The day after Kyle came home from the hospital after a large dose of HC, he felt better than ever. I think it was the first time he actually realized that these medications truly are affecting how he feels. I was hoping I could build upon this. I have to hound and hassle him daily for at least half an hour before he will take his meds. He hates taking htem and will just walk away in the hopes that I will forget so he doesn't have to take them. I hate fighting my son every day over this. It just adds to a sort of rocky relationship we already have. I keep telling him Im not trying to nag but jsut care about him and want him well. Anyways anyone got any ideas on how I can get my 12-year-old to understand the seriousness of this? I've talked and explained til I am blue in the face. He just doesn't "get it" or understand. I am going to have to resort to other methods. I need an actual motivational speaker to come to my house and explain it to him I guess. LOL BUt seriously. I think he must truly think that I am overdramatizing theese things. If he doesnt feel well or has stomach pains, I will ask him did you take the meds and he will automatically start sighing and start in with an attitude. i know he is tired of hearing bout it and I understand, but what am I to do? In my personal opinion, there should be a class or something I can take my son to so he can learn about this stuff from someone else maybe so he will take it to heart and not think it is his nagging Mom trying to be a Mom. What can i do to help my son? I am becoming so disheartened with my ability to assist my son in every aspect. I feel like I am failing him.
I wish all this would just go away. Another thing I am down is that this school year is almost over, he has recieved almost straight Fs this year in school. I thought they were going to fail him but instead they are just kicking him out of Advanced classes. He has been in advanced classes for 3 or 4 years and has made straight As....STraight As.....until this year and it all went caput. I swear this cant be his fault. I hve brought this up to his doctor but he doesn't give me any closure on it. I swear his poor grades has something to with this whole mess. You just dont go from straight As to straight Fs. His teachers say he wont stay ont ask, he cant stay focused and he is highly unorganized. Mostly he just don't do the work. He don't care anymore. Used to be he wanted to please the teachers, me, his dad, or himself, now he could care less. Its a new school so the teachers dont know he is normally a good student from experience, only from me telling them this. They punish him for absences taht are beyond his control and he sits in detention and is told no field trips from numerous abscences which are excused. I am so upset with this crappy school. Hes in 6th grade and luckilyu they didnt fail him. I want to fix this problem so bad before next school year starts. Now, I'm not sad because he makes bad grades, I'm sad because I know soemthing is going on to cause him to get the bad grades. No one really thinks these issues are related but my Mother's instinct knows that they are, but there is no solution I can foresee. I miss my old Kyle. I'm heartbroken about this whole mess and I feel so helpless. I wish I could take it away from him. I wish there were a cure for this. Is there any research on working towards that?
Once again and as always i am sorry to ramble and sorry I can't type worth a crap either. I am just in need of somewhere to vent and someone to talk to and this forum is my outlet. I try to always remember to say thanks.
Oh one mroe thing I ws thinking of adding a pic of my most handsome son to the photo place so you all can marvel at his awesomeness. He is such a dollbaby. I swear people, your heart is gonna melt when you see his sweet smile. anyways i can't seem to figure out how and wanna ask...Is the pics only seen by members or can any old person go and look. just wondering.
I am most gracious I promise and it comes from the heart for all you guys do on this forum. it helps me cope and gives me that extra little bit of reassurance and at times i think helps keep me sane. I cannot begin to put myself in yall's shoes and fathom the struggles you guys go through, but I can tell ya it's no walk in the park watching my son go through this ordeal, which at times seems like a nightmare. He is so specail. He deserves so so much. I mean, I know all moms think their kids are wondrous, but Kyle truly is. Always highly intelligent, extremely funny, has a vocabulary that would knock your socks off, looks that could kill and I'm not exxagerating, and a kindness to his heart that would touch your soul. I could go on and on. he's my life, my only child and my reason for living. He has saved me and that's no lie and I only want to 'save' him but can't. Life is hard at times and I'm asking WHY WHY WHY. It is unfair. I wanna go hide under a rock right now and make this all disappear but then I wouldn't be arond to ask him if he has taken his meds this morning. ;)

HI,,,, I am really sorry you are having such a tough time...there is no aspect of this that is not difficult.....

first....Kyle will qualify for a 504 plan for school.....GET THIS IN PLACE!! My email is dmcc1446@yahoo.com. If you mail me I will send you the sites and info on this. W/ a plan in place the school has to acknowledge the disability and make accommodations. HAS TO.

Second....I strongly believe that all of you need and will benefit from counseling. Kyle needs his own person to talk to to help him deal w/ this. You are really on target w/ saying that there should be a class on this for kids.....They have them for diabetic kids right??! It is a great idea....problem is that there are not alot of kids w/ this.....but....something to think about....

Does your health plan have a mental health benefit on it? I think that you too could use help w/ a counselor to help you come to grips w/ this, and your grieving, which is normal, and how you can best help Kyle.

Does Kyle have any mail buddies....other kids his age bracket w/ Addisons...if not, let's work on finding him someone....

Will kyle read anything on addisons"? Wondering if you make copies of The Addison's Owners Manual', punch holes in it and put it in a binder for him.....don't make a big deal out of it, or even ask him to read it, just leave it in his room or somewhere he is likely to see it and can read it w/ out people seeing he is reading it....

Has he been in w/ his dr and had a talk? If he likes any of his drs or even a nurse, perhaps you could involve them, and see if they would meet w/Kyle w/out you in the room.
Maybe a support class w/ diabetic kids might not be a bad idea......he would see that other kids need to take meds to stay healthy too.....

Wish I could come up w/ more idea...but hope some of this might help.
Take care...
(PS...where do you live again??)

Diane

Marilyn, the photo page is seen by anyone who wishes to view it...it is not closed. I will be glad to put up some pics of Kyle.

Did he realize how serious his ER visit was? That IF he had not gone he might have gotten very ill indeed? I think he is probably just in denial but he has to come to grips with this situation because there is no cure. IT 's not going away so it is something that all of you will have to learn to accept. And if you feel counseling would help, if Kyle would go, then try that. Because it is a grieving process you are going through.

Also, go to the library there and see if you can find some books on chronic illnesses in children and learning how to get through this acceptance process. How the grieving process can be dealt with, etc...counseling with books if an actual counselor isn't possible.

Oh my Goodness! I feel so bad for you. As a Mom I can feel your anguish and I understand your need to make all of this go away. As Dianne said I think some counseling may be a good thing for Kyle. He needs to understand his illness needs to be monitored BY HIM and understand that his meds are necessary to keep him feeling good. AND he needs to stop being angry at you for all of this. It does sound like the poor guy is transferring all of his anger towards you. He is at that weird age when kids start questioning their parents advice and knowledge on everything! Check with the school and inquire about a social worker or counselor available for the students, that could help him out maybe. New school, bad grades, health problems, pre-teen issues, feeling different at school, and thinking your parents know nothing is probably confusing him so much. After 7 years of suffering with Addison's I finally saw a therapist and it helped me so much. Maybe you need to talk to someone too to help you with the guilt issues you are dealing with. Ask him if he could be responsible for taking his meds on his own? If you just put it in one of those daily pills things (and check it when he is not looking) do you think you could trust him to take it? Is there someone else in the house that could give him his meds instead of you, that might help his resistance towards you.
I wish we had all the answers, but I will pray for strength for you ^A^ .
Maureen

Dianne covered everything, plus in another post to you I mentioned a child around the same age that lives near us that you might be interested in. He is at a n awkward age, in general. I would also talk to his endo about whether or not his doses are affecting concentration as well. Hang in there you are doing a great job, Kyle will get through this.

I would focus on the type of replacement he is on. It lasts too long in his system & he may be getting too much. The fact that his system never gets a rest from the steroids has to be very hard on him, physically & mentally. Never having a low enough cortisol level could make him irratible & unable to consentrate.

Some people don't take prednisone because of the way it makes them feel. Prednisone is one of the longer lasting steroids.

I believe Kyle needs to be on Hydrocortisone, 3 times a day so his body can get a rest from the steroids at night.

Since the docs gave him 250mg, it is just one more reason to monitor what the doctors are giving Kyle. You do have a say in his treatment. He really needs your help as the doctors are doing him harm.

Wishing you & Kyle the best. Hope he gets some rest tonight.

Wanda

Just remembered something....I think HGH is produced at night so having pred would be affecting his bodies ability to produde growth hormone due to the fact that his levels are consistent. Another thing to think of.

Sue, Wanda and I have been saying this, too. I just wish the doctor would change him to HC...I believe the growth issue is due to the prednisolone and prednisone.

Kylesmom, I'm sorry for how you're feeling, my son has only been dealing with this for 5 months now, he's 8 years old, so far he's only had 2 breakdown episodes of crying, etc. Zac takes his meds in pill form, so we do have the weekly sorter with every day being a separate pull out container with 4 slots, we use 3 of the slots, morning, afternoon and bedtime. I leave it out - and will just say to him, don't forget to take your pills at the specific times and he's very good about it, he know's it his responsbility and if he doesnt' take them he could end up in the hospital and that's incentive enough for him, i'm sure over time we will encounter what you are going through. my suggestion would be to reach out to people for support, guidance counselor at school, another child with a chronic illness. not necessarily addisons but another child who has to take medicaiton on a daily basis. Another thing we tell Zac is that Addisions and Hypothyroid are part of who he is along with being funny, smart, etc. everyone has parts of them they dont' like so much. good luck and keep the faith!!

.....I know there is an age difference but do you think that Zac would e-mail or IM etc w/ Kyle???
Some kids are fine w/ that and some are shyer.....
Diane

I've got to be honest with you, Zac's not into email/IM, I don't know if he'd be any help, I will talk to him about it tonite, Zac's more into video games, and a couple of on line game websites, maybe if Kyle and Zac could connect in that way it would be a start. Marilyn, does Kyle do any games, like pokemon? harry potter, other than addisons, just looking for something they might have in common. I think Zac may be too young/immature for Kyle.

I know as a reasonable, nonhormonal adult there were times after I was first dx that I wanted to run and hide from the illness and all the meds etc... I can't imagine how difficult it must be for a teenager.
It will pass and he will get used to it eventually. I think we all have to go through a grieving process for what used to be when we have a big change up in life. Even good big changes can do it to us too. And when you don't have the mechanism for dealing with stress it just makes things all the much harder.
Take a deep breath, eat chocolate and keep on mushing through.

(grh) (grh)

Shelley

I am sitting here with tears streaming down my face.. I can relate too what your son feels, or at least what I think he might be feeling. I am trying too come too terms with this illness I have, whatever it may be..I am failing at this big time and I am 38 yrs old. I guess I just cannot figure out what went wrong, or why it went wrong..I have no advice for you, but I did want too send you a great big hug! As a parent myself I do know what you are feeling, so it breaks my heart... :wub: Maybe in time things will get better for him.

Thanks for the replies guys. Sorry haven';t been online int he last few days to tell ya so but sometimes life gets in the way. Busy week. I take each and every little bit of advice to heart and you guys are great about tips. I will try them all. I look forward tot he day I can get on here and say well, they finally did it, his meds are correct and he is feeling great.
Thanks for the luv guys and I'm sending it right back at ya (grh)