Guest guest Posted April 25, 2004 Report Share Posted April 25, 2004 Wow you are going thru much more than we are and we know how much of a challenge just getting our son to take shots has been. We tried everything - all the psychological games. I went to the docs to learn again everything I could about giving shots. A couple simple things helped us. We stopped using the alcohol before the shot and I would hold the syringe in my hand for about 30 seconds to warm it a bit. Sometimes I let my son poke me with a empty syringe with no needle. (Although I have given myself the shot to see what it feels like - the injection is nothing and a small burn may occur, but it is really suprisingly not bad (although I have quite a bit more fat!). Anyway the biggest break through for us was so simple - but even Dr. H recommended it in the beginnning. It was making a chart and giving him one star for taking the " poke " and two stars for not whining or crying - amazingly it was almost instentaneous. He helps me make the chart and puts the stickers on and if at the end of the week he gets 10 we go out and have a little treat - some may frown on the reward but it is working for us. With the chart we all see how he is doing and the one day off has not been a problem. also, we just try to be calm, upbeat and unified if you have a significant other helping you. All the very best to you. RSS-Support wrote: There are 24 messages in this issue. Topics in this digest: 1. CHAT Jeanine - starting GH/local Drs From: " pcpets " 2. ADD/ADHD - Kind of long From: " pcpets " 3. Re: Digest Number 2289 - From: " pcpets " 4. Thanks for the supportive messages! From: " Jodi Zwain " 5. Chat: Judith From: " Jodi Zwain " 6. Re: Chat: Judith From: " Sidny27 " 7. Growth Hormone Question From: " Carlton and " 8. Re: To - 6 Days on/1 Day off GH From: " CHRISTINE " 9. RE: Growth Hormone Question From: " Home " 10. anyone on G H please read the post in re:to jennifer From: " CHRISTINE " 11. Thanks everyone, problems with Xavier From: ljhess0701@... 12. To From: " Jodi Zwain " 13. Re: Thanks everyone, problems with Xavier From: cara schobert 14. Re: Thanks everyone, problems with Xavier From: " Jodi Zwain " 15. Re: Re: To - 6 Days on/1 Day off GH From: cara schobert 16. Re: CHAT: 1st DR H. visit today From: " magicrss " 17. Re: Growth Hormone Question From: " magicrss " 18. To : Hints for GH shots From: " magicrss " 19. Re: To - 6 Days on/1 Day off GH From: " sherrid2003 " 20. Re: Facing Reality From: Ginger 21. Re: To : Hints for GH shots From: " CHRISTINE " 22. Re: Our School Appointment - really long post From: " CHRISTINE " 23. Re: Re: Thanks everyone, problems with Xavier From: ljhess0701@... 24. Re: anyone on G H please read the post in re:to jennifer From: " Sidny27 " ________________________________________________________________________ ________________________________________________________________________ Message: 1 Date: Fri, 23 Apr 2004 10:24:21 -0400 From: " pcpets " Subject: CHAT Jeanine - starting GH/local Drs Hi Jeanine, What hospital do you use here in Cleveland? We have been using the Cleveland Clinic for , but have been less than happy with the Endocrinology Dept there. We found out yesterday, during a GI appt, that the Endo we've been having so many problems with currently, is the Head of the Dept, so I have no idea what we're going to do now. One of the biggest problems we've been running into, is that all the Drs here want to do, is put on GH. They don't seem to be concerned about his weight, or weight-to-height ratio. They don't worry about his growth velocity, or his overall health. When we've expressed concerns about his hypoglycemia, or insulin resistance, they have been less than forthcoming with information, support, or a plan for handling these problems. On our first visit to the Endo Dept at the Clinic, we met Dr . She was nice enough, and seemed interested in working with us, since she has a couple of RSS kids already with her service. When we asked how she felt about GHT, she was skeptical as to whether it would work, since most RSS kids are not GHD. She told us that she would be willing to do a " trial run " for 6-8 months, but if that did not yield dramatic results, she would discontinue treatment. This was our first visit with her. We were only asking for information. But immediately following this visit, GH showed up at B's house, along with a nurse to teach everyone how to give the shots, and B was started on GHT before we knew what was happening. As we got deeper into our research of GH, and it's most effective use, we decided to stop therapy, and revisit Dr to discuss our concerns. Research shows that GH does not rule growth in children under the age of 2 yrs, and that " caloric catch-up " is most important at this age. was about 15 months old at the time, and was still having problems gaining weight. On our second visit, we brought this fact to her attention, and expressed our concerns as to whether would be able to gain enough weight to keep up with a growth velocity increase of 1.5-2 times his current rate. She told us that if we were going to wait for B to " catch-up " that we would never be ready to start GH, and that she didn't need to see B again, until we were ready to begin GHT. That was the last time we visited her. We kept in contact with Dr H, and when she felt that B had completed his caloric catch-up, and that it was time to look into starting GH, we went in search of another Endo. The second endo we tried was Dr . He is not a hands-on kind of guy. He seems to leave his residents to do all the " hands-on " work and then comes in to answer questions, etc... We explained that we were in contact with an Endo in NY (Dr H) that had extensive experience with RSS children, and that we were interested in finding an Endo here that would be willing to collaborate with her. He stated that he had no problem with this, but wondered why we weren't going to NY to use Dr H. We explained that making the trip to NY was just too expensive for our current financial situation. Dr had no problem with starting B on GHT either, but expressed concern over some of the tests that Dr H wanted run on B before beginning therapy. He promised to contact her, and told us to make an appt with him for 3 months later. Three months later, we returned for our second visit with Dr , only to find that he had not bothered to contact Dr H, and had gotten rid of all the information we had given him on the first visit. We explained that our research showed that the tests that she wanted run, were to determine if B was in premature adrenarche, or insulin resistance, and why this was important. He suddenly agreed to run the tests, attempted to make us feel guilty for pushing the issue by stating that the amount of blood needed for the extensive testing Dr H wanted would required two or more blood draws at separate times, and sent us on our way. How frustrating! That was in Feb, and we still haven't been able to move forward with the testing. Yesterday, we found out that the bone age scan, run on both knees, was read only as an x-ray to determine whether or not B had any malformations, or fractures. The GI said that she's never heard of a bone age scan done on the knees, and that as far as she knows, they only use the hands at the Clinic, so it looks like we will be starting all over for the one tests that has been completed. Talk about frustrating! I was wondering if you've had any more success with the hospital/Drs that you have found here in the Cleveland area? If you like to chat, or trade emails my Yahoo ID is grandmax2ab, and my email address is pcpets @adelphia.net (no spaces, of course) Hope to hear from you Pat (g-ma to , RSS, 28 months, 20# 9oz, 30.1 " , Prevacid, Singulair, GT) ________________________________________________________________________ ________________________________________________________________________ Message: 2 Date: Fri, 23 Apr 2004 11:15:40 -0400 From: " pcpets " Subject: ADD/ADHD - Kind of long To all with active preschoolers ALL of the behaviors you have described with your kids, are evident, on a regular basis, with my 3.5 yr old g-daughter, Aidan. Aidan does not have RSS, but ADD/ADHD runs in our family genetics. Two out of 4 of my kids were diagnosed with ADHD, and 5 out of the 8 cousins were/are treated for ADD/ADHD. , I DO think that girls mature faster than boys, but children with ADD/ADHD almost always have maturity issues. It could be that Hayden does not have ADD or ADHD, and that Colin does, or it could just be that Hayden is a girl and Colin is a boy. The differences in behavior would be dramatic, and I totally understand having problems with not comparing the two! It seemed like I wanted to ask several times a day, why one child couldn't be more like the other, when mine were younger! LOL I found it interesting in 's email about Jordan knowing who he can " play " and who he can't. BOTH of my ADHD kids were like that. When wrote about how much Jordan likes to talk, and how he can sometimes be verbally unkind, it also reminded me of my two. As it was explained to me, ADD/ADHD kids don't seem to have the " stop-gap " that most of us do, that lets them think before the act, or reply (this falls under impulsivity). So most of the time, they say, or do, the first thing that comes to mind, without thinking through the consequences. One of the best treatments ever recommended for my two, was a rigid schedule, with a very structured routine. We did the same things every day, in the same order, and in the same way, all the time. If things got too rowdy, we would stop that type of play, and work on some quiet activity, until they seemed calmer. We tried to get outside daily, to run off excessive energy. I limited the amount of refined sugar, artificial dyes, and MSG in their diets. All of these seemed to cause my kids to exhibit more hyper-type behavior. And when I needed them to do something, I would get down at their level and make sure I had eye contact with them, when I made the request. Then, I would have them repeat the request back to me, to make sure they were listening. You wouldn't believe how often they missed what I was saying in the beginning. As their listening skills improved, so did their behavior. I hope some of these suggestions help those of you going through this now. Parenting an ADD or ADHD child is frustrating, exhausting, and exhilarating, all at the same time. It is wonderful to watch them learn more and more self-control, as you both learn little tricks that help them focus on the tasks at hand. It, also, helps them build self-esteem. It seems like it is always these kids that are are getting the negative comments. It does get better with age, and even if your kids don't have either ADD or ADHD, the same tricks work well with over-active preschoolers! LOL Pat (g-ma to , RSS, 28 months, 20# 19oz, 30.1 " , Prevacid, Singulair, GT) ________________________________________________________________________ ________________________________________________________________________ Message: 3 Date: Fri, 23 Apr 2004 11:19:36 -0400 From: " pcpets " Subject: Re: Digest Number 2289 - Hi , It is so great to hear that Dennis is doing so well now. He's been through so much since i joined the list serve a year and a half ago! Glad to hear that he'll be able to get back to hockey soon! Been through that aggressive male puberty stage, and there's nothing like athletics to expend it on! LOL Good to hear from you! Pat (g-ma to , RSS, 28 months, 20# 9oz, 30.1 " , Prevacid, Singulair, GT) ________________________________________________________________________ ________________________________________________________________________ Message: 4 Date: Fri, 23 Apr 2004 18:44:44 -0000 From: " Jodi Zwain " Subject: Thanks for the supportive messages! Hi, everyone. I cannot tell you how much I appreciate your supportive messages regarding our decision with Max's education. It was a hard one to make and I was really nervous, but I think it will work out. I'm so glad that you all care enough and that I can turn to you for advice and a virtual shoulder to cry on. I have since spoken to the Director of Special Services, the high school psychologist/Max's case manager, and Max's history and math teacher (he's the teacher for both subjects). Max is going to stay in classes until 11:45 each day. If he is not feeling well, he can go to the nurse's office and rest until he feels well enough to go back to class. Basically, in that time period, Max has study skills, digital photography, study hall, history and math. If he is unable to complete history or math, then the teacher will give him work to do at home. Home instruction will be in English. Max knows that he will come home, take a break/rest and then have to do reading and some chores. He is not coming home to watch TV for the rest of the day. And he will get home instruction three days a week. Hopefully this will get Max on track for the rest of the school year, which is less than two months anyway. And hopefully he will feel better and be able to build up his strength. (BTW, when he has his button placed next week, he will also be tested for the H Pylori infection.) Thanks again, everyone. You are a wonderful group! Jodi Z. ________________________________________________________________________ ________________________________________________________________________ Message: 5 Date: Fri, 23 Apr 2004 18:49:30 -0000 From: " Jodi Zwain " Subject: Chat: Judith Judith, It seems like you have your bases covered for next year. You've done a great job. It is so scary and overwhelming in the special educational system - and the No Child Left Behind Act is making it even harder. I do have one question. Why are they calling 's class a " segregated " class? Here it is called a self-contained class. Segregated sounds so awful! To answer your question about thinking in advance with Max's IEP and possible home instruction, it just seemed like a natural thing to include considering Max's health history. I happen to think that any child, RSS or not, who is at risk for hospitalizations due to stomach viruses, hypoglycemia, surgery, etc. should automatically have that included in the IEP. You don't have to implement it unless it is needed and it sure speeds up the process when it is required. Without that part in Max's IEP, the district could have said no to our request or they would have had to go through revising Max's IEP and that would take a long time to do. Just something to think about for those who are going through the IEP process for the first time or making up new ones for next year. Better to have it and not use it than to not have it at all. Jodi Z. ________________________________________________________________________ ________________________________________________________________________ Message: 6 Date: Fri, 23 Apr 2004 19:23:25 -0000 From: " Sidny27 " Subject: Re: Chat: Judith Hi Jodi, I guess it really is called self-contained, I was just half asleep this morning. So far, other than overnight for tonsils (as a precaution), has not been in the hospital since the gtube etc. in June 2002. Something to consider for the future, but not for preschool next year since his IEP is already done. Thanks for letting me know I'm on top of things. I think I just needed validation for someone who has been there that I'm not forgetting anything important. Hang in there with Max, Judith ________________________________________________________________________ ________________________________________________________________________ Message: 7 Date: Fri, 23 Apr 2004 20:05:59 -0000 From: " Carlton and " Subject: Growth Hormone Question had started her growth hormone of .5 in Oct 2003. We saw her doctor who is Dr. here at Ft. Hood on the 14th of April. He said that there had been no significant change in her growth as far as height or weight in 6 months. He had explained to us that if given the dosage everyday with the exception of Saturday which is her day off the shot she should have shown an increase in (1) her shoe size and (2) appetite. She has been with my husband and I for 3 wks now and she has had an enormous change in appetite. She is eating everything!!! Her and her brothers and sisters have a love for vegetables which is wonderful because not very many children do. We started giving her 2 vitamins a day. We make sure she has extra calcium and protein as well. Since Dr. has talked to us about how important making sure that if she is on the shot it must be consistant. She was given her shot every day she was supposed to in our care and if it is recommended by her doctor to try the shot again we will make sure while under our care it is done. She was very brave when she took her shots and we are so proud of how she has been dealing with it all. We are scheduled to see a nutritionist soon. Our main issue with her taking the GH shot is that once she started taking it that it wasn't going to be all for nothing. We hate her having to get shots and nothing positive come from it. She has been off the shot now for 9 days and has not lost any weight from not taking it. She is active and healthy. We are hoping that the GH shot will be something we can try again and have a positive outcome in the near future for her. Has any other parents gone through the same thing with the GH shot. Does it take longer than 6 months to show any change in some children? I figure it is different with each child. and Carlton ________________________________________________________________________ ________________________________________________________________________ Message: 8 Date: Fri, 23 Apr 2004 20:39:38 -0000 From: " CHRISTINE " Subject: Re: To - 6 Days on/1 Day off GH - Hi this is s mom, I know you wrote this to , but We have started G H 3 days ago and we are doing the same as you 6 times a week and one day off, I am picking Saturdays for the day off, you said Abby is doing good, is she used to doctors and being poked alot? is going hysterical on me when giving the shot, I feel so bad for him, I think he thought he was going to only get the shot at the doctors that day and now he realizes that we are doing it at home, he is totally freaking out on me, I think the reason is because he has been through so much, 2 surgeries on his penis for hypospadias, he has had to be put to sleep to many times for an endoscope and colonoscopy..tubes in ears and well there is more it seems like when he gets sick we are back to the hospital and all he knows is getting poked or at just a sick appointment he ends up having to get poked for blood.He is not at all happy about this and now I feel like he is tramatized!!! I have talked with him about it and try to get him to help do the alcohol swab ...but when he knows it is fixing to happen he goes nuts and starts crying before I even get the shot ready!! He knows that we are going to either do it before bath then he doesn't want to take a bath or if he knows that we are going to do it after bath then he screams and doesn't want to get out! The look in his little eyes hurts me so bad and I am really getting sad for him but I know I have to be strong, do you have any advice, I know I can do it but I am so depressed right now for fear he is going to hate me!! He yells at me and calls me meanie and it hurts to see him like this?? Well sorry this is so long but just in need of help, he also has to go to the doctor and get his shots for kindergarten and the are going to have to give him 3 what if I have === message truncated === Quote Link to comment Share on other sites More sharing options...
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