Step difficult child's diagnosis

[Hound dog]

Ok. Well. Stepgfg hasn't been online for quite a while, at least 2 weeks. Except she did pop on long enough to tell Nichole they were sick.

Turns out hers wasn't what the kids had. She's had a horrendous migraine for the past week or more. Crippling. Finally her husband convinced her to go to the ER. They admitted her because by that point she'd started seizing. When the neuro saw her she asked again what the diagnosis was exactly.

chiari malformation type 2

Step difficult child doesn't know it but I know someone with this condition. A bit milder than type 2. But this condition I know. Studied it in school, too. And what she's telling me is ringing true.

After diagnosis they did extensive testing to see if they could do surgery to place a shut to relieve the pressure. But after the MRI's and such neuro thinks it will do more harm, and that the risk of her not surviving the surgery too great to attempt it. This also explains so many of the various symptoms she was having here. She doesn't have the spina bifida, but neuro couldn't tell her why. Because hers is awfully extensive. Of course it gets worse with age too if it can't be corrected and or a shut placed to relieve the pressure.

And it's not even far fetched that it's been missed up til now because my friend wasn't diagnosed until she was 29, and it was found by accident when they were looking for something else.

D@mn.

She got the cards and said that cheered her up alot. I'm glad.

Stepgfg said she's scared. (I don't blame her) And her husband just lost his job because the restaurant he's been managing went bankrupt and closed. They're waiting for unemployment to kick in. And he's searching for another job. No request for money. (not that I could send it anyway, or would) So I gave her links to various resources, including that anglefood ministries one TM had posted about. That's all I can do.

This hasn't quite soaked in yet. I just finished reading the email. And here's a kicker........she suggested places (good ones) to try for Travis some glasses.

I asked for her address so I could send envelopes and stamps, and so I could sign her up for free samples that I do online.

This is serious. I didn't want her lying. But I didn't want there to be a deadly conditon either.

I think I'll be talking with easy child about paying her a visit, then speak with stepgfg about it. This family needs to be reunited before something happens.

There is something wrong. I don't know what it is. But dammit there is something wrong when you have 2 kids with conditions that are terminal. Travis is 22 and stepgfg is 28. There is something wrong with that.

dammit

Sorry. Not making much sense right now.

 

[susiestar]

I am so very sorry. I hate that this is going on. Saying prayers for all of you.

Many hugs.

Susie

 

[flutterbee]

I'm so sorry, Lisa.

I think it might not be a bad idea for Travis to see the same neuro as step-difficult child and see if he can make sense of things. It might put more pieces of the puzzle together.

((((((hugs)))))

 

[Hound dog]

Heather

Travis has had too many MRI's for them to have missed it if he has this condition. But when he goes to the neuro, I will be telling them about stepgfg. Then if he wants another MRI just to be sure he can.

This is not one condition stepgfg can trip me up on. From damage she's describing, tests done, ect, it's all ringing quite true. Prognosis is based on amt of herniation into the spinal cord, CSF pressure, and whether or not it is operable. While she doesn't have the spinal bifida, she does have the scoliosis. Most likely hers could've been at least partially corrected if it had been caught when she was a kid, and could've greatly improved her prognosis. But while bioMom spoiled stepgfg, she avoided docs like the plague even though husband and I kept stepgfg insured right along with the rest of the kids. (even though we didn't have to) Also "fits" symptoms I saw while she was with us, and symptoms she complained of as a kid, but bioMom kept saying she just didn't want to go to school.

Ya know, my kids sure got majorly rooked on the roll of the genetic dice, didn't they. *sigh*

 

[flutterbee]

I wasn't think that they missed this with Travis, but that maybe genetically their conditions are somehow related. I don't think it's coincidence that they both have neurologically based disorders.

It would be interesting to see if they could do genetic testing and see if there was a specific gene that was tying this together. It might help them with treatment and it would be good to know with your other kids and grandbabies.

Just thinking out loud. Have that logical thing going on and there has to be some kind of genetic connection.

Does the neuro think she'll be able to have the surgery at a later time or are they not saying?

 

[Suz]

I'm so sorry, Lisa.

Hugs,
Suz

 

[Big Bad Kitty]

My mom had Chiari. Not sure what type. She had two brain surgeries.

I am so sorry Lisa.

 

[katya02]

I'm so sorry to hear this, Lisa.
{{{hugs}}} and prayers.

 

[trinityroyal]

Lisa, I'm so very sorry.
Saying prayers and sending {{{hugs}}}

 

[DammitJanet]

I have heard of this too. Im sorry.

 

[Hound dog]

Heather at this point neuro is saying an absolute no to surgery. The herniation is too extensive and pressure is too great to consider it. So it's not sounding like it will be a possiblity in the future. He's still dumbstruck she's still around. She already has quite a bit of brain damage caused by both the pressure and the herniation. The seizures aren't helping either. And her symptoms are becoming severe. And it's affecting her cognitive abilities quite a bit.

Just an FYI.......I did a police records check on both stepgfg and her husband. Both came back clean as a whistle. Except the tax thing when stepgfg lost the house her grandpa left her. So they've kept their noses out of trouble. (or not got caught)

I feel horrible. I saw the symptoms. She had them pretty severe while here. I knew something was going on.......Just couldn't for the life of me figure it out. Didn't help she wasn't contributing much info either. But still. I do remember once asking her to go to Travis' neuro and she declined. Her mother has instilled in her a fear of docs. It was much easier to jump on the bandwagon created by bioMom that she was doing drugs. sigh That hindsight will get ya every time.

Doesn't excuse some of the awful behavior she had here, nor will I let it. But it makes the vast majority of it understandable.

In the last few emails I see the old stepgfg, the one I knew before she came to live here. I see a genuine concern for her sibs that was lacking while she was here. A mature understanding of what is going on with them. So maybe time, rough times, and this diagnosis has done alot with her on the maturity scale.

Eventually I'm going to feel her out for what type of support system she has there. I don't like the thought of her way over there going this alone with just her husband. I'm wondering what the deal is with bioMom and I may just come out and ask.

Strange how life works. Ya know. Even if I wanted to do the Mom to the Rescue routine, I couldn't. Bringing her here would hurt her more than help her. She wouldn't be eligible for a darn thing for at least 6 months. And we in no way could afford to bring the family here and have them stay. We're in as bad as shape as she is. Blows. But it's a fact. So I have to attempt it from 3 states away, as best I can.

Yes. Stepgfg made her choice 6 yrs ago when she ran out on her family here. And is now reaping the conscquences of that decision. She is too far for us to be her support system in any real sense. But I agree with Star, sometimes natural consequences reak and are way overboard.

And yes. I take on some of the blame for that decision myself. Why? Because I missed it too. Yes we supported her, but I also let her down in so many many ways. I was too quick to judge instead of rooting out the real reason for her behavior and symptoms. And in that respect, I know she didn't feel we supported her or believed her either. If it is a defense, while she was here I was drowning in Travis' issues and spending the majority of my time in specialists offices and fighting the school. But in my mind as a Mom, it's not a defense. There is none for pushing aside the needs of one child for another. If I could re-wind tiime I'd go back and change it. But I can't, so I'll have to live with my own decisions. I did my best. My best wasn't good enough. It happens.

Heather, in the light of a new day.........Yes. I'll mention it to the neuro and we'll discuss a possible connection. Could be Travis has a very minor type 1. Am also gonna push for Nichole to get an MRI when she sees the doctor as she's having arm/face/leg numbness that the cause hasn't been found for. And has seized in the past. (just in case) I'm also going to ask if she's had Alex checked. Wouldn't be a bad idea if she hasn't. I've told easy child so she can inform the fam doctor. First thing out of PCs mouth was OMG Mom this explains so much. *sigh*

Makes me sick inside. I've decided I'd have much preferred her to be making it up in hopes of getting back together with the family. I'd have been mad, but mad you can get over. This...this is so very final.

I've been thinking about the grands. And I'm only, can't stress that enough, only thinking if their postion over there becomes critical enough if it would be possible to get them here to keep them off the street. Doubtful stepgfg or her husband would go for it anyway. But just in case, I'm doing some thinking. I like to have plans in place. Just the way I am. At the moment though......just don't really see it being possible. And I have to wonder how her husband will be after she passes. Those kids loved him to be sure, and while I was visiting he doted on them. But I don't know him well, and so don't know how he'll deal with grief and raising 3 little ones alone. Maybe that's what has stepgfg so concerned as well. But as I said, only thinking as in that situation I wouldn't really be having a clue as to what I'd be taking on.

The visit is a good idea if stepgfg will go for it. Couldn't make it happen maybe until december......... Maybe over a weekend, but it's a good 16 hour drive just to get there. Of course sister in law could get us free plane tickets, but i doubt for the whole family. So if everyone's going, it'll have to be via car.

And husband still refuses to talk about stepgfg. If I bring it up, he snarls. Ok. So he's a grouchy old fart anyway, but this is beginning to grate. And yeah, he stinks in the parenting dept. but for the love of God, this is his child we're talking about!

You know, God is gonna have some serious explaining to do when I see him.

 

[witzend]

Oh, Lisa... I can't blame you for feeling badly that you saw the symptoms but couldn't help. I also know that deep down you know that there was nothing you could have done at the time.

I really think it is a good thing that you have reconnected, ever so slowly, at this time. I think you would have been suspicious if she had contacted you after the diagnosis. Take it easy and slow, and do what you think is right. This is an awful thing, but it isn't an immediate death sentence (you know I'm not being cruel...) either. I'm sure that together you can all come to a place where you are comfortable with the level of support that you are able to give.

 

[Marcie Mac]

So sorry Lisa

Marcie

 

[Hound dog]

Thanks for the suupport ladies. And Witz I know you're not trying to be cruel.

Sad thing is that, while it's not necessarily an immediate death sentence, it could be. (don't know if that quite makes sense) The very real danger is in the seizures. One wrong head movement during a seizure and that's it. Whiich is most likely why they hospitalized her.

So hopefully they can give her a medication that will keep them under control, if they haven't already.

Just stinks all the way around.

 

[susiestar]

This truly bites. I am so very sorry. Please know that you did what you could, and it is needed for you to forgive yourself! Big hugs, Susie

 

[meowbunny]

I'm so very sorry. As strange as this sounds, I'm so very glad she reached out to contact you guys and she has you in her corner. She must be scared out of her mind. I'm glad you can go see her. That may answer a lot of questions about what will be needed as time goes on.

Many hugs and good thoughts to all of you.

 

[everywoman]

This blows! I am so, so sorry Lisa. And while I'm sorry that such a thing has brought her back into your life, I'm also glad that you can be there for her and the children. I know that her leaving left an empty spot in your heart and the heart of your children. Sometimes its okay to be mad at God. I think he's probably big enough to take it. LOL!
I don't understand his plan all the time, but I try to believe that there is one, he just hasn't let me in on it all. Hopefully some relieve can be found for the pain she is suffering. Hopefully you can get to see her soon. I will keep you and yours in my thoughts as you struggle to find meaning and acceptance of things beyond your control. Hugs.

 

[witzend]

Sad thing is that, while it's not necessarily an immediate death sentence, it could be. (don't know if that quite makes sense) The very real danger is in the seizures.

Yes, you are right. Big hugs, Lisa.

 

[KTMom91]

Oh, Lisa. I'm so sorry. Many hugs and prayers for all of you.

 

[janebrain]

Hi Lisa,
I don't know anything about this condition but wanted to send hugs and good thoughts to you. I am so sorry, sounds like you have been through so much already with your stepgfg. Keep us updated, wish I could do something.
Hugs,
Jane