Ok so many questions. When we were in the hospital they couldnt get his numbers under 200. Now we are how they have came down some. I dont know what he can eat. What is the honeymoon phase? I dont know how much he can eat or what foods to stay away from. We go to the specialist next Friday but until then what do I do?
How old is your child? What kind of education have you gotten? As far as foods you child can eat is determined by age, and insulin requirements. You should be tracking blood sugars at least 5 times day- breakfast, a.m. snack, lunch, afternoon snack, dinner, bedtime snack, and between 2/3 a.m. You should be taking b/s whenever you feel there is a low so there may be more times. You'll want to keep track to see if there are patterns of highs and lows? How often is insulin being given? Are you seeing a pediatric endocrinologist? The honeymoon phase is when the pancreas is still producing some insulin, but not enough to meet the body's needs all of the time, this can last 2 weeks to 2 years. It is a very challenging disease and you need lots of help and support from nutrition, social work, nursing and doctors. Are you located near a Children's Hospital? If possible contact them to seek all your education it sounds like you could use their help. We are here for you, too. Good luck! My son is 4 and just diagnosed 2 weeks ago-so I am speaking from our experience.
Jeffrey is 10. He checks his b/s in the morning at dinner at supper and bed time. If he is feeling weird we check other times. We havent seen the endocrinologist yet we will see her next Friday. No one has told me how many calories he should be eating or anything. I talk to the endocrinologist every night to let her know what the b/s are for the day. She said she would teach me calorie counting and everything else next week. Sorry just my opinion but the appointment should be sooner. Im just freaked out! Luckly though he was very afraid of needles. Now he pricks his own finger and gives himself his insulin. Thank God for that. The closest Children's Hospital is Duke which he has been there for other stuff before. Do you think I need to set him up with them, they are the best?
When my daughter was diagnosed(March 4, 09), we were sent to a children's hospital. It made all of the difference in the world. We worked with the diabetes team at Children's Hospital of Detroit. They are amazing!!!!!! They told us how to feed our daughter, when to feed her aned how many carbs she could have. We met with nurses and dieticians repeatedly in the hospital before we were released. They sent us home with a booklet that had all the basic info about my daughter's personalized highs and lows. It has all contacts and emergency numbers. It is now permanently attached to our fridge! The best thing that they offer is a call-in line every morning where you can call in with not your child's numbers and they can adjust insulin dosages as often as needed. We've called in so often with questions! I'm not sure if you went to a children's hospital, but if you didn't I would say that it is worth the time. I think that pediatric nurses and endocrinologists understand the stresses that parents are going through and tend to be much more patient and understanding.
OH my, I can't believe that you did not get more specific instructions before leaving the hospital. My advice is to call your specialist before next Friday, hopefully you were set you up with a pediatric endocrinologist! If so, you should be able to call them and ask one of the nurses to set you up with a plan. You should have a routine for eating and shots that include number of carbs (not so much type of foods). Each meal and snack should be based on a certain number of carbs (it just helps keep everything in balance). Insulin injections are all based on blood glucose levels and carb counting and calculations (at least from our experience). We didn't hit the honeymoon phase until about 3 weeks after diagnosis, so don't worry too much about that right now. If for some reason you did not get set up with a pediatric endocrinologist, please find the nearest Children's Hospital and call to find someone you can talk to. Also, even after our diagnosis, I came home with a manual from our endocrinologist for my son, I hit the library and in the past 3 months, I think I have read between 8-10 books on type 1 diabetes. Some are good, some are scary at this point, and some are terrific. At this point all the knowledge you can get is best, it helped keep the scary parts at bay for me. Good luck and keep asking questions, hopefully you can get the answers you need.
I also am shocked at the lack of info they sent you home with. My son was diagnosed in Feb of 09 and we stayed at a children's hospital for 4 days to learn how to care for Ty(my son). As the parent of any sick child, you want all the info you can get and feel a bit more in control.
Even with the 4 days of wonderful nurses and an amazing diabetic team at CHKD I still felt lost and scared and had a lot of questions. I would call the children's hospital to see if you could see someone.
I think Ty tested his bs 6 times a day and we have bs charts to fill out for his Dr.
All of his shots are figured out by his bs and carbs for the meal. Do you know your carb ratio yet?
I personally think any children's hospital will be better at handling your son than a traditional hospital. Children are what these people do every day, all day. I would call and make an appt ASAP and make them understand that you have already been diagnosed, but haven't received the proper info.
My son was diagnosed at the age of 9 on 11/13/08. We were sent to Loma Linda Childrens Hospital and spent 4 days there. Alot of the time was spent to get my sons numbers more manageable but mostly the time was spent for us in class with their endo team teaching us everything we would need to know to take care of my son. It is alot to take in, but remember everyone here knows what you are going through and is here to support you. I would try to get in to the endo sooner, since you were given so little info to start with.
Hi, well of course you are freaked out! I think we all are at first, it's so overwhelming and shocking. You really need more time and instruction from your medical team to handle this. I hope you can get him into a Childrens Hospital for a couple of days to get on the right track. Be persistent, and as demanding as you need to be!! Next friday seems way too far off. My son is almost 10, and he is Jeffrey too :) I can't imagine how hard it would have been without our hospital stay (3days). Hang in there, and go ahead and push for what he needs. Put your foot down, or just go to the Childrens Hospital ER and I am surey they will admit him, and help you.
I am so sorry to hear that you got such little information regarding treating your son. I do believe that getting him into Children’s would be best. One thing I learned very quickly was how to become an advocate for my son’s health and medical treatment. I agree with suggestion to take him to the ER at Children’s if that is what it takes. I would not wait until next Friday.
Good luck and keep reaching out for support!
I will assume that the hospital could have gotten your son's blood sugar below 200 but they chose not too. What they were hopefully doing is determining the appropriate insulin doses. They wanted to get your son out of DKA (if he was admitted with diabetic ketoacidosis) without causing low blood sugars. As long as there are not ketones being produced the hospital was likely trying to stabilize blood sugars and determining the right insulin dose. There are general rules of thumbs for insulin dosing (based on body weight and sometimes body type) but each person is different. I would encourage you to have a pediatric endocrinologist for your son. My son was diagnosed at age 2 so food choices was not an immediate concern. We allowed him to eat pizza or other foods he liked. We still allow our son to eat almost anything he wants but there are limits on portion size and timing might be dictacted by insulin shots. He does not drink sugary liguids, gatorade, or fruit juices. Make sure he does not have ketones but try not to let high blood sugar numbers overly concern you for the moment. Your goal is figuring out the right insulin amounts without causing lows. Besides Juvenation, consider contacting your local or state JDRF office to inquire about a Bag of Hope or to see if they have a mentor program. JDRF also has an Online Diabetes Support Team which can be accessed from jdrf.org and choosing "Life with Diabetes" on the menu.
I know several others have encouraged you to go to a Children's hosp and see a PEDIATRIC endocrinologist. I totally agree. We were in the hospital for only 2 days, but we wer ein class for most of it to learn what this crappy disease is and how to manage it. I would have been scared out of my mind if we had just been sent home without all that (I was scared enough as it was when we did go home.)
However, if you haven't gone to the hospital, I found the info that we were sent home with (in a binder) on our hospital's website. It explains Type I and gives lots of basic info on managing and caring for a child with diabetes.
The nutrition and meal planning section is great, because it gives you the amounts of carbs in various foods. I probably found the dietician meeting when our son was dx to be one of the most helpful when we were in the hospital for this reason.
I hope your son and YOU are doing better.
I am new to this, but I completely agree. My daughter is 17 months and was just diagnosed 1 month ago. There was a HUGE difference in the information that was given to us by her regular peditrician and the pediatric endocrinologist. After going to a children's hospital I felt a lot more comfortable with the new things that we needed to do on a daily basis. Hopefully you can get an appointment soon.
Hi determined mom. My daughter was diagnosed a year and a half ago and I have to tell you, Life will get easier and back to "normal". I think in our case, childrens hospital was the best place for my baby. Childrens hospital of Michigan has a diabetes/endocrinology team that is just WONDERFUL! There is a team of 4 nurses/diabetes educators (2 of them are type 1 diabetics themselves) and 2 dieticians. The doctors are experienced not only with diabetes, but with childhood issues that adult endocrinologists may not be experienced at. They have a diabetes hotline we call in numbers every 2 weeks, and an on-call pager just for problems/questions that are urgent but may or may not be "emergencies". I think it is atleast worth it to check out what Duke has to offer, you have a lot to learn and deal with and it may help. If you have any questions in the meantime, I would love to help any way I can. I have been there and we have come a long way!