Should I let this go or pursue it somehow?

[ravinlunachick]

DS had surgery to remove his adenoids and place ear tubes yesterday. After the procedure, before they brought ds to the recovery room, the surgeon stopped by and said that ds had done fine, but that he'd been surprised to discover that ds had a bifid uvula. He went on to say that this means ds "nearly had a cleft palate, but it most likely fused most of the way back, just not to his uvula." He explained that he had left some of ds's adenoid tissue, "to ensure that the space between the nose and the mouth is closed." He then proceeded to get out the ear drops and discuss what to do with those, and to write ds's antibiotic prescription and go over how to administer that. Then he sped away, off to do his next surgery.

 

I'd never heard of a bifid uvula, so while I waited on ds to arrive, I googled. Turns out that this is often associated with a submucosal cleft palate--basically a hidden cleft in the soft palate that is covered by tissue so that it does not show up on visual examination. Given that ds has been unable, despite YEARS of speech therapy, to produce even a single consistent word, and only a limited number of sounds, this was intriguing to me. Had we stumbled upon a structural cause for his lack of speech and difficulty eating?!? Even before this surgery was ever discussed, I've been plagued with the idea that we should have long ago tried to rule out any structural or brain abnormalities, but I feel that due to ds's autism diagnosis (he actually scores "mild" on the autism assessments, fwiw), professionals are not particularly concerned with his lack of speech. It feels like they all just figure, "Oh well, of course he's not talking! It's because he's autistic."

 

Once we arrived at home and got ds settled, I called our regular pediatrician's office to see what our next step would be. They told me to call the ENT who'd done the surgery, that HE would be the one to determine that. So, I called the ENT and spoke with the supidest receptionist to ever walk the face of the Earth. :glare: Eventually, I was able to leave a message for the ENT's secretary. She called me back today to say that the doctor wanted me to know that ds's issue "won't affect his health at all, so don't worry about it. He'll discuss any questions you have at his 6 month follow-up visit."

 

Gah.

 

 

As background, ds never babbled as a baby, though he did make some sounds while chewing or nomming on toys. He's always had difficulty with overstuffing his mouth and gagging on certain textures like yogurt or pudding. We have no idea if his voice would be hypernasal or not (one of the indicators of the submucosal cleft palate) because he simply doesn't speak. I don't really know what his voice sounds like. :( His only sounds are /m/, /v/, /ah/, /oo/, /ee/, and a sort of /s/ that he tilts his head down to produce, and which often sounds like a soft /sh/. He can't combine any of those, so no Mama, for example.

 

DH thinks I should just wait and talk to the ENT in August. I don't understand why someone can't order an x-ray before then to either confirm or rule this out. It's not freaking brain surgery, for goodness sake! It seems to me that if the ENT thought there was zero potential for the submucosal cleft palate, he wouldn't have left any adenoid tissue like he did. A SMCP can also be associated with certain serious genetic disorders, although ds had a microarray genetic testing done right after his autism diagnosis, and the report said that they found no abnormalities. I guess that would have included the most serious (a 22q11.2 deletion), but I'm not sure.

 

I don't want to be the crazy mama pushing for unnecessary tests, but I am having a difficult time with feeling like no one but me is interested in the WHY of ds's speech issues. The only other medical professional in ds's life for me to speak with is his developmental pediatrician, with whom he has an appointment May 1. Barring an emergency, it's virtually impossible to get a chance to speak with her outside regular appointments; she's just incredibly busy. Should I try to get her to investigate whether ds has this cleft issue, or just let it go and talk to the ENT later?

 

If you think I'm being silly, say so, but please do so gently.

[TranquilMind]

DS had surgery to remove his adenoids and place ear tubes yesterday. After the procedure, before they brought ds to the recovery room, the surgeon stopped by and said that ds had done fine, but that he'd been surprised to discover that ds had a bifid uvula. He went on to say that this means ds "nearly had a cleft palate, but it most likely fused most of the way back, just not to his uvula." He explained that he had left some of ds's adenoid tissue, "to ensure that the space between the nose and the mouth is closed." He then proceeded to get out the ear drops and discuss what to do with those, and to write ds's antibiotic prescription and go over how to administer that. Then he sped away, off to do his next surgery.

 

I'd never heard of a bifid uvula, so while I waited on ds to arrive, I googled. Turns out that this is often associated with a submucosal cleft palate--basically a hidden cleft in the soft palate that is covered by tissue so that it does not show up on visual examination. Given that ds has been unable, despite YEARS of speech therapy, to produce even a single consistent word, and only a limited number of sounds, this was intriguing to me. Had we stumbled upon a structural cause for his lack of speech and difficulty eating?!? Even before this surgery was ever discussed, I've been plagued with the idea that we should have long ago tried to rule out any structural or brain abnormalities, but I feel that due to ds's autism diagnosis (he actually scores "mild" on the autism assessments, fwiw), professionals are not particularly concerned with his lack of speech. It feels like they all just figure, "Oh well, of course he's not talking! It's because he's autistic."

 

Once we arrived at home and got ds settled, I called our regular pediatrician's office to see what our next step would be. They told me to call the ENT who'd done the surgery, that HE would be the one to determine that. So, I called the ENT and spoke with the supidest receptionist to ever walk the face of the Earth. :glare: Eventually, I was able to leave a message for the ENT's secretary. She called me back today to say that the doctor wanted me to know that ds's issue "won't affect his health at all, so don't worry about it. He'll discuss any questions you have at his 6 month follow-up visit."

 

Gah.

 

 

As background, ds never babbled as a baby, though he did make some sounds while chewing or nomming on toys. He's always had difficulty with overstuffing his mouth and gagging on certain textures like yogurt or pudding. We have no idea if his voice would be hypernasal or not (one of the indicators of the submucosal cleft palate) because he simply doesn't speak. I don't really know what his voice sounds like. :( His only sounds are /m/, /v/, /ah/, /oo/, /ee/, and a sort of /s/ that he tilts his head down to produce, and which often sounds like a soft /sh/. He can't combine any of those, so no Mama, for example.

 

DH thinks I should just wait and talk to the ENT in August. I don't understand why someone can't order an x-ray before then to either confirm or rule this out. It's not freaking brain surgery, for goodness sake! It seems to me that if the ENT thought there was zero potential for the submucosal cleft palate, he wouldn't have left any adenoid tissue like he did. A SMCP can also be associated with certain serious genetic disorders, although ds had a microarray genetic testing done right after his autism diagnosis, and the report said that they found no abnormalities. I guess that would have included the most serious (a 22q11.2 deletion), but I'm not sure.

 

I don't want to be the crazy mama pushing for unnecessary tests, but I am having a difficult time with feeling like no one but me is interested in the WHY of ds's speech issues. The only other medical professional in ds's life for me to speak with is his developmental pediatrician, with whom he has an appointment May 1. Barring an emergency, it's virtually impossible to get a chance to speak with her outside regular appointments; she's just incredibly busy. Should I try to get her to investigate whether ds has this cleft issue, or just let it go and talk to the ENT later?

 

If you think I'm being silly, say so, but please do so gently.

 

 

I would push for the X-ray, if any good can come from knowing. If something can be improved, go for it. Don't take no for an answer. You think they would find out all this stuff early on.

[Musicmom]

I don't think you're being silly at all. I would definitely pursue it--certainly in May with the pediatrician, if not before. And I'd seek a second opinion if you do not get satisfactory answers from your current health professionals.

[GoVanGogh]

Is he currently in speech therapy? If so, I would not pay for another session until I knew whether or not your child's palate was the source of his speech issues. (Why pay if it is a physical issue?) I would talk to your speech therapist and ask them to help advocate for you.

 

Otherwise, I would most certainly push for answers. I would make an appointment with the ENT, even if you had to 'mislead' the receptionist about the reason for the appointment.

I am saying this based off my own recent bad experience with not being pushy enough with doctors.I let doctors brush off my concerns for year until we got our dx. I regret letting them tell me there was nothing wrong when my gut told me otherwise.

[Laurie]

Even before this surgery was ever discussed, I've been plagued with the idea that we should have long ago tried to rule out any structural or brain abnormalities, but I feel that due to ds's autism diagnosis (he actually scores "mild" on the autism assessments, fwiw), professionals are not particularly concerned with his lack of speech. It feels like they all just figure, "Oh well, of course he's not talking! It's because he's autistic."

 

 

Sadly, I fear that this happens to our kids more than we'd like to believe.

 

You're not being silly. Is the ENT dr. some sort of cleft palate specialist? If not, could you find another doctor/oral surgeon in your area who is an expert? You could check this website and see who might be nearby : http://www.cleftline.org/parents-individuals/team-care/

[Harriet Vane]

I don't think the message you left was conveyed properly by the middleman. Write a letter. Recap what you heard both the doctor and the receptionist say. Then recap his speech and eating difficulties, starting that paragraph with the word, "However." Use the medical diagnosis terms if you know them. Finally, ask that the problem be evaluated specifically to see if this structural difficulty is contributing to his speech/eating difficulties and ask for a consultation and possible x-ray or mri. Make it clear that this is new information, and a new evaluation.

[GoVanGogh]

Sadly, I fear that this happens to our kids more than we'd like to believe.

 

 

 

I agree.

DS is so verbal and expressive that I couldn't get anyone to take my concerns seriously about his learning issue.

I even had one doctor tell me that "any mom would love to have" my problem. (High level of reading/low writing ability) Instead, that was the key to what was going on with DS' brain.

[PeterPan]

nt

[Lecka]

I think it is worth pursuing, also. I think I wiuld try for a follow-up appt earlier, or phoning. I have decent luck talking to nurses and having them relay messages to the doctor. It is how they seem to like doing things where I go (a military clinic though).

 

I would leave a message like "I want to clarify blah blah" and keep calling until you have info or they recommend you come for a follow-up. But that is just how my doctor works, I dont know if that is helpful in general.

[scbusf]

You need to see a Cleft Surgeon. Check that cleftline link and see if there is an experienced Cleft Team near you.

[Tiramisu]

I agree with everyone else. I wouldn't put it off.

 

A friend's dc was recently diagnosed with a relatively recently discovered connective tissue disorder. One of the signs of it is a bifid uvula. This child has had ongoing medical care at one of the best medical centers in the country but it took many years before it was recognized by a specialist somewhere else who knew the signs. I don't think that would explain the speech issues, but if there was something like that going on you would want to know about it so it could be monitored.

 

Having had to deal with medical issues with my dc, I still always second guess myself and question whether it's worth putting my child through possibly unnecessary testing. It's never easy. :grouphug: