General Music Chat

Took my grandson back to the neurologist this morning, after an MRI & EEG...the results don't look too good to us.

We've had suspicions that his mother was doing drugs & alcohol during her pregnancy, & that they may have caused some developmental problems for the little guy.

According to the neurologist, the MRI shows a "very large posterior fossa arachnoid cyst that occupies the majority of the infratentorial region." The EEG tests showed slow wave forms in the left hemisphere of his brain. These are "considered to result from abnormalities occuring in foetal life," according to one website I saw. (Shoulda took note of it, but I didn't, & I've seen a bunch!)

Evidently, there is no small concern, as the doc has made an apptmt with a pediatric neurosurgeon on Tuesday, 06/02, which seems rather rush-rush to me.

There have been concerns due to Jace's lack of vocalization & inability to walk until very recently. The child is 25 months old, & can understand complex directions, but makes no useful words. Over the last month, we have been working with developmental helpers sent by the state to help him learn some basic sign language, & he can do about 6 signs well. They're also helping him with his balance, but we already had him well on his way to walking before they started to work with him. Today, the doc noted how "clumsy" he is, several times.

This type of cyst is usually asymptomatic, from the little research I've done so far, but the thing that worries me are the words "very large" that appear in the description of the doc's report.

These things can cause headaches, problems with motor skills development, nausea, eye problems, hearing loss, yadda yadda yadda - the list goes on forever, & yet it's a condition that's considered rather rare.

Of course the doc we saw today could give us no word of warning, nor of hope...just a list of possibilities with no end in sight...& I'm amazed at how well my son is holding up through it all, cuz I wanted to punch the SOB in the face & demand answers now, dammit...but he seemed more concerned about having other doctors tell us he was wrong in his assessments, so he withheld them all, the chickenshit bastid.

Perhaps I shoulda named this thread "frustrated & skeered," or "hangin' onto hope," or "I just wanna keep on hitting somebody until it's over." I can only imagine what my boy's going through, but he's remarkably calm about it all. He's been through a lot this last year or two, & just keeps on keeping on like the man I always hoped he'd be.

I will keep you and your family in my prayers.

It has been my experience that often these type of "cyst" are discovered in patients who are asymptomatic. The developmental problems sound very simular to those of alcohol syndrome children and can be overcome.

Second, third, fourth oppinions before any procedures.

The main thing your grandson has going for him besides youth is YOU !!
Never forget that Phil. Nor under estimate the power of love.

Yeah, sans. We had some worries about Ian when he was a wee tyke. He had 2 eye operations to get them lined up. Also mild CP & probable ADD. We got him through it pretty well, I guess, looking at him today.

This just seems more intense, more worrisome, & more frightening on more levels. Ian's problems were the result of a forceps delivery, we're told. This just seems like negligent, nay, criminal behavior, on the part of the mother, which may have resulted in much more serious problems than ppl can be prepared for. Makes me wonder if this isn't why she was suddenly so anxious to give him up, last Sept.

Ah, well...All there is to do is wait until we know more, as we continue to do all we can with & for him. Waiting's the toughest part, though.

Hey, anyone near UVA, get in touch with me. I'll be down that way soonly for more tests & stuff.

Wish us luck.

Philby, I feel for ya, man. I had a son that was delivered by an intern who used forceps and caused massive brain damage. We were told by the doctors that he probably wouldn't survive for more than two months. He lived 12 and a half years and was a precious baby all his life. We spent lots of times at hospitals and it was a learning experience for sure. But, he was a blessing in disguise and touched everyone who knew him. Hope everything works out well for your grandson. Sounds like he's got a great dad and a helluva grandpa.

Wow sorry to hear that philby and rat. My oldest boy had a heart condition when he was younger, so I can really relate to the waiting part. It was my experience then that the doctors just wanted to see it from as many angles as possible before they decided which treatment was best and that takes time. I will keep you guy's in my prayers as well.

All my kids have been disgustinly health.
I worked for many years with severly disabled children of all description.
It is a huge burden on the families.
It seemed to me the one's whom dealt with it the best had someone special to lean on.

I feel for ya philby

As most of you already know, my daughter is autistic, severely ... One side the grandparents just do everything in their power to avoid her, and the other side refuses to believe it's anything but poor upbringing by us, the parents. It's a huge burden when you have nobody to turn to, even for a night of baby-sitting.

FWIW, she's a wonderful child who has enchanted everyone who has had the honor of getting close to her.. The grandparents on both sides have no idea just how precious and gifted she really is. I couldn't imagine my life without her.

A little healing going your way

Cheers to Keith and Phil! Stay strong.

Thanks, guys. You always seem to help me keep things in perspective when I'm feeling like I'm the only one.

He's a happy lil person, & that's a real blessing. He makes me laugh a lot, too. Trust me - it's far from all bad. I love him to death, & enjoy most of our time together (can't wait until the successful potty training is over & done with, though!).

We're doing dry-run canoe training this afternoon in the front yard. The neighbors must think I'm a real nut case, sitting there with him with his life jacket on, pretending to paddle through the world. When I think he's more comfy in it, I'll take him out on the lake, but for now he's a bit skittish. We've gathered a 5 gallon bucket of rocks for him to toss in the water when we go for real, cuz he loves to do the splashing thing.

I didn't know what to say as regards a reply because its so sad. All I can say is this. Sometimes miracles do happen, they happen everyday though some miss the moment.

I really hope that things work out for the best for you and your family Phil.
Keep well.

Chippy.

Offering prayers for you and yours friend. Right now.

My thoughts and prayers are out for you all. My daughter came to us last week with the news of a second grand. We all fear at some point that something might not be right in some way. It makes me realize just how lucky Ive been with my familys health. We have problems, but so many others have it a lot worse.

Man, you know were a bunch of old farts sitting around here talking about our grandkids.

My heart indeed goes out to you ,man. I have had 3 healthy pregnancies that produced 3 kookie kids. I have also worked with disabled children and have an autistic niece. Health care has become a hobby for me and I plan to become a health coach in the fall. Fter much research I have discovered that the most common nutrient deficiency in our diet is vitamin D. Honest to goodness, please have his vitamin D levels checked before doing anything I would wager that his levels are low. If this is indeed a fact, replenish his levels with vitamin D3. Make sure that they are high enough to produce normal levels of this hormone in his blood. I will post some information on vitamin D soon.

Here is a start :

http://www.livinlowcarbdiscussion.com/s ... p?tid=2775