How to Deal with Life on Life's Terms

I am a mother of a beautiful 4 year old boy who was diagnosed in January of this year with ALD. He didn't show any signs but my dad has AMN, my male cousin has AMN, my female cousin is a carrier and her son who is 6 has ALD. Once I decided to get tested and found out I was a carrier, I knew there was no way my little boy had ALD. He tested positive soon after and we were at Kennedy Krieger within 3 months (March,2008). He's on the Lorenzo's oil (41ml) and Walnut oil (10 ml) daily. He only is able to eat 18 grams of fat a day and no more than 1600 calories. The diet is not as bad as I thought it would be because he is a pretty healthy eater. He is asymptomatic and I feel extremely blessed. Sometimes I feel like I should have known. I recently got things taken care of so I will not be able to have any more children. I wonder daily what the future holds and how long we have. I'm trying to live in today but it is difficult. I read the stories online of all of these parents who had healthy 4 year old boys one minute and then within months and years they are vegetables. I pray for those parents and families. I want to do something to help and to find a cure but I don't even know where to start. I'm certainly glad that I can come on here and vent and relate my difficulties to others. My female cousin and I have talked about how we felt the day we found out that our boys had ALD. We knew right then that our lives had changed and would never go back to the way they were. I'm sure there is a reason for all of this but I have a hard time finding it. I'm taking it a day at a time and trying not to think too hard about it. When I feel sador angry about it I feel guilty because he's the one taking the medicine and having to be on a diet for the rest of his life. He's the happiest little four year old I've ever seen! It's not bothering him. He asks me all the time "Does this have too much fat?" or "Look at the label mommy. What does it say?" when shopping at the grocery store. He's so intuitive about all of it. I'm more than proud of him.

By Patience
Posted August 18, 2008 at 2:36 pm

Hi Kate -

I just wanted to give you hope for your son's future.

My twenty-five year old son was diagnosed with ALD and Addison's at the age of nine.

He works full time, plays men's soccer (premiere league) and shows no signs of ALD or AMN.

We don't know what the future holds, but we do know who holds the future.

By KateNDalton
Posted August 18, 2008 at 4:28 pm

Thank you so much for your reply. It's great to read your words and know that there is hope. I see so much of the bad things that it's hard not to focus on it. And he really plays soccer? That's fantastic! My son is "in a bubble" and I'm scared half to death of his getting hurt in sports (or anywhere else for that matter). It's so hard for me to not worry about every little thing he does. I am so happy for your son. That truly made my day! thank you so much!

By WeLoveEvan
Posted August 25, 2008 at 2:49 am

Would love to talk to you. Do you know that BMT is a great option should your son start to show progress? I think being aware of your future options, just like finally getting testing to see if you are a carrier, is the best way to make sure

By Emcee70
Posted August 25, 2008 at 4:02 pm

My son, Andy, 5, was diagnosed with ALD at 5 months old. He's been in the Lorenzo's Oil study since he was 19 months old. He just had his study evaluation in July and had another perfectly clear MRI. Besides his Addison's Disease, he's a healthy, happy boy. He starts kindergarten in 2 days. He was in a special preschool before; I hope the school system is supportive where we live. He does have some developmental delays, speech and social interaction issues.

It's hard knowing your child is "sick," even though he's healthy now. I went through major control issues when we first started him in the study. I thought that if I could control everything that goes into his mouth, that I could control whether he lives or dies. That's not true, as I could do everything right and he could still get sick. Or it could be that he just gets the adult AMN anyway. I had to just jump off the high dive and go into the waters of trusting my higher power and give up control so I can enjoy my little ray of sunshine for what joy he brings to us in the here and now. It took a long time to get here!

By KateNDalton
Posted August 25, 2008 at 4:34 pm

I can see it taking me quite a few years to jump in and trust my Higher Power. I know he won't give me anything more than I can handle but the thought of losing Dalton is unfathomable. He had a fever last night and I automatically start tripling his medicine, calling Riley Hospital in Indy and panicking! He hadn't had all 18 grams of fat for the day so I stopped and got him some french fries from McDonald's to try and get in all of his fat grams for the day. Then I feel guilty for giving him french fries when his little tummy isn't used to it at all. He was fine by this morning and kept all of his medicines down last night. One minute I'm fine and then he can get a little fever and I'm terrified and I know he sees it all over my face. I have to start trusting my HP more or this is only going to get worse. It is strange seeing how healthy they look but deep down knowing that they are not. I HAVE to stay in TODAY but it is so difficult to do at times. Thank you for posting. 5 and starting kindergarten! One more year and Dalton will be there. Excited and terrified! ...Better keep my thoughts in today or the panic will set in:)

By Emcee70
Posted August 26, 2008 at 1:27 pm

I understand the terror. Andy's been hospitalized for stomach flu a couple of times, for asthma once, just to get his hydrocortisone in him by IV. It's good that you have a game plan for when Dalton gets sick. It keeps you from feeling powerless over the situation. Andy has "Splurge Night" every month, where he gets pizza or McDonald's or something else he can't usually have, just so he feels like a "normal" kid. Fat every once in a while is okay. He won't get sick from it. I think you've got a good handle on what you can handle and what you can't. It gets easier with time.

Be good to yourself in the meantime. Remember the oxygen mask lesson? Put on your oxygen mask first, then help your loved ones with theirs. I get the feeling you've put so much effort into your child, that even thinking about yourself makes you feel guilty. (Been there, too!) Email me when you need to vent: caldwellmargaret@hotmail.com. I'll listen. For free, even! :)

By KateNDalton
Posted August 28, 2008 at 8:37 am

The oxygen mask lesson is not something that I've ever thought of. And that guilty feeling if I do anything for myself is so true. Thank you so much for mentioning it because that's exactly how I feel.

Dalton is too scared to eat anything with fat in it (my fault). He's always asking me how much fat is the food he's eating. He worries about it constantly. If we go by a McDonald's he tells me I can't go there because of all the fat. He is worried about my eating fat too. He doesn't eat much food and I have a hard time getting him to his 18 grams of fat per day. He loves blueberries and watermelon and wants to eat it all the time. He loves salad so I try to sneak olive oil in it to get him his fat. He worries me sometimes that he doesn't eat very much but maybe it's just a stage he's going through. I, of course, wonder if its the ALD but I'm not going to take that thought and run wild with it (yet).

Have you had to ever give Andy a hydrocortisone shot in his leg? That terrifies me.

By Emcee70
Posted August 31, 2008 at 5:26 pm

We were specifically told by our endocrinologist that if Andy goes into adrenal crisis, that we are to call 911; he doesn't want us to try to give him a shot that's difficult to do, and the cortisone we'd have to carry around has a short shelf life.

At school this past week, we had to create an action plan for Andy because he has a life-threatening illness. That was different, but I'm SO glad we did. The possibility of his going into crisis is so slim, unless he's sick, and if he's too sick to keep his meds down, then he's definitely too sick to be at school. And, actually, he'd probably be hospitalized anyway. Funny, the thought of going to the emergency room doesn't frighten me anymore...

It sounds like maybe Dalton is going through a stage. All of you have had to make life-changing adjustments. This may be his way of trying to gain some control over his situation. It's good that he's getting the diet pattern down early. Then hopefully, he'll stick with it as he gets older. Andy, though, has already started to rebel and has decided that he likes fatty food. I don't know what to do, except to keep denying him all of what he wants. He, too, is trying to control his situation. Poor little guys. They don't deserve this disease. No one does.

How are you holding up?

By KateNDalton
Posted September 2, 2008 at 9:09 am

That's a relief to hear that I don't have to give him the shot. I'm afraid that I'd only make matters worse. I think it would take less time for me to get him to a hospital and have the experts give him the shot than my trying to fiddle with it.

Do you refrigerate your oil? My cousin's son has ALD as well and they don't refrigerate it. They also give him all of his oil once a day in one full dose. I give Dalton half twice a day. Just curious...

I'm holding up ok. Dalton fell over the weekend and hit his head on a toy that was on the floor. I made sure he was alright but it scared me so bad that I had to leave the room and burst into tears. There are times when I think, ok I've got this licked and I am perfectly fine and then he goes and hits his head on something and I fall to pieces.

How are you holding up?

By atriskto
Posted September 2, 2008 at 9:28 am

Kate-

I'm in the AMN study @ KKI, the bottles specifically say to Not refrigerate. I'm curious, have you looked at any other options for your son? Any different kinds of treatment?

By Emcee70
Posted September 4, 2008 at 9:31 pm

There aren't a lot of other options out there. There's always the possibility of a bone marrow transplant. We've decided that we would only consider one for Andy if he becomes symptomatic. I had a friend who opted for that for her son, before he showed any symptoms, and she lost him from the procedure itself, before they got to the transplant stage. (And she didn't know what to do with herself afterward; her whole identity was tied up in being caregiver for her son.)

There's also the naturopathic route to take - mustard oil and supplements. It hasn't been proven to work through studies like Lorenzo's Oil has. My sister has her son on the mustard oil and he's doing okay. He will be 13 in November, and she's had him on it for years now.

I'm holding up okay. Today Andy had an incident at school. He was not wanting to go in after recess, then ended up peeing on a tree in the playground. He had a nice little chat with the assistant principal, who told him that if anything similar happens again, he'd lose recess. I talked with the assistant principal, who wrote down the name and number of Andy's preschool teacher, whom he'd had for 3 years, to see what things she did that worked with him. Oy! Life is never boring with him around.

Lately, I've been trying to figure out what are ALD characteristics, and what is Andy. I found an interesting article written by the Kennedy Krieger team in regards to cognitive function. It found that pre-symptomatic boys in the study scored normally on the evaluations, whereas symptomatic boys scored significantly lower. So, I guess that the above incident was Andy acting out for being at a new school with new rules, etc. It's no less frustrating, however...

I understand your crying at the drop of a hat. You get so worked up about your son's health that anything can set off tears. For the longest time, our older son said that Andy was the lucky one because he got all the attention. So it's the whole family who's affected. It's "normal" to be going through this. Unfortunate, but totally understandable. It just takes time. AND BE GOOD TO YOURSELF!!!!! You're the only you your family's got!

By KateNDalton
Posted September 5, 2008 at 9:04 am

Sounds to me like Andy is ALL boy! Ahhh the urge to pee on a tree! :) Only a healthy boy would think to do that! I got such a kick out of that. Thank you for sharing. Little boys are so much fun (even when they do the silliest things). What a blessing that he is healthy enough to cause a little mischief! This will be a great story for you to tell him when he gets older (one of those that you can tell his girlfriend when you first meet her). I get so frustrated with Dalton at times because he won't listen or he doesn't act the way I want him too but then I have to remind myself how fortunate I am that he is alive and stubborn like his mom! I have to remind myself often...

I'm going to see a psychiatrist this morning. I've been on anti-depressants for many years but now I think I need a little something extra. Deep down I really know that no pill can "fix" the regret and hurt I feel for passing this disease on to my son. I'm still going to give it a shot though. Sometimes I think I'm trying to keep overloaded 24/7 so I don't have to stop and think about what's really going on. This site has helped a lot because I can hear your stories and see how all of you cope. So many have it worse than I do and I have a bad habit of wanting to play the victim and thinking I'm the only one suffering which is a complete lie. Until I can get over the "poor me" phase, I won't be able to grow and be of help to my son. Hopefully admitting it now will help me to grow out of it. Happy Friday and God Bless all of You!

By jolocny
Posted September 6, 2008 at 11:21 am

Hey, easy on you! I know what you mean that you have to admit to yourself what you are feeling ... I've had to do that, too. Altho being stubborn can be a real motivator, huh?! I have to remind myself what a great friend said to me one day, "don't let your stubbornness make you stupid". OUCH! I'm forever grateful to him for that wake-up call! I hear what you're saying about being "on" 24/7, feeling all the emotions - knowing darn well what they are and still ignoring them - until you can step back and deal them. Sounds like you're taking control and responsibility for you in this new level. Kuddos, kiddo! Keep up the good work ... one of us may need to hear how you got by one fine day!

By Marshallsmom
Posted September 23, 2008 at 11:29 am

Well i am dealing with just finding out my son has ald, the tests came back the other day that he is having adrenal problems, I am a nervous wreck all the time now, we are still waiting on the test that was sent to baltimore, but they are pretty certain that he has this. he goes to see an endocrynologist next week. I feel so helpless my little man will be 7 next month.

By KateNDalton
Posted September 24, 2008 at 8:51 am

I'm so glad that you are here Marshallsmom! Welcome. Does your son have any symptoms? My prayers are with you. There is hope with the Lorenzo's Oil and researchers are discovering more every day so don't give up hope. I remember the feelings of helplessness. I still get them at times but not near what they were at the beginning of this journey. Feel free to write to me at Kateness411@hotmail.com any time. Take it a day at a time and realize that miracles happen all the time (whether we recognize them or not:)

By marshallsaunt
Posted September 29, 2008 at 9:28 am

Just wanted to let those of you who are friends with Marshall'smom, that she and her family left this morning for Duke childrens hospital. She got a call last wenesday that her son Marshall's test came back and the confirmed Diagnoses is x linked ALD. She was given the news he had 3 to 5 years to live. The very next day a Dr from Duke called her with hope. Marshall has had no symptoms of the disease therefor they are going to do the bone marrow transplant. He is going to have a rough road ahead but the Dr is giving a 98% chance of halting the disease where it is. This was fantastic news for us. I've been reading so many of theses replies about the bone marrow transplant and fell so bad the families didnt catch the disease in time for hope. My thoughts and prayers go out to all of those going through this. I pray this Dr from Duke is truley right about this and Marshall will come home and live his life. We were so fortunate to find it before symptoms started. That is the key to a sucsseful transplant. I will try to keep updates on Marshall. I would like to ask that all pray for the family as they go through this trying time. Once they get started Marshall and his mom will be at Duke for about 4 months.

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