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Here I am again - OT (not Crohn's related)

Sarah is doing better on the high preds. We're watching and waiting. No BM since about 36 hours ago. She's still got pain but no more bleeding.

Now I've shifted gears to freaking out about Izzy. She just turned 2 yesterday and she's still barely speaking. She UNDERSTANDS words, she just won't say them. She probably has 40 or 50 words but if you add the qualifier that someone besides mom and dad must understand them, she probably has 5.

When she does speak, reluctantly, she talks like a deaf person. It sounds very similar to me, anyway. She talks from the back of her throat and fails to enunciate. She doesn't use teeth or tongue to form sounds except in a few isolated cases. She has inflection and tone down cold, which is why we can understand her, but that's all.

She had very severe jaundice when she was born, which I touched on a bit in my Sarah blog. The hospital and her pediatrician were cavalier about it and we don't believe they acted fast enough or treated long enough. She was discharged looking very, very brown and with a bilirubin count still too high for comfort.

I'm starting to think she has "mild" kernicterus, if there is such a thing. There seem to be few or no support forums online that even come close to this one in terms of usability and an active community. There's P.I.C.K. which I'm still waiting for "permission" to join, FFS.

We've in the past had Izzy evaluated by a neurologist for twitches and convulsions in her eyes, arms, and back but we have always shied away from an EEG because we don't want to frighten her and we are dead set opposed to treating her with anti-convulsants anyway.

She doesn't SEEM to have vision problems, but we're not entirely sure because it's difficult for her to communicate what she's pointing at so it's hard to test distance vision.

Early intervention people have been out to test her and said she was "normal" at 20 months, but I think they have a very high tolerance for what exactly "normal" is. They said she could be re-evaluated in 3 months if she hadn't improved.

Well it's been 4 and she's barely improved. She says maybe 2 more words, poorly.

I'm trying to get an appointment with an ENT to get her hearing tested. I wish I could talk to somebody who actually knows something about kernicterus besides what they sort of read in an article once. We were told that kernicterus is ALWAYS severe and ALWAYS causes palsy and retardation so Elizabeth CAN'T have it, but I'm seeing things now online to indicate that this isn't true.

But nobody here, her pediatrician, her neurologist, anybody at all, seems to want to discuss it. I think they're worried to get involved because nearly every kernicterus case results in a malpractice suit against the birth hospital, OB, whatever.

I just want to know what's going on with Izzy so that we can address it but I'm hitting this Wall of Silence or being given what appears to be misinformation. I'm like, the King of internet research when it comes to medical crap but I'm getting almost nothing and becoming extremely frustrated, here. :ymad:
As you would know a lot of babies are jaundiced when born, so that in itself is not so much of an issue. Whether that relates to her poor speech is unclear. As you say, it may well be that she has some hearing issues - if you clap behind her back does she notice? Some kids are quite slow in talking and it resolves itself. I would hesitate on calling it a form of kernicterus as that is so rare, and her symptoms are not typical. Until you check her hearing and vision I hope you manage to stay calm - it isn't easy, especially when there are people not taking it seriously enough for you. Maybe there's a hearing centre that can do a quick check? It really could be something that is quite treatable.
All the best to you. Look after yourself.
I'm going to schedule a formal hearing test and we're waiting on another speech eval. I emailed Dr. Shapiro at kernicterus.org and hopefully he'll respond to my questions. Thanks!

Yes, Izzy can hear well enough to respond to sounds. She follows spoken directions. She just seems to have a lot of difficulty producing speech. I wonder how well she's hearing. She may be responding to familiar instructions based on rhythm, syllables, inflection... and not REALLY hearing the words, you know?
when i was little no one could understand what i said besides my parents, it was clear i was could speak but it was completely in audible to anyone else. 3/4 i went to speech therapy and by the time i was in Kindergarten not problems. I do have a learning disability and that was first signs, and exactly I was not interpreting the sounds correctly. 25 years later still have a learning disability but finished college, working on a grad degree and have a job many people envy. I don't know when speech therapy can start but it's a thought. that she could need...
Good luck.


Hiya Muppet

I was concerned about Jordan (17) when he was two. He made strange noises but never spoke. We took him to speech therapy and Jessica (19) came with us.
Turns out Jess did all the talking for him cos he couldn't be bothered! Seriously.
He still didn't speak until he was 4. To encourage him to ask for something we had to tell Jess to leave the room!
Please don't worry about this, Izzy will speak when she wants to.
good luck xxx


Super Moderator
Hey Muppet,

Well I certainly hope that Izzy doesn't have Kernicterus but I don't see why the disorder shouldn't have varying degrees of severity. Why wouldn't there be varying degrees dependent upon when treatment was initiated...(shrug).

Could she have an Auditory Processing Disorder? I expect the hearing test will establish that but it still doesn't account for the other physical symptoms she is experiencing.

I don't know much about Kernicterus, are there permanent physical changes within the brain? If so is an MRI of any benefit in perhaps establishing a diagnosis? Would you consent to Izzy having one with some sedation, in view of her age?

Sorry muppet, lots of questions but no answers.

Dusty. xxx
We've avoided the EEG primarily because of the likelihood of sedation. I'm not sure you'd see kernicterus on an MRI or fMRI.


Super Moderator
As hard as it is I think you may have to compromise on things like sedation to find the answers you seek.

Dusty. xxx
Possibly but if we get an EEG and find seizure activity going on we're very likely to stop there anyway because we're not willing to put a 2 year old on anti-convulsants. The psychological side effects are too severe.


Super Moderator
I understand muppet but if it leads to a diagnosis then you aren't left guessing, you know what is causing the symptoms and issues you are witnessing. Whether or not you decide to medicate is another issue.

Dusty. xxx
Unless an uppity doctor calls Child Services or something, yeah.

An EEG, I'm fairly certain, won't diagnose Kernicterus and probably won't help with the auditory problem, if there is one, either.

I think we'll do the hearing test, and wait for the second speech evaluation and then see a speech pathologist unless they offer us something to contraindicate that. Right now her speech is our greatest concern. We'll leave neurology for if/when the other avenues are exhausted.

We've already seen a neurologist twice and twice backed out when an EEG was scheduled. The EEGs were only scheduled as "rule outs" anyway because the neurologist saw nothing wrong and was only going on our say so about the tremors. She told us to video tape them. Yeah, right.


Super Moderator
You know your daughter better than anyone muppet. I have no doubt that you will lead her in the right direction...Good luck and I hope more than anything you find solid answers.

Dusty. xxx
Sorry I'm just thinking out loud. I hope I'm not coming across as argumentative!! Tone doesn't convey in text. :)


Super Moderator
It's fine mate, not arguementative at all. I know that you are worried and concerned about Izzy and you need to put the thoughts and ideas out there. We all do at some time or other and a bit of brainstorming never hurts, it can actually help clarify things.

Dusty. xxx
I know what you are saying about the EEG. My 1 year old grand baby had one 2 weeks ago. No sedation but boy was she screaming the whole time.

I am a speech pathologist and I would be concerned if she were my child. Yes, children develop speech at differing rates and boys tend to develop it later than girls but if you have concerns that are not being addressed, then there is a problem. Even if there is nothing "wrong" your questions/concerns are not being answered in a manner that clears everything up for you. I do not know what state you live in and the ECI programs vary greatly from state to state, even from county to county. I do know that in Harris County Texas (Houston) the ECI program is very over-taxed and they do the very best they can but sometimes it just isn't enough.

Don't let up. You know your kiddo.

Good luck!
Two of my kids have learning disabilities. My daughter has a funky form of dyslexia and my son, well, they never quite figured him out. My son had speech problems and went to therapy. He still has to repeat a few words when he is super stressed. Both kids are grown and flown. Monica is an oceanographer and working on her master's. Steve is a landscaper. (I am not even going to mention the youngest son with his add.)

I really just want to say- good job, dad. So many people are afraid of something being wrong that their kids or themselves do not get the help they need. By the way, Steve's speech problem was---- he was and is a "lazy" speaker. Yep. Just does not see the value in speaking. He does work (volunteer) with kids with speach problems. He knows the tricks to use.

Things have a wonderful way of working out.