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fac
04-08-2010, 11:58 PM
I was told by DD's ENT that DD has nodules on her vocal chord. After sending us to 2 S/L pathologists who did nothing but just charged us for useless visits, he now is sending us to another ENT, however, the new ENT is not accepting any medical insurance, the consultation is $250 and depends on what needs to be done, the subsequent visit will likely be $750, even if it were considered as out-of-network, we have a base of $1000, hence the insurance is no help here.

Before I start trying out ENT after ENT, I like to know whether anyone has experience with nodules on your kid's vocal chord and what did you or the doctor do? Talking to my pediatrician is no good, because she sent me to this ENT in the first place.


The following is my previous thread on my experience with the S/L, what I did not finish was after I made the last post, I went to the 2nd S/L on the same day. Magically she told me that DD was cured and asked me to go back to the ENT. I told her I didn't see any improvement, but I ran anyway. There were other signs that she is not good. When I went back to the ENT who confirmed that nothing was changed, but admitted that he did not know any good S/L in the area, and sent me to a good S/L in New York. He told me that normally ENT does not operate on kids, hence he didn't really know what to do.

http://www.disboards.com/showthread.php?t=2240529

When I called the S/L, it turned out that he is an ENT, probably he is good as he can make a living without accepting insurance, but after spending nearly a thousand on those useless S/L pathologists. I am not sure whether I should take DD out of school, travel to NY just to see what the ENT says. I probably can try another ENT in our area, but I hope to hear other's experiences before restarting the cycle again.

QVCshopper
04-09-2010, 12:15 AM
I didn't read your entire other thread, but it sounds like you're getting the run around. I got the run around when my DD then 2 had recurring fevers up to 105F every 2 weeks and no one knew why. I ended up finding the cause (tonsils) on the internet, went to DuPont Hospital for Children's ENT and met a great doctor who solved all of her problems (for now). So, I'd suggest going to a children's ENT. Not sure where you are in NJ, but maybe CHOP if you are on the south side? I think a major children's hospital will probably take your insurance, and they are suited for children. Not sure about the ST. My DD also gets that, and she practices words/sounds, does activities, etc., but that's through my county's early childhood development group. Good luck!

fac
04-09-2010, 12:26 AM
thanks. I may eventually give Children's hospital a try. I have one near my area.

The 2nd S/L is from a local hospital as well. In fact, after finding out the first S/L was no good, the ENT specifically told me he wanted to send me to an S/L associated to the hospital. The problem was I could see the 1st S/L struggled to figure out what to do with DD. After I told the 2nd S/L, she seemed to have confidence, but when I saw her treatment, I could see she did not know what to do with DD. I should have left after 2 visits, but I decided to give her time instead of 2nd guessing her.

fac
04-09-2010, 03:02 PM
anyone has the experience?

pammypooh
04-09-2010, 05:40 PM
Hi,
I do not have specific information for you on "nodules", but I went through a pediatric ENT that was wonderful for my daughter. She had ear infections/large adnoids/problems with speech due to the numerous ear infections. I am on the PA side of Philly and I'd be happy to email you his contact information if you are close to Philly. He is associated with big hospital, though we went to the suburb office and outpatient location for her surgeries. Just pm me if you want his info.
I would also second the recommendation to contact Children's Hospital in Philly.
Good luck!
Pam

monarchsfan16
04-09-2010, 05:46 PM
It sounds like you've found 2 SLPs that don't have experience with voice disorders. Unfortunately, this is more common than it should be; I'm currently in grad school, working on my master's in speech-language pathology. Voice disorders is an optional class in my program, and it seems as though that's pretty typical. Voice disorders, especially in children, are definitely NOT the majority of an SLP's caseload.

That being said, your ENT is correct to be starting by sending you to an SLP. Vocal fold nodules typically CAN be resolved through speech therapy. My advice would be to really do your research and find an SLP who specializes in voice disorders. The SLPs that you've already been sent to WERE correct in advising against coffee and soda, but there's definitely more to the appropriate therapy than that. An SLP that knows what they're doing in voice can work wonders, and prevent very difficult surgery. You might look to see if any universities near you offer a program in SLP; they will often have on campus clinics, where treatment is done by graduate clinicians under supervision of certified SLPs (and treatment is generally less expensive). They may also have advice on who in your area is respected in the area of voice.

billwendy
04-09-2010, 06:50 PM
I would check out duPont Hospital for Children in Wilmington, DE. They have wonderful ENT's there who are experienced in voice/nodules. There is even a voice clinic with trained therapists!! I hope you can figure it all out!!!

Mickey'snewestfan
04-09-2010, 07:22 PM
My son had nodules diagnosed at around age 6.

The first speech therapist we went to was awful. She had this incredibly condescending syrupy voice that just got on my nerves. She spent the whole time waving around 2 puppets -- a bee and a frog and telling my son he needed to sound "buzzy" and not "froggy". She'd give examples to me and they sounded EXACTLY the same -- I swear I couldn't hear any difference. I told her this and she basically reacted like I was an idiot. She then continued to give examples that sounded exactly alike. Each week I'd come in and she'd say "I hope you praised him whenever he was buzzy" and I'd explain again that I had absolutely no idea what she was talking about, and she'd say "Of course you do. Buzzy, like I'm talking right now".

She also clearly never reviewed my child's file or listened to what I said. When he first came in I talked about how he'd had severe reflux as an infant and I wondered if that was still contributing. She basically told me "we'll never know what caused it", and blew me off. Then a few weeks later when she was frustrated that he wasn't being more "buzzy" despite her efforts she told me I should cut out tomatoes, and anything else acidic from his diet because "everyone knows reflux causes nodules". I was pretty mad. If she'd told me reflux was a potential cause I would have made a GI appointment right away.

So, we switched -- I found a therapist who only did vocal nodules but whose specialty was adults -- generally singers and other professionals who use their voice. I begged him and told him that if he explained it to me I could explain it to DS. We went about 3 sessions. The first session he asked my son to talk, and then played a series of notes on the keyboard and then told me those notes matched the pitches my son used (it was a very limited range). He then played more notes and asked my son to talk using the wider range. He said that using the same pitch meant you're using the same points on the vocal chords and that irritates them. It made perfect sense to both DS and I. They worked for 3 sessions on him playing a series of notes and saying a sentence and DS copying it. At the end of 3 sessions he said that clearly my son "got it", and that I could help him practice at home and that while he couldn't guarantee he was cured, he didn't think he'd get any worse (which was our worry since we caught it early). He said that most boys resolve completely in puberty because the rapid growth in their vocal chords stretches them out.

So, in my case I'd say that having experience with nodules is way more important than having experience with kids, and that if you find the right person therapy can be very short which makes it worth driving.

I did want to comment on something in your other post, and that was you seemed to have a problem with the therapist asking your daughter to write down the rules. I'm also a teacher, and I can tell you that the difference in what kids remember if they're the one doing the writing/getting the motor feedback, vs. just reading something, is huge. So, while I'm not excusing the rest of her behavior, and it does sound like she knew nothing about vocal nodules, that made perfect sense to me.

Good luck!

3boymthr
04-09-2010, 07:31 PM
I'm not sure what sort of nodules your DD has as I didn't read your previous thread but I wanted to convey my personal experience with ENTs, nodules and speach therapy.

When I was a kid of about 10 they found I had "nodules" on my vocal chords that turned out to be callouses from screaming as a child - (I was burned by a stove fire that exploded at a neighbors house as a toddler and for three years any time I saw a flame I'd start screaming- oh and my mom had a gas stove, god bless her patience). The callouses resulted in a scratchy voice when I read aloud or gave oral reports and still do when I'm tired.

I saw an ENT who referred me to a speach therapist. Spent a lot of time spinning my wheels there and after about six months, I started refusing to go as no matter what they did I figured out that out really how can speach therapy help a callous? (Yup I was 11, but I still knew sitting there humming different sounds for half an hour at at time wasn't helping.)

I was told that if mine grew I'd have to have surgery. That never happened.

Mickey'snewestfan
04-09-2010, 07:39 PM
It sounds like maybe you had the same awful therapist we did who coudn't explain anything.

Using different pitches (aka humming different sounds) is what speech therapists do to help nodules. Think of it as if you did all your typing with one hand and got a callous on your finger -- you decide it's ugly and it didn't fit in your gloves so you wanted to get rid of it. An occupational therapist might teach you to touch type so you use all your fingers, and that one finger would get a break.

When you were screaming, you were probably using the same pitch over and over again, which meant that that same point on your chords was vibrating and rubbing against each other. Then a callous formed which made the chords rub even more.

The best thing to do is simply to stop talking -- I have 2 friends who are professional singers who got them and they literally stopped saying anything for almost a month -- worked like a charm. Try convincing my 5 year old who didn't know how to write yet to just stop talking -- not going to happen. So the next choice is to teach the individual to use all the different parts of the vocal range, so that that spot is rubbing much less. To talk in different pitches. This explanation made perfect sense to us, but the problem was that the first speech therapist didn't explain it at all. So we'd practice humming, and she'd tell us to make his voice sound like the humming -- I'd be scratching my head, how can you communicate by humming (unless you're a bee)? But once the second therapist told him it was the tune of the humming that mattered, so the therapist would say something with a clear "tune" and my son would hum the sentence and then say the sentence -- he then went home with the assignment to practice talking with a tune. Which worked.

libraryfreak
04-09-2010, 08:54 PM
My son was diagnosed with nodules too, around 2nd or 3rd grade. He had been hoarse of and on for years. Fortunately our school provided speech therapy free (I had to have a doctors order) and it went away after about 4 months.

I remember the EMT telling me my son "yelled" or talked too loud. I didn't think he did, and I asked my friends if they thought he did and they didn't notice it either. But in any case, whatever the speech therapist did it worked. It's been 6 years and he's been fine since.

The earlier you get therapy the easier it is to unlearn bad habits. Good luck!

3boymthr
04-09-2010, 10:19 PM
It sounds like maybe you had the same awful therapist we did who coudn't explain anything.

Using different pitches (aka humming different sounds) is what speech therapists do to help nodules. Think of it as if you did all your typing with one hand and got a callous on your finger -- you decide it's ugly and it didn't fit in your gloves so you wanted to get rid of it. An occupational therapist might teach you to touch type so you use all your fingers, and that one finger would get a break.

When you were screaming, you were probably using the same pitch over and over again, which meant that that same point on your chords was vibrating and rubbing against each other. Then a callous formed which made the chords rub even more.

The best thing to do is simply to stop talking -- I have 2 friends who are professional singers who got them and they literally stopped saying anything for almost a month -- worked like a charm. Try convincing my 5 year old who didn't know how to write yet to just stop talking -- not going to happen. So the next choice is to teach the individual to use all the different parts of the vocal range, so that that spot is rubbing much less. To talk in different pitches. This explanation made perfect sense to us, but the problem was that the first speech therapist didn't explain it at all. So we'd practice humming, and she'd tell us to make his voice sound like the humming -- I'd be scratching my head, how can you communicate by humming (unless you're a bee)? But once the second therapist told him it was the tune of the humming that mattered, so the therapist would say something with a clear "tune" and my son would hum the sentence and then say the sentence -- he then went home with the assignment to practice talking with a tune. Which worked.


Yeah, sounds like my therapist was a lousy one as while my voice never got worse it also never got "better" and despite the six months of therapy remained at the same level of scratchiness the whole time.

I will say that this was 30 years ago and I think at that time they didn't really believe in explaining anything to kids about why you were doing stuff - I remember a don't argue just do it attitude vibrating off the woman. Also we lived on a farm in a then very rural area at just above poverty level - with no insurance - I'm sure I got the cheapest treatment possible.

I'm glad the treatment worked for your DS and that you found a better therapist.

fac
04-09-2010, 10:58 PM
thanks. I think you all hit the nail on the head.

DD can be very persistent in crying when things didn't go her way. She would just cry for hours, I thought her voice is always hoarse, but during the check-up last year, the nurse parctitioner noticed it and suggested us to see the ENT. I did suspect it was the cause and told the ENT about it, but he didn't seem to believe it.

Micyey'snewestfan, thanks for the great explanation. It make sense now. Both S/L did do some kind of humming, but I don't think the S/L even aware of it.
The first S/L after spenting a few sessions asking DD to drink water and asking me why DD's voice was hoarse, found a book and asked DD to follow her to read about 10 sentences each session, it took about 3 minutes and made no effort to correct how DD read (doubted she knew), she spent the balance of time talking to us. I could see that she was struggling to fill up the time.
The second S/L also spent majority of the time chating with DD, say what she did in school etc, then again 5 minutes to read about 10 sentences, she did attempt to make a few corrections. After a few sessions, I could also see her trying to fill the 30 minutes, sometimes she even sent us away after 20 minutes. At the last session, when she told me DD was cured, I asked her to sum up what DD needed to do, she said "don't clear the voice" which was what she said in the first lesson and it was on the first page of the book she showed us during the first visit. I was thinking why she wanted us to waste the many sessions with her. In fact, each session was taken from a page out of the book I told her the ENT and even the nurse practitioner were expecting she would teach DD some breathing techniques, she stated the breathing technique is not for DD but for singers...

I think monarchsfan16 was right that not all SLP are trained in voice, but what I was disappointed was that they should have told me early, but they didn't. The 2nd SLP even told me the first SLP called her telling her that she was not specialized in voice and would send clients her way.

fac
04-09-2010, 11:02 PM
My son was diagnosed with nodules too, around 2nd or 3rd grade. He had been hoarse of and on for years. Fortunately our school provided speech therapy free (I had to have a doctors order) and it went away after about 4 months.

I remember the EMT telling me my son "yelled" or talked too loud. I didn't think he did, and I asked my friends if they thought he did and they didn't notice it either. But in any case, whatever the speech therapist did it worked. It's been 6 years and he's been fine since.

The earlier you get therapy the easier it is to unlearn bad habits. Good luck!

libraryfreak, how can you get the doctor to write the prescription? I meant it is medical, why would the school provide it? Our ENT may be willing to write, but why would the school provide it?

DD has an IEP, she had a S/L eval by the district, but also has and independent S/L eval, the independent SLP suggested speech therapy, but was intended for phonic etc..

Kriii
04-10-2010, 09:17 AM
Speech therapy can help only if the nodules haven't hardened to a degree where surgury alone can remove the nodules. Perhaps this is the reason why the therapy didn't help. I'd go ahead with the second ENT consult since two rounds of speech therapy didn't help cure the voice. I'd definately still follow any advice the SLPs gave re: improving vocal hygiene so that the problem isn't exacerbated. Hope the problem is solved soon.