May 21, 2008,
V.J. asks from Fort Leavenworth, KS on May 19, 2008
Daughter with Leukemia Starting Kindergarten/504 Plans
My daughter was diagnosed with acute lymphoblastic leukemia in December 2006 when she was 3 ½ years old. She was in remission after one chemotherapy treatment, but the entire treatment plan is about 2 ¼ years. She is currently in the Maintenance phase and will complete her treatments in February 2009. She goes to Childeren’s Mercy one day a month to receive chemotherapy. The rest of her medications are taken orally at home. She is doing great and is very excited about starting kindergarten next year. We recently had her tested for late cognitive effects that can be caused by her medications. The psychologist reported that everything was fine. She did not go to preschool, but she is involved in other activities with her peers. She is a samart girl and is definitley ready for kindergarten! My main concern is that she also takes steroids for 5 days each month. While on steroids, she gets very hungry, emotional, and antsy. She has to constantly be doing something. Now that the weather is nice, I think that when she takes them next week she will do a lot better than during the winter months. We will have more options of things to do that will keep her from being bored and keep her from thinking about being hungry. I was just wondering if any of you had ever had a child that had to take steroids and if you had any tips to make it easier for her while at school. I will make sure that she eats a good breakfast and will pack a bigger lunch on those days. The school nurse also said that we could keep snacks for my daughter in her office, and she could go there if needed. However, I don't want my daughter to think she can just go to the nurse's office anytime she is hungry. I was also wondering if any of you who have had kids with cancer or other medical problems did 504 plans. I would appreciate any advice.
S.H. answers from St. Louis on May 20, 2008
My older son was diagnosed with a degenerative physical disease while in KG. What impressed me most was how the entire faculty worked as a team for him. From the front office to the cafeteria, they knew what he needed & all worked to provide it. Open & full communication was what started this process. Having a caring school staff is what carried it through.
With my younger son, he went through a severe round of allergies from KG through 3rd grade. The staff also worked with him, sometimes addressing issues before he was aware of them! It was also during this time period, that we were dealing with extreme issues with our older son. By keeping his teacher updated, we were able to minimize the effects of the turmoil at home. Our younger son was allowed the freedom to visit the school counselor whenever he felt a need to do so. Sometimes they just talked, sometimes they called me. It was this extra-special little time that helped him deal with the pressures at home....maybe setting up a relationship with the school counselor would benefit your daughter.
I wish you luck, peace, & happiness!
C.P. answers from Topeka on May 21, 2008
If you have some help with the little guy, I'd suggest you help out at school as often as you can. Your presence could ease her anxiety and yours, too. You could lessen your 'helping' as the year progressed, as she gets into a routine and the teacher is able to manage. I would also consider home schooling. Except for the social, it may be a viable option. If you attend church, her social times could be centered at church activities or small play groups with those kiddos. The teacher may not mind you bringing the baby, but he may be more inquisitive than they are prepared to deal with. I helped in all my kids classes (4) throughout their school years so I could learn their friends and see what they faced each day for better support. Only in high school did they not really like it. God Bless
L.G. answers from Columbia on May 19, 2008
My son was dx with ALL when he was just over 3 1/2 and he started kindergarten with 6 months to go on treatment. Very similar to your situation. He is 15 now so it has been a few years but your post makes it seem not very long ago. He also had the pulses of steriods (prednisilone). His kindergarten was one of the last 1/2 day kindergartens so we were fortunate that way. He still napped in the afternoon so he really needed the 1/2 day. My only advice is that if you keep the school informed and know there is a beginning and an end to the steroids everyone will just have to ride it out. The actions regarding food and behavior is too much for a little one to handle. Keep the same boundaries as far as expectations in behavior because it is less confusing to your child but you know your child will have more problems meeting those expectations. It is a fine line to balance because you don't want them to think because they have special circumstances to deal with they can get away with everything and also you know that what they are dealing with is a huge thing so you have to make certain allowances. The wonderful world of parenting a child with cancer. There are some days there is not much sanity allowed and other days it is entirely normal to you because that is what you are dealing with. The food issue at school, feed a good breakfast and provide lots of snacks. You might talk to the teacher about maybe providing snacks for the class so they might have an extra snack time. Something to incorporate it into the day so your daughter doesn't feel so different about eating more often. For us, at that phase of treatment, coming off the steriods was also difficult because he would be more tired and would be irritable. Also, when my son went off treatment there were a few behavior issues because the further off the better he felt and he wasn't use to having that kind of energy and feeling that well and at that age it translated to having a few more problems at school. Nothing drastic or really bad, just kindergarten stuff. We had a wonderful kindergarten teacher that was able to keep boundaries but be understanding. She would tell me things he had trouble with on those days and I always felt like I was in trouble :) It all was very manageable and kept in perspective that it is kindergarten it will be ok. The only school plans we had was that there was a letter sent out to all the parents at the beginning of school and in it we asked for notification from parents regarding chicken pox. Live vaccines is an issue also. You can talk to the child life people at the hospital and also there could be a nurse at the hospital that specializes in starting school on tx. Also, the school nurse will be quite helpful and stay in touch with her. They did a special presentation to the class about proper handwashing techniques early in the year and the teacher said she thought it helped everyone not spread so many colds and viruses. She noticed a difference. They actually continued that with other classes later. Please write with any other questions you may have. I can also send information to online support groups if you are interested. I found them helpful. My son is doing well. I hope I have helped you. God Bless.
L.M. answers from St. Louis on May 19, 2008
My son was diagnosed with Marfan's at 8 and he did have a 504. He took atenolol to keep his blood pressure down. On this medicine, his blood sugar level could go down very quickly and if he didn't eat he could easily go into a coma. Needless to say, the school was extremely accomodating as far as snacks went. The nurse kept whatever we brought in her office and my son went there whenever he started feeling hungry or shaky. Suprisingly, he never took advantage of it. There were several other things included on the 504 plan. He got to have an extra set of books at home, got to have extra time to finish tests and was restricted from doing push ups and sit ups and rope climb in PE. You will definitely become good friends with the nurse, so be patient, kind, and keep her updated constantly. Good luck!
K.J. answers from St. Louis on May 20, 2008
I don't have an advice on this I just wanted to send hugs thoughts and prayers to you and your family and I hope she is 100% again soon
E.H. answers from St. Louis on May 20, 2008
I don't have kids that has had cancer, but my husband did have ALL at he age of 13. He has been cancer free for 20 years now. The DR. told him he wasn't going to be able to have kids, and we now have 2. The one advice that I can give you is, keep your faith in God strong!!
C.L. answers from Kansas City on May 20, 2008
I know in my son's Kindergarten class, when us room parents got together with the teacher, we asked about having a snack time. Parents would send in donations of healthier things such as crackers, fruits, stuff like that, and the class had a snack time at some point after lunch. If your daughter's teacher is not up for that (or it's not allowed) just set up a certian time(s) every day for her to go to the nurses office so she won't be taking advantage of it? Also, I know there are certian teachers in my sons grade who are "vetrans" I guess you could say, who are more apt to deal with kids that can get antsy, or have ADD etc... Mayber a teacher like that would be good for her so that when she does have her antsy phase the teacher will know how to deal with it in a positive way! Such as changing activities etc... At my sons school in K and also in 1st grade, they have "Centers" where they do different activities and are free to move around the classroom etc... Anyhow thought I'd throw that in there! I know my son can be antsy at times on his own, and those were his favorite parts of the day ; ) I hope things work out and she has a great kindergarten year!
T.M. answers from St. Louis on May 20, 2008
As a former professional school counselor, and therefore former 504 casemanager, I can tell you that there is a process that the school must go through before writing a 504 plan, so know that most schools will not put such a plan in place immediately without first observing your daughter and determining whether she does, in fact, need such a plan in place. In general, the requirements for a 504 are that she has a medical diagnosis (which she does) and that this diagnosis significantly impacts a major life activity. In schools, this is usually education. The school will need time to determine whether the diagnosis is having a significant impact on her learning, and if so, they may write a 504. Some schools prefer to use their CARE team rather than go the 504 route, and if she is doing well in school and your requests are things like having extra snacks, this may be the more appropriate plan. In either case, this is not the same as Special Education.
I hope this helped clarify the process a little for you. I know parents are sometimes misinformed by their doctors' good intentions regarding accommodation plans and therefore can become frustrated with the school, but there is a very specific process before a child can qualify for a 504 plan. Good luck to you and your daughter on your kindergarten adventure!
H.H. answers from Kansas City on May 20, 2008
pack her a big snack. Most elementary classes have snack time available if the child brings their own snacks. Some kids bring more while others don't bring anything and it doesn't seem to bother them either way. My kids never required snacks so they usually don't have one unless they remember that morning and ask me to pack one but most of the time they don't take one. Most classrooms will let them have water bottles as well so that may help stimulate her appetite between meals.
Other kids don't eat well and will save some of their lunch for their snack later if it is a finger type food or some will save their milk for snack if the teacher has a little fridge to put it in or if the teacher allows it.
I also work with special needs kids in the public school and some of the kids require snacks more often and some teachers just let them eat when they need to in the classroom. You will be surprised at how well the other kids accept and want to help out. They will even help remind the teacher when that special child needs to eat or take medicine or whatever their needs are. I love seeing the compassion and love in these little kids lives when they help out with their peers and make everyone feel special regardless of their life situations. Some teachers have small refrigerators in their classes and the parents have provided extra snacks for their child that requires them more often and the child will let the teacher know when they feel they need one so having some extras available at the nurses office as well will help.
R.F. answers from Kansas City on May 20, 2008
I have a son that is a cancer survivor. He was diagnosed when he was 11 and starting middle school in a new district. He is now 20 and just finished his Sophmore year at Washburn in Topeka and he is all clear.
Contact the school immediately and advise them. What a 504 (there is a pre-cursor to the 504 but the name of it escapes me now) plan does is put the school on notice that they may need to put in place accomodations for her, as required by state law. This could be as simple as letting her wear hats to school to having a tutor set up at home. I know they are accomodating now, and hopefully you are in a district that handel these they way they are supposed to, but in the event they resist any required accomodation, it is much easier to get this in place now.
We also went to CMH and Dr. Lewing is our doctor. We had a great experience and love Dr Lewing and the staff. I wish only good things for you. You are stronger than you think...really.
K.M. answers from Springfield on May 20, 2008
I would just like to recommend a book for you to read. Calling of an angel, natures cure for cancer, by Dr. Gary Glum, is the true story of a canadain nurse that cured cancer in people the Dr.'s had given up on, with an old Ojibwa Indian herbal recipe, and her fight with the governments (this was in the 1920's)to make it available to everyone who needed it. Dr. Glum's book was banned and confiscated, and is hard to find but the Library was able to borrow it from a Jefferson county, CO. library. I found it very interesting, and bought my own copy from http://www.herbalhealer.com/ they also sell the herbs to make your own at home, and have many member testimonies. It is free to become a member, and is owned and opperated my Dr. Marijah McCain ND, in Mountainview, AR. You can also visit Dr. Glum's website I think it is http://www.drgaryglumandassociates.com
Hopefully one day, this information will be more widely known. I feel everyone should be able to have this information, instead of the government and medical establishments trying to hide it. We can only hope that by passing this on by word of mouth, that people find the truth that the government don't want anyone to know. Dr. Glum also has another book about aids but I have not read it. Herbal Healer sends a copy of Dr. Glum's interview with every 4 Herb Tea order, which has instructions for making the tea also. Good luck to you, and may God watch over your daughter.
L.K. answers from Springfield on May 19, 2008
This is not anything I have had to deal with, but I would like to offer some support. Just be sure to communicate with the nurse and teacher. Your daughter deserves some special considerations and I'm sure any good kindergarten teacher can provide it. You seem to be doing all you can do to prepare your daughter, (and yourself). Good luck.
V.T. answers from Topeka on May 20, 2008
My son has Crohn's so he takes steroids often. He takes them for longer periods of time and he can also get VERY emotional and VERY hungry. Just talk with the school and tell them the situation. I am sure that they will be very willing to work with you on the hunger issue. My son would go to the nurse's office and get a littls something to eat in between lunch and their "snack" time. It is very hard to deal with the emotional part of it at times, but I have found that my child is way better at school and then has a break down when he gets home. We just know that it will pass after he is off and then we have our great boy back. I wish you well and let me know if you ever need any emotional support. :)