Hi everyone, I haven't posted in a while. I can't remember what all my siggy has on my 11 month old son's diagnoses (though I think it has a link to his facebook update page) but the short version is he has a rare, but small genetic duplication, and several issues with neuro, neuromuscular, and developmental stuff. It's a bit much to type out right now...
Anyway, one of the big things we've been dealing with is audiology. He passed his newborn screen, but there were concerns around 5 months that he wasn't really responding to anything sound-wise. This was around the same time that he started having seizure-like shaking episodes (seizures have since been ruled out and his neurologist feels that he may have a movement disorder). When he was evaluated by EI he demonstrating the receptive language skills of a newborn (at 6 and a half months) and expressive of a 3 month old. He also had significant delays in adaptive behavior and more mild delays in all but gross motor (he was ahead of usual motor milestones by months, but completing them in abnormal ways - which was attributed to some issues he has with his muscle tone and reflexes)
He failed OAEs twice in early summer and was scheduled for a sedated ABR in October. We use speech and ASL in our family (my husband has very mild hearing loss and I have some auditory processing issues) and he has been picking up signs well. He has also started responding to sounds (not always but sometimes) and his babbling is picking up too. We are up to 4 consonant sounds, and more grunting and squeals. We got to the ABR appointment and they couldn't do it because he had fluid in his ears. The repeated the OAEs and this time, he passed them. They did soundfield testing but the results were inconclusive and they want to see him back in December for repeated soundfield and OAEs to determine whether an ABR is necessary.
They also sent us to ENT for evaluation. ENT is recommending tubes. We asked for a month to determine if the fluid would go away on its own. The month is up tomorrow. Noah is teething and sick (nose, cough, diarrhea), his sister has an ear infection, but so far his ears aren't infected (but got confirmation at his neuro appointment yesterday that there's definitley fluid in there). I fully expect to be pressured to schedule him for tube surgery tomorrow...
I have only heard about this surgery in kids with recurrent ear infections. He's only ever had one. It's not causing him pain, he's -fine-.
The doctors and nurses are advising that if the ENT recommends
tubes, we should do it because language development is crucial in this
period. However, I feel that the progress he's making is great and it's just an excuse. Whether he hears well or not, he has access to language, and as I said before, he's beginning to babble more. I don't really feel that "language development" is enough of an excuse to put him through surgery and anesthesia, the pain from the tubes, and complicating bathtime and swimming, when his actual "language development" is coming along. And there is NO guarantee that fluid is impacting his language anyway. So it's a surgery that -may- benefit his auditory and verbal skills but I don't know if that justifies the "cons" of putting my infant through the whole surgical mess since it doesn't seem necessary.
Sorry if I'm rambling, I haven't been able to figure all this out on my own, and I don't think my views are necessarily coming out entirely in a way that can be comprehended. What do you think? I don't know how to explain my view to the doctors and I'm not sure if there are any things I'm not thinking about re: the surgery.
Isabelle born via emergency c-section after her heart stopped 04.29.10
asthma, astigmatism, amblyopia, allergies, tongue and maxillary ties
Noah born via RCS 12.09.13
14q11.2 duplication, receptive language and adaptive behavior delays
multiple health concerns under evaluation
follow him here: www.facebook.com/lovefornoah
Re: WWYD re: Ear Tubes, Audiology, ENT
Ds is 5 and has had two sets of tubes. When he turned one, he started having chronic ear infections, and even when he didn't have an ear infection, we started noticing the fluid in his ears was impacting his speech. Honestly, I never thought the procedure was that big of a deal. Ds had his adenoids removed while he had the second tubes put in, and even with that, after a day ds was running around and playing. We left for Myrtle Beach about 10 days after having tubes put in, and even though we had to be a little extra careful with making sure he didn't water in his ears, it wasn't like it was a big deal.
Ds's ENT told me that the only reason they even sedate small children for the procedure is because they have to stay incredibly still. When he's had to do it to an older child or an adult, he just numbs the ear and does right in his office.
Good luck!
Honestly I fought it. He had them placed in at 3 mos, replaced at 11 mos due to another surgery... They fell out around age 2 so in between age 2 - 6 we used a prescription nasal spray until we found out about language delays in kindergarten as well as damage to the ear drums. He has had another set since 6. It has been magical for him ; ) for us it was a quick and easy surgery, but it was hard choosing to sedate him when it was not around another surgery.
1. My son has ear tubes(2 sets) and hearing loss due to genetic deletions. Ear tubes gave him an added 10 decibels on his audiogram.
2. He was not symptomatic and had no infections or pain to my knowledge. The fluid was found on an MRI/CT scan we had done for other reasons "accidentally". It had started to compromise the mastoid cells in his skull bone. Once the skull deteriorates due to being submerged in fluid that infection can move to the brain and cause meningitis.
3. You have a DIRECT history of hearing loss in your child's genetic makeup. The fluid is confusing the issue of being able to provide him full access to ALL sounds that make up spoken language. He deserves all the interventions you can provide him.
4. Do it. It is a simple 5 minute procedure. They poke the ear drum and put a plastic piece of tube in. An ABR is sedated as well, why not get the tubes put in and have the audiologist do the ABR in the recovery room before he is woken up? I find it hard to believe this dual procedure couldn't be arranged. Two birds and all that jazz....
Please let us know what you decided.