Crying at my desk, here's a new high

[muppet]

I've got tears streaming down my face. I'm back up on 40mg of Prednisone again, still need to call my GI. Need to call Sarah's GI to negotiate the rest of her taper down from 20mg. I think we may need to try a faster taper this time and sort of "force" her adrenals to kick in. Last time she went right back out of remission again as soon as the steroids stopped.

But that's not what's got me worked up today. Today I finally found an active kernicterus support forum to talk to people about Izzy's speech delay and my suspicions that she has suffered neurological damage from her very severe neonate jaundice 2 years ago. It took me two years to find a Yahoo group with people who know what I'm talking about and that is actually somewhat active. Nothing like Crohn's Forum exists for Kernicterus. Thank goodness for this place but I wish there were one for every condition out there...

The stories I'm reading have got me nodding my head and bawling like a lunatic. I am CONVINCED that Izzy has Auditory Neuropathy, but her doctors won't listen to me and won't refer me for the test (ABR, a sedated auditory nerve conduction test) that would rule it in or out so that we can proceed.

Izzy's first early intervention screening showed her in a "normal" range, but I know she's way behind my oldest at the same age. She speaks like a deaf person and obviously has a lot of trouble forming words and gets VERY frustrated by it. She can copy inflection and tone but has TERRIBLE trouble making actual consonant or vowel sounds.

I was able to get the personal cell phone number of an expert in AN at USF and he referred me to a PhD Audiologist in Boston, but when I called her office they spoke to me like a crank who's been reading the internet too much.

I am SO frustrated and scared for Elizabeth and I don't know what to do for her next. The best idea I have right now is to try to bully her pediatrician into referring her for an ABR.

Doctors are VERY reluctant to diagnose Kernicterus because it inevitably leads to malpractice lawsuits. It's a very detectable, very preventable condition that just should never occur, but I know it has in Izzy's case.

Thank God she's not as bad off as some kids who suffer this, not nearly, but still I WANT DOCTORS TO DO THE RIGHT THING AND HELP US TREAT HER EARLY FOR THE BEST OUTCOME, NOT PUSSY FOOT AROUND AND COVER THEIR *****!!!!!!! :ymad::ymad::ymad::ymad::ymad::ymad:

"My son is not as affected as some of the children in the group. But he did start his speech talking like a hearing-impaired person as you describe your daughter does. I took him to Dr Annette Hurley at LSU, she learned under Dr Berlin and is his colleague...she found the problem on his auditory nerve that she said is damage from high bilirubin, he had an ABR and she did 3 days of tests, and he has been in a lot of speech therapy and OT and PT his entire life. But he can read and is verbal. ....sue"

Mark-

My son, who is also 2, is almost exactly like your daughter. His bili got very high very quick, but was also brought down very quick. He was diagnosed with kernicterus after an MRI while still in the NNICU and auditory neuropathy about 2 weeks later after an ABR. He recieved a cochlear implant in January and was recently diagnosed with apraxia ( a speech disorder where to put it simply, the brain and mouth don't work together). He has a very hard time forming words and often they don't come out the way he means them to (at least as far as we can tell). Cognitively he is great, can follow directions perfectly, just very little speech. You are not nuts. We all have felt this way at some point but know that we are all here to answer any furthur questions. I totally agree with Miriam though. You should see Dr. Shapiro. or at least speech with him (depending on where you live). Take care!

Sarahann Powell

 

[InkyStinky]

I am so sorry for all that you and your family are going through. Peditricians don't rate very high on my list, I"m afraid, because when I was a kid mine today my mom that I just had the flu (was pooping straight liquid blood) - she didn't leave that office until he admitted me to the hospital. Still took a long time to get my IBD dx, but there were multiple times in my childhood that I'm sure I would have died if my mom didn't make my docs do something.

So sorry that your peditrician doesn't sound much better - :quack: :ymad: - and I'm so sorry that you have to do the doc's job for them when you are sick yourself. But it sounds like you are completely in the right to demand a referral/test for your daughter.

:hug:

 

[Tesscorm]

Agree that you have insist and follow-up! When I was 5 years old, I started having pains all over and began to have difficulties walking. Tests were done but nothing was found. At the same time, my best friend had a problem with his legs and couldn't walk. The doctors' diagnosis for me - it's in her head, her friend can't walk, so she doesn't want to and is looking for attention. My mother didn't accept that and pushed for a different diagnosis. I was finally diagnosed with juvenile osteoporosis. It was rare (at the time, the children's hospital in Toronto had only had a handful of cases in its history) and, given the situation with my friend, I can see how doctors came to their initial diagnosis, however, they needed to be pushed to find the real problem. If my mother hadn't followed her instinct, had allowed the doctors to convince her, then the outcome may have been quite different (all's good now! ).

So, I say, go with your instincts until all doubts are cleared!

 

[muppet]

So we got the results of Izzy's conventional hearing test in the mail yesterday, and also had a visit from Birth to Three.

The hearing test results are incomplete because she wouldn't cooperate, but the audiologist wrote extensive comments including one that says Izzy can definitely rule out anything but a very mild conductive hearing loss. I'm not sure how or if that relates to what the ABR would check for, but the "kernicterus people" keep telling us we need to get that done so I'm going to keep pushing for it.

Birth to Three told us that based on her raw test scores, she's still not eligible for any of their intervention programs, but they ARE concerned about her odd mode of speech, her sing-song style of using words and sounds, and they think she may have some ora-facial muscle or nerve problems of some sort. She likes to "stuff" her mouth and pulls at her jaw from time to time, along with the difficulty forming words. She also doesn't use language communicatively very often (just "juice!" or "wubba!" for her pacifier). Instead she seems to say words and phrases that she likes the sound of. They mentioned PDD-NOS, and now we're freaking out reading up on that. Should I be on an autism board now, too?

Flipping out and really worried about my baby!!!

I'm a pile of raw nerves. My own Crohn's is a mess now, of course, and with the Prednisone, out go my coping skills and my ability to remain calm and rational about... ANYTHING.

Sarah's dose of 6MP was raised to 37.5 along with allopurinol, the highest dose she's ever been on. Her "good" metabolite, I forget the name for it, is up at 414 which is above the peak therapeutic range of 400 and the APRN at her doc's office (who I hate) seems to think that's a reason for concern but the doctor hasn't called me yet. Her 6MMP level is at 2700 which is below the "danger zone" at.. I think 5200? BUT she's got a cold now that she's had for at least ten days and it's getting worse, not better.

I can't get past the idea that we had a healthy, happy baby girl born two years ago and that the hospital, through a negligent and cavalier attitude about how unthreatening jaundice is, allowed her to sit in a room comatose with her two freaking out parents while her brains were COOKED by bilirubin flooding into her spinal fluid. We could have had at least one baby who wasn't sick and they took it from us and it wasn't even for any reason, it was just indifference and apathy.

AUGH. I want to bloody someone's face over this and I'm NOT a violent person.

Our state also has an extremely narrow statute of limitations for malpractice thanks to a strong physician lobby, and by the time we are able to link Izzy's difficulties to her jaundice it will almost certainly be too late to hold her birth hospital accountable and force them to take notice of their ABYSMAL jaundice protocol through a settlement. So there will be no justice for Izzy and no extra care taken with the next baby they SCREW OVER, or the one after that, or the one after that.

I swear to god I'm going to collapse into a quivering mass of raw flesh and spent nerve endings. If I had even one single PTO day left I'd be off right now. Can't take it.

 

[SarahAnne]

I don't know what to say, except that I am praying for you and your family. I can't believe how much you've gone through. You are a very strong person, I'm so sorry I can't offer more than my good thoughts. Good luck with everything, I hope the doctors start to listen and cooperate. :hug:

 

[muppet]

It's unbelievable how lacking other medical/disease support forums are on the internet compared to this place. This forum really is a gem for those of us with UC/CD. There seems to be no equivalently supportive community for either kernicterus or autism. One forum I went to had closed out their registrations. The next is so large and the topics covered so broad that I just can't get a reply to anything despite dozens of "views".

We're spoiled by this place. It sucks.

 

[DustyKat]

Oh man muppet, my heart goes out to you...:hug:

I'd be lying if I said I know what you are going through with Izzy and kernicterus but I do know the shock and disbelief at finding out you have a second child afflicted with a life long disease. One child is horrendous enough but to have a second...well the despair is overwhelming.

I know you will move mountains to get answers and help for Izzy, just know that we are with you every step of the way, always.

Much love, :heart:
Dusty. xxxxxxxx

 

[muppet]

Thanks Dusty. It would be one thing if I KNEW it was kernicterus. Then I'd have a clear course of action. Instead I've got no diagnosis, doctors who treat me like I'm a nut and would rather wait until she's school age when a diagnosis will be easier (but too late), and on top of the other issues I've already got going on....

I think I'm finally approaching the limit of my sanity.

Thanks for the kind words.

 

[muppet]

I did have some good news last night. Sarah's GI called me back last night and told me that Sarah's 6MP level is fine and no to worry about it at all. Sarah's cold also seems to have gotten a bit better after a day home from school.

I sat down last night and really thought about the way I've been interacting with Izzy for the past two years, and realized that maybe I'm not giving her enough one-on-one attention and focus with all of the chaos that goes on in our house on a daily basis. Last night we even got her to ask for "more" of certain things at the dinner table by saying "more please" and pointing instead of just pointing and whining... something we wouldn't have expected her to do.

So, it could be that I've stunted Izzy myself. She doesn't go to playdates, doesn't really have friends her age, and her whole life is basically our house and the grocery store because honestly, we haven't had time or energy for anything else. That can't have helped.

Of course, that doesn't mean there's not still something medical going on with her, and it also doesn't do wonders for my conscience.

 

[DustyKat]

An undiagnosed child is such a heart wrenching experience. I went through that for 18 months with Sarah and I wouldn't wish it on my worst enemy. The frustration, self doubts, dismissive attitudes of others, fear and endless worry is exhausting.

It's good to know that Sarah is doing a little better though.

But what an emotional roller coaster muppet, it is bloody exhausting as well! Oh muppet, you are doing your best, given your circumstances, and no one can ask more of you than that. If you now have some time to sit and reflect on the past and identify things you may have done better then firstly...don't dwell on it, learn from it. Secondly put change into place and move on. You said yourself time is of the essence so make the most of it!

Be kind to yourself and :hang: Dad!

Dusty. xxx

 

[muppet]

I never had to do the undiagnosed thing with Crohn's. Mine was diagnosed very young and Sarah's was diagnosed INSTANTLY. This is alien territory for me and EXTREMELY frustrating especially with the comparative experience I had with Crohn's.

 

[muppet]

Lawyers are now involved in this. Oh my God.

 

[DustyKat]

In what respect muppet?

Dusty. xxx

 

[muppet]

Long story, I should probably not even go into details.

Our baby was born healthy and then was injured. It's taken 2 years to piece it together and figure it out but now that I know what it is, it's obvious and there are classic symptoms and indicators of what's wrong and her history bears it out.

 

[DustyKat]

I thought it was that but wondered if you were able to proceed without a definitive diagnosis.

Good luck mate, I hope more than anything you are able to achieve what you have set out to do.

Dusty. xxx

 

[muppet]

I'm sorry, I'm still pretty new here and I seem to be setting up shop as the resident drama queen.

The universe seems to be testing the strength of my sanity through the suffering of my children. I can't imagine why that is, but it certainly seems to be what's happening.

 

[Mountaingem]

:hug:Sending hugs!