Emotional Distress

Q. I’d like to ask about something very sensitive. Since the possible diagnosis of FOD has been made, I’ve done a lot of research and reading. I am constantly worried that James will get ill and die. I am always on edge. I do “trial runs” in my imagination on what to do if he is ill or vomiting. Is this a ‘natural response’ that comes with the diagnosis, or am I being paranoid? I assume that this will get better with time. How can I relax? I’m afraid to send him to daycare or leave his side. I’m very sorry if this makes anyone sad. I debated for 3 days on whether or not to write, but I’m not sure who would understand any better than you folks.

Denise 

Undiagnosed FOD mom

Denise, you are not paranoid! When we got Jamie’s diagnosis I was frantic. I barely slept and watched her sleep constantly always frightened she would slip away on me. Daycare is still difficult but I am close by and can be there in 5 minutes if need be and am comfortable with the knowledge that the daycare knows to call me if anything seems remotely wrong. It does get better though. Hang in there.

Velda 

MCAD mom

Let me say that you are normal to worry so about your child. We worry when our children are healthy. I used to check my healthy children during the night all the time. It seemed I had an internal time clock and got up every few hours just to watch them breathe. Then along came Wendy (LCHAD). We didn’t even know she had anything wrong with her until she was 2½, but still I checked on her. Then when we realized something was wrong.yikes! I watched her breathe all the time. I don’t know how I am sane today (or am I?). At times I worried about her death. I still do, but know that I can do only so much. She’s 22 now and is never too surprised to wake up in the middle of the night to see me looking down on her. It’s just part of our life. It’ll be part of yours and become natural to worry and to worry about worrying. I worry about her death the same today that I always have. It hasn’t changed, but I have accepted it. I worry about mine too, because I just can’t leave her. I’m her only parent now. However, I try to focus on happy times, which are many, thank goodness.

I say it for all, when I say this group has been a Godsend. We understand each other as no one else can. Even our families and close friends can’t feel what we feel, and thank goodness for that, as we wouldn’t want them to have our exact feelings. But it is nice to know that when we ask the questions we do and talk about the things we do on this network, that we are not judged, but understood. Take care, and remember we are all here for you.

Mary 

Adult LCHAD mom

I really believe that the emotional distress of an FOD really never leaves us. My daughter, Olivia, just turned 5 and has LCHAD. I always seem to worry about something with her. Is her blood sugar okay? Is she okay with the amount of fat (she only gets 7 to 8 grams per day) she ate for the day? Is she coming down with a virus? Did she get exposed to a virus? The list just goes on and on. I thought I might worry less as she got older but I worry just as much. I think it is because most of us almost lost are child and know what emotions we went through at the time of the episode and we never want to go through that again.

I have found that I have learned something with each illness that she has had. I now know when to go to hospital for the IV and don’t second-guess myself any longer. At one time it was should we go or should we hold out and see what happens? I don’t do that any longer. I have found out that each time I have made the decision to go to the hospital it has been the right one. So hang in there. We all have the similar stresses. Some days seem easy and some days don’t. But we just count are blessing that we still have our child and even with the added stress we would not trade them for anything! They are a true blessing and so are we for having them.

Melissa 

LCHAD mom

I only wish you didn’t have to debate for 3 days to write about this. I think everyone of us knows the emotional distress and toll that our children’s illnesses bring. With Johnny being 13, I will say it gets easier or maybe it’s just that we are more used to dealing with the situations that come up. Also, children do get sick less as they get older and the germs don’t seem to spread as easily.

When Johnny was first diagnosed, I tried to read everything I could although there wasn’t much out there and I didn’t find the support group until 3 years later. I think this support group and having friends and family nearby to share the stress are the best support as well as a supportive pediatrician. We rarely leave Johnny under anyone’s care, except for school, but only because we haven’t found anyone to take care of him. What we do is either family activities together or my husband and I get out by ourselves separately. That is what really saves my sanity, is being able to get out with a friend for a movie or shopping, even if it’s only once every few months. Having a cell phone has made a big difference. You can get out and be contacted any time.

We were once told by a doctor that we had had a miracle so don’t ever let our guard down because we may not get a second one. That is some of the best advice I’ve ever gotten because it made me be conscious of the fact that treatment is full time and is preventive. It becomes a habit over time so that it doesn’t feel like you are always on guard. Living this way kept Johnny out of the hospital from the time he was 2 until he was 12 so I guess it worked. Hopefully time, information and the support group will help you through some of the tough spots and remember, there are lots of us out here to ‘listen.’

Sue 

MCAD mom

I too worry about Henry, especially at this time of year when there are so many stomach viruses going around. He goes to preschool and stays with friends, etc but I have a cell phone and pager so I am always available. I tell everyone to call 911 or take him to TX Children’s Hospital if anything happens. We live five miles from the hospital. Henry has a medic alert bracelet and they have record of him at the hospital. These things make me feel better but I am sometimes still overwhelmed with the sense of possible emergency at any time. Our pediatrician is also very supportive. I think that all mothers worry but we all have some very good reasons to worry.

Betsy 

Unclassified FOD mom

Please don’t worry about sharing your feelings with this group. As you can see by the responses you’ve gotten, that’s what we’re here for. We understand the stress and worry that these disorders cause better than anyone else.

In my own experience, the fear and worry were worse at first because you’ve just found out about it and read all of this scary info on it and seen all the “worst case scenarios.” It’s fresh in your mind and you need some time to assimilate the info. I was so overwhelmed at first. I’m a pretty paranoid mom to start with so this just really gave me some ammunition for my fears. The more time passed and the more milestones Ethan passed (like his first ear infection which did not lead to a hospital stay!!!) I’ve relaxed quite a bit. It’s not that I don’t worry anymore, but it’s not all consuming. You’ll be amazed at what you get used to! I don’t leave Ethan in the nursery at church anymore because every time we did he got sick. It just wasn’t worth the risk to me. Otherwise, his grandmothers love to baby sit and have gotten used to his special needs (having a cell phone makes leaving him in their care a lot easier for me!!) My husband and I have reached a stage that I can best describe as cautious optimism. We still worry, but not constantly, and we don’t let it rob our joy of having such wonderful sons as Ethan and Eddie. We both think we’ll breathe even easier when he gets to be 4 or 5. Something about that age seems less fragile then now. I’m sure once James is stabilized and diagnosed and into a routine, you’ll breathe easier.

I think it’s OK to worry enough to have a plan of action for what might occur, but once you’ve got the plan formulated, try not to dwell. Give yourself some time to recover from the bomb that’s been dropped into your life. Take all that emotional energy and let it express itself in love to James, but don’t be too hard on yourself. My sister told me something that really helped me. She said, “You need to give yourself the opportunity to grieve the loss of a healthy child.” We were blessed not to lose our precious baby, but nevertheless, our lives will never be the same. Don’t expect to be able to shake that off too easily. Soon enough you’ll adjust and take it more in stride. If you get the packet of info from Deb, there’s a story in it called “Welcome to Holland” that really helped me a lot. This isn’t what you expected but it’s not so bad. Try not to let this rob you of the joy that you still have James ~ that’s no small thing. The other thing that helps is to talk to other FOD parents. “Is this normal? Has your child ever had this happen?” It’s been so helpful to me to find out that there are other people out there who are functioning, even enjoying life with an FOD.

I guess what I’m trying to say in my overly wordy way is, it’s normal to be very worried now, it will get better with time, and we’re here for you if you need to talk.

Mary Beth and Ed 

MCAD parents

You’re not being paranoid you’re being a parent. I’m extremely nearsighted, and I wore my glasses to bed at night for months because I wanted to be able to look over and see Katie if she made any sound or if I woke (assuming I ever got to sleep).

Gail 

MCAD mom

I am glad to see some humor flow through. We all need that too! For six months I slept on the floor by Rachel’s crib so I could hear the ventilator alarm, when in fact it was so loud my neighbors could hear it. My back has never been the same!

Lisa 

VLCAD mom

First, Denise, never feel like you can’t share with us WHATEVER it is that is on your mind. That is the only purpose of a support group! I think that thinking through possible scenarios in your mind and how best to handle them is a great idea. Then, once you come up with a good way to handle a possible crisis, then maybe you can relax knowing that if an emergency arrived you are prepared. I did this after my son was diagnosed and it helped me feel safer and more comfortable and more in control. Some things I did were:

• Xerox 20 copies of your PROTOCOL letter and give one to everybody! Keep one in all your glove compartments, diaper bags, etc. Reduce one on your computer for your partner’s wallet. Even my local doctor carries one in his wallet! This was in case he gets a 3:00 am phone call from me, he can reach into his wallet and know what to tell the ER (I think it makes him feel more secure too!)

• Have your local doctor educate everyone in his/her practice about your child. In case he/she is unreachable, the covering doctor needs to have background info. Even the nurses and receptionist in my local doctor’s office know that if I call I am to be given no grief and seen whenever I want to be seen. They are wonderful and know that Brett can quickly go downhill from even a little cold so they try very hard to accommodate me. However, they would not know this if the doctor didn’t speak to them and tell them Brett’s story.

• Your local doctor needs to speak with the ER staff of the hospital he/she is affiliated with. They can keep your child’s info on record.

• Go online to Medic Alert (link on FOD site under Sites of Interest) and order bracelet for your child. They have the info from Brett’s protocol letter on file and can fax it to any ER if needed. I also feel that when that bracelet is on, the ER admitting nurse takes me more seriously. The back of the bracelet says “Rare metabolic disorder. Subject to CHF and Coma” (CHF means congestive heart failure). It seems a little dramatic, but gets people moving!

• Pack an over night bag and keep it in the back of your closet. You might never need it, but if you do need to sleep over in the ER, you will be grateful you planned ahead! Have a copy of insurance card in it as well as money, change, phone numbers, toys, snacks for you, etc.

This sounds simplistic, but try to relax and enjoy your child. You will look back 15 years while sitting at the high school stadium watching him/her hit a grand slam home run and regret that you worried his/her childhood away. They grow up in a wink of an eye. Don’t let this disorder rob you of these precious years.

Gina 

VLCAD mom

Thank you so much to everyone who’s responded and to those who deal with this everyday. You have done so much to help me. I feel like I can face this now. I’ve printed out your responses for those days that are difficult. I hope they are few and far between. I can’t express in words how helpful it is to know all of you are out there. I’ve been praying for answers and a diagnosis for 4½ years, now I’ll have to take what comes. Bless you all.

Denise 

Undiagnosed FOD mom