Developmental Pediatics

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deerhart
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Re : Developmental Pediatics

Postby deerhart » Mon Apr 07, 2008 03:27 pm

We did a developmental Ped with Alex. Absolutely complete waste of time and money. He spent 15 minutes with us, couldn't answer any of our questions regarding his so called diagnosis and left us no better off then were we were before we saw him.

jacobkaden
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Re : Developmental Pediatics

Postby jacobkaden » Sat Mar 29, 2008 11:39 am

Jenn and Molly - it's so nice to talk to other Mom's of preemies that are having developmental issues. Sometimes on the Pre-e board, I'm not quite sure where I fit in. So many of the preemies, even micro preemies are doing fantastic, almost right on track developmentally, that I cannot relate to them. At times, I feel more like I can relate to the "Grief and Loss" forum, but I feel "guilty" because my baby lived. Maybe we need a "Special Needs" forum?

Molly - Jacob is a good size, 23 lbs at 21 months (17.5 months corrected). He still cannot sit independently, crawl or stand independently. He can bear weight, however, if supported. The neurologist who suspected he has CP said his legs are quite loose, which is atypical of CP. The developmental ped said it seems like his muscle stiffness is more of a "coping mechanism" when distressed, because when relaxed he loosens right up. He said to presume he will be able to do everything and that he's just delayed. One of his attending doctors in hospital said if they can't diagnose CP at one year of age, it means he either doesn't have it or if he does, it's mild.

No one (except me) is too worked up about labelling him at this point because he has all of the intervention services in place, either way. None of this gives me any comfort, whatsoever. Molly, was Abigail walking at 2 years corrected or 2 years birth age? Jacob will be 2 in 3 months and is no where near walking?! In 6 months, he'll be 2 corrected, so a lot could happen by then. To complicate his issues, he also has a tracheostomy, which apparently also causes huge developmental delay! Ugh, it is not easy!

molly419
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Re : Developmental Pediatics

Postby molly419 » Thu Mar 27, 2008 07:58 pm

Kim-- Abigail has also been labled as a "puzzle"...she too is very bright, but still lags in gross/fine and social skills. She also did not start walking till she was 2. How is Jacob and his weight? Abigail is the size of a 2 year old.

A couple doctors suspect that she has mild CP on her left side, but we never had futher testing done, as an diagnoisis would not change the outcome of her services.

I am sure that everyone with a special child knows how frustrating the process of recieving answers, if any. I certianly understand that 25, 25, 26 weekers, under 2lbs do not have a lot of long term data for the doctors and studies...I understand that.. It is just SO frustrating!

mada
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Re : Developmental Pediatics

Postby mada » Thu Mar 27, 2008 04:57 pm

I really hope that the trip proves to answer many questions for you and that the doc is great....We will have to do Millenium park!! It's so great!!!

jenn
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Re : Developmental Pediatics

Postby jenn » Thu Mar 27, 2008 03:41 pm

You better believe it!!! *wink*
Magnificent Mile here we come!

I'm sending out my stuff to this Dr. and hopefully he'll be able to work with my time frame!
*cross your fingers for me* I think he can be some serious help to us.
Pray for late June/ early July appt. I love the fireworks off the lake and by boat even better!
I don't ask for much right?!


mada
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Re : Developmental Pediatics

Postby mada » Thu Mar 27, 2008 02:38 pm

OT Jenn...but you better call me when you come out here to Chitown!!!

jenn
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Re : Developmental Pediatics

Postby jenn » Thu Mar 27, 2008 01:51 pm

Tanya, I sent ya' an email.

Kim,
I'm with ya' 100%! I'm out of my mind with this.
I've let things lye when I was asked to and did every eval. much like you.
It's so unsettling, I can't even sleep some nights.
And it's funny you mention CP.
My best friend in Chicago has a son and he has spastic CP. Heck I thought that was the only kind and surely Jaidyn didn't have that.
Well I'm learning more everyday and I'm not convinced she too might just have CP just a different type and mild compared to the A-typical case.
I talked my family last night into driving to Chicago to see a specialist.
I feel like I've hit the crazy-lady-mark, but yet a part of me says who cares.
Anyways, I'm rambling. It's a favorite past-time *wink*

Keep in touch, if there is anything I can do or share, I'm with ya'.
Best wishes to you and Jacob!!!
Jenn

jacobkaden
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Re : Developmental Pediatics

Postby jacobkaden » Thu Mar 27, 2008 01:08 pm

Jacob has been assessed by every specialist available - neurology, developmental ped., OT, PT, Speech, Audiology. Our answer so far, "Jacob is a puzzle" - yeah, okay, very helpful. Nothing definitive has showed up on his MRI, CT or EEG and mentally he is certainly very sharp, which is good. He is very delayed in both gross and fine motor skills - possibly CP, but too early to conclude, so just calling it "developmental delay" for now. So far, I have not seen much benefit from PT and OT? I agree with the earlier post that sometimes it is just about research and numbers. Good luck!

kriscurran
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Re : Developmental Pediatics

Postby kriscurran » Tue Mar 25, 2008 10:27 pm

Jenn-
I am in the process of getting my son evaluated by a multidiciplinary team at his school and through an outside hospital clinic. Hopefully it will happen within the next few months. I can keep you updated about how it goes.
We just want to figure out how to help him be happy and relaxed with all parts of his world.
G

youtan
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Re : Developmental Pediatics

Postby youtan » Tue Mar 25, 2008 04:56 pm

We are on our way.... Just finished a full neuropych (yesterday in fact) and now we're off to what is called here - Developmental Assessment Program (DAP). All at our children's hospital. Check with your site, as our DAP is focused on screening autism spectrum disorders and other behavior problems.

The scope of the visit (as we were just described yesterday) depends on
1)what testing has been done in the past - by those they 'trust' (ie docs not school evals). If we'd gone to the DAP first, they'd have checked his cognitive abilities there and then shared this with the neuropysch instead of the opposite
2)what they will be screening for. I'd guess since you are in this - we don't know stage - you'll have the works done. We've not had this kind of testing done for N since his follow-up clinics after the NICU (until he was 2).

'They' suspect high-functioning autism or Aspergers with my N, *sigh* on top of everything... His primary stuggles are behavioral so they'll I guess observe his reactions to various ... situations. Actually, I'm just as curious as you. The neuropych just concluded that he has some attention problems, and that his brains are intact - he's a smart litle guy thank goodness. In fact he was extremely pleased by the latter given his high-risks. During the neuropsych they took him for 6 hrs (two sessions) without me. The list of tests done is a large full paragraph!

Neither the neuropych or the developmental eval will include an OT evaluation. So, we will still need to seek out a OT as there seems to be inconsistancies with how is fine motor is doing.

We are very hopeful in regards to this appt. No one wants more labels for their child, but we feel that maybe after all these years of struggles we'll finally have an answer and some tools to help him. 'Cause so far anytime we try to intervene in his behavior it just makes things worse.


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