Since DH and I aren't telling

anyone in the family or friends...

I had posted a while back that my sons physical therapist had mentioned the possibility that LO had a stroke, but wasn't certain and thought the torticollis diagnosis might not be the origin of his head tilt, but appeared that way as a newborn.

Today, she told me- she has been watching him for some time and based on the way he is stronger in one half of his body and the way he walks along, how he is so dominate on the right side- she is certain he did have a stroke. And has some form of cerebral palsey, but not with tight muscles. She said some forms of cerebral palsey are made with low muscle tone- which might tie in with following the Apraxia his brothers have.

And she said we can either just know he had stroke and has a form of cerebral palsey and not go see a neurologist until he's older, maybe 5-7 if he needs a medical diagnosis to attend school therapies and isn't making progress the way we expect him too. Otherwise, just know it happened and not have any full inofrmation so we don't mess with his medical records and adult hood with a disagnosis that he can't loose, unlike the developmental delay.

Or we can make an appt with a neurologist, get the MRI. Have the image and know exactly where the damage was done. Have the diagnosis in his medical chart forever, even though he just turned one. And absoultely not one thing would change about the way he is currently being treated with the broad diagnosis at the time of developmental delay.

3rd option wait a few months and discuss what we want to do again. Or if we change our mind at anytime to make the appt to get an MRI.

DH and I at this point are going with the first option. DH wants to wait until 4-5 incase he ever wants to join the military. Also, for preexisting medical conditions etc. Where he could be limited in the future no matter how much progress he makes. Just because we want to know exactly how much and where the location of the injury is.

Has anybody been throught this? Are we making the right decision to wait? What would you do?

I personally would take my kid to get checked out and figure out what exactly happened as soon as I could. I rather it be on the charts and know what happened than not be on the charts and have something more serious come into effect.

If its not going to change anything Then I'd wait for a diagnosis and do nothing right now.

Quoting Love = Moco and Bubba:" I personally would take my kid to get checked out and figure out what exactly happened as soon as I could. ... [snip!] ... rather it be on the charts and know what happened than not be on the charts and have something more serious come into effect. "

She said it could have happened anywhere from the first trimester all the way to 48 hours old.

She is highly trained- a baby expert and works with very severe older children who are basically vegetables. There is absolutely nothing else that would change if we went ahead and got the MRI. I trust her and her knowledge 100%. And I do not say that lightly.

I would rather get the tests done. That way I could have a for sure diagnosis and would know that everything possible medically was being done to help my son.

Quoting lolajessup:" If its not going to change anything Then I'd wait for a diagnosis and do nothing right now."

You think we are making the right decision then?

Oh and we aren't telling our families because of issues we have been having regarding my older son. And the holidays are here, so we are just going to wait until next year so everyone can enjoy Christmas.

Quoting ♫ boobook ♫:" She said it could have happened anywhere from the first trimester all the way to 48 hours old. She ... [snip!] ... else that would change if we went ahead and got the MRI. I trust her and her knowledge 100%. And I do not say that lightly."

Then it is fully up to you as a mother. If I were in that given situation I would still have the MRI done but if there really is nothing to benefit other than to confirm it was a stroke then go ahead and wait a few years or unless something else requires it.

Quoting RonniG:" I would rather get the tests done. That way I could have a for sure diagnosis and would know that everything possible medically was being done to help my son."

Nothing else would change. Not one bit. He is already in every intervention he can be receiving based on the diagnois of a broad developmental delay. So getting the diagnosis would only answer the question: Where is the damage done.

Quoting Love = Moco and Bubba:" Then it is fully up to you as a mother. If I were in that given situation I would still have the MRI ... [snip!] ... to benefit other than to confirm it was a stroke then go ahead and wait a few years or unless something else requires it. "

I want to have the MRI. But I don't want to potentially mess his future up with a medical diagnosis that could hinder his career choice as an adult. I am torn.

Personally I would get my child out. I don't like to mess with any of tht stuff. In my mind our pt's know a lot but are not drs and I feel like what if there is something else or she is wrong. But that's for my family.
Only you know what choice best suits your families will and needs

<blockquote><b>Quoting ♫ boobook ♫:</b>" I want to have the MRI. But I don't want to potentially mess his future up with a medical diagnosis that could hinder his career choice as an adult. I am torn."</blockquote>

Could something else happen to him? Like do they need to do tests to make sure nothing else will happen?

That's a tough one. I see where your DH is coming from with wanting to wait in case he wants to join the military or anything.

But, my DH had a stroke at 22 and they have told him numerous times that the chance of him having another one is a lot higher. I think because of that, I'd want to know exactly what was going on.

<blockquote><b>Quoting B♥Z:</b>" That's a tough one. I see where your DH is coming from with wanting to wait in case he wants to join ... [snip!] ... that the chance of him having another one is a lot higher. I think because of that, I'd want to know exactly what was going on."</blockquote>



She never mentioned that.... Do you know if by knowing it will change the way h he does things or we do things with him? Or is it so you can be aware of signs and symptoms and get him treated ASAP in case of another?

Quoting ♫ boobook ♫:" <blockquote><b>Quoting B♥Z:</b>" That's a tough one. I see where your DH is ... [snip!] ... or we do things with him? Or is it so you can be aware of signs and symptoms and get him treated ASAP in case of another?"

So that you can be more aware of the signs and symptoms. But now that it's written out like that, I guess you can educate yourself on the signs anyway, and watch out for them. I know that when DH had his stroke, he lost his speech and had to have speech therapy to help him get it back. He became paralyzed because the fact that he was having a stroke wasn't caught soon enough, granted he got full use of his body back, it was scary!

I'm really sorry you're going through this, it has to be hard!

<blockquote><b>Quoting B♥Z:</b>" So that you can be more aware of the signs and symptoms. But now that it's written out like that, I ... [snip!] ... enough, granted he got full use of his body back, it was scary! I'm really sorry you're going through this, it has to be hard!"</blockquote>


Both of my other kids have developmental apraxia... One is just being monitored finally because he's caught up with his peers just barely. And my middle son has severe developmental apraxia, he's getting a speech device soon. And here is baby who we're being told had an actual stroke. He has been seen by this woman since 2 months old. I'm exhausted today.