Crimson Wife Posted February 5, 2015 Share Posted February 5, 2015 We're going to Stanford on Monday for a 2nd opinion and have a follow-up with the audiologist we saw yesterday on the 25th. But it looks like the reason my little one has been struggling so much with certain consonant pairs is because she physically can't hear the difference. The hearing loss isn't subtle, either- the audiologist used the word "major". I definitely wasn't prepared to hear that! Both the electronic in-ear measurements and the test where DD had to put a piece into a jigsaw puzzle when she hear the tone found red flags for mid- and high-pitched sounds. She passed a full audiology exam at Children's-Oakland in Feb 2011 including the electronic measurements so it appears the hearing loss is progressing :-( I'm going to talk to the pediatrician today about getting a neurology referral. DD has never had a brain MRI because I was concerned about the risks of the procedure and our old neurologist didn't think there was any pressing reason to do one. But now I want to rule out any kind of neurological issue causing DD's hearing to deteriorate. I could use any prayers/good vibes you all have to spare! UPDATE 2/9 The audiologist at Stanford confirmed mild hearing loss in both ears for low pitches and profound bilateral hearing loss for high pitches. She thinks DD has been lip reading to fill in the gaps and combining it with context clues to get the gist of what people are saying to her. I was able to move up the follow-up appointment with the original audiologist from the 25th to this Thursday. Quote Link to comment Share on other sites More sharing options...
Spring Flower Posted February 5, 2015 Share Posted February 5, 2015 :grouphug: Quote Link to comment Share on other sites More sharing options...
maize Posted February 5, 2015 Share Posted February 5, 2015 Hugs and prayers! Quote Link to comment Share on other sites More sharing options...
PuddleJumper1 Posted February 5, 2015 Share Posted February 5, 2015 :grouphug: Praying for you and your little one. :grouphug: Quote Link to comment Share on other sites More sharing options...
OneStepAtATime Posted February 5, 2015 Share Posted February 5, 2015 Oh, Crimson Wife I am so sorry! I know you are really stressed right now. Hoping and praying you get solid answers soon for the cause and that it is something that can be addressed. Hugs and best wishes. 1 Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted February 5, 2015 Share Posted February 5, 2015 :grouphug: Quote Link to comment Share on other sites More sharing options...
wapiti Posted February 5, 2015 Share Posted February 5, 2015 Sending prayers, hugs and much luck that whatever you find has known solutions!!! Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted February 5, 2015 Share Posted February 5, 2015 I'm sorry things didn't go well. I think a neurology referral is a great idea. I'm not sure what your specific concerns via MRI--the anesthesiologist monitors sedation closely, and if she is at super high risk (our dd was), they will intubate after the child is out and pull the tube before the child fully wakes to protect the airway. I do highly recommend doing it at a ped hospital if you can; Child Life will have pictures of the machines if you need to do a social story beforehand. Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted February 5, 2015 Author Share Posted February 5, 2015 I'm sorry things didn't go well. I think a neurology referral is a great idea. I'm not sure what your specific concerns via MRI--the anesthesiologist monitors sedation closely, and if she is at super high risk (our dd was), they will intubate after the child is out and pull the tube before the child fully wakes to protect the airway. I do highly recommend doing it at a ped hospital if you can; Child Life will have pictures of the machines if you need to do a social story beforehand. Any time there is general anesthesia (and DD would need to be put under since she's not developmentally capable of lying still long enough to get an accurate scan), there are risks. Plus Dr. Mercola warns against the contrast dye gadolinium as possibly being toxic. Previously, it didn't seem like there were any symptoms consistent with a neurological issue to make the benefits of a MRI worth the risks. DD had an EEG in April of 2013 that was totally normal. However, given the apparent deterioration in DD's hearing, the risk/benefit ratio for a brain MRI totally changes. It's no longer a fishing expedition but a "why is this happening?" thing. I've got a telephone consult with the pediatrician this afternoon. 2 Quote Link to comment Share on other sites More sharing options...
Zoo Keeper Posted February 5, 2015 Share Posted February 5, 2015 Praying for you, Crimson, and adding :grouphug: as well. Quote Link to comment Share on other sites More sharing options...
Lawyer&Mom Posted February 5, 2015 Share Posted February 5, 2015 How upsetting. So glad she had a comprehensive baseline test so they can definitively track the progression of the loss. Sending good vibes! Quote Link to comment Share on other sites More sharing options...
Lecka Posted February 5, 2015 Share Posted February 5, 2015 I am so sorry to hear this. I hope you can find out what is going on soon, and that her MRI goes really well. Quote Link to comment Share on other sites More sharing options...
texasmama Posted February 5, 2015 Share Posted February 5, 2015 (((hugs))) Quote Link to comment Share on other sites More sharing options...
mommymonster Posted February 5, 2015 Share Posted February 5, 2015 I'm sorry that you are all going through this. This may not help, but pediatric anesthesiologists have a variety of sedation options available for MRI sedation. We have often done brain and spine MRIs without general anesthesia for DS (there are lower levels of sedation available). The anesthesiologists we have worked with are amazing. Contrast is pretty much necessary for a MRI like this, so unfortunately the risk is what it is. Do talk it through with your DD's neurologist to see if there are options. We haven't really asked those questions, as DS5's issues trump the MRI risks. If I may gently suggest this, don't be afraid to get second and third opinions. :grouphug: Quote Link to comment Share on other sites More sharing options...
PeterPan Posted February 5, 2015 Share Posted February 5, 2015 I'm sorry this is happening but glad you are onto good help! And as anti-medicine as I am (from my own experiences), we all do what we have to do when it's time. Quote Link to comment Share on other sites More sharing options...
merry gardens Posted February 5, 2015 Share Posted February 5, 2015 :( That's sad news to read. Praying for your daughter. Quote Link to comment Share on other sites More sharing options...
MyLittleBears Posted February 5, 2015 Share Posted February 5, 2015 :grouphug: Hugs! and praying! Quote Link to comment Share on other sites More sharing options...
clemota Posted February 5, 2015 Share Posted February 5, 2015 Hugs and prayers, CW. I hope the MRI goes well and they're able to pinpoint the issue quickly so you can figure out what to do from there. :grouphug: Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted February 6, 2015 Author Share Posted February 6, 2015 I talked with the pediatrician this afternoon, and she's making referrals to both a neurologist and an ENT doctor. We go for a 2nd opinion eval at the Stanford audiology clinic Monday so all I can do right now is wait and pray. I got some leads from Gallaudet University's graduate psychology department on testers experienced in evaluating hearing impaired kids for LD's so if the hearing loss gets confirmed, I have some idea of who might be able to do an accurate assessment. Here I was worried about finding a tester experienced with 2E kids and now I have a potential 3rd E thrown in the mix! [insert head-banging emoji here] 2 Quote Link to comment Share on other sites More sharing options...
kbutton Posted February 6, 2015 Share Posted February 6, 2015 I'm so sorry for the new turn of events, but I am glad this is leading somewhere, and not something that will be brushed off. :grouphug: Quote Link to comment Share on other sites More sharing options...
PeterPan Posted February 6, 2015 Share Posted February 6, 2015 When they say ENT, is there any possibility it's something else like a blockage or earwax or something? Or the audiologists would have caught that? 1 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted February 6, 2015 Share Posted February 6, 2015 Just as a heads up---if they determine that it's sensorineural hearing loss and they don't see impingement of CN VIII in the MRI, know that autoimmune issues can also cause SNHL. They have a variety of blood panels they can run, and a trial with steroids may be helpful in sorting out that angle. Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted February 6, 2015 Share Posted February 6, 2015 I'll be thinking of you this weekend; the wait really stinks. Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted February 6, 2015 Author Share Posted February 6, 2015 When they say ENT, is there any possibility it's something else like a blockage or earwax or something? Or the audiologists would have caught that? Something simple to treat would be a best-case scenario (assuming that the testing at Stanford next week confirms a hearing problem). I think it's worth a consult with the ENT to check, but given that the audiologist found concerns with the hair cells I'm not super-optimistic about that. Just as a heads up---if they determine that it's sensorineural hearing loss and they don't see impingement of CN VIII in the MRI, know that autoimmune issues can also cause SNHL. They have a variety of blood panels they can run, and a trial with steroids may be helpful in sorting out that angle. Autoimmune issues are definitely a concern of mine between the gluten intolerance and the autism diagnosis. Our old pediatrician ran a whole bunch of tests back in Jan. 2012 shortly after the autism diagnosis (I showed her the list of recommended tests from Dr. Kenneth Bock's Healing the New Childhood Epidemics and she did a lot of them). But obviously a lot can change over 3 years. 1 Quote Link to comment Share on other sites More sharing options...
Heathermomster Posted February 6, 2015 Share Posted February 6, 2015 :grouphug: Quote Link to comment Share on other sites More sharing options...
Princess Ariel Posted February 6, 2015 Share Posted February 6, 2015 :grouphug: Wishing you all the best and saying a prayer for your little girl! Quote Link to comment Share on other sites More sharing options...
wapiti Posted February 6, 2015 Share Posted February 6, 2015 Just as a heads up---if they determine that it's sensorineural hearing loss and they don't see impingement of CN VIII in the MRI, know that autoimmune issues can also cause SNHL. They have a variety of blood panels they can run, and a trial with steroids may be helpful in sorting out that angle. The possible autoimmune angle is very interesting - I did not know this. Quote Link to comment Share on other sites More sharing options...
FairProspects Posted February 7, 2015 Share Posted February 7, 2015 :grouphug: Praying for your family as you navigate this latest development. Quote Link to comment Share on other sites More sharing options...
fdrinca Posted February 7, 2015 Share Posted February 7, 2015 Good thoughts for you! We opted for an MRI after much debate for my oldest DS. He was sedated, and it went as smoothly as those things go, but an MRI isn't a small issue. We were glad we did, as it revealed a congenital defect which resulted in his hearing loss, thereby resolving the question marks around his complete sensorineural hearing loss. Quote Link to comment Share on other sites More sharing options...
ssavings Posted February 7, 2015 Share Posted February 7, 2015 Prayers for you Quote Link to comment Share on other sites More sharing options...
ikslo Posted February 7, 2015 Share Posted February 7, 2015 :grouphug: Quote Link to comment Share on other sites More sharing options...
Paige Posted February 7, 2015 Share Posted February 7, 2015 My DS has similar hearing loss. He wears hearing aids and it helps tremendously. We didn't think it would help much, but it makes everything so much easier! Unfortunately, DS still does not realize what he's not hearing without them and getting him to wear them is difficult. Everyone told us there was no reason to get an MRI or CAT scan or anything like that. DS did not have many ear infections as a young child, no serious illness, or anything like that, and also passed all his hearing tests before age 6. I'm definitely going to ask again about an MRI or autoimmune issues. We have no known cause for DS's hearing loss either. I wouldn't assume it is progressing; she may have just had a bad test or the loss occurred after her last test and is stable. DS has had a couple tests he "miraculously" passed since his first failed test so my impression of their reliability is not the best. He had later tests that showed the exact same loss as before. DS's first failed test was when he was 6 and all of his failed tests have been similar and he's now 13. Also, while DS's primary hearing loss is not related to fluid or ear wax, etc., those kinds of issues can affect his hearing day to day, so if he has a cold or something even with his hearing aids it is harder for him to hear than usual during those times. I pray that everything goes as well as possible for your DD! Quote Link to comment Share on other sites More sharing options...
1shortmomto4 Posted February 7, 2015 Share Posted February 7, 2015 I am a mom to a now 21 year old that has a severe hearing impairment - he is unable to hear the high-pitched sounds. For some reason, over the years, he passed the screening tests in the Peds office during well visits (we now know that he was lip reading and was excellent on picking up on social cues). They failed to dx until he was 15 but now we know that this loss was present from birth. We have watched old family videos and now see the evidence. I'm not sure why the continued loss in your child but it may come to a stop. We've learned that it is genetic (MRI ruled out any other issues) and at any given day/time - he could lose more hearing with absolutely no rhyme or reason. It is important to protect the hearing that the child currently retains. My ds has done well with hearing aides and I wish that he could have had them so much sooner because it caused his development/mental maturity to pause somewhere along the line and only recently has just about caught up to where he should be. It is interesting to study how kid's minds seem to go dormant or pause as the disability progresses until it is found and you work up from there. With my ds's case it obviously was years of "it's just his behavior and he needs to take more care, time, _______" (insert whatever behavior in the blank). This is hard and there is a grieving process to this dx not only for the child but for the parents. One step at a time, one day at a time. On the bright side, my ds has been attending the local CC for the past 2 years and doing really well but it sure hasn't been an easy road. 2 Quote Link to comment Share on other sites More sharing options...
EKS Posted February 8, 2015 Share Posted February 8, 2015 :grouphug: Quote Link to comment Share on other sites More sharing options...
J-rap Posted February 8, 2015 Share Posted February 8, 2015 I don't usually post in this group, but I saw your thread under New Content and wanted to reply. My daughter passed our city's required pre-school screening hearing test at age 3 or 4, but by 6 or 7 was no longer hearing the mid to low tones. It turns out she has a bone calcification in her ears, believed to be caused by her bones developing abnormally. It just took a few years for this to become pronounced enough to become a problem, but has not progressed at all since then. She is now 19 and is doing fine. She wears hearing aids and is in college. Every now and then, she'll come up with a word that I realize she has never heard correctly. For example, just the other day, she told me she had never heard the second "f" sound in "fifth," so always thought it was "fith." Funny. But other than that, she does great and her hearing loss has never been an issue. In fact, she is a singer. It baffles everyone how she can sing in tune! Anyway, just wanted to give you a positive story. :) 5 Quote Link to comment Share on other sites More sharing options...
imagine.more Posted February 8, 2015 Share Posted February 8, 2015 ((hugs)) to get a whole new diagnosis is stressful! I agree that an MRI would be a good idea at this point. I wish we could get an MRI for our daughter to find out if her issues are FASD related (she's adopted) or a random congenital defect or developmental or what. She also has unexplained profound sensori-neural hearing loss, they didn't properly diagnose her and get her hearing aids until age 8 because of delays in getting an appointment, etc. I will say hearing impairment has been both less troublesome and more troublesome than I anticipated when we agreed to adopt DD :) In day to day life she wears aids and it's no big deal. I watch her in the kitchen because she can't hear the tea pot or the hissing of the gas burners when they don't light properly. We also know if a fire happened we'd likely need to go get her just like the little kids because she doesn't hear the alarm always. But otherwise I just make sure she can see me (no calling to her from upstairs, lol!) and she's fine. She has a speech impairment but her articulation is decent and we all understand her fine. She's really a pretty normal kid and has pretty good independent living skills for her age. The biggest issue I've seen is how big the low vocabulary issue has become. It affects every part of life for her, poor thing. She struggles to understand so much and like J-rap above, we often find she has been mishearing and had no idea how it was said really. Some of those mistakes are funny and others are sad. Also, as you found when we're doing reading lessons (we use Orton Gillingham) I need to use tricks to help her identify differences in sounds. We explicitly teach and encourage her lip reading tricks and only do lessons with me sitting at the table across from her with zero distractions around. With that and wearing her properly working hearing aids she does really well with the Barton lessons. I also teach her self-advocacy in asking politely for me to repeat if she doesn't hear instead of pretending she does hear me. You've done really well to get your DD tested periodically and get her a diagnosis nice and early. She won't have missed out on as much yet in language exposure. I hope the MRI gives some more answers and maybe some good hope for the best strategies and treatments! 3 Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted February 10, 2015 Author Share Posted February 10, 2015 It's official, though DD needs a bunch more testing to determine what exactly might be causing the profound hearing loss and what options there might be to treat it. Hearing aids are a certainty and a cochlear implant is out. I have to call the ENT and neurology clinics tomorrow to find out when they can see her. Also I need to get a referral for genetic testing from the pediatrician. Quote Link to comment Share on other sites More sharing options...
OneStepAtATime Posted February 10, 2015 Share Posted February 10, 2015 CW big hugs and all the best wishes and prayers as you navigate these waters. Hopefully they can find the cause and perhaps it is at least partially reversible. Or can be stopped at this point. :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
PeterPan Posted February 10, 2015 Share Posted February 10, 2015 That's a lot to digest. Will they move on the hearing aids soon or wait for other things first? Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted February 10, 2015 Author Share Posted February 10, 2015 I was able to talk with the original audiologist briefly today as I got back from the Stanford appointment at the very end of the business day. I felt a bit funny showing her the 2nd opinion report but she was totally professional about it and said that it was good to see a confirmation of what she found last week in her testing. She's going to do some additional testing in the middle range to see precisely what the drop off is. Then she'll do what sounds kind of similar to an EEG where they measure the brainwaves to check the functioning of the auditory nerve. Not sure if that will be on Thursday or if we'll need to come back. Poor DD was getting so frustrated by the task because she wanted to put the puzzle pieces into the puzzle and she couldn't hear the tones so she was just guessing randomly when to do it. I hate to put her through that unpleasant experience for the 3rd time in 8 days, but we need to figure out exactly what she can and cannot hear. Quote Link to comment Share on other sites More sharing options...
texasmama Posted February 10, 2015 Share Posted February 10, 2015 I was able to talk with the original audiologist briefly today as I got back from the Stanford appointment at the very end of the business day. I felt a bit funny showing her the 2nd opinion report but she was totally professional about it and said that it was good to see a confirmation of what she found last week in her testing. She's going to do some additional testing in the middle range to see precisely what the drop off is. Then she'll do what sounds kind of similar to an EEG where they measure the brainwaves to check the functioning of the auditory nerve. Not sure if that will be on Thursday or if we'll need to come back. Poor DD was getting so frustrated by the task because she wanted to put the puzzle pieces into the puzzle and she couldn't hear the tones so she was just guessing randomly when to do it. I hate to put her through that unpleasant experience for the 3rd time in 8 days, but we need to figure out exactly what she can and cannot hear. Google sedated ABR for the test you mention in the middle paragraph. My older ds had one when he was eighteen months old. 1 Quote Link to comment Share on other sites More sharing options...
Merry Posted February 10, 2015 Share Posted February 10, 2015 If your dd has a profound hearing loss, then I suggest that you and your family learn sign language together. It would be a fun activity which would help her in the long run. My dd and ds both have mild hearing loss but they still find it easier to communicate in sign language as it is less fatiguing mentally than trying to understand all of spoken speech all day long even though they wear hearing aids. Also if your dd is autistic, (i am not sure if she is), then sign language is also helpful for her according to an article I found on the Signing Times website. Sign language is supposed to give the autistic children another avenue to develop language skills. Quote Link to comment Share on other sites More sharing options...
PeterPan Posted February 10, 2015 Share Posted February 10, 2015 Poor DD was getting so frustrated by the task because she wanted to put the puzzle pieces into the puzzle and she couldn't hear the tones so she was just guessing randomly when to do it. I hate to put her through that unpleasant experience for the 3rd time in 8 days, but we need to figure out exactly what she can and cannot hear. Poor thing! But what a good sport she's being about it! Quote Link to comment Share on other sites More sharing options...
Beaniemom Posted February 10, 2015 Share Posted February 10, 2015 :grouphug: My son has bilateral profound hearing loss so I know some of the struggles you are going through. I know one thing the ENT might look for in an MRI or CT scan is an enlarged vestibular aqueduct that could be involved in a progressive hearing loss. I hope you are able to get more answers at your next visit. Quote Link to comment Share on other sites More sharing options...
merry gardens Posted February 10, 2015 Share Posted February 10, 2015 :grouphug: More hugs and prayers. Quote Link to comment Share on other sites More sharing options...
Soror Posted February 10, 2015 Share Posted February 10, 2015 (HUGS) Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted February 10, 2015 Share Posted February 10, 2015 Huge hugs. My dd lost all hearing over a few months. It is very hard news to hear. Quote Link to comment Share on other sites More sharing options...
MyLittleBears Posted February 10, 2015 Share Posted February 10, 2015 :grouphug: Continuing to pray. I know it can be hard cope with our kids difficulties. I hope you have a good support group in your area. Best wishes. Quote Link to comment Share on other sites More sharing options...
kbutton Posted February 10, 2015 Share Posted February 10, 2015 I'm sorry about the diagnosis. I hope you find lots of open doors and excellent intervention to smooth the path as much as possible. That is a huge adjustment. 1 Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted February 26, 2015 Author Share Posted February 26, 2015 She goes in for her brain MRI tomorrow. It took me paying out of pocket to see her old pediatric neurologist to get our HMO to schedule one, but the upside of that neurologist visit is that she let us know about a program that DD qualifies for now with a "low incidence" disability. I just have to get the school district to amend the IEP to classify her as a LID student. They have the financial incentive to do so because it means more money for them, but the wheels of buraucracy turn very slowly... 3 Quote Link to comment Share on other sites More sharing options...
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