__ it works (which it hasn’t for you), the answer is ‘no’.   If it doesn’t work, the answer is ‘yes’.  There are a couple people posting here for whom a home test seems to have worked

About 2-3/4 years ago, I had a sleep study done in a center that specializes in such,

This is normally called a polysomnogrm (PSG).

said study reviewed by the pulmonologist connected with the center.

What lab and was the pulmonologist a diplomated sleep doc?  See http://www.absm.org/Diplomates/listing.htm There should have been a written summary of the results of your PSG, and you should have a copy, so that you can answer some of your questions yourself.  It should indicate if the following were accomplished: electroencephalogram, electroocculgram, submental electromyogram, body position, movement, electrocardiogram, oxygensaturation (pulse oximetry), nasal oral airflow, throat microphone, chest and abdominable wall movement, and anterior tibial electromyogram.

He stated that I have sleep apnea, and scheduled be for a CPAP titration.

Are you aware that there is more than one kind of sleep apnea?  Titration is for obstructional sleep apnea, but not for, what is sometimes called, perhaps erroneously, central apnea.  My neurologist diplomated sleep doc uses the term, neurological sleep disorder, more specifically, "intermittent breathing".

Well, I had the 2nd study, and was fitted with a CPAP.

There should also be a written suumary of your titration that you should have a copy of.

I never really got used to the CPAP, and never found any benefit–though the supervising technician claimed that I had improved sleep during the titration. After about 3-1/2 months, I gave up–not simply because it didn’t work,

Didn’t work?  How do you know this?  What was your pressure set at?

but because I had aerophagia so severe that I once woke up curled in a fetal position, unable to stand up straight from the abdominal pain.

This is another matter that confuses the potential sleep apnea issues.

I told the pulmonologist all this, and his response was to suggest I go on Provigil. To me, this was not acceptable–in my mind, it’s like giving someone with appendicitis Tylenol with codeine–sure, it’ll help with the symptoms to some extent, but there’s still a serious problem.

You are 101% correct here.  Until recently, Provigil was only approved for narcolepsy.  Recently it was approved for OSA, in conjunction with CPAP, but not approved for use for OSA by itself, according to my neurologist sleep doc.

OK, the clinker: I was just referred to someone else, and he was quite unimpressed by my sleep study, and seemed to imply, if not quite overtly state, that I had been misdiagnosed. He said that the number and duration of the apneas and hypopneas were on the high end of normal, but nothing spectacular–to the point where he said he couldn’t diagnose me with apnea, based on the study. However, I had a quite high number of spontaneous arousals, far more than would be explained by the apneas/hypopneas.

You really need to quantify these things for anyone to try to help you.

He did not think that I could be successfully diagnosed by another sleep study, and wanted me to see a specialist at Montefiore Medical Center in the Bronx, New York (I’m on Long Island), who saw more unusual cases.

I hope the specialist is a neurologist, and I hope he is a neurologist diplomated sleep doc!!!  IMHO, because of your bike accident, and the fact that you associate your sleep disorder(s) with the accident, you should have seen a neurologist sleep doc from the beginning, unless you had/have pulmonary problems. I never had any pulmonary problems, so I chose a neurologist diplomated sleep doc.  After all, sleep is a neurological function, not a pulmonary function. However, I later went to a pulmonologist who was not a diplomated sleep doc, but his partner was.

Right now, I’m trying to get approval from my #$*^&( HMO, since he’s out of network, but I’ll probably end up paying out-of-pocket. Anyway, does anyone have personal experience with the not-quite-apnea arousals, or have other knowledge?

I have not had that problem; however, if you search the archives for ‘arousal’, you’ll find more than you ever wanted to see <g

.

But, for anyone to speculate, they would need the same information your doctors have had….. at least the PSG and titration summary.  Because, right off, I would not assume that you got the story straight, verbally. HTH – Hide quoted text — Show quoted text –

Response:

In article <3F831302.8090…@socal.rr.com

, NormC <no…@socal.rr.com

wrote:

What lab and was the pulmonologist a diplomated sleep doc?  See http://www.absm.org/Diplomates/listing.htm

Sleep Improvement Center in Stony Brook, NY, and yes, he was listed.

There should have been a written summary of the results of your PSG, and you should have a copy, so that you can answer some of your questions yourself.   It should indicate if the following were accomplished: electroencephalogram, electroocculgram, submental electromyogram, body position, movement, electrocardiogram, oxygensaturation (pulse oximetry), nasal oral airflow, throat microphone, chest and abdominable wall movement, and anterior tibial electromyogram.

I have it. I know that most, perhaps all, of the above were performed, but I don’t see them specifically listed on the summary though some (e.g., O2 saturation) can be inferred..

Are you aware that there is more than one kind of sleep apnea?  Titration is for obstructional sleep apnea, but not for, what is sometimes called, perhaps erroneously, central apnea.  My neurologist diplomated sleep doc uses the term, neurological sleep disorder, more specifically, "intermittent breathing".

Yes. I raised the issue of "central" apnea with the doc, and he said it was a possibility. However, the 2nd doc thought apnea itself may not be an issue.

Well, I had the 2nd study, and was fitted with a CPAP. There should also be a written suumary of your titration that you should have a copy of.

Have it.

Didn’t work?  How do you know this?  What was your pressure set at?

120cmH 2 O at the center, though I believe they set the home device to 12. I state "didn’t work" to mean that I found no improvement.

You really need to quantify these things for anyone to try to help you.

the PSG: # apneas/hypopneas: 16 (REM), 33 (NREM) Maximum event duration: 12.0 (REM), 17 (NREM) Hypopnea index (events/hour): 17.6 (REM), 8.0 (NREM) Apnea index (events/hour): 1.2 (REM), 0.2 (NREM) Average baseline saturation: 94.7 (REM), 94.7 (NREM) Average low saturation: 92.2 (REM), 92.3 (NREM) Minimum saturaion: 92.2 (REM), 92.3 (NREM) Apnea/Hypopnea index (events/hr): 3.2 (REM) 6.7 (NREM) Respiratory Event Mix (Total Number) Obstructive: 16 (REM) 32 (NREM) Central: 0 (REM), 1 (NREM) Mixed: 0 (REM, NREM) Total arousal summery: Total apneas/hypopneas: 49 Total respiratory effort related arousals: 4 Total PLM arousals: 0 Total Spontaneous arousals: 254 Apnea/Hypopnea Index (AHI): 10.1 Respiratory Disordered Index (RDI): 16.7 PLM Index: 0 Spontaneous Arousal Index: 52.1 TOTAL SLEEP FRAGMENTATION INDEX: 68.8

I hope the specialist is a neurologist, and I hope he is a neurologist diplomated sleep doc!!!  IMHO, because of your bike accident, and the fact that you associate your sleep disorder(s) with the accident, you should have seen a neurologist sleep doc from the beginning, unless you had/have pulmonary problems.

Yes to both. Michael Thorpy, MD. Director, Sleep Wake Disorders Center; Montefiore Medical Center Associate Professor of Neurology, Albert Einstein College of Medicine — to email *off-topic* responses, change "spamless.invalid" to "optonline.net"

Response:

OK, I thought I’d posted this sometime back, but I can’t find any trace of it on my news server or Google Groups. I’ve had a sleep disorder for at least 6 years, I’ve always half thought it could be traced to a motor vehicle accident (with me as a bicyclist), or perhaps a generally high stress level. About 4 years ago, I had an at-home sleep study, which didn’t produce very usable results (according to some physicians I consulted). About 2-3/4 years ago, I had a sleep study done in a center that specializes in such, said study reviewed by the pulmonologist connected with the center. He stated that I have sleep apnea, and scheduled be for a CPAP titration. Well, I had the 2nd study, and was fitted with a CPAP. I never really got used to the CPAP, and never found any benefit–though the supervising technician claimed that I had improved sleep during the titration. After about 3-1/2 months, I gave up–not simply because it didn’t work, but because I had aerophagia so severe that I once woke up curled in a fetal position, unable to stand up straight from the abdominal pain. I told the pulmonologist all this, and his response was to suggest I go on Provigil. To me, this was not acceptable–in my mind, it’s like giving someone with appendicitis Tylenol with codeine–sure, it’ll help with the symptoms to some extent, but there’s still a serious problem. OK, the clinker: I was just referred to someone else, and he was quite unimpressed by my sleep study, and seemed to imply, if not quite overtly state, that I had been misdiagnosed. He said that the number and duration of the apneas and hypopneas were on the high end of normal, but nothing spectacular–to the point where he said he couldn’t diagnose me with apnea, based on the study. However, I had a quite high number of spontaneous arousals, far more than would be explained by the apneas/hypopneas. He did not think that I could be successfully diagnosed by another sleep study, and wanted me to see a specialist at Montefiore Medical Center in the Bronx, New York (I’m on Long Island), who saw more unusual cases. Right now, I’m trying to get approval from my #$*^&( HMO, since he’s out of network, but I’ll probably end up paying out-of-pocket. Anyway, does anyone have personal experience with the not-quite-apnea arousals, or have other knowledge? — to email *off-topic* responses, change "spamless.invalid" to "optonline.net"

Response:

Question:

    I just ran across this and wanted to pass it along.     According to http://www.ama-assn.org/special/asthma/treatmnt/updates/gerd.htm,  reflux contributes to asthma symptoms because it irrates the vagal nerve endings(whatever that is).  The article states: "There have been two proposed mechanisms for the role of GERD in asthma: "1. (snip) "2. Stimulation of esophageal mucosal receptors giving rise to vagally mediated bronchospasm. This has emerged as the leading hypothesis. Prolonged reflux clearance times often cause symptomatic esophageal disease and esophagitis. The epithelial layer of the mucosa becomes eroded, exposing vagal nerve endings. Consequently, esophageal receptors become increasingly sensitive to refluxed material. Once stimulated, the receptors transmit a signal that results in constriction of the bronchioles." regards, Kurt

Response:

Interest info on reflux/asthma relationship  

Question:

– Hide quoted text — Show quoted text – I seem to have a new dilemma with my son.  The docs in Boston put him on reflux meds to see if that helped his asthma.  He’s on propulsid (5mg 4 x’s day) and zantac (75mg 2 x’s day), plus pulmicort (200 mcg 1 puff 2x’s day) and singulair (5mg).  His asthma has been under control since Nov, a miracle, but now we are realizing he’s having side effects from the propulsid.  He’s actually had side effects since he started but nobody wanted to say it was from the drug.  Well, to make a very long story short, I called the drug company to get some more info.  I found this drug, propulsid, can be very dangerous and children have died on it.  I am now in the position of making a decision of what to do.  I took him off of it last thurs when the effects got worse but the GI doc wants him back on it and the peditrician would rather him not on it.  I took him to the cardiologist for an EKG and Holter and the cardio dr.’s opinion was to outweigh the good and the bad and go with my feeling.  My feeling is to leave him off but the pressure from the GI doc is mounting.  I will be talking to him and the pulmo today or tomorrow (waiting for other test results to come back). There aren’t too many alternatives to this drug, so I feel very stuck.  Any info on reflux, kids and meds would be appreciated.  I can’t get into the FDA website, its always "busy".  Thanks for listening! Gina

Sounds like a bad idea to keep him on the propulsid.  Trust the pediatrician. Also, has the GI doc recommended keeping your son off milk and any milk products? These things can cause nasty GI problems and heightens asthma and mucous.  Get some info on natural medicine…it has helped me tremendously. Good luck. Lulu

Response:

- Hide quoted text — Show quoted text – I seem to have a new dilemma with my son.  The docs in Boston put him on reflux meds to see if that helped his asthma.  He’s on propulsid (5mg 4 x’s day) and zantac (75mg 2 x’s day), plus pulmicort (200 mcg 1 puff 2x’s day) and singulair (5mg).  His asthma has been under control since Nov, a miracle, but now we are realizing he’s having side effects from the propulsid.  He’s actually had side effects since he started but nobody wanted to say it was from the drug.  Well, to make a very long story short, I called the drug company to get some more info.  I found this drug, propulsid, can be very dangerous and children have died on it.  I am now in the position of making a decision of what to do.  I took him off of it last thurs when the effects got worse but the GI doc wants him back on it and the peditrician would rather him not on it.  I took him to the cardiologist for an EKG and Holter and the cardio dr.’s opinion was to outweigh the good and the bad and go with my feeling.  My feeling is to leave him off but the pressure from the GI doc is mounting.  I will be talking to him and the pulmo today or tomorrow (waiting for other test results to come back). There aren’t too many alternatives to this drug, so I feel very stuck.  Any info on reflux, kids and meds would be appreciated.  I can’t get into the FDA website, its always "busy".  Thanks for listening!

Pepsid is not the only substance that can treat reflux. Mine was treated before Pepsid was even invented (at the time, the doctor recommended Gaviscon, which is OTC…as always, check the ingredients before trying it). You also might want to get a second opinion. Joan

Response:

There aren’t too many alternatives to this drug, so I feel very stuck.  Any info on reflux, kids and meds would be appreciated.  

Gina, I have a 9 month old son who has been diagnosed with GERD (reflux) since he was 5 weeks of age.  He was just diagnosed with Asthma last week.  Seems the two will often go hand in hand.  He was on Propulsid and Zantac for several months but our G.I. took him off of it after hearing a study that was released at a convention in October.  This study stated that there are an increasing number of deaths realated  propulsid which were NOT linked to interactions with other medicines.  He is currently taking Pepcid and Carafate.  We are also in the same perdicament as you in that our Pulmonologist would like for Ryan to be on Propulsid again and I am not crazy about the idea.  There are alternatives to Propulsid, one of them is Reglan.  Some kids get EXTREMELY wired on this med which was the case with Ryan.  Also, here is a great link to the GERD WORD which is a web site devoted to educating and supporting parents of children with reflux.  They have lots of links on medications and reflux information as well as an e-mail support group (of which I am a part) and a message board. The address is: http://www.geocities.com/HotSprings/Villa/2193/ Try this link and see if you can’t find out some more information to help you make your decision. In the end the most important thing is to go with your maternal instincts as they are almost always right.  If you decide to stay with the propulcid  make sure to have regular EKGs done to rule out any irregular heart rhythms! Please feel free to email me privately if you would like to.  I have a TON of links and information on reflux and related topics.  I would be glad to help in anyway that I can. Sincerely Karen (Mommy to Ryan 4/16/98 – GERD/Eosiniphillic Allergies & Asthma  and to Megan 8/19/96)

Response:

This medicine sounds like bad news for your son and you have a right to be upset and concerned.  You sound like you’ve made up your mind to get him off of it, but are worried that his asthma will return.  Depression is a terrible thing to deal with (and in a child) and who knows what this medicine could do to him in the long term physically and emotionally. Like I said before trust your pediatrician, get more opinions if you need to. Take control of your son’s health problems don’t let them control you and him. (in regards to natural medicine, you need to work with a doctor that specializes in alternative medicine…it won’t work if you self medicate, mostly because certain types of vitamins, minerals, herbs, etc. need to be prescribed and monitored professionally.  And these remedies take time to work in the body, they aid the body in helping itself, not from some miracle pill that the world is looking for to solve the problems.) I wish you the best and for your son. L

Response:

Gina – well, you didn’t say which natural remedies you’ve tried so I’ll give this a try… Does your son drink milk and/or eat dairy products?  Sometimes kids with sensitive stomachs (reflux) have a lot of trouble with milk. Have you tried soy milk?  They have a variety now which is flavored vanilla.  Not bad really, but you could sweeten it up a bit more with a teaspoon of sugar. Soy is a lot easier on the stomach and is nutritional as well. Another alternative (home-remedy) you could try:  1 teaspoon of cider vinegar to 1 six ounce glass of water drunk immediately after a meal.  Kids aren’t crazy about this, but again, if you wish to try it, you could sweeten it up with a little sugar or artificial sweetener.  A friend of mine whose daughter has GERD (she’s 13 now) used to make easily digestible salads and for dressing mixed sugar, water and vinegar.  She told me her daughter loves these salads to this day…so maybe that’s an alternative you could try. Other thoughts: does your child eat too fast, thus gulping a lot of air into his stomach?  Is he drinking carbonated beverages?  How about chewing gum?  Gum creates a lot of acid/gas in the stomach.  Is he drinking enough water every day?  Does he have a snack a few hours before going to bed?  Try restricting all food and drink (except water) for at least two to three hours before his bedtime. Does he eat chocolate or a lot of fried, fatty foods like french fries?  These foods can bring on a terrible reflux episode.  Sometimes 6 smaller meals a day helps more than three larger ones. Hope you don’t mind, but I have to say that the arrythmia which you say your son has concerns me.  I am not a proponent of young children being force-fed medicine unless absolutely necessary because I wonder how this will eventually alter their developing immune systems.  You have every right to be concerned and question those drugs prescribed.  Drugs like propulsid, ranitidine (pepcid AC/Tagamet) and prilosec have not been widely tested with children.  The side- effects are usually more pronounced in children as they haven’t had as much time to strengthen their systems (via colds, flus) as we adults have. Anyway, being a life-long GERD sufferer, I sympathize and wish you and your son well. P.S. – The old raise the head of the bed suggestion isn’t a bad one either. Jarrett – Hide quoted text — Show quoted text – I have pointed out to the GI doc theside effects he has had.  My peditrician is calling him herself to see what else we can do.  Unfortunely, drugs really aren’t tested on children but docs prescribed them on off label use and the kids are guinea pigs.  I told the GI doc I am not comfortable with my son being on a med that has killed at least 5 children (directly related to the drug), especially since he has a borderline heart arrthymia contradicited in this drug.  The GI doc feels his arrythmia is not bad enough to take him off or to cause death, but he won’t guarantee that.  The cardio doc says Nick is a borderline case.  He also experienced depression and problems concentrating while on this drug.  It’s very hard to see your 5/6 year old son depressed and no doc thinks that’s a bad side eefect.  The drug company has had many reports of children who are experiencing depression while on this drug. I have tried natural remedies before and they do not work, to me that’s not an option for Nick. I would like to thank everyone for their support. Gina

Response:

I have pointed out to the GI doc theside effects he has had.  My peditrician is calling him herself to see what else we can do.  Unfortunely, drugs really aren’t tested on children but docs prescribed them on off label use and the kids are guinea pigs.  I told the GI doc I am not comfortable with my son being on a med that has killed at least 5 children (directly related to the drug), especially since he has a borderline heart arrthymia contradicited in this drug.  The GI doc feels his arrythmia is not bad enough to take him off or to cause death, but he won’t guarantee that.  The cardio doc says Nick is a borderline case.  He also experienced depression and problems concentrating while on this drug.  It’s very hard to see your 5/6 year old son depressed and no doc thinks that’s a bad side eefect.  The drug company has had many reports of children who are experiencing depression while on this drug. I have tried natural remedies before and they do not work, to me that’s not an option for Nick.   I would like to thank everyone for their support. Gina

Response:

- Hide quoted text — Show quoted text – I seem to have a new dilemma with my son.  The docs in Boston put him on reflux meds to see if that helped his asthma.  He’s on propulsid (5mg 4 x’s day) and zantac (75mg 2 x’s day), plus pulmicort (200 mcg 1 puff 2x’s day) and singulair (5mg).  His asthma has been under control since Nov, a miracle, but now we are realizing he’s having side effects from the propulsid.  He’s actually had side effects since he started but nobody wanted to say it was from the drug.  Well, to make a very long story short, I called the drug company to get some more info.  I found this drug, propulsid, can be very dangerous and children have died on it.  I am now in the position of making a decision of what to do.  I took him off of it last thurs when the effects got worse but the GI doc wants him back on it and the peditrician would rather him not on it.  I took him to the cardiologist for an EKG and Holter and the cardio dr.’s opinion was to outweigh the good and the bad and go with my feeling.  My feeling is to leave him off but the pressure from the GI doc is mounting.  I will be talking to him and the pulmo today or tomorrow (waiting for other test results to come back). There aren’t too many alternatives to this drug, so I feel very stuck.  Any info on reflux, kids and meds would be appreciated.  I can’t get into the FDA website, its always "busy".  Thanks for listening!

Point out to the GI doc that your son is having severe side effects, and ask what else s/he can suggest. Chris Owens

Response:

I seem to have a new dilemma with my son.  The docs in Boston put him on reflux meds to see if that helped his asthma.  He’s on propulsid (5mg 4 x’s day) and zantac (75mg 2 x’s day), plus pulmicort (200 mcg 1 puff 2x’s day) and singulair (5mg).  His asthma has been under control since Nov, a miracle, but now we are realizing he’s having side effects from the propulsid.  He’s actually had side effects since he started but nobody wanted to say it was from the drug.  Well, to make a very long story short, I called the drug company to get some more info.  I found this drug, propulsid, can be very dangerous and children have died on it.  I am now in the position of making a decision of what to do.  I took him off of it last thurs when the effects got worse but the GI doc wants him back on it and the peditrician would rather him not on it.  I took him to the cardiologist for an EKG and Holter and the cardio dr.’s opinion was to outweigh the good and the bad and go with my feeling.  My feeling is to leave him off but the pressure from the GI doc is mounting.  I will be talking to him and the pulmo today or tomorrow (waiting for other test results to come back). There aren’t too many alternatives to this drug, so I feel very stuck.  Any info on reflux, kids and meds would be appreciated.  I can’t get into the FDA website, its always "busy".  Thanks for listening! Gina

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