MRI results

[chickypoo2468]

I just got a call from O's neurologist about the results from his MRI on Friday. They won't tell us anything over the phone but we need to come in this week. I'm kind of freaking out here. She said we don't need to drop everything and come in immediately, but we need to come this week to "start getting ahead of... uh, the next plan for treatment" I can't help but think that if there's something to "get ahead of" then that can't be good. I'm terrified and I just want to go now. I have like 10 minutes til they're back from lunch and I can make the appointment. I don't have anyone to cry to right now so you guys are up.

[akafred]

((Hugs))

Fx nothing serious.

[chickypoo2468]

Ug appt not til Wed. So now I have to deal with telling his PT, OT, and chiro while trying not to cry because we will see all three before then.
I'd really like to just crawl in a hole.

[zaraceligon]

Hugs, MK. You can do this, is just the first step for a long journal. you will be on my pryers.

[luvboston]

Take a breath. No matter what it is you and he will be ok. The things you know it's not are any type of emergent bleed or need for emergency surgery.
If he needs surgery we will walk you through it.
Hugs keep your head up!

[mrsbuttinski]

No words of wisdom; just good thoughts for your family.

[greysonsmom]

Lots of hugs! Maybe some answers will be a good thing.

[chickypoo2468]

Ok so I guess MH told them I was a mess and they called me back. There are no lesions or tumors or bleeds, but there is a mild decrease in white matter. The nurse I was speaking to said she didn't really know what it meant or if there would be more tests but that it could be due to his age and the doctor has to go over it all with me.
He still has an EEG in April though so I feel like there has to be more if they didn't just say to wait until those results come back to go over both together. But at least I can stop thinking his days are numbered (ETA... right? I hope?)

[luvboston]

childrensnational.org/research-and-education/center-for-genetic-medicine-research


Scroll to 3/4 way down

[mrsbuttinski]

Mar 6, 2017 17:25:32 GMT -5 chickypoo2468 said:

Ok so I guess MH told them I was a mess and they called me back. There are no lesions or tumors or bleeds, but there is a mild decrease in white matter. The nurse I was speaking to said she didn't really know what it meant or if there would be more tests but that it could be due to his age and the doctor has to go over it all with me.
He still has an EEG in April though so I feel like there has to be more if they didn't just say to wait until those results come back to go over both together. But at least I can stop thinking his days are numbered (ETA... right? I hope?)

I am so glad they called you back asap. No parent should have to live with knowing there's information about her child's well-being and being told to wait until it's convenient for the team to deliver it. 

Are they suggesting a decrease in white matter based on previous MRIs? Or is the finding less white matter than would be expected of a child this age? Is this related to delayed or immature myelination which is sometimes seen in children with developmental delays. 

[chickypoo2468]

Mar 7, 2017 6:35:40 GMT -5 mrsbuttinski said:

Mar 6, 2017 17:25:32 GMT -5 chickypoo2468 said:

Ok so I guess MH told them I was a mess and they called me back. There are no lesions or tumors or bleeds, but there is a mild decrease in white matter. The nurse I was speaking to said she didn't really know what it meant or if there would be more tests but that it could be due to his age and the doctor has to go over it all with me.
He still has an EEG in April though so I feel like there has to be more if they didn't just say to wait until those results come back to go over both together. But at least I can stop thinking his days are numbered (ETA... right? I hope?)

I am so glad they called you back asap. No parent should have to live with knowing there's information about her child's well-being and being told to wait until it's convenient for the team to deliver it. 

Are they suggesting a decrease in white matter based on previous MRIs? Or is the finding less white matter than would be expected of a child this age? Is this related to delayed or immature myelination which is sometimes seen in children with developmental delays. 

That's what I was wondering. The girl who called me back said she really didn't know much about it and the doctor was down doing EEGs so she couldn't ask her.
This was his second MRI but the first one was when he was only 3 months old. That one said myelination was appropriate for age. I'm not sure if "decreased" was the right word, I'm hoping it's just something that explains his delays and that's it. I was reading more about white matter diseases and it sounds like if he was losing white matter then he would be way worse than he is and have more complications. So I will try to stick with that until I'm told otherwise.

[chickypoo2468]

Mar 6, 2017 20:33:10 GMT -5 luvboston said:

childrensnational.org/research-and-education/center-for-genetic-medicine-research


Scroll to 3/4 way down

I'm mobile and it looks like things are moved around... are you referring to the brain matter disorders study?

[luvboston]

Mar 7, 2017 12:14:54 GMT -5 chickypoo2468 said:

Mar 6, 2017 20:33:10 GMT -5 luvboston said:

childrensnational.org/research-and-education/center-for-genetic-medicine-research


Scroll to 3/4 way down

I'm mobile and it looks like things are moved around... are you referring to the brain matter disorders study?

No it gave a great explanation if white matter and the different conditions associated with decreased matter. Let me try again on a real computer

[chickypoo2468]

Mar 7, 2017 14:13:55 GMT -5 luvboston said:

Mar 7, 2017 12:14:54 GMT -5 chickypoo2468 said:

I'm mobile and it looks like things are moved around... are you referring to the brain matter disorders study?

No it gave a great explanation if white matter and the different conditions associated with decreased matter. Let me try again on a real computer

I can look from a real computer later

[chickypoo2468]

luvboston I didn't see it. I tried searching but I'm not sure if I found the right one. Is there a title I can look for?

[chickypoo2468]

Mar 7, 2017 6:35:40 GMT -5 mrsbuttinski said:

Mar 6, 2017 17:25:32 GMT -5 chickypoo2468 said:

Ok so I guess MH told them I was a mess and they called me back. There are no lesions or tumors or bleeds, but there is a mild decrease in white matter. The nurse I was speaking to said she didn't really know what it meant or if there would be more tests but that it could be due to his age and the doctor has to go over it all with me.
He still has an EEG in April though so I feel like there has to be more if they didn't just say to wait until those results come back to go over both together. But at least I can stop thinking his days are numbered (ETA... right? I hope?)

I am so glad they called you back asap. No parent should have to live with knowing there's information about her child's well-being and being told to wait until it's convenient for the team to deliver it. 

Are they suggesting a decrease in white matter based on previous MRIs? Or is the finding less white matter than would be expected of a child this age? Is this related to delayed or immature myelination which is sometimes seen in children with developmental delays. 

Oh, and it ended up being diffuse white matter volume loss and thinning of the corpus callosum, compared to his MRI at 3 months.
She's sending us to a white matter specialist (who actually is our geneticist so hurray for having an appointment already on the books that we made a few months ago, if only it wasn't still a month away)
I asked about the things I've read saying they don't live long, she just said that without a definitive diagnosis she can't give me any sort of prognosis, just to not think about the scary stuff and that it's good that he's still showing some progress.
So here's hoping someone read the MRI wrong I guess? I'm not even sure what I'm supposed to do now, besides love on him extra.

[luvboston]

nodcc.org/corpus-callosum-disorders/faq/

[luvboston]

I'm sending you a pm

[chickypoo2468]

Ok now maybe I'm reaching. Would volume loss be like a percentile? Like 1 cup of water moved into a 2 cup dish would be a smaller water to dish ratio? But you didn't actually lose any water. Or is it actually millimeters and stuff?
I realize I'm not asking a bunch of brain specialists but I need this to make sense in a not scary way.

[luvboston]

The way white matter is seen on an MRI it's lit up white so they put the two scans next to each other and measure. White matter is white, gray matter is grey and you can clearly see the corpus callosum. If you have the images go look at them yourself it will be very obvious to you. Also if you google images of "white matter on MRI"

There are great diagrams explaining it.

[chickypoo2468]

Mar 9, 2017 14:33:11 GMT -5 luvboston said:

The way white matter is seen on an MRI it's lit up white so they put the two scans next to each other and measure. White matter is white, gray matter is grey and you can clearly see the corpus callosum. If you have the images go look at them yourself it will be very obvious to you. Also if you google images of "white matter on MRI"

There are great diagrams explaining it.

Yeah, I started looking at the images and they freaked me out so I stopped. I've already spent my entire day googling and finding nothing helpful. I feel like if you're looking at a 3 month old brain and a 19 month old brain you shouldn't just be eyeballing it though.

[chickypoo2468]

The specialist looked at the scans and said things look stable right now so we can wait until our scheduled appt in a month. That's also when we were doing the WES. But today I got a letter that it's time to renew our Children's Special Health Care insurance and we don't qualify anymore bc they just opened up OT at MH's work and one of his checks is too large for their monthly allotment. His yearly income was under but we took out a hardship withdrawal on his 401k and they count that so it puts us barely over. This was the insurance that was going to pay for the genetic testing, no questions asked as long as we use their labs. So Monday I'm going to call and see if there's any way to get it done this week. If they don't then that sets us back months, if our primary ins will even cover it.

[luvboston]

Mar 11, 2017 21:20:55 GMT -5 chickypoo2468 said:

The specialist looked at the scans and said things look stable right now so we can wait until our scheduled appt in a month. That's also when we were doing the WES. But today I got a letter that it's time to renew our Children's Special Health Care insurance and we don't qualify anymore bc they just opened up OT at MH's work and one of his checks is too large for their monthly allotment. His yearly income was under but we took out a hardship withdrawal on his 401k and they count that so it puts us barely over. This was the insurance that was going to pay for the genetic testing, no questions asked as long as we use their labs. So Monday I'm going to call and see if there's any way to get it done this week. If they don't then that sets us back months, if our primary ins will even cover it.

Sometimes you call and get a special exemption from the insurance if you show them what the hardship money was used for.

[chickypoo2468]

Mar 11, 2017 22:03:16 GMT -5 luvboston said:

Mar 11, 2017 21:20:55 GMT -5 chickypoo2468 said:

The specialist looked at the scans and said things look stable right now so we can wait until our scheduled appt in a month. That's also when we were doing the WES. But today I got a letter that it's time to renew our Children's Special Health Care insurance and we don't qualify anymore bc they just opened up OT at MH's work and one of his checks is too large for their monthly allotment. His yearly income was under but we took out a hardship withdrawal on his 401k and they count that so it puts us barely over. This was the insurance that was going to pay for the genetic testing, no questions asked as long as we use their labs. So Monday I'm going to call and see if there's any way to get it done this week. If they don't then that sets us back months, if our primary ins will even cover it.

Sometimes you call and get a special exemption from the insurance if you show them what the hardship money was used for.

It was for a roof.
I figured if we tried to explain they would say to just use the last three check stubs, since either way works, but since that won't work either we're probably SOL

ETA MH is going to call.

[chickypoo2468]

I felt I should update. We just saw the geneticist/white brain matter specialist and he doesn't think that O is losing brain matter. So thank God! He said it's hard to compare a 19 month MRI to a 3 month MRI, and it might not be as myelinated as it should be, but that could have to do with his delays. He said he doesn't think we need to plan another MRI so I take that as a great sign.
He's glad we have the neuropsychologist testing coming up (so thank you ladies for talking me out of cancelling lol) and said even if he's not on the spectrum he thinks that he will benefit from the testing and that a behavioral therapist would help. So that's in a couple weeks.
We also did the labs for WES.

[k3am]

chickypoo2468, that's great news!

DD had a neuropsych exam at 3.75. Honestly, I wish every kid could have one. It was nice to know what we didn't need to worry about and areas they have some concern about.

[chickypoo2468]

Apr 17, 2017 12:40:42 GMT -5 k3am said:

chickypoo2468, that's great news!

DD had a neuropsych exam at 3.75. Honestly, I wish every kid could have one. It was nice to know what we didn't need to worry about and areas they have some concern about.

That's good to hear, I'm still not totally clear on what all it means. Everyone keeps poo-pooing autism like I'm just trying to join the fight, but really I just want to be able to help my kid and to be able to interact and play and help my other kids to do the same. An autism diagnosis isn't my end goal.