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This disease is really hard on parents, too. Here are some suggestions and ideas that might help you cope, and help your little one thrive. If you have suggestions or tips, please send them to me!
bulletTeach them how to take pills!
bulletOh, the stories I could tell. Many of the oral medications taste really bad (try them yourself). It will take patience, but if you can teach your little one to take pills, it will do wonders. We read and tried all the different ways we could find. None worked. So we created our own. Here's what worked for us.
bulletYour goal: to have them WANT to take the pill you NEED to give them. Gather something for every family member to swallow, like a vitamin, or your own medicine. Have everyone huddle around the dining room table. Say, "Medicine Time, will you help me?" One by one, have your child give every other family member their medicine. First, "Mommy's turn! Put it in my mouth, Logan." Everyone yell, "Don't chew, Mommy! Just swallow." A big drink, and then Mommy opens her mouth wide and says, "All gone!" Then, "Daddy's turn!" and repeat the drill for every family member. Save your "target child" for last. With any luck, your child will yell what ours did, "My turn!"
bulletGoal: get them to swallow the medicine without chewing. Face your child. Put pill on your RIGHT thumb. Insert your thumb into their LEFT cheek. Slide the pill along their cheek and behind their molars. At this point, they'll open their mouth. Finish by sliding the pill into the LEFT corner of their throat. Pull your thumb out. Give them a sippy cup of water. Logan now looks up and says, "All done!"
bulletGoal: reward them! Cheers! Hugs! Stickers work wonders, with one for his shirt and one on the calendar. He soon learned how many he needed in a day, and he wears the ones on his shirt like a badge of honor.
bulletGoal: to hide the taste of a nasty drug (like Prednisone) by coating it in candy. Take a Starburst candy out of the wrapper, and heat it in the microwave for 10 seconds. Pinch off just enough to smash into a pancake between your finger and thumb. Wrap the pancake around the drug so that it's completely encapsulated, but not much bigger then the original pill. Remember, they have little throats!
bulletBe your child's advocate
bulletNo one in the world cares as much about your child as you do. You need to look out for their best interests, since they are too small to do so. Learn about the disease. Ask lots of questions. Track their blood test results. Ask your doctor about results that aren't in the "normal" range, especially when there is a trend in the results. Get a copy of the LCH III protocol and read it. Ask your doctor about their knowledge of the disease, how many cases they've treated, and if they consult with other LCH experts.
bulletInvolve the siblings
bulletIt's easy to focus all your attention on your child with LCH. Their siblings will feel left out. Enlist their help! From giving med's to checking ports, our 4 year old (Erik) is eager to help with everything for his little brother. Erik also knows every component of blood, and their respective function. "Chemo Crusader" is a great book for kids to read. We got our copy from the Hem-Onc office.
bulletThis was placed in Logan's chest for his Vinblastine. Aside from our recent debacle, I'm an advocate of these ports. They make drawing blood and giving chemo and any other medicines so much easier with less (or no) pain.
bulletGlad "Press and Seal"
bulletIf you have a MediPort, the hospital will give you Emla cream to numb the skin. They also give you some very sticky bandages to put over the cream, which irritates the skin when pulled off. A tip from a nurse: We put the Emla cream on Logan's port, then put a square of Glad "Press and Seal" over the cream. It peels off very easy (Logan pulls it off himself) but stays on well enough so the Emla cream doesn't ooze out.
bullet"Magic Foam"
bulletAfter your MediPort has been accessed, the nurse will tape it to your chest to keep it in place. The worst part for Logan has always been when they removed the tape. It really hurts the skin! One of our nurses showed us a trick to take the tape off with no pain. You know the cans of foam they hang on the wall in your hospital room... the ones to sanitize your hands... If you foam up the edges of the tape, and then let it sit for maybe 5 minutes, the tape will fall right off. At the very least, it will loosen the adhesive and you'll be able to rub the tape off with your finger-tip. We told Logan that we were turning his port into an ice cream sundae and the foam was the whip cream. We'd lay him on his back, foam up the tape on his chest, and then distract him for a few minutes. A year ago he would scream, yell, and cry at the mere thought of having his tape removed. Yesterday at clinic he didn't even notice.
bulletGive them choices
bulletWith all that's done to them, your child will quickly feel like he's just taking orders. Give him choices, even simple ones. "Do you want a Clifford band-aid, or a Scooby?" Think for a minute, and you can give him simple choices for most anything. It makes a big difference.
bulletDon't treat them like a "sick kid"
bulletTough to do sometimes, but if you treat them like a "sick kid," they'll start believing and behaving like a "sick kid."
bulletNetwork with other parents who face LCH
bulletThere's no easy way to say this. Unless someone has faced the possible death of their own child to a disease like this, they cannot understand all the thoughts that run through your head and all the emotions you feel. Seek out other parents that face LCH. Teach them and learn from them.
bulletFocus on the positive
bulletEasy to say, very hard to do at times. As you see on this website, I have a list of successes we've experienced. It helps to review these and remember that we are making progress. Each day we are one step closer to "No Active Disease." Donna and I use the phrase, "It's just a road block." When we use this phrase, bad news or a set back is no longer insurmountable. It's just a challenge for us to find a solution.
bulletContribute to the cause
bulletIt's the parents that will push this along to critical mass and a final cure. Remember, this is an "orphan disease" with no government funding. Many doctor's aren't aware of this disease, and have never experienced it in their practice. Whether you raise funds, help other parents, work for a doctor researching LCH, educate the public, or get on "Oprah" to spread the word, please find a way to contribute to the cause. It will help your child, it will help other children, and it will empower you.
bulletLearn about the disease
bulletA lot of information is out there. It really helps to learn about the disease, so you can make informed decisions and understand what's going on.
bulletFind your role
bulletMy role is the information gatherer. I have blood tests graphed, medical records on Flash disk with me at all times, websites bookmarked, etc. Donna is the spiritual leader and keeps us focused on the positive. She is also an expert at sneaking great nutrition into all of us, especially finicky 2 year olds, We are both research and case history readers. Donna has the photographic memory and can remember every study and treatment protocol. We are both still searching for our long term career roles as they relate to this disease. I know it will have a big impact on the next career we each choose.
bulletLikely a lifelong disease
bulletJeff Toughill, President of the Histiocytosis Association of America (HAA) said it best. "Our daughter has been disease-free for nearly 20 years. I'm still waiting to exhale. I don't think I ever will." Even after we each get our child to "No Active Disease," we need to be vigilant in watching for recurrence. Learn the symptoms and watch for them! Stay up-to-date on the disease.

Have you just been diagnosed?

Right now is your worst time. You have lots of questions, lots of fears, and a whole lot of unknowns. It's nice to talk to someone that "gets it." Find an LCH family on the web that has a similar diagnosis to yours and contact them. You can contact us, scan through the other family links, or check the Histiocytosis Association of America website.

You will likely soon be asked to decide whether or not you want your child "on protocol" or not. At least, you SHOULD be asked. Unfortunately, many doctors just gloss over this, or make the decision for you. Clinical Trials are absolutely critical for a rare disease like Histiocytosis. Here's an article by Dr. Whitlock to give you a much better understanding.

I will now climb on my soapbox and give you a parent's perspective.

Unfortunately, we didn't understand the importance of protocols until AFTER Logan started treatment. Because we were uninformed, we elected NOT to put Logan on protocol, and we've regretted it ever since. No one learns from our children unless they are on protocol. Since we elected NOT to go on protocol, and then started treatment, Logan can NEVER be on protocol, meaning his information will NOT be part of the LCH III study results. One of the big reasons we moved to Dr. McClain and Texas Children's Hospital was because Dr. McClain sees many LCH patients, around 40 new cases a year. (Many Hem-Onc don't see any in a whole career) Dr. McClain is on the board for creating the next LCH protocols. By having him treat Logan directly, we thought some of the experience he gained from treating Logan could go into the protocols for future children.

After more investigation, we also found that most hospitals don't put their LCH kids on protocol because its "a bunch of extra paperwork for a rare disease," and it takes 3-6 months and a review board. Hospitals that don't see a lot of LCH don't go through the process. Logan (and your child) are suffering because the doctors of the past were too busy or too lazy to put their kids on protocol. Do you want them treating your child? It seems that hospitals and treatments are often about the bottom line. And adding a whole level of extra paperwork and another review board for a rare disease doesn't add to the bottom line.

If you haven't noticed, it's something we feel very strongly about. Here's another reason why. Protocols are cancelled because too few doctor's sign their kids up for the studies. As an example, in 1998 the Histiocyte Society initiated a prospective international study of LCH-CNS (central nervous system/brain involvement), something that Logan and many other children face because of their skull tumors. After FOUR YEARS the study protocol was closed because they couldn't get enough children signed up. I think they were only trying to get 27 kids, and they were still short 4 children after 4 YEARS! What would we have learned from that study 8 YEARS ago, and how would my son's life be different? How would your child's life be different? We'll never know, and that's a very sad commentary on how our medical system is currently organized. So LCH CNS has barely been studied. That's just wrong. And who's penalized? My child. Your child. My family. Your family. And all the other LCH children and their families.

Please do something we were not in a position to do. Please be informed. Please be educated. And please have a good discussion with your doctor regarding the pro's and con's of protocol. If we were able to do it over, we would have INSISTED on protocol. If the current hospital didn't offer it, we would have consulted with a hospital that did, or we would have moved to a larger hospital that did. Here is a list of those hospitals. If your hospital isn't on it, I would have a frank discussion with your doctor about consulting or referring your child. Our previous Children's Hospital isn't on this list. Our current hospital is.

Strength to your family and your child. Wisdom for your doctors. If we can help in any way, please contact us.

PS: If you or your child is having a biopsy of a suspected histiocytosis site, please Please PLEASE contact me to get a portion of that tissue donated to Dr. McClain for his histiocytosis research here at Texas Children's Hospital. This is one thing that could really help in the battle against histiocytosis.

There's no cost involved, and the tissue would normally just be thrown away.


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This site was last updated 01/26/10