[tri-med] Re: Brain scan

Katy, 
Thanks for the info.  I remember our pediatrician talking about T8 patients 
often missing the corpus callosum when she was first diagnosed.  I also 
remember thinking at the time that I would worry about that later when the time 
came!  It was all just too overwhelming at the time.  After reading up on it, 
it looks like another one of those things that can have various outcomes and 
effects in kids.  It is good to hear that your son's head growth is ok.  I'm 
betting all of our kids are on their own growth curves though!  

After reading more about hydrocephalus, I'm starting to worry that I may not 
have helped her any as I let her scoot off the bed the other day.  I guess I 
had a false sense of security thinking that she can't move around real well.  
Boy did she prove me wrong.  I only looked away for a minute to turn back and 
see her screaming on the floor.  Talk about guilt.... It was bad enough when I 
thought I may have caused some discomfort by letting her fall, but after 
reading that head injuries can cause hydrocephalus I really feel bad.  She only 
cried for a minute though and hasn't had any symptoms of a head injury, so I 
probably shouldn't feel so bad.  My son has had much worse accidents as a 5 
year old playing sports!

Thanks again,
Callie

-------------- Original message from Katy Roberts <basil1_2000@xxxxxxxxxxx>: 
-------------- 


> Hi Callie, 
> 
> Sorry to hear about your stress at the mo. My son also 
> is T8M and he is 3 years old. He was born 3 months 
> prem so had numerous ultra sounds of the brain and it 
> seems his ventricles looked not too bad. After he 
> finally had an MRI scan they saw that his corpus 
> callossum (the centre bridge between the two sides of 
> the brain) is missing. His head growth is ok even 
> though his head is misshapen from being so prem so the 
> measurements are never really consistent especially 
> when taken by different people. I mention this info as 
> I've been there desperately seeking help and info. I 
> know its not much help but another bit of info is 
> about my friends little boy who had hydrocephalus 
> diagnosed at birth he had a shunt put in to drain and 
> then about 3 weeks later he had a to have it ajusted. 
> He is now 3years old and has had no other problems 
> since. 
> 
> Katy. son t8m. 
> 
> --- mcmuni@xxxxxxxxxxxxx wrote: 
> 
> > Irene, 
> > 
> > Thanks for the info on Caroline. That is consistent 
> > with what I heard the doc say yesterday about 
> > potentially having enlarged ventricles. I didn't 
> > really understand what that meant until I just 
> > looked up hydrocephalus on the web after reading 
> > your message. It all makes sense now. It is good to 
> > know that the shunt is working well. 
> > Large heads run in our family, so I'm hoping this is 
> > nothing more than her finally catching up to the 
> > rest of us! 
> > 
> > Callie 
> > 
> > -------------- Original message from "Irene Smith" 
> > <67.irene@xxxxxxxxx>: -------------- 
> > 
> > 
> > > Hi, 
> > > I am sorry, but I don't think it is common for the 
> > head to grow fast. We 
> > > had the same exact problem with Caroline. At 5 
> > months old they did the scan 
> > > and found a LOT of fluid accumulating in the brain 
> > (hydrocephalus). She had 
> > > surgery to put in a shunt. It actually wasn't that 
> > big of a deal, I guess 
> > > the surgery is fairly common (at least at that 
> > hospital) and we haven't had 
> > > any problems with the shunt so far (4 years 
> > later)...knock on wood. 
> > > 
> > > Oh, and we had the procedure done at Pittsburgh 
> > Children's Hospital. Our 
> > > local hospitals won't touch Caroline unless 
> > absolutely necessary. I would 
> > > definitely recommend a children's hospital. They 
> > did the diagnosis and she 
> > > had the operation a day or so later (we stayed as 
> > inpatient). 
> > > 
> > > Good luck, and sorry I don't have better news. 
> > > 
> > > Take Care, 
> > > Irene 
> > > 
> > > On 10/22/07, mcmuni@xxxxxxxxxxxxx wrote: 
> > > > 
> > > > Hi! 
> > > > Maiya had a check up today with her 
> > geneticist... All went well except 
> > > > they seemed concerned that her head 
> > circumference had grown very rapidly 
> > > > (and inconsistently with weight and length) 
> > since our last visit two months 
> > > > ago. They are recommending a brain scan to see 
> > what is going on. They are 
> > > > asking us whether we want general anaesthesia or 
> > not. Because she's an 
> > > > infant, our pediatrician is recommending that we 
> > take her to a children's 
> > > > hopsital rather than the local hospital. I'm 
> > leaning towards going that 
> > > > route (general at a children's hospital), but 
> > wanted to know if anyone had 
> > > > any advice. 
> > > > 
> > > > Also, is it common for Tri kids to experience 
> > fast head growth? 
> > > > 
> > > > Thanks so much! 
> > > > Callie 
> > > > Mom to Maiya (T8M 8 months) and Cade (5yrs) 
> > > > Sebastian, FL 
> > > > 
> > > > Building ___ooOOoo__ Rainbows 
> > > > www.trisomyonline.org 
> > > > Families Helping Families On-line 
> > > > 
> > > > 
> > > 
> > > 
> > > -- 
> > > Irene 
> > > Christina (5), Caroline (4 with partial trisomy 
> > 17p) and Kallie (2) 
> > > Caroline's site: 
> > http://www.caringbridge.org/visit/carolinesmith 
> > > 
> > > 
> > > Building ___ooOOoo__ Rainbows 
> > > www.trisomyonline.org 
> > > Families Helping Families On-line 
> > > 
> > 
> > Building ___ooOOoo__ Rainbows 
> > www.trisomyonline.org 
> > Families Helping Families On-line 
> > 
> > 
> 
> 
> 
> ___________________________________________________________ 
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