Our Daughter~Prayer Request

By rbergman Latest Reply 2009-03-13 19:17:40 -0500
Started 2009-02-23 21:54:07 -0600

It has been a very long day and there will be a few more to come. We arrived for Laura's appointment today for more tests and what we thought was going to be a treatment plan, instead she was hospitalized because we found out some of the more recent tests were a false positive, after further testing today it was found that she has antibodies attacking not only her pancreas, but also her liver and kidney's. Because of the abnormally high antibody count they felt hospitalizing her was our best option at this time to try once again to figure out why her auto-immune system is doing this. Normally there are 3 main things that auto-immune cause or affect…thyroid, pancreas and gluten tolerance. Sometimes it affects only 1 sometimes more which is called a cluster effect. However, with Laura they have found other organs are being affected as well and that isn't good. She had previously been tested for tumors after her Thyroid stopped working, the pituitary gland in the brain was swollen but showed no signs of a tumor at that time. More recent blood tests revealed she has Hemochromatosis which they then thought caused bronze diabetes or diabetes incipidus, however, tests today showed normal iron levels as apposed to the last test that showed abnormally high levels of iron…they liken this to an electric current that is bouncing around inside a container of newspaper, it strikes long enough to leave a trace or marker that it was there but then moves on to another spot so quickly it cannot be pinpointed. Tomorrow will be a series of CT scans, MRI's, EEG, EKG, another blood antibody test, a vitamin D test, cholesterol tests and a few I can't remember right now to be compared to other recent tests.
Dean went home and gathered things for us to be here for awhile and I insisted he bring my laptop, thank God I can get a pretty decent signal. I'm going nuts here, there are no answers only more questions, we have had a nephrologist (Kidney)in to see her, the ped endo(her endo), a neurologist(brain), a gastroenterologist( liver, intestine and such), a cardiologist (heart)and an oncologist( cancer). I don't mind telling you that last one scares me the most, its precautionary right now they keep saying but why bring them in if they don't suspect it? Right now Dean is on the bed with her both napping, I can't even think about sleep at this time and don't care to anyway. She looks so helpless laying there with tubes and wires going in every direction, she's scared and I can't answer her constant "Why" questions anymore, I have no answers and neither does anyone else. Her brother is staying with neighbors because he didn't want to see his sister like this and that's probably for the best right now. Dean is withdrawn and like a sponge just soaking it up but not letting anything out (typical for him in stressful situations) but irritating to me, I feel alone and coming to this site and letting it out felt like a good option for me right now. All of our family (his and mine) are more than 1000miles away, I've asked them not to rush out here because we really don't know anything and I don't see the point in wasting money on a trip that may not be necessary at this time.
I have questioned the doctor's time and again if they could have something to do with the fact that she absorbed her twin in the womb and all I get for answers is…we need to run more tests to determine a cause or rule them out. Yea, big surprise there. I want them to find a cause of course but at times I feel like I'm just getting the run around and that they know, or suspect something but just won't tell me, paranoid maybe but this is my baby lying here and I feel so damn helpless I want to scream. I've prayed to God, I've cursed God, I've given up on God in a vicious circle over and over I just want answers and I'm not patient about it though I know I should be, let them do their jobs, but instead they stand around out in the hall discussing her over and over and don't tell me squat. She seems so healthy, how can this be happening to a child that seems like a normal 7yr old active girl, now she is lying there all tangled in this crap and scared and I can't undo it for her. They sedated her earlier because she was so scared and tried to fight them off when they kept poking her with IV needles and missing the veins, she tried to tell them where her blood is always drawn from but they wouldn't listen which pissed me off and I laid into them telling them if they would just listen to her they wouldn't have a problem hitting a vein…no big surprise they finally used the backs of both her hands just like she told them to do in the first place, assholes. I'm sorry for the language and if I get banned from the site for it so be it, I'm mad as hell and that's just how it is.
I was thinking earlier, a year ago she was just a normal little 6yr old girl with the whole world in front of her and in the last 6 months or so its like a totally different child, so many rules about what she can and can't have, how she has to eat the meds she has to take, and I keep wanting to know why her? Not that I would wish any child to be put through this but what did she do to deserve this? Is it my fault for having her knowing there were medical problems in the family? I tell myself no but it still creeps into the back of my mind.
Basically, I'm asking for your prayers for our daughter, that they find out why this is all happening to her and find a way to stop it or treat it or get rid of it or whatever needs to be done. I'm not an extremely religious person, I do believe in God for the most part, but I don't know what else to do but pray.

35 replies

southern_ lady
southern_ lady 2009-03-13 19:17:40 -0500 Report

I will surly pray for your daughter and you,I know where you are,they told us
3 month,s back that my 34 yr,old daughter
had kidney failure in both kidney,s now
she is on dialias and waiting for a
kidney transplant,,I know you are scared
and feel so helpless,just hold to God,s hand and keep him close.

steadb 2009-02-27 13:02:57 -0600 Report

This discussion thread inspires me to keep pushing the features of our community. Thanks for everyone's help.

GabbyPA 2009-02-27 06:16:59 -0600 Report

Tell Laura we are all proud of her accomplishment in the spelling bee. That is fantastic! She is a trooper and though you are frustrated, she is going to amaze you in so many ways. It's hard now, but just wait and see what she does.

rbergman 2009-02-25 07:57:54 -0600 Report

The doctor has just left, they are getting her release information for us together along with prescriptions and then after breakfast Laura can go home. (woohooo) Well they still have to pull out the IV site needles and such but everything is unhooked from her, she wanted to know if she had to wear the heart monitor at home too she said it's too loud and keeps her awake lol, the doctor told her no, that would be taken off too and she said "Good I didn't know a person's heart could be so loud" lol nice to see her feeling herself again. I asked about school tomorrow and both doctors said if she felt up to it she could go but she'll probably be tired for a few days (more than usual) just from everything her body and emotions have been through these past couple days. She is a lot like me very strong willed and speaks her mind (maybe that second part isn't such a good thing for a 7yr old lol) so I'm sure she will do everything she can to make it to the spelling bee tomorrow.
Anyway, I can't put in to words what finding this site and meeting all you awesome people has meant to me and I thank you all for putting up with what seems to be a book I've been writing lately but it has felt good to be able to let it out.

Hugs & Much Luv to you ALL!!!!

GabbyPA 2009-02-25 08:15:08 -0600 Report

Much relief and at least she is feeling more herself. I hope she does well in the spelling bee! You go Laura and spell your heart out!

rbergman 2009-02-25 15:10:26 -0600 Report

We are home, time to rest and try to relax, talk to you all soon!

Hugs and Much Luv,

Debe Pendice
Debe Pendice 2009-02-26 01:55:08 -0600 Report

Robin, I am happy for you. You have earned a well deserved rest. Take care of you and that beautiful family. We all are praying for you. Hugs…Debe

2009-02-26 17:49:12 -0600 Report

Hi friend! You have had a whirl of a week. Like I told you in my email, my mother was diagnosed with Addison's Disease at 28 and is 71 and going strong. She also has 3 other diseases that go hand and hand with Addison's. I have been amazed at my mom and the way she handles herself. Back in the day that she was diagnosed, nobody had ever heard of this. She was in a coma for over 8 months and weighed 50 pounds when they finally diagnosed her with Addison's. She does great with it and takes care of herself. I was an infant when she was diagnosed, however, I grew up with Addison's. I had to learn what to do very young to help her. It's rare, if ever, she goes into an Addison's crisis and only 1 short Addison's coma over 40 years later. My mom said she would be happy to talk with you. She goes to various hospitals and talks with new patients about Addison's because it is a rare disease that sounds much scarier than it is. My mom says my diabetes is much worse than her Addison's but I think it's just because she handles it so well. I tell you, I am proud to call you friend and I do believe in fate… Who would have ever guessed, the diabetes and the Addison's connection? Small world but I'm glad I found you and you're in my world. I'm here for you. Love, hugs and kisses, Ang

rbergman 2009-02-26 22:52:12 -0600 Report

Thanks seems like such a small word but it means the world to me to know there are such caring people out there.
I'm glad too that we have a diagnosis (again) (another) but I'm still very frustrated that all of her conditions are tied into one main cause, autoimmune failure with no known cause. Which means, this may or may not be the last diagnosis we get for her. They call this the cluster effect, where more than one organ is attacked by the antibodies. Sure I'm very happy it is not a tumor but the not knowing why is heartbreaking. I try to stay positive that this will be the last of it, but I've done that 3 times now, with each new diagnosis they make it sound so simple…meds to control…but never any cure for any of them and no reversals sucks.
I was always told God never gives you more than you could handle, if someone would tell him my cup runnith over I'd appreciate it, it doesn't seem like my messages are getting through.
On a lighter note, Laura took 3rd place in the spelling bee!!!! All things considered I wasn't even sure if she would make it to school much less do so well in the spelling bee under such circumstances. She won a certificate and a pack of UNO cards and all the kids that made it to the oral round got a candy bar…she told me she tried really hard not to eat it but just couldn't do it and had to eat. We've all been there as an adult so it isn't like I could scold her for it when I've not been any better myself. It's only been a few weeks, she just needs time to adjust, she'll get it eventually.

2009-02-27 06:41:55 -0600 Report

Way to go Laura! I am so glad she felt like doing that after the week she had! Tell her congratulations! Very proud of her!

jsd2005 2009-02-25 02:26:58 -0600 Report

waiting for answers, especially when it involves one so precious, can be aggravating and infuriating. Hang in there, rest assured they will leave no stone unturned and you will have answers, in time.

I wish you strength, patience and well wishes for answers and recovery

dyanne 2009-02-25 01:50:13 -0600 Report

Iam so glad you have gotten some answers !!! Thank goodness no tumors that is the best news. Iam sure Laura cant wait to get home and you too. Hospitals are never a fun place to be. I did pray for her and will continue to do so.
I hope you get some well needed sleep and all will work out.
would it be better if none of this happened ??? Oh yes but life doesnt always go as planned and with all the family and friends support Iam sure you will all do fine.
Good luck and so glad this part is over for you all !!!

rbergman 2009-02-24 22:28:35 -0600 Report

I think I need to clear up a mistake I made in an earlier post, I had said that the Addison's was the cause of Laura's other issues, I was wrong, it's just another problem caused by her autoimmune failure. I didn't mean to mislead anyone I just got facts confused that the doctors had told us. They are all connected but it is because of the autoimmune that she has all 3 issues. They have NOT found any reason for the autoimmune so as far as that goes its just there, no cause or reason explained in any tests, which is good and bad I guess. No tumors or such is awesome but not finding the cause of the root problem is just something we will have to live with, it just happens sometimes without explanation, there is a word for it but I can't remember what they called it now.
Anyway, Laura is sleeping and if things look good in the morning she will get to go home. At least she didn't have to be sedated anymore and was exhausted anyway. My BG was a little better, 201 tonight, hers was 82, stress is a cruel evil I wish nobody had to deal with.
Avera, ty for the web addy, I looked up some stuff on wikapedia before coming to the site but my mind is exhausted and I wasn't really grasping the information there, maybe tomorrow will be a better day to do my own research and check out that site you listed as well.
One of the night nurses is a diabetic as well and made homemade food for me and Laura and brought it to work with her tonight, how sweet of her, it was so much better than hospital food could ever be, the hospital's idea of a diabetic low carb diet is something that looks like food but tastes like cardboard with a oak tree on the side lol. I'm thankful for the staff here, Lord knows I wasn't the nicest parent lately but they claim they are used to that around here, that I'm not the first and won't be the last less than patient mother lol
Roshy, I know it isn't my fault but it doesn't help me from feeling guilty about Laura going through this, I've been assured that yes, she may have had a predisposition for diabetes but had it not been for the autoimmune failure none of these things would be happening to her, that the weight gain from the initial thyroid condition helped trigger early onset of the diabetes, (there is that whole overweight causes diabetes train of thought thing again even from the doctors) anyway, I will be strong for her and the rest of my family and when I get time alone that's when I will break down and have myself a good cry. Dean called to say he and Wade (and neighbors) made it home but that our road was flooded in several spots due to the snow and ice melting in the 60 degree weather the past couple days and to be careful coming home cause the road is dangerous with ruts and water everywhere. He was rambling which means he was trying to keep his mind off of the whole situation too. Wade was glad to know Laura would be home tomorrow by the looks of things but said it sucked that she gets to miss the rest of the week of school and not be counted absent lol (you have to understand, Wade is 10 and has never missed a day or even a half day of school because of illness or such, he has a perfect attendance record that goes back to kindergarten so he feels sort of cheated he has to do it the hard way and she gets the "easy" way out in his mind lol)
Anyway, speaking of rambling seems I'm doing it again so will end this here and let you all know when we get home.
Hugs & Luv,

cakeybakes 2009-02-24 22:18:32 -0600 Report

I will pray for your family. I have been through frustrations with both of my children as well, thank God, not as severe, but worrisome nevertheless.

roshy 2009-02-24 19:00:49 -0600 Report

Hello !

I just read your story and i have to reply!!

This is coming from a child who has diabetes and who inherited it from her father.

Through all my confusion, hurt, isolation, sadness and anger caused by my diabetes i have never ever once resented or blamed my father for having Diabetes and geneticly passing it on to me and neither will your child. You should never blame yourself for having medical problems because your child never blames you

Although she is young she is very intelligent and there is no other persons she would rather have at her bed side right now is you and her father. She might be scared but she is strong and she may be confused with what is going on right now but she completely comforted by the fact that no matter what happens mammy and daddy will be there to fight fot her, to smile at her and sometimes cry with her but you are someone who should never doubt on what a wonderful parent you are. And remeber your daughter loves you just as much as you love her.

Ill be thinking of you and your family

LadyDi - 26259Miller
LadyDi - 26259Miller 2009-02-24 17:30:02 -0600 Report

Robin, I'm just getting DC for the first time today and found this nightmare going on. I know you all must be physically, mentally and emotionally drained right now, but I am happy to hear that you have been given a diagnosis and a little relief. It really is so much for anyone to go through, much less someone Laura's age. I'll be saying a special prayer for God to give her the comfort, strength and courage she needs to deal with all of this. You and Dean, of course, are in my prayers for those same things. I do believe in God. Do I always understand what takes place in our lives? Certainly not. But I know my God is a loving and caring God, and that He can and does work miracles. Just allow Him to take your cares and worries from you and have faith in Him and His all encompassing love.


gma 2009-02-24 17:27:10 -0600 Report

I will pray for your family I truley belive in the power of prayer please keep us posted and please take care of your self for her sake your friend Deb

highlandcitygirl 2009-02-24 16:08:54 -0600 Report

i am so sorry that your child is going through so much! i pray in JESUS name that she is comforted with the peace that passes understanding and of course for youself also.

sparkysmom 2009-02-24 15:58:11 -0600 Report

I just read this. Poor Baby! So much for such a young one. I am adding you to our prayer list as is my Auntie and My friend. We will keep You and Yours in our prayers.

rbergman 2009-02-24 15:07:17 -0600 Report

UPDATE: We have an answer now, a definite answer now, all the doctors are in agreement. Laura has Addison's Disease. I haven't had time to research it on my own and only know what they are telling us right now but it seems her Adrenal Gland has been destroyed by what they are calling Autoimmune destruction. This is the underlying cause of both her diabetes and her hypothyroidism. There is a control for this but not a cure, neither her diabetes nor her thyroid conditions can be reversed either. They are putting her on 2 pills to control adrenal gland functions to prevent further damage to other organs, they did not find any damage to any other organs at this time and don't see any further damage being done once the medication begins, it will be a matter of getting the right dosages, one is a hydrocortisone tablet to replace missing cortisol, the other is a hormone replacer that controls sodium and water in the kidney (there is some kidney problems but nothing they didn't think couldn't be fixed so to speak.)
She is getting to go home tomorrow, they want her to stay one more day/night and start her on these new medications. She isn't happy about it but she is happy that they are done poking and prodding her with needles and tests, and of course she says the food doesn't taste good here (most of know that feeling lol)
I must say a wave of relief and a new wave of fear has washed over me in the past hours, I hate that she has to have more medications for something that cannot be fixed and only controlled but at least it can be controlled. She will be seen again in 2 wks to check the levels of the medications and make sure they are the right dosages, much like they do with her thyroid and diabetes medicines.
I know it's best not to think the worst but we naturally did when this all started yesterday, I too am glad they admitted her and she was seen by so many different specialists now (though it scared the bejeezus outta me when each new doctor appeared in her room). I have questioned over and over if they are positive this time because the roller coaster they put us on with misdiagnosis so many times lately has really taken it's toll. They explained that many of the symptoms Laura had could have been part of several different issues, including the high iron causing incipidus diabetes, but that also has been ruled out she is just a normal type 2 diabetic still leading towards type 1 but they think that these new medications may help by stopping the pancreas from completely failing. (Sorry for saying just a normal type 2 but considering the alternatives its not a bad thing). I don't know the names of the meds yet but as soon as I do drugs.com will be on my hit list for as much info on them as I can get besides what they are telling us and what the info that comes with it says.
Again, not to sound like a broken record but thank you all for your support and prayers. We aren't out of the woods yet but at least we can see a clearing ahead if what they are telling me is right this time.
Dean is going back tonight, with him being the only one employed at this time and this extra time being spent here he needs to get back to work. The neighbors that Wade has stayed with are coming to visit and bringing Wade and then Dean will go back home with them so I have our vehicle to get Laura and I home tomorrow. Money is tight enough and hospitals aren't cheap food even with vouchers for 1/2 off lol. Anyway, we'll worry about cost later, getting her better and home is the main goal right now.
She is going to PT here in a bit, not because she needs physical therapy but she needs to get outta bed and move around so she is going down there at 2:30 for a bit to get some exercise.
Thanks again and hope to be back later if I get a chance, probably not until she goes to sleep tonight.

Hugs & Luv,

Burke - 30425
Burke - 30425 2009-02-24 19:00:45 -0600 Report

You and your family are in my prayers. I too have gone through the horrific fears you have gone through and I know it is God who will watch over you all and see that your baby gets better.

datzme 2009-02-24 12:26:43 -0600 Report

Prayers go out to you and your family. I will keep your daughter in my thoughts. I can not imagine what you are going through right now. May the angels keep her safe through this fight. God bless.

rbergman 2009-02-24 10:40:28 -0600 Report

The MRI and CT scans are done and now we just wait, we were told we should have an answer today by preliminary readings of those tests, it has something to do with the adrenal gland being affected. We were told we would have some answers and possibly a treatment plan early this afternoon. They did not detect any tumors (huge relief) and were told they do not suspect any form of cancer being the issue. Laura is eating now and relieved that the tests are over (for now). I haven't had a smoke all morning but I'm heading that way now, I need my sanity back and that seems to help for now. I really appreciate you all, I know I've said that over and over but it's true, I know I can turn here when I have nobody else to turn to. Will update as we find out more, I'm relieved and scared that they have an idea of whats going on, answers are nice but not knowing the answer still scares me.

DiabetesDiva 2009-02-24 10:59:05 -0600 Report

You poor thing! I can't imagine what it's like to go thru this. My belief in God is shaky, but I do believe in the power of prayer, knowing that I am send you love and surrounding your family with healing light. Can you make that smoke a joint?

GabbyPA 2009-02-24 08:46:19 -0600 Report

You and your family are in my thoughts and prayers. I will share it with some other prayer chains as well.
I know that thru it all, keep the heart of your child close to you. Encourage her and yes, you have to be strong for her. She will amaze you with the things she will say. I know it's hard, but the fear you have becomes hers...let her inner bravery come out. She just may teach you a thing or two.
Thank you for keeping us posted, and though we are far away, our thoughts are just as near to you as if we were there.
Love and lots of ((hugs))

rbergman 2009-02-24 08:04:21 -0600 Report

I only have a few minutes to spare they are getting ready to take Laura for the MRI and CT scans now, at least they have an open MRI machine so hoping she won't get too scared in there, all the blood samples were just taken, her BG was 248 this morning, stress has a lot to do with that I'm sure, mine was over 300 go figure.
I appreciate you all so much I'm glad I have you to turn to with not having any family nearby this is as close at it gets for me, will let you know more when we know more.

luv to you all

2009-02-24 06:49:45 -0600 Report

Robin, please know that my thoughts are with you and Dean and Laura. I'm not much of a praying gal but I'm thinking I might start with this news. I'll email you off of here.

Love and Hugs

Debe Pendice
Debe Pendice 2009-02-24 06:33:43 -0600 Report

You sre in my thoughts and prayers daily. I can't imagine what is going through your mind at this site. I am here for you and will always have an ear or shoulder if you need one. Keep us updated, I am concerned. I hope you are taking care of yourself also. You need to keep up your own strength to take care of the rest. Keep in touch…Debe

2009-02-24 06:04:32 -0600 Report

Oh my dear friend… I am so sorry I waited a day to log back on DC to read about Laura. I had no idea she was in the hospital. I can only imagine what you and Dean are going through, not to mention the fact that Wade your son is also sick. I think of you daily anyway, but I will keep Laura in my prayers as always. I pray the doctors will find a solution to this problem as time permits. At least with her being in the hospital maybe they will get some good results much faster! Please email me and keep me updated. I have been with my family after my dad's surgery last Monday and am heading back there this morning. My mother has her hands full. I will try to get on DC for updates but please let me know if I can do anything. All my love, hugs and prayers! Ang

dyanne 2009-02-24 00:13:02 -0600 Report

Hi I am so sorry for what u are all going through I can understand your fear and frustration. I have been there I wont go into it now but believe me I do understand . You want answers and you want and need them now !!! The time seems to go by so slowly and your heart is breaking for your little girl. I do believe in God so please dont give up up hope. Ask as many questions that u can think of and dont let them tell u things u dont understand. I will pray for Laura and just keep her as calm as possible the more she can sleep through it the better. Now you need to take care of yourself… you need to eat and get some rest. I know its easier said then done but you have to try for your son also. I hope and pray this turns out to be something that can be corrected with medication. It doesnt mean she wont have a normal life try not to overwhelm yourself with what you dont know yet. Things have a way of working out some how just keep praying and know that you are doing all you can for your daughter even though Iam sure you wish you could change places with her and take away all her pain and fear. This too shall pass and lets pray it will not be that serious. My thoughts and prayers are with you all and I promise I will pray to the Blessed Mother for you who better than a mother herself who knows what it is like for her child to suffer. Be well and please try to get some rest !!!!! Thats an order !!!!!
All my prays for quick answers dyanne

Avera 2009-02-23 22:10:38 -0600 Report

You surely have my prayers and I will ask anyone else I can to pray for her also. This might not be the time to mention this, but, please take care of yourself also, so you can be strong for her. I will also pray for both you and your husband

Thanks for letting us know. Hang in there!

rbergman 2009-02-23 22:57:29 -0600 Report

Thanks Avera, Its about 10pm and they promised they wouldn't be back in to check on her (wake her with that dang overhead light) until about midnight. They have offered us a room at a nearby hotel or some such but I told them there was no way I was leaving her by herself overnight and just to bring an extra chair in..they didn't argue so I'm going to try and get some rest myself, exhausted emotionally.

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