Re: PID Holy Shfunking Cow Bat Man

[valarie k]

Can I come to Egypt too?(Id feel comfy, our pulmo is from Egypt and goes home often!lol) Went to the dietician last week.......was informed our oldest kid, the one with ONLY asthma, the only relatively healthy one, is at high risk for an eatiing disorder.......being a child with chronically sick siblings.....bc she associates eating with pain(still trying to figure out her GI issues), and of course, bc she's twelve, and what twelve yr old girl DOESNT have issues? she thinks we should put her in therapy. Im starting to feel a little odd at the behavior clinic. I took Savannah for therapy for anxiety last yr, that was due to an un'dx'd learning disorder, plus dealing with her CVID. When Savannah finished, I started taking Donovan, bc of extreme anxiety, difficulty dealing with CVID, and now he's seeing the psych there and on Zoloft(and doing really well). Now......do I really have to call this place and ask to make appts for a third kid, who might(or might not) be prone to more problems bc she has mild anxiety, three sick siblings, and is incredibly skinny? am I the only person who thinks this is going to look really weird? valarie --- On Fri, 4/25/08, Pattie Curran <catholi...@gmail.com> wrote: From: Pattie Curran <catholi...@gmail.com> Subject: PID Holy Shfunking Cow Bat Man To: "Pattie Curran" <catholi...@gmail.com> Date: Friday, April 25, 2008, 12:13 PM My funk just got worse.... I'm shfunking big time now.   (New folks shock + funk =shfunk)   I need to get on the next boat to Egypt FAST.  Yes I have been in Egypt ...regarding CBCs regularly.....   Just found out today that we have to bring S&J for a CBC w/diff sometime next week.  The ped asked  how often we are supposed to do routine CBCs.... I've never really asked about that as we have been just doing them when sick.  Of course with doing home SCIG we don't get the monthly CBCs we were getting.   I may end up in the mental institution before long.   Any hopes I had were dashed by the ped . We can't take Joseph off the Ditropan, she agrees that the potential damage to his kidneys is worse than any risk of side effects.  Meanwhile she said that the signs J had of nausea and such after being outside were signs of heat stroke & even though we are keeping him hydrated, it doesn't help because the medication stops him from sweating--and even though he's on a lower dose now, it is still pretty high for a kid ( we've reduced it!!!!!) and he has to come in and cool down b/c drinking doesn't help.  I hate that we are in a position where we have to give him this AWFUL medication.    She brings up CBCs because the boys have dysplasia now and we have to worry that it could show up in the blood & move transplant up. (although, I am not worried about mild dysplasia)(the ped can read and read all the Cinci stuff...why does she read!?  Can't she stay in Egypt with me?)   I just need to camp out in freaking Egypt for the rest of my life.  Yes, there have been kids with clones in their marrow who develop leukemia rapidly (we talked about this--she's one smart cookie).....  and yes, I know they had dysplasia in their last marrows.......BUT IT IS MILD!   I don't want to do routine CBCs because I'm selfish and don't want the constant reminder that something is WRONG with my children.  I'm going to do it, of course.  I'm not that selfish.  Just doing CBCs all the time reminds my brain they have an issue.  Sigh.   She wonders if the bone pain and body aches are related to the marrow issues... who knows?  DID I tell you that Sean has been having bad ankle pain for months?  And we have to ice it--he still plays baseball, but we ice it afterward.     J's worries about so much and she wants us to go to counseling.  Even though I work with him and all here at home, she thinks an outside source might give him more coping skills, I agree...but where do we find the time????  More appointments?   I'm working on getting that scheduled.    We talked outside of the room so that J didn't hear us.   Switching allergy meds to see if we can help.  More later--gotta go get our bananas for our Honduras project.   Peace be with you,   Pattie The Will of God will never take you where the Grace of God won't be with you.

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[Cassie Redinger]

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[Terri Cerda]

Valerie,

 

I personally beleive in being proactive vs reactive.  We have both of the girls in therapy at 5 and 7.  Neither of the girls manifest any sort of phychological or behavioral issues.....we just know that they are coping (miraculously and amazingly well) with more pain and medical junk than any child should have to....so you might ask what the therapist does?  Well, she works with them on sibling rivalry, sharing, and other "normal" kid stuff.....in a very sneaky way.  She comes to our home and spends 20 hours a week living in the midst of our life and she has the opportunity to see what the children live with/in and works to prevent issues and to encourage open dialogue about things that are bothering them.  She teaches them ways to find peace in times of stress and to appropriate express their feelings and emotions..  It was hard to get used to at first, but now, 9 months later, she is almost part of the family.  It is so much easier to deal with issues when they are minor than to wait until late in the problem.  Other's may see things that you do not see, from a different perspective.  Be open to this, not only with yourself, but with your children.  Seeing a psychologist or social worker is so different then what it used to be....the stigma of being "mentally ill" is not there anymore.  If your children see you being fearful of the possiblity or see you finding a way to validate the need, it could make it more difficult for them too.  We have learned to encourage the girls to share with their councelor....to call her when they are under stress or scared.  Most of all, I am certain the staff at the councelor's office will understand and will not be judgemental.

 

Terri