They're great, but some are more personable than others.
So about a little over a month after the ABR and MRI we had our appointment with the specialist Sherry had
recommended- an ENT who specialized in Infant and Child hearing loss. While we were waiting for the appointment I had been informed about two causes of hearing loss that could likely be Tiny's problem. One was LVA/EVA, or large vestibular aqueducts- it's a malformation of the inner ear and can cause hearing problems and balance issues. There isn't really treatment for this. We had also been informed for the first time about CMV, or Cytomegalovirus- which can cause hearing loss, vision loss, and cognitive disabilities, BUT if caught can be treated by antivirals.
We got to the doctors office, filled out the ever flowing paper work, and waited in a busy waiting room with a ton of other kids and watched Tiny have a pretty good time coloring across the table with a little boy.
We did the tell the story/history to the nurse as she typed into a computer and nodded at us and then sat and waited for the doctor. He came in, looked over the notes, quickly introduced himself and then pulled up Tiny's MRI he had looked over along with her medical files, and the notes Sherry had given him and basically told us it didn't look
like anything he could help with in his specialty.
We asked about LVA, which he quickly pointed to some blobs on the MRI and said they looked normal. He did however have some suspicions about CMV and had a us do a blood and urine test on her. We didn't have a "blood spot card" which seemed to really irritated him, and he sent us down to the blood draw room and that was the last time we saw him.
That was a chore in and of it's self. We were able to draw her blood with some tears but nothing to traumatic, but getting a urine sample was difficult as Tiny had apparently just gone as we headed that way and she didn't like the little bag they stuck on her, so we had to sit around and we fed her and kept trying to get her to drink juice and water and eat popcicles and all she wanted to do was have a nap. It wasn't great having the nurses come in our room every 15 mins to see if she'd gone yet, like we were taking up precious space they needed even though there were four other open rooms they were rotating through.
When Tiny finally did go, it wasn't much but they told us they'd "make due." Seriously ladies, if there was a magic wand I could wave to make my kid pee when I wanted, I would have waved it and not sat around for almost 2 hours forcing juice and crackers on her.
We did leave with results- Tiny did have CMV- and we were given another referral to another specialist to really determine if the cause of the loss was CMV, because she could have gotten it at any point and couldn't be for sure it was what had caused it all, or was still causing problems. If CMV is caught soon enough it can be stopped and to an extent reversed so we were very motivated to find out.
Over all, I was glad for a chance to get more information but the way we were rushed and treated this time, left a little bit of a sour taste in my mouth.
After a minor mix up with the referral- we were told that doctor didn't take new patients or kids when we called the first time- we called the 1st specialist and they explained that we had to tell them up front we had a referral for CMV specific. We did and were told that it would be at least 2 months until the next appointment time. We took and asked to be put on the waiting list.
A few weeks later we got a call that there was an opening in about 2 weeks and would we be interested. The answer was YES even though the Husband was going to be gone for work training.
I traveled back up with my kids, again staying with my gracious sister-in-law, who again watched Bug while I went with just Tiny to another doctors office. We checked in, and again played in a busy waiting area with a bunch of other kids.
When we were taken back, it was a resident who took her medical history. She interacted with us, and asked a lot of in depth questions to fill out the history they already had in their system from past visits to affiliated offices/hospitals.
We did wait awhile after she left before Dr. B came in to talk to us, but he brought toys and was very good with Tiny as he checked her out. He did some motion tests with her and asked how her balance was and watched her walk and run and felt the bones of her head and arms and legs. After his exam he pulled up Tiny's MRI and showed me specifically why he thought she had CMV related hearing loss.
The brain gets extra pockets of white matter while CMV runs it's course and Tiny had all the right pockets in all the right places. Since we didn't have a blood spot card, he wouldn't say with 100% certainty that she had contracted it gestationally, but he did tell me if he was to make a diagnosis he'd say with 97% certainty that gestational CMV was the culprit.
He gently let me know that Antivirals wouldn't do any good in our case since she was already 2 1/2 by now and antivirals only showed success in some cases, he estimated between 60-80%, if it was caught early and treated before 18 months. I had prepared myself for that answer, even if I hoped it would be an option.
But Dr. B was actually really great. He's a lead researcher of CMV and so he had a lot of knowledge to share and answers to questions. Once he was in with Tiny and myself he spent a good hour or more going over everything, asking if I had any questions, and then waiting while I tried to think of any, and answering ones I did. He told me that Tiny missed a window in Utah legislation that had now made it mandatory for doctors to do follow up OAE's on kids at 3 months and 6 months. He'd helped the woman in the House of Representatives with her legislation after her granddaughter had lost her hearing to CMV. He was kind and didn't rush me, was gentle and friendly with Tiny and in the end he gave me a business card with an extra phone number to get in touch with him that he wrote down.
Since the Husband couldn't be there, he said to please call and ask any more questions he might have and he'd do his best to answer them.
He gave me a lot of information about CMV and I plan to write
another post about it and what I've learned and link some articles for
anyone wanting to read more.
I know they can't all take the time Dr. B did, but I was glad that when it came down to finally getting and knowing a cause, I got him through the grapevine of referrals. You can't always pick who you get, but hopefully you can at least get the answers you need.
Observations:
Even not great experiences can yield another step in the right direction. I'm glad for that perspective now, but at the time I felt like we were going through the grinder with some of the people "pushing us through."
I can look back now and realize that even if it was irritating to be rushed through at times, it made the times that were important and the time taken more relieving- even if the news wasn't great.
I also had learned from past phone/office assistants/referrals that I wasn't afraid to call back an office and say "Hey, they say they don't take patients now, did my referral get mixed up or did I call the wrong number?" A phone call to fix a mix up is an easy thing to do to keep on the trail of answers.
Tuesday, March 1, 2016
A note on Unscolicited Advice/Opinions/etc
Once we had Tiny's diagnosis of "Profound Hearing Loss" it seemed everyone I talked to had been holding back their expert advice and opinions.
Part of me was glad that people we knew were interested in what was going on with my daughter. They wanted to know how she was doing, what we'd found out, what we were going to be doing. What had caused it, most often.
The conversation I'd basically memorized from telling our close family started to happen everywhere- at the park, at the store, at church, on Facebook as friends and acquaintances found out and asked.
My mouth wore out from the telling and retelling- which is saying something from a big mouth talker like myself.
Most of the time I didn't mind. Most of the time people realized there was this tender line they shouldn't cross with their words, because really, the specifics were none of their business.
Then there were "those people." The ones that turned me into a delicately veiled boiling rage monster with things they said.
First type of person- the quiet accuser
I get it. This is an odd situation. There isn't a history of deafness in our family, she'd had 2 ear infections, but those had cleared up easily with medication. But the dirty little thing that would come out in some conversations was a subtle accusation.
Had I or her father, her parents, caused this? Or in other words- had we abused our kid.
We play rough with our kids. Their Dad adores them, but he also quietly hoped to have sons, but when he got daughters he decided they were and are just as great and that they can be tough and love the things he loves as well. So we play rough. I stressed for a long time thinking over every bump and scuff and bruise I could remember. I remembered Tiny taking a dive off the couch into the bar of an exercise trampoline, the time her sister accidentally ran her down with her bike and she fell on the cement a little harder than a normal toddler tumble.
When we found out about her hearing loss I panicked and did a bunch of googling about hearing loss from injury. Even after we knew from the MRI that injury was not the reason in Tiny's case I was still convinced it was something I had done.
I admit this now, because I feel it was an important thing for me to come to terms with. I could have hurt my child in those instances. Those things could have been the reason she lost her hearing. To this day I play things over and over in my mind, even knowing what I know now.
Head injury can cause hearing loss. Period. Did we purposely harm our child? No. But the way people talk can make you feel like you have. With one person I had to finally say, "As far as they can tell from her MRI she has no brain damage of any sort," to finally get the look of suspicion from their face.
If you have real concerns, if you've witnessed a child being abused, please report it, but if you're just digging, stop it. Please don't be this person unless you have a genuine reason to be. I agonized enough on my own that I was the problem, that I was the cause, that something I hadn't noticed or some rough play we'd had had hurt her. I promise you, I felt guilty enough for things that I hadn't even done.
Second type of person- the Doctor that isn't a doctor
Before we found out what caused Tiny's hearing loss, we had lots of people tell us things we already ruled out. These people usually have good intentions, I think. Conversations usually went something like this-
"Are you sure she just doesn't need tubes? Are they sure it isn't fluid? I had a friend who's kid was having speech problems and they found out he couldn't hear because of fluid."
Yup, pretty sure the three actual doctors we've seen have ruled out fluid, but please, why don't YOU look in my kids ears and tell me if that's the problem.
Or
"Have they checked the shape of her ear canal? If it's shaped wrong that can cause problems and they have surgery for that now you know."
Yeah, the ENT told us this wasn't our problem after looking at scans of my kids skull and BRAIN and showing them too me... which is a weird experience watching your kids face peal away through black and white MRI images.
Or
"I bet it's something they can give you some medicine for, most likely an antibiotic will clear it all up."
Don't I wish.
I figure they were trying to reassure me, but most of the time it felt patronizing, like I hadn't already asked those things.
Third type of person- The one's who should think more carefully before speaking
These people can have the best intention in the world, and I still can't stop the feeling of my chest tightening up when I think about these conversations.
Because this is how it basically goes, somewhere near the end of the conversation-
"Well, this is tough, but there are lots of technologies out there now. So when do you think you'll have the surgery to fix her. You know with those hearing aid things that go in their head? "
UGH! and TRIPLE QUADRUPLE UGGGGH!
First of all- my child isn't broken, so therefore doesn't need to be fixed. I reeeeally had to bite my tongue on this one. And it happened more than once.
Second- Please, if you don't know what "that thing" is called, you probably shouldn't be talking about it, to anyone, but especially not with a slightly traumatized parent who's brain is not in the best of places.
Third- that is a very big and very personal decision. If we don't talk on a regular basis, if the only time we see each other is in passing at the grocery store, or the library, or the park, please just stick with "Hope things work out." Or even just ask about how she's doing and what's been working.
Forth and final person- The overly opinionated almost stranger
I learned really quickly that people are very opinionated about what we should or should not do with Tiny now that we knew she was deaf.
If these people had any kind of experience with a deaf, hard of hearing, or implanted person, they let me know just what they thought we should do, and sometimes in very harsh ways.
I got everything from "God made her this way so you should let her be this way" to "I can't believe you wouldn't consider implants in today's world" to "Cochlear implants are awful and dangerous. Don't do it. She doesn't need them."
I plan to write about our decision making process in another post, but I will briefly say this- You have a right to an opinion but what you don't have a right to do is tell someone what to do for their child or their family. Share an article, share a personal experience with/about someone who is deaf, hard of hearing, or implanted, but even if you're family or a really close friend- refrain from absolutes and make sure that whomever you are talking to knows, that while you might make a different choice than them, you will support the decision they feel is best.
It was very difficult to hold it together a lot of the time. Okay. Most of the time. It was hard to have these conversations in grocery isles and between book shelves at the library. Sometimes I wish someone would have said "Hey, I'd love to hear more, can we go out to get a drink or have our kids play?"
Even if things weren't "normal" anymore, sometimes I just needed to feel like it was because, life at this point was traumatic enough.
Observations:
I generally just nodded my head and said things like "I'll have to look into that." or "The doctor ruled that out," or "We aren't sure if she'll be eligible for cochlear implants" and then I'd go and vent to my husband and pull out the chocolate or ice cream.
Location can really be everything as they say. If I'm with my kids in the grocery store and they are pulling things off of shelves, it might not be a good place to try and see what's up. Public places aren't all bad, but it's best if there is an element of distraction for my kids if they're with me and you want to talk. Even if my kids aren't with me, answering personal questions in the isle of grocery store wasn't the greatest thing.
The best thing I can say about these conversations is this- I've learned myself to do my best to not ask insensitive questions. Am I perfect? No, certainly not. Do I try? For sure.
I know people in general just have no idea what to say to someone going through something they've never experienced, but there are things that you can say regardless- "I'm sorry you're going through a hard time." "I don't know what this is like, but if you just need someone to talk to or cry to, I'm willing to just listen and be here for you." "I'll be praying for/thinking of you and wishing you well."
No, you can't fix this situation, or those like it/harder than it, for someone but you can certainly be there for them.
Part of me was glad that people we knew were interested in what was going on with my daughter. They wanted to know how she was doing, what we'd found out, what we were going to be doing. What had caused it, most often.
The conversation I'd basically memorized from telling our close family started to happen everywhere- at the park, at the store, at church, on Facebook as friends and acquaintances found out and asked.
My mouth wore out from the telling and retelling- which is saying something from a big mouth talker like myself.
Most of the time I didn't mind. Most of the time people realized there was this tender line they shouldn't cross with their words, because really, the specifics were none of their business.
Then there were "those people." The ones that turned me into a delicately veiled boiling rage monster with things they said.
First type of person- the quiet accuser
I get it. This is an odd situation. There isn't a history of deafness in our family, she'd had 2 ear infections, but those had cleared up easily with medication. But the dirty little thing that would come out in some conversations was a subtle accusation.
Had I or her father, her parents, caused this? Or in other words- had we abused our kid.
We play rough with our kids. Their Dad adores them, but he also quietly hoped to have sons, but when he got daughters he decided they were and are just as great and that they can be tough and love the things he loves as well. So we play rough. I stressed for a long time thinking over every bump and scuff and bruise I could remember. I remembered Tiny taking a dive off the couch into the bar of an exercise trampoline, the time her sister accidentally ran her down with her bike and she fell on the cement a little harder than a normal toddler tumble.
When we found out about her hearing loss I panicked and did a bunch of googling about hearing loss from injury. Even after we knew from the MRI that injury was not the reason in Tiny's case I was still convinced it was something I had done.
I admit this now, because I feel it was an important thing for me to come to terms with. I could have hurt my child in those instances. Those things could have been the reason she lost her hearing. To this day I play things over and over in my mind, even knowing what I know now.
Head injury can cause hearing loss. Period. Did we purposely harm our child? No. But the way people talk can make you feel like you have. With one person I had to finally say, "As far as they can tell from her MRI she has no brain damage of any sort," to finally get the look of suspicion from their face.
If you have real concerns, if you've witnessed a child being abused, please report it, but if you're just digging, stop it. Please don't be this person unless you have a genuine reason to be. I agonized enough on my own that I was the problem, that I was the cause, that something I hadn't noticed or some rough play we'd had had hurt her. I promise you, I felt guilty enough for things that I hadn't even done.
Second type of person- the Doctor that isn't a doctor
Before we found out what caused Tiny's hearing loss, we had lots of people tell us things we already ruled out. These people usually have good intentions, I think. Conversations usually went something like this-
"Are you sure she just doesn't need tubes? Are they sure it isn't fluid? I had a friend who's kid was having speech problems and they found out he couldn't hear because of fluid."
Yup, pretty sure the three actual doctors we've seen have ruled out fluid, but please, why don't YOU look in my kids ears and tell me if that's the problem.
Or
"Have they checked the shape of her ear canal? If it's shaped wrong that can cause problems and they have surgery for that now you know."
Yeah, the ENT told us this wasn't our problem after looking at scans of my kids skull and BRAIN and showing them too me... which is a weird experience watching your kids face peal away through black and white MRI images.
Or
"I bet it's something they can give you some medicine for, most likely an antibiotic will clear it all up."
Don't I wish.
I figure they were trying to reassure me, but most of the time it felt patronizing, like I hadn't already asked those things.
Third type of person- The one's who should think more carefully before speaking
These people can have the best intention in the world, and I still can't stop the feeling of my chest tightening up when I think about these conversations.
Because this is how it basically goes, somewhere near the end of the conversation-
"Well, this is tough, but there are lots of technologies out there now. So when do you think you'll have the surgery to fix her. You know with those hearing aid things that go in their head? "
UGH! and TRIPLE QUADRUPLE UGGGGH!
First of all- my child isn't broken, so therefore doesn't need to be fixed. I reeeeally had to bite my tongue on this one. And it happened more than once.
Second- Please, if you don't know what "that thing" is called, you probably shouldn't be talking about it, to anyone, but especially not with a slightly traumatized parent who's brain is not in the best of places.
Third- that is a very big and very personal decision. If we don't talk on a regular basis, if the only time we see each other is in passing at the grocery store, or the library, or the park, please just stick with "Hope things work out." Or even just ask about how she's doing and what's been working.
Forth and final person- The overly opinionated almost stranger
I learned really quickly that people are very opinionated about what we should or should not do with Tiny now that we knew she was deaf.
If these people had any kind of experience with a deaf, hard of hearing, or implanted person, they let me know just what they thought we should do, and sometimes in very harsh ways.
I got everything from "God made her this way so you should let her be this way" to "I can't believe you wouldn't consider implants in today's world" to "Cochlear implants are awful and dangerous. Don't do it. She doesn't need them."
I plan to write about our decision making process in another post, but I will briefly say this- You have a right to an opinion but what you don't have a right to do is tell someone what to do for their child or their family. Share an article, share a personal experience with/about someone who is deaf, hard of hearing, or implanted, but even if you're family or a really close friend- refrain from absolutes and make sure that whomever you are talking to knows, that while you might make a different choice than them, you will support the decision they feel is best.
It was very difficult to hold it together a lot of the time. Okay. Most of the time. It was hard to have these conversations in grocery isles and between book shelves at the library. Sometimes I wish someone would have said "Hey, I'd love to hear more, can we go out to get a drink or have our kids play?"
Even if things weren't "normal" anymore, sometimes I just needed to feel like it was because, life at this point was traumatic enough.
Observations:
I generally just nodded my head and said things like "I'll have to look into that." or "The doctor ruled that out," or "We aren't sure if she'll be eligible for cochlear implants" and then I'd go and vent to my husband and pull out the chocolate or ice cream.
Location can really be everything as they say. If I'm with my kids in the grocery store and they are pulling things off of shelves, it might not be a good place to try and see what's up. Public places aren't all bad, but it's best if there is an element of distraction for my kids if they're with me and you want to talk. Even if my kids aren't with me, answering personal questions in the isle of grocery store wasn't the greatest thing.
The best thing I can say about these conversations is this- I've learned myself to do my best to not ask insensitive questions. Am I perfect? No, certainly not. Do I try? For sure.
I know people in general just have no idea what to say to someone going through something they've never experienced, but there are things that you can say regardless- "I'm sorry you're going through a hard time." "I don't know what this is like, but if you just need someone to talk to or cry to, I'm willing to just listen and be here for you." "I'll be praying for/thinking of you and wishing you well."
No, you can't fix this situation, or those like it/harder than it, for someone but you can certainly be there for them.
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