Um, ok
So, the good news is that Oscar does not have a brain tumor! Yay! Insert huge, audible sigh of relief here.
The not so great / confusing / uncertain / possibly extremely bad news is that his MRI did show an anomaly (I’m not ready to call it an abnormality as the neuro did) in an area of his brain I had never even heard of, which is the reason for the delayed results (as we all probably expected). Because I can get no straightforward news relating to Oscar’s obscure condition, which is even more complicated now than previously thought, I don’t even know when to expect that I will be able to understand what is going on with him. The radiologists are going to talk with the neurologists, who are going to seek other opinions from other neurologists across the country, and at some point I may know what might be wrong with my son’s brain. All I know right now is that there is a problem, that the problem is not fixable, that this malformation can lead to significant developmental difficulties, but then again, it might lead to only somewhat significant developmental difficulties, like extremely delayed speech. By the way, all those signs last summer that pointed to autism? Yep, probably all related to this. For now, I was told not to worry about it too much. Insert me laughing maniacally here.
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So they tell you there is an something abnormal in your son’s brain that could lead to developmental delays, but don’t worry about it?!!!!! Do these people not have children? Of course you’re going to worry about it!!!! Your his mom, he’s your child, you want the best for him!!!!! I hope once the neurologists have examined the MRI results carefully they can give you some more difinitive answers.
If you want to come to Baltimore we have some great pediatric neurologists – you can stay with us if you want a second opinion. Check out Hopkins and Kennedy Krieger online.
If it is something that indicates a delay, therapy can do wonders….
Seriously – we are here for you if you want an opinion in Baltimore. Or if you just want to chat. My background is in maternal and child health.
Big hugs,
Laura
Wow. I don’t know what to say. The doctor forgot to schedule the MRI, took a week to call you with the results and then said there might be something significantly wrong but it’s real complicated so don’t worry about it and he’s going to talk to a bunch of other people and get back to you? OooohKay. I hope that he is able to find someone with more knowledge on this condition and more respect for the anxiously waiting mother of this CHILD who is on the other side of the slides he’s looking at on his computer.
You guys will be in my thoughts!
Just wanted you to know I am keeping up by checking in….and still keeping you both in my prayers. The whole tantrum/wrecking ball thing is a bit dangerous, yes? Although, my 2 nephews ages 4 and 5 are little balls of destruction….non-stop 24/7. xo- K
Very happy its not a tumor, so very sorry there are still questions.
My unsolicited advice: Bring someone with you when you get the results, its easier to tag team the dr. and get answers/compare notes if its not all just on you. A second perspective always helps. Get your answers,then go get a second opinion.
The good news to me is that delays can be agressively addressed with therapy and often overcome.
You two have been through so much together, you’ll get through this together too. Wishing you both the best!
My heart goes out to you – it must be frustrating not having answers and the “experts” being clueless that it is totally useless to tell a mommy not to worry when she does not have answers (and the experts either). You guys will get through this – Oscar has the best advocate. Hugs from one mommy to another.
Glad you have some answers, at least. Praying that now that you have a diagnosis, you can work on treatment.