When do i push for a neurological workup?

[TraceyS/FL]

Up until this morning at oh, 5am, i never really thought about asking for one from anyone.

 

We are on tract with our variety of diagnosis - SPD, APD, Vision.... (we get Vision Testing results tomorrow). I got the packet of papers from the Dev Ped yesterday and now i can confirm the appointment they were nice enough to call and give us the end of the month because there is a court case pending.

 

I started reading "When the Brain Can't Hear" last night. The OT had made the comment that there appears to be a big left side-right side not talking to one another issue (i don't have her results either). The APD testing echos this, and reading the book she fits for issues in that area too.

 

NOW, she did NOT have a "perfect birth". It's been a roller coaster really since, at the back of my head i've wondered if there was something "more" than what we know.

 

Back to the birth, they broke my water because she'd been showing distress. At that time there was a HUGE presence of meconium. They assumed that was causing the distress they were seeing, and we decided to do an immediate C-Section..... except, the anesthesiologist was 20 minutes away. Not good - i was at a 6, i went from 7-10 in 15 minutes the first time (different doctor).

 

The doctor left the room to coordinate stuff, and discovered a visiting Neo-Natoligist was doing rounds. They started planning "plan b" in case the guy didn't make it in time - and plan A for when she was going to take over.

 

Well sure enough, he didn't make it. She came out arm first with the cord at her shoulder - which was probably what was causing her distress. They had me stop pushing to suction her - i swear it was like 10 minutes, then the Neonat took over. She was pleased with what htey had gotten out of her before her "first breath" and only decided to send to the NICU (and hour away) because she felt the staff just wasn't giving her the attention she needed. She spent 5 days in NICU, appeared to have no breathing issues or other things (it was a fog time for me).

 

She had a variety of learning issues over the years, and of course her genetic condition, Turner Syndrome, brings on a set of learning issues on it's own. Right now though, other than the struggles in math, i'm not sure how much IS the TS and not others.

 

So now i have to wonder, was there damaged cause during birth? (and for the record, there is nothing that would be something you'd sue over - that team we had did the amazing job and saved her). We haven't had anything other than what i've mentioned. Would neurological be out of line here? I don't want to step on toes with the PEd Dev, i'm going to have to type up her birth stuff because there isn't enough room on those forms.

 

I know most people don't have something to pinpoint at birth to say hey, it was probably "that". Up till now, i haven't felt there was any reason to say hey - what about her birth trauma. The doctors have known, and the Ped we saw a few weeks ago was the first one to take notice/be interested. She then gave us all the referrals i'd asked for.....

 

So as i prep to fill all these new papers out, i'm just wondering......

 

Thanks for letting me ramble too, any advice would be appreciated.

[ReneeK]

I don't think it would hurt any. I would look into it and talk to her Dr. and express your concerns with them. I just had my daughter checked out this week and they are ordering a EEG and MRI. I wish I would of pushed on the issue more when we first suspected something.

[Dobela]

I would look into it personally. She could have very mild CP or something else. I was reading about cord entanglement recently ( I have a cousin expecting twins and there was concern they were in the same amniotic sac where they could tangle up in each other). I don't remember where I read all of this and didn't keep websites bookmarked so forgive me for lack of reference. Cord entanglement, according to one site, always causes learning issues. How bad they are depends on how long the cord was wrapped around something it shouldn't have been around. It didn't even have to be around the neck as assummed before. If the cord has a kink, they said it should be assummed the child is not getting the appropriate nutrition and that leads to developmental problems.

 

I would also wonder how they knew she didn't swallow any meconium if there was so much there.

 

When I worked as an early childhood evaluator we always asked about pregnancy and birth history. For some kids it is a vital part of the history - it may explain something that nothing else can. I don't know if there is research to back it up, but the children we saw usually had difficult pregnancies and/or deliveries. It was the common denominator for the large majority of kids no matter what the difficulties they were having actually were (they may have presented very differently).

 

I don't know how long things show up in an MRI, but I would also wonder if maybe she had a small stroke at some point that wasn't detected. My dd was very preemie and we had to have a series of MRI and head ultrasounds to make certain there had not been any bleeds and that no part of her brain had died.

[TraceyS/FL]

I have to re-read - but she did have HUGE amounts of meconium in her lungs (and nose and ears and eyes and I was cleaning it off her for weeks.... way gross), they felt however they were able to get the bulk of it suctioned out before she tried to breathe on her own and her airways were clear. I'd have to try to find the report i have from the NICU doc (who used the notes from the delivering hospital). It did have a typo in it stating they expected future pulmonary - so when we went thru individual underwriting for insurance, they of course caught that (perhaps helped that it was BC Group that paid for the delivery - and BC INdividual that was looking?) and we had to have a pulmonary eval showing no issues at 3yo.

 

We honestly were more concerned at that side of things, and of course, at the back of my head has always been the "what about the birth", could it have caused some of this.

 

Given everything on the table at the moment - i'm so NOT going to let this drop. I think i'll call the primary later and ask for that referral myself and get the ball rolling (because really, who knows how long the wait will be). I've also been paying attention to the seizure threads, the absence ones strike me as something possible, but of course, she hasn't had something since i started looking either. HMPH. LOL!

 

Thanks for being here as a sounding board ladies.... i need it these days.

[Tree House Academy]

Push to get it now. It can't hurt and it may help a lot. You are the parent...trust your gut.

[TraceyS/FL]

I called the primary, so now waiting for a call back.

[TraceyS/FL]

Well blast. This isn't going to be easy.

 

The Developmental Optometrist wants it, the primary wants it - BUT, she said the group at UF isn't technically taking new patients so she's getting referrals bounced back to her left and right.

 

ARRRGGGGHHHHHH.

 

There is another one here in town - she said she is pretty sure we are out of his league. He practices mainly as a pediatrician.

 

So, her suggestion right now is that we get the Dev Ped on board on Tuesday for the referral - she is pretty sure that his recommendation will get us in. If we can't get him on board, then we will figure out step too.

 

I was surprised though that i got to talk to her in person today - she happened to be covering. She isn't really our primary (until i call to get changed to her tomorrow!) - was covering for her the day we saw her, so we have never seen our real primary - but she is sooo nice and easy to talk with, gee, i love my "old" ped that doesn't take the state insurance the kids are on, but i almost like her MORE. Which is saying A LOT.

 

Anyway, i'm working on this.... everyone wants it done and agrees that there is a "big picture" we are missing.