Some neuro questions...

[UptownZoo]

OK, so to be very, very brief about the background, Carter is 7. From birth, he cried far, far more than normal. Lots of diagnoses over the years, but as an infant, we identified mild/moderate hypotonia, motor delays, feeding issues, right sided weakness, and significant sleep disturbance. He had an MRI and an EEG, a neuro workup, and gi testing. All was negative except the subjective findings of the neuro exam.

From birth, though, emotional issues have been front and center. When he was 11 months old and could sit but not roll, we noticed and were concerned, but since he screamed 12-16 hours per day, it wasn't so much on our minds, you know? He currently has diagnoses of ADHD, severe generalized anxiety, SPD, and we have bipolar kind of hanging there, waiting to see if it declares itself. We believe he's had some auditory hallucinations. He also has cognitive deficits.

So we hunted like crazy for a bottom line dx until about 2 years ago when we finally saw a geneticist. Those tests all came back negative and the geneticist told us he thought that Carter probably does have a genetic syndrome, but that it's not something that science has yet identified. We were very disappointed; Carter's profile is so very similar to that of fragile X, I couldn't help but get my hopes up that we'd finally have our answer.

So like I said, we made our peace with living without a diagnosis (I'm speaking of a bottom-line dx; of course he has lots of dx that relate to individual problems.). But now the therapist Carter is working with has taken his case to a neuropsychologist who thinks there might still be some things to explore, maybe a perinatal stroke or some perinatal hypoxia.

So I'm trying sooo hard not to get my hopes up, but it's hard to help it. The biggest clue, according to the neuropsychologist, is the unilateral weakness. That can only be neurological, which of course we knew, but I didn't know there could be a chance of identifying its cause.

But the question is, could it be identified? Carter had a brain MRI at 14 months. If he'd had a stroke, wouldn't that scan have picked that up? What about hypoxic brain damage? Carter was born with a true knot in his cord which did not cause any trouble during labor/birth, but I wonder if it could have caused some problems in the days or weeks before?

I know that I have to wait for the neuro to do the tests and answer my questions, but that won't be for awhile and I know that you all know how hard the waiting can be! I don't understand exactly why I'm so anxious; having a dx won't really change anything. He'll still need the same therapies and meds.

OK, that's not true. It would be validation, of which I seem to be in desperate need lately, ever since we started homeschooling and my family started screeching about how he'd be just fine if I'd just let him be a normal kid. But, you know, I'm trying hard not to be so affected by that.

So anyway, I've been reading about perinatal stroke and many experts say it's very underdiagnosed when the stroke is milder or happens long enough before the birth that symptoms have diminished, so it certainly seems possible, but most of the info I can find pertains to children who are profoundly disabled from birth.

I guess I'd just throw all my jumbled thoughts out here and see who had what thoughts.

[anj_rn]

No thoughts, just support.

[askew]

I don't have any answers, but I can share my experience. My daughter had a prenatal stroke. They assume hers happened somewhere between 34 and 37 weeks. (when she was born) Probably closer to 34. (level 2 US at 34 and no damage) She was born and into the NICU for apnea. Her brain had swelled and she was trying to expel the bleed. This caused the apnea. At the time she had tremors which they thought were seizures, but the EEG ruled that out. Besides being very irritable, especially when moved, she only had mild physical effects. She acted like she had a wicked migraine, from what I know of my migraines. Her hands and feet were hypertonic as if they had been stuck in place for weeks. Other than that she was fine. Nursed well, and was alert when not drugged. Once she had an MRI they showed moderate to severe damage on both sides in two areas of her brain. She is 4 months old now, and you would never know. She uses her body well, and has met all her milestones thus far. My point is, the infant brain can be pretty miraculous, so I think it is possible that a milder stroke could be overlooked. Especially if is happened early and had resolved itself well before birth.

[cathy013]

hi askew, how is your daughter doing now? my son also had an in-utero stroke. he's only 3 weeks old now. it was on the left side so it will possibly affect his right side motor skills. did you do PT/OT/ST immediately? is she crawling, walking, talking normally now? when did she do those things? did she need braces? did she ever limp?

[askew]

Originally Posted by cathy013 

hi askew, how is your daughter doing now? my son also had an in-utero stroke. he's only 3 weeks old now. it was on the left side so it will possibly affect his right side motor skills. did you do PT/OT/ST immediately? is she crawling, walking, talking normally now? when did she do those things? did she need braces? did she ever limp?

Wow, that is an old post! Brings back memories. DD is 2 now. She is doing well. She did not meet any of her milestones on time. I think a lot of that had to do with the fact that she developed Infantile Spasms at 6 months and went on medication that made her really out of it, and very very floppy. She weaned off the medication just after her first birthday and her development has accelerated ever since. 

DDs injury is mostly to the occipital lobe, and some to the frontal lobe. None to the motor cortex. She has never shown any stiffness or anything like that. She sat at 6 months, and then lost that milestone when the spasms started. She sat again at 12 months. She rolled at 7 months and then rolled as a way of moving around at 9 months, and used that for a while. I think she army crawled around 15 months. She cruised at 15 months, but did not pull up and down gracefully until 20 months- when she also finally crawled with her belly off the ground. She walked just before her second birthday- but she still does not walk well, three months later. She can't stand up fro the middle of the room. She walks on her knees until she get to a piece of furniture she can pull up on, then walks away from it. She is getting SMO braces next week to give her more ankle stability. Gross motor is her biggest issue, and she scores a year behind her peers. 

Her fine motor is mildly delayed, her hands were the part of her body most effected by the stroke. They were totally still and extended for months after the stoke. At two she can color, and grasp a crayon, feed herself, open jars etc, stack objects, do puzzles and so on.

Her speech is mildy delayed. She scored 2 months behind in receptive language and 6 months behind in expressive. She has articulation problems. She drops that last syllable of words a lot. 

We have done so much therapy- you can't even imagine. She started Feldenkrais therapy with Anat Baniel at 21 days old. She saw someone at that center 2-3 times a week for the first year. We had a PT through the center that billed insurance, which helped a lot. We then found a Feldenkrais practitioner through EI in our area, and saw her 2x a week until DD hit 2. Now she goes every other week. She started OT at 12 months old for strength and stability. We could not get her to bear weight on her arms back then. She LOVES OT. (hates PT) DD started speech at 2, which is what out EI does. They don't do it earlier. 

We also signed up with nacd.org when DD was 6 months old, and do a neuro-developmental home program with her every day. The evaluate her every 3 months and then give us a new home program. I feel like this was one of the most helpful things we did. This program made me feel like I was doing something to help. For me that was priceless. I just had to "do" something other than wait and see. 

I'm very sorry you find yourself in this situation. It is rough, I won't lie. I think I spent the first year in shock. I also HATE doctors. Like close to phobia hate. It was so hard for me to go to all the appointments. The therapy I didn't mind- other than the tedium of scheduling it all and working and taking care of my older child. My DH was laid off right after DD turned one, and it was awesome for us. He spent all his time managing DD's schedule and therapy- and I went from part time to full time at my job. 

When my DD was in the NICU I read the book Stroke of Genius, which I found really helpful. I also read a lot about brain plasticity. Babies are so resilient. There is so much more hope than they give us in the beginning. When DD was born the NICU radiologist told us that she would never walk, talk, and might not know we were in the room. Clearly he was wrong. Never give up hope, your child will write their own life story. 

I hope that answered all your questions! PM me if you have any others. :)