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puberty has struck - I need a hand and a shoulder

Discussion in 'Introductions' started by bbirdnuts@aol.com, Nov 21, 2009.

  1. bbirdnuts@aol.com

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    On Oct. 20, 2009 my 9 1/2 year old was put on insulin. I have come here for support. I am so glad to have other people I will be able to communicate with. I have been on the website reading as much as possible. Wow, this is a roller coaster that I know no one wants to ride.

    I cannot begin to understand much when the endro changes 3 variables each time we see or talk to her. This is crazy. I have tons of questions.

    JDRF contacted me immediately after visiting the endro the second time and asked to have a mentor family contact us. I have not talked to anyone and that has been almost a month. I did call JDRF back and they were going to have someone else to contact us and that still has not happened.

    My point is I need help from all of you wonderful moms/dads.
     
    Last edited: Nov 24, 2009
  2. Amy C.

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    Welcome to the CWD forums. All of us are in the same boat as you. Some. like you, have just arrived on the boat. Others have been on this boat ride for many years. Some of us have children who are very young, others have children who are nearly adults. Some are on pumps, many are on shots. We all are thankful for the insulin that keeps our child alive.

    What kind of insulin is your child taking? Is your child male or female? Which part of the world are you from?

    Ask any questions you have -- usually at least a few will answer. Many just read and may choose make a response that differs from what someone else has said.
     
  3. danismom79

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    Welcome. You'll find lots of information here.

    Was your child diagnosed with type 1? I'm not sure if you were making a connection between hitting puberty and starting insulin. Things change quite a bit in the beginning, and will continue to change. But you'll become more comfortable and confident over time.
     
  4. Becky Stevens mom

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    Hello! and welcome to the family:) We are all here to support you and give you comfort. In time you will provide the same for other new families joining us. How is your child doing so far with diabetes? So 9 1/2 Im thinking 4th grade? my son Steven is in 3rd, he was diagnosed 5 years ago and is an active, busy, happy, healthy kid with lots of big plans for the future. Come back here any time to post or join us in the parents chatroom if you need someone to chat with. Theres usually someone around.
     
  5. MaryMom

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    My daughter was diagnosed in early October of this year. We have contacted JDRF twice about a mentor or someone that is my daughter's age. Still nothing. I'm not sure if we need to keep asking or give up on it.

    Other than that, I have received some excellent advice from this board. Seems that there is always someone around that can answer a quick question or two!!
     
  6. bbirdnuts@aol.com

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    A hand and a shoulder

    My daughter's name is Carolina and we live in South Carolina. She is homeschooled as of 10-1-2009. Wow, only 19 days prior to starting insulin. Two years prior she went to Montessori and prior to Montessori she was homeschooled. She is in 5th grade.

    I have a bit of a strange story, one I would recommend to no one. Carb, meat, and dairy restricted. She was diagnosed with type 1, 2 1/2 years ago and went on a radical diet. I had noticed symptoms and caught her early. The endro agreed to not put her on insulin at the time and asked us to keep a check on her blood sugars.
    Her blood sugars stayed between 75-120 for 2 1/2 years.

    Overnight, everything changed. Her body had enough. Blood sugar 89 one day and the next morning was 252 one time and 247 immediately following. That was not a fasting number, but a late morning reading. I waited one more day and continued on the extreme diet, her numbers remained elevated and we went to the doctor. They once again repeated the same lab work and confirmed the type 1 diagnosis. Of course, we knew this was not typical numbers so the endro wondered if something was going on with her liver and sent us for an abdominal ultrasound. Everything was normal and what a relief. Two and a half years on a radical diet, I was worried.

    So here we are on our rollercoaster. The endro put her on Lantus at night and she cried about the stinging. They changed her to Levamir at night and now have split the dose. One in the am and one in the pm. We try to keep the time morning and night between 7:30 and 8:30. Is that too big of an open window? She is on Novolog before each meal and snack before bed. These numbers have changed sooo much. Lantus is 8 and 8. Novolog is a 1:30 correction factor and the carb ratio is 10 in the am, 18 at lunch, 10 at dinner and 15 at bed. That is endro orders. Lunch was at 12, but she kept going low and endro changed the ratio to 18.

    Carolina was low 1 hour after dinner for the past two nights. Tonight at dinner the carb ratio used was 13. Right now 1 hour and 30 minutes after eating Carolina became symptomatic and her blood sugar was 103. She will continue to drop for at least 30 more minutes so I gave her 6 grams in glucose tabs. The past two night lows happened at 1 hour after dinner. The Novolog is given and she immediately eats. What does everyone think?
    Becky, this has been such a dietary change for her. She is handling everything fairly well. Loving to eat what she wants. She is thrilled with her food. A little hard at first accepting the shots. I had prepared her that this day may come. When her blood sugars sky rocket right after eating she become rather difficult and irritated. Her view is she would have gone on insulin earlier if she knew the shots would be ok. Her first few shots hurt. Then came emla prior to every shot and someone told us about ice. After the screaming with ice a few times she now wants ice. She does still use emla for the night time Levamir. Anyway to make things as pain free as possible is what every parent wants for thier child. I will try the chat room soon, thanks.

    Here is some further information. 2 1/2 years ago A1c 6.3, c-peptide 0.6 or 0.06 not sure which number. I think it was 0.6. October 20, 2009 A1c 5.3. Last week 6.5. Endro wrote on the lab work one antibody positive specific for type 1. The other labs GAD, IA-2, insulin, TTG and IGA look out of wack to me.

    About me, I have been married for 21 years and am 44 years old. The marriage likewise is a rollercoaster. I have stayed at home since 1994 and prior to that worked in the legal system.
    Thank you to everyone for responding to me. Anyone close by?
     
    Last edited: Nov 21, 2009
  7. Amy C.

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    Wow, I didn't know that anyone treated diabetes with a restricted diet --especially with a child. She must have been taking some supplements to replace the nutrients obtained from the carbohydrate, protein and vitamin D needed for development.

    Her body is going bonkers with the different food and it will take a while to adjust. You had a balance going there for a while which was upset with the addition of the carbohydrates and protein. IMHO, it is a good thing that she start to eat these foods again. I don't recall anyone posting a story like this before on these forums.

    Using insulin is not bad -- it isn't a poision to the system. Everyone produces it, except Type 1 diabetics.

    Your daughter's honeymoon probably ended, rather than puberty -- or puberty starting showed the need for more insulin.
     
    Last edited: Nov 21, 2009
  8. 2type1s

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    I just wanted to say welcome! I have 2 daughters with D and I can't imagine restricting their diet for 2 years! Sounds like you got a nice, long honeymoon! My youngest wanted ice, shots, etc for about a month, then decided that it was just too much time out of her day! You'll find insulin to card ratios will change frequently and sometimes without reason, it's just part of the game, unfortunately. This is a great place for questions and answers.
    Funny you mention about the JDRF mentor program. I signed up to be one and did the training 2 nights ago. I promise if a family needs me, I'll call immediately!
     
  9. bbirdnuts@aol.com

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    A hand and a shoulder

    The endro is saying puberty. Who knows there are so many factors. Amy, please don't believe my daughter did not have carbs. I should have been more specific. She ate an unlimited amount of certain and specific carbs. The doctors continued to be amazed at how well she grew and gained weight. She did take a few supplements. Most of her daily nutritional needs were met through foods including protein. There are some foods that are not meat that one can eat to obtain an adequate amount of protein. She did eat fish and some free range organic turkey. It was not on a regular basis.

    I have never believed insulin is a bad thing. If the body does not make insulin one must have insulin. If the body is not producing enough insulin one needs insulin. Not every type 1 has completely stopped producing insulin. When a person injects insulin there is no need for the pancreas to produce insulin. At what point is the pancreas at when one is diagnosed? I believe everyone is different. There are some people who produce no insulin at all, but everyone is different. Talking in deepth with the endro reinforced my beliefs concerning this matter. What are your thoughts?

    My daughter is enjoying eating anything and makes good choices. Personally, I do not believe she should have made such a radical change at one time. That is just my thought to CWD I have not shared with anyone else. I would have preferred that she change one meal at time or a certain amount of each meal to allow her body some adjusting. My daughter wanted to eat anything if she was to have shots. I just respect and try to understand her decision. I do not have a problem with her decision.

    Please don't make me feel like you are attacking me. I came here for help and understanding. I know this is not a typical story. I was speaking open right from the beginning so everyone will have an understanding. Think about this, if someone asks, when was your daughter diagnosed? My answer would be 2 1/2 years ago. Then they ask, when did your daughter start on insulin? I would respond one month ago. Can you imagine what they would be thinking if they had no history or explanation. I would also be told there is no way she is a type 1. Hopefully, others will be willing to give a hand and a shoulder.
     
  10. Amy C.

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    Thank you for the additional detail -- it makes a difference in my understanding of your daughter's situation. I apologize if you felt you were attacked.

    Most people do not have the foresight to recognize they might be able to do something with food to hold off the full development of diabetes and after that the discipline to guide the child to the food choices that encourage the pancreas to keep producing.

    Nearly everyone's child had to immediately go on the insulin regime your daughter is currently using. Your story is quite unique in that she had a couple of years where her own body kept producing adequate insulin for her to thrive.

    The adjustment to life with insulin dependent diabetes is radical. It was a few weeks before things settled down for my son. Adjustments are always being made.
     
  11. StillMamamia

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    Hi and welcome!:)

    Very interesting stuff. I am assuming that the original diet she was put on was based on what Dr. Bernstein writes about?
    Pretty cool that she's been honeymooning so long. I would also think the end of the honeymoon couple with pre-pubertal hormonal changes is what is happening right now. There are some great threads on puberty and hormones. Just do a Search and type those two words and they should come up. A lot to take into consideration during these pre-pubescent hormonal times. I wish you best of luck.

    Regarding the above first comment of yours. I would disagree. I think that being put on insulin actually gives the remaining beta cells enough impetus to recuperate and do their stuff. For me, it's like getting a housecleaner who comes twice a week. The days when he/she is not around, hopefully the house is a bit easier to keep tidy.:D

    I do believe that some people still produce their own insulin. I am a firm believer in this, because you can do all the right things concerning D management, and still have those out of the blue lows (the ones you really can't explain). I think like "The Last of the Mohicans", there are some beta cells which manage from time to time, to produce insulin. I often wonder, if, by being under constant attack, these beta cells don't adopt a "protective" manoeuvre. Probably wishful thinking...

    One last word - don't feel attacked. Just because people express their opinions (as you have yours) doesn't mean they are attacking you.

    Anyway, looking forward to reading your experiences and points of views.
     
  12. Lee

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    I will withhold my person opinions on the diet, only to say that there is no cure to T1, and in the end, there is no way to avoid taking insulin. I am sorry that your child is going through this; and I know how tough it is.

    For the lows 1 hour after eating, simply increase your carb ratio - so, right now, she is probably on something like 1 unit for ever 15 carbs - you would raise that to 1 unit for every 18 carbs, for example.


    Also, she needs insulin becuase her honeymoon has ended. My daughter had a two year honeymoon, and I thank insulin for that. Ever since it ended, it has been a roller coaster. Now that you have introduced insulin, you may find that the honeymoon briefly comes back once the pancreas gets a little rest. It will spit some insulin out at random times that will drive you crazy.

    And I also want to add, that while it is not the most common treatment, there are a few people on this board whose kids take extremely LITTLE amounts of insulin, or did for a year or two - there body just didn't need as much, and I suspect that your child is the same.

    And I would ask Jeff to take your e-mail address out of your user name. This is a publicly searchable forum, Google picks it up ALL THE TIME! And carb restrictions for T1 diets is a common search theme, so not only will people here see and possibly send you emails, but so will every other possible psycho on the web.
     
  13. bbirdnuts@aol.com

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    A hand and a shoulder

    The diet my daughter followed was not Dr. Bernstein's diet. I met Dr. Bernstein and spent time talking with him about 1 1/2 years ago.

    She takes 8 units of Levamir twice a day. After lows from the same meal two days in a row my husband finally agreed to change the ratio. He wants to follow what the endro says without making any changes on his own. I want us as parents to use our brain. The endro does not live in my house. If it was her child you bet she would make the change.

    Any suggestions for checking blood sugar after bed? I tried to check blood sugar two hours after bedtime shot and snack. My daughter was pulling away and kicking. What do you do? She was not shaking, but she was extremely sweaty. Blood sugar this am was 233. Night before she was 94 overnight and woke up at 287 the next morning. Endro has not fixed that. Don't know if it can be fixed. When the Novolog wears off blood sugar rises. Not sure how to balance the long acting, correction factor, and the carb ratio. Guess there is not an answer for that. Overall blood sugars are too high and lows 1-2 hours after shot and meal sometimes are too low.
    We have messed up doing corrections. Too many carbs.

    Lee based on what I have written I don't believe my daughter is on a little amount of insulin. We use two meters for checking blood sugar. I know it is not necessary. We only use one meter for the blood sugar recordings and corrections. Just interesting to see the two different numbers.

    My daughter gets to choose what she eats. How do others handle that. What kinds of foods do most of your children eat on a daily basis? We received very little nutritional counseling. They gave us almost no information. They knew what my daughter was eating and I guess because it was such a healthy diet they felt we did not need any information. Now, I do not understand what is best for our children to eat and what foods should be omitted or to watch carefully for with blood sugars. I feel like I know nothing now.
     
  14. StillMamamia

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    Nope, not too many carbs, IMO. Just your meal ratios need tweaking. From your previous posts, it doesn't seem the carbs are the problem, nor the type of carbs.
    You can always post your BGs and carbs and how much insulin (and type) given and what times to get feedback and suggestions.

    As for your daughter shaking, have no idea. Maybe just dreaming?

    You "sound" very anxious in your posts.:cwds:
     
  15. Becky Stevens mom

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    Just me again:) Ive also been married for 21 years and have a very rocky marriage to deal with along with the diabetes. yours is a fascinating story. It sounds like Carolina was on mostly vegetarian foods with fish and turkey. That is an excellent diet IMO, was she eating breads at the time or supplements to get the thiamine and other nutrients that are in grains usually?

    Please dont feel attacked in here. Its sometimes very difficult to put in writing ones thoughts on different subjects. As I said before, we are all here to support and hopefully give good advice to each other. So you daughter is doing ok eating all the different foods then? Im with you, I think maybe she should have introduced a couple new things each week to see how her body would handle it but if shes feeling well and enjoying the different foods then thats good.

    Now about the painful shots. Where does she get her levemir shot? My son Steven gets his lantus in the butt, hes fortunately never had a problem with stinging. I will sometime hit a nerve and cause pain. I hate that and will apologise profusely. For his humolog we use a pen and he gets shots in the back of the arm or thigh. i usually just put the tip of the needle against the skin and then slowly push it in. For me that works better and theres less pain.
     
  16. Kalebsmom

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    Welcome. I have not read through all the posts, but I wanted to welcome you.

    My son is 17 and he eats whatever he wants. The only thing he does not have is reg. soda and orange juice ( he could he just thinks it is too hard on his body, unless to treat a low ).

    You will find that there are some parents that believe in a restricted diet and others, like us, that are very lax about it. My son is on a pump so he can bolus for whatever he eats. I personally do not think a restricted diet on a kid works very well.
     
  17. Becky Stevens mom

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    I was just reading through your last post again. About food and such, we meet with a dietician at least once per year. Our insurance plan demands that we do. I could put down a sample menu here for Steven to give you some ideas of foods that he likes. When eating pretty much anything somethings we have to watch out for are" Fat spikes- these often occur after breakfast if hes had something like cereal, the milk may cause his blood sugars to go high a couple hours after hes eaten.

    Heres a days menu for Steven just to give you an idea what he eats

    Breakfast: 2 slices of whole wheat toast with approx 1tsp of local honey spread on, 1/2 cup of welchs white grape juice (cant be store brand, he'll notice the difference:rolleyes:)

    10:00AM snack: Granola bar (usually peanut butter) teddy grahams, peanut butter crackers, cheese crackers. This usually adds up to 25 carbs for snack

    Lunch: Sandwich on whole wheat bread, meat and cheese and mayonaise. or peanut butter sandwich. fruit and one cookie and milk

    afternoon snack: Steven will often have a non-carb or low carb snack in the afternoon such as, string cheese, cheese cubes, turkey breast, celery stick with peanut butter

    Supper: Chicken breast with honey mustard sauce, sticky rice, broccoli with cheese. fruit and 1 cookie ( I try to keep cookies under 10 carbs)

    nighttime snack: 1/2 cup of low fat ice cream or pudding

    We also have candy day every Friday where the boys are allowed to pick out 2 small pieces of candy for a treat

    Could you ask your endo if you could meet with a dietician or nutritionist to get some advice. It really helps to know how different foods effect blood sugars so that you can dose properly. I feel that we dont need to go to the dietician anymore as we've been dealing with this for 5 years but they keep sending us anyhow
     
  18. MamaC

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    Sounds to me like the PM dose of Levemir is not sufficient, given that the overnight BG is rising after the Novolog wears off. Some kids require a split other than 50/50 (my son's is 60/40).

    My kid is 17, one of the "long honeymooners" previously mentioned. He eats whatever he wants and we carb count.

    Our endo long ago ceded day to day care to me but always remains accessible for consults.
     
  19. Lee

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    I also want to add that it is ok to let your endo make the dosing decisions right now - many new parents (and you ARE new to insulin) email or call in numbers daily or weekly or when there are problems. Usually an endo team needs 3 days to see a pattern, so that is why they didn't change it after two days.

    You will get the hang of it soon and be comfortable making dosing changes on your own. But you really, really, really need a good idea of how insulin works with food, how your child's body reacts to insulin, how your childs blood sugar reacts with food, etc.

    It is also time to refresh yourself on some basics - you need a blood sugar ketone meter, and make sure you have plenty of glucose tabs and/or juice boxes on hand, etc; as well as glucagon - all this stuff you learned about 2 years ago, just making sure that you remember them!
     
  20. bbirdnuts@aol.com

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    A hand and a shoulder

    I extend my thanks to everyone! Keep sending the information my way. This is not an easy rode, but it is our road.

    Becky's mom, the Levemir (which I have been mispelling) shots have all been given in the bottom. Carolina takes her Novolog in the stomach 90% the other 10% in the bottom. She is refusing to try arms or legs. I believe it would be benefical to move around to other areas on the body. I have read or heard (not sure) that when an injection is given in the stomach it works better. True or not? I do not have a clue. Are "fat spikes" because of high fat? Do you use reduced fat foods such as cheese, crackers, mayo, milk, etc? Is Steven on a pump? A big hug and thank you for sharing meals with me. That is very helpful.

    Mamamia, when my daughter was shaking it was 1 hour after dinner and Novolog. She was low and that happened two days in a row after the endro changed the long acting, correction factor, and meal bolus all at the same time. I may sound anxious, but I'm really not. I guess its just that legal/professional part of me coming out.

    MamaC, if the endro changes the Levemir will it make the lows even lower?

    Lee we are faxing numbers weekly now. I asked for a blood ketones meter on the first new visit and the endro office would not let us have one. We were told that is used with young children. We have the strips. I know they are not as accurate. We are prepared for lows. Don't want any, but prepared. Thank you so much for thinking of all of this. I do not have a handle on food. I am clueless if one food affects different from another. I do not know what a significant amount of protein does vs. high fat vs. high sugar vs. grain. Does a balanced meal act better in the body? Like I said, I am just clueless. I think when my daughter went low she had a large amount of protein. I could look that up. I need to know a whole lot more.
     

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