Trying to hold it together

[babachi]

QUOTE
"I guess it's just that this situation looks so insurmountable. I've read your stories and been inspired but I don't have the strength you all have. My dd and dh are very strong and I guess I feel inadequate b/c I don't have their strength.

I'm also in the stage of beating myself up for missing this in her and not catching this earlier."


Marian,
Don't beat yourself up. I would NEVER have caught Jesse's scoliosis on my own. His pediatrician did during a routine physical. Jesse was 17* at his first appointment with the surgeon, so catching it early not necessarily guarantees no surgery.
You do and you will have the strength. You may not feel like you can handle it, but you will.
If I knew before Jesse's surgery what I know now, I may not have been so anxious.
Whatever you need, whenever...
Bethany
(I cant figure out how to quote.)

[babachi]

Well said Carmell!!

[pmsmom]

Marian,

I'm sorry to hear this. You are right to have faith in your surgeon. That is mainly what got me through my daughter's surgery.

We may be joining the summer surgery club... my other daughter has an appointment in early March. I am guessing this will be the "pull the trigger" appointment. She is over 40* almost certainly and even if there isn't a lot of progression in the last six months, she is guaranteed to have more over her life if we don't nip this in the bud soon.

Good luck.

Oh, Sharon, I'm so sorry to hear about your second daughter. I know it's got to be hard for you guys.

As for having faith in the surgeon, that's why we picked him.

If not for this board and your suggestions, I would most likely have gone with the first dr. we saw (not that we wouldn't have gotten a second opinion), but she most likely would've been operated on by a spine specialist and not a scoliosis specialist.

A member on this board suggested the surgeon we have now. We would not have known where to go.

Marian

[pmsmom]

Marian,

I typed you a PM and it dissapeared. I will retype it later if you don't get it.

We never would have found Katelyns except by accident (went for a skin rash, came out with scoliosis and later a tethered cord) and within a year and a half we are here. Don't beat yourself up What's important is now, not the past, not the future, but now. You are helping your daughter and you both will gain the strength you need through this. (I have never been particullarly STRONG emotionally either) I remember all the same feelings myself and sometimes still struggle with them. Hang in there and yes divine intervention is great. It is definately what has brought us this far. Hugs!

Sharon


Oh, and THANKS for all of YOUR encouragement to ME in the past. It means a lot to me.

Hi to Sharon # 2 as well. I didn't get the PM.

Wow! Talk about a shocker with having the rash then finding out about the scoliosis and tethered cord. Oh my goodness, I can't imagine!

Thank you for your wise words about the importance of *now.* You're right, I know it will take time to stop second-guessing myself and trying to leave the "what-ifs" in the past.

Marian

[pmsmom]

Thank you, Becky. We were expecting this somewhat. The 2 other surgeons we saw, however, said they expected a progression of 1-2 degrees/year as she was finished growing. But even though our current surgeon never said that, he did say he saw a definite progression from the fall.

Yes, everyone has given great advice.

Thank you for sharing about the bracing--I've often gone back over that, too--another "what if" we had caught it sooner. However, the surgeon said that he didn't think in dd's case it would've made much of a difference.

I see that your dd's surgery will be coming up shortly. I will keep you in my thoughts and prayers.

Marian

[pmsmom]

And to Carmell, thank you. My goodness, with all of your son's surgeries you still offer a shoulder here--God bless you!

Thank you for bringing up talking to the anesthesiologist--I will make sure that is done. I get so tired of telling people who brush me off. At one point several years ago her pediatrician got so fed up with me telling him she'd break out in rashes and such that he sent me to an allergist to get her tested. When the results on a certain antibiotic came back + for allergy, he tried another one and so on and so forth til after several years, we found some she can take. I've had nurses tell me after my dd's had hives from liquid Xoepenex in a nebulizer, "No one is allergic to that!" So I will have a long heart to heart talk with the anesthesiologist.

I know you all care--that's what means so much!

Marian

[Snoopy]

Marian,

It's hard not to beat yourself up, a lot of us have done it. My daughter was diagnosed at her 12 y.o. check-up with a 36* Scoliosis curve and a 70 something degree Kyphosis. Before her diagnosis, I'd never heard the word "Kyphosis". No one ever told me what Scoliosis looked like. For several months before her diagnosis, my husband would walk up behind her and pull her shoulders back and tell her "shoulders back, chest out" and she'd say I can't. We never thought it was more than bad posture. Yeah, as a mom I thought it was my fault. How could I not have seen the signs? It takes awhile to stop beating yourself up, but it is not your fault. Remember that.

Mary Lou

[Karen Ocker]

allergies--must be tested for.

I had an area on my chest which itched for 6 years and had it biopsied 2x. I finally went to a dermatologist at a teaching hospital. A very thorough skin testing was done and I found out I am allergic to neosporin(extremely common-but I knew I was allergic to it ) and propylene glycol which is in so many skin preparations, deodorants, cosmetics, medications and even vitamin preparations. Many people think it's antifreeze but that is a different grade.

http://en.wikipedia.org/wiki/Propylene_glycol

Interestingly, many of the remedies which were prescribed for me had it in the remedies. No wonder they didn't work!!!

The point I am trying to make is I never could have guessed this in my wildest imagination.

A thorough testing is really mandatory.

[Carmell]

Well said Carmell!!

Thank you. That means a lot.

And to Carmell, thank you. My goodness, with all of your son's surgeries you still offer a shoulder here--God bless you!

Well, the ruse of offering a shoulder to lean on is to hide the fact that these support sites/lists are actually my therapy. My own life seems a little less overwhelming when I can share with others.

Everyone here has consciously or accidentally been so helpful to me. There's no way to pay back, so we all try to "pay it forward". It hopefully makes new parents (and patients) feel like they aren't alone on this scoliosis journey.

[pmsmom]

Marian,

It's hard not to beat yourself up, a lot of us have done it. My daughter was diagnosed at her 12 y.o. check-up with a 36* Scoliosis curve and a 70 something degree Kyphosis. Before her diagnosis, I'd never heard the word "Kyphosis". No one ever told me what Scoliosis looked like. For several months before her diagnosis, my husband would walk up behind her and pull her shoulders back and tell her "shoulders back, chest out" and she'd say I can't. We never thought it was more than bad posture. Yeah, as a mom I thought it was my fault. How could I not have seen the signs? It takes awhile to stop beating yourself up, but it is not your fault. Remember that.

Mary Lou

Thanks, Mary Lou.

One of the things with my dd is that she wears loose clothing--t-shirts, etc.
Most of her stuff has short sleeves, or she wears sweatshirts. Just her preferences--Thank goodness, she's not a Paris Hilton!

Dh talked to a woman at his work whose child had this surgery last summer. When he told her that I was taking this kind of hard, she told him, "Your wife will. Believe me!"

I tell him about how hard it is for the moms here, but I think until someone actually told him face to face, it didn't sink in for him. It had to come from someone else's lips.

Marian

[pmsmom]

Interestingly, many of the remedies which were prescribed for me had it in the remedies. No wonder they didn't work!!!

The point I am trying to make is I never could have guessed this in my wildest imagination.

A thorough testing is really mandatory.

Oh, Karen--I know what you mean! That's happened to us, too.

Once her allergist prescribed an asthma control medication and she started to get worse from taking it. When I called to set up an appt. for him to recheck her, the nurse was giving me a hard time. I had to finally tell her, "Look, he prescribed this for her and now he won't see her b/c she's having problems?"

After 25 years as a mom, you learn how to phrase things.

Anyway, we got the appointment, and sure enough, the control medication was making her worse. Symptoms went away almost immediately after we stopped it.

To this day, if he tries anything new with her, I have her take the first dose at his office to make sure there's no immediate reaction.

So, it's just insisting on the testing w/ the doctors.

I will push for this though. Thank you!

Marian

[pmsmom]

Well, the ruse of offering a shoulder to lean on is to hide the fact that these support sites/lists are actually my therapy. My own life seems a little less overwhelming when I can share with others.

Everyone here has consciously or accidentally been so helpful to me. There's no way to pay back, so we all try to "pay it forward". It hopefully makes new parents (and patients) feel like they aren't alone on this scoliosis journey.

It does make a difference! Thank you!

New topic though--how much about the surgery did you tell your children beforehand--catheter, etc.? I know each child is different, but I don't want to overwhelm dd. She's a tough cookie, but I don't want to overwhelm her.

I'm slowly talking about things like letting the nurses help her in the bathroom and such. I plan to introduce things slowly over the next few months, but is there anything you all advise to share/not share?

Marian

[Beckymk]

I have forgotten the age of your DD.

One thing I have done is there are lots of videos of people who have gone through this & are willing to share it on-line. I'm so greatful for that.

I have found a couple that just strike me as fantastic to share with DD so I have done that. It was really great because one of her biggest fears were the tubes. She heard of them and for some odd reason had in her head that they were these monster tubes the size of drinking straws or something. She watched one video, so the tubes were not huge and was so relieved. I think her imagination was getting the best of her but to actually see what in general was used really helped.

I have them bookmarked, so here you go:

http://www.youtube.com/watch?v=lmZZX1YkXjU

http://www.iscoliosis.com/video.html...deocookie=.wmv

[smileyskl]

Marian,

I told Katelyn about everything she would remember. If it was something that she would be awake for I told her. Kids imaginations can be much worse than the real thing. Also, like Becky, we checked out some you tube videos - we even made our own but I don't know if we will post it or not because of privacy. Katelyn wants to since these others helped her but I don't know. Aynway, we watched Torries scoliosis video on you-tube (we just typed that in the search bar) I am not sure how to add attach. here. Anyway, she even e-mailed Torrie and Torrie e-mailed her. Torrie is 15 and had her surgery about 8 months ago. She does the video and e-mail thing to help other kids. She is really sweet and worth checking out. I don't think Katelyn understood completely that donor bone meant not her own bone and it came up in a conversation the other day and she had a complete meltdown. I think they should know whats going on. I don't regret telling her upfront even though she is an anxious child in general, she handled it okay. She likes to know whats going on. In our case, it helped her fears.

Sharon

[pmsmom]

Thanks, for the links. I will check them out.

My dd just turned 16 in January. Don't know if I ever shared her name, but it's Paula.

Thus, my user name--pmsmom--I don't have PMS, it just looks like that!

Marian