Specialists

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.