Archived Q&A and Reviews
Kids & Teens with Diabetes
My 18-year-old nephew was diagnosed three years ago with insulin-dependent diabetes. I would be very grateful for advice on two fronts, for my nephew and for my sister. Since his diagnosis, my nephew, ''Charlie'', has been in a state of denial, anger, and withholding around his diabetes. He can go for - apparently - days without testing, refuses to share his numbers with my sister, and went through a period some months ago when his lows, followed by nights of drinking beer with his buddies, brought on seizures on three occaisons requiring EMT attention. He briefly had his driver's license suspended, as required by law, but it has been reinstated. Now he is so worried about lows that he is running high all the time, really high, dangerously, chronically high. He takes his long-acting insulin at night but not the short- acting during the day. He thinks his docs are worthless, hates the medical establishment, doesn't think he has a problem, feels worse every day, refuses therapy, refuses to talk about is, refuses help. Many of his friends don't even know he's diabetic. He clearly has gaps in his diabetic care education and doesn't know how to manage his numbers. And he's supposed to be leaving for college in the fall. So that's problem number one. The seccond issue concerns my sister, who - understandably - is distraught much of the time. My brother-in-law, a brilliant cerebral guy, thinks Charlie is ''smart and will work it out'' and that my sister is a ''worry-wart.'' So he's not much help at all, and just makes my sister feel more alone, more upset. Because Charlie is now 18, he is no longer required to seek medical attention or to reveal his test results to mys sister. She needs a support system (lives in another major metropolitan area far from family) and counseling and community, and my nephew certainly needs support before he brings damage to himself that is irreversible. Any ideas about how to help either Charlie or my sister would be very much appreciated. Very worried aunt/sister
What he's going through is common for diabetic teens, although on the extreme end. I was 19 when I was diagnosed with Type 1 diabetes and went through years of the same emotions: anger, frustration, feeling alone, withholding, etc. For me and many others I have known, the only person who can change your habits and manage your chronic disease is yourself, but having others with the same disease who you can talk to makes a huge difference. When non-diabetics pushed me to make changes or share information about readings, it made me feel more angry and more likely to keep things to myself because they couldn't understand what I was going through, was laden with judgement, and reinforced that I couldn't live a normal life because of my disease. Pushing Charlie to go to therapy could be making matters worse by reminding him that he won't be a normal teenager in many ways. He needs to want to take better care of himself and be empowered with tools to do so, and be supported by addressing his anger and fear, rather than his family forcing control on him.
Is your nephew's health care team good? Could he be getting better support from them, or elsewhere? From experience, there is a huge disparity in health care, support, and education for diabetics. Places like UCSF and some other large facilities have really good diabetes educators who can address his management, and have experience with adolescents coming to terms with their diabetes. He can also be connected to networks (via his healthcare team or a number of orgs), where he could meet other diabetics his age who understand what he's going through and have figured out how to balance being diabetic and a teenager.
Your sister should seek out resources through the ADA or many online forums to support her as a parent of a young diabetic, and maybe she can get advice on other strategies parents have used. Ultimately though, it's going to be Charlie who makes a change for himself. I went through periods throughout my 20s where I took excellent care of myself, and where I did not - these ebbs and flows are common for many young diabetics. My mother tried to push me to take leave from college, not study abroad, and a number of other things because she was not confident in my ability to care for myself - all of her pushing made me react negatively. My father (also a Type1 diabetic) believed that I would figure it out when I had to and would learn to survive on my own, and he was absolutely right. I'm not saying that Charlie's behavior is healthy or smart, or that I as a parent now would be ok with it, but giving him some space (and resources) to make better choices could yield better results. 13 years as a T1
My heart goes out to you and your family. Diabetes is a horrible illness that requires daily monitoring and vigilance. I would say your sister is NOT a worry wort! Diabetes type 1 is nothing to trifle with and as you stated, there are some very dangerous consequences to having very low or high blood sugar. It sounds like your nephew is willing to take at least some insulin, in the form of a somewhat long acting one at night. What I would recomend is getting on Lantus. Lantus is a fantastic insulin that needs to be only injected once and it lasts 24hrs. He will have less peaks and valleys with Lantus. Second, he needs to wear an emergency alert bracelet stating he has type 1 diabetes. This is paramount in case of emergency. These 2 simple things should hopefully keep your nephew a bit safer. Best wishes. a concerned nurse
Visit http://www.tudiabetes.org -- a very thoughtful and active online community of people with all types of diabetes, and their families. You can ask questions, look for people with similar issues, post a profile and list your concerns. You can also find specific information to forward to your nephew's family. Tudiabetes.org was founded by a really good guy from Berkeley, Manny Hernandez (http://askmanny.com/) . . fan of www.tudiabetes.org
I am requesting advice on care options for my 12 year old Type 1 insulin dependant juvenile diabetic daughter during my 3 day hospital stay for my whole knee replacment.
I am a single mom and I also have a college student son who will be temporarily home for the summer (who is not trained in diabetes management to to be primarily rewponsible). I live in a house in Alameda and have a spare bedroom.
The surgery date is Friday Ausust 5 and I have care starting the following Monday August 8. I will be completely out for those 3 days and my daughter has the need for monitoring and the occasional assistance for a high/low blood glucose event. I do not have an existing support system or family that is trained to take over completely. I may have child care that works well with remote medical/nurse/diabetes trained supervison.
I have some financial resources but do not have the money to hire an in-home nurse for the full 3 days.
Any and all thoughts, advice guidance would be greatly appreciated. This is quite a worry for me. Thank you.
I understand your concerns. I have a diabetic daughter who is now 17 and while pretty independent with her care, still needs me for an extraordinary high or low. A couple of suggestions. Is your daughter on injections or on the pump? How independent is she with monitoring her BS and giving herself insulin? Is there anyone in your daughter's endocrinology practice that could be on call while you are out? Can you instruct your son with the basics and provide him the name and numbers of someone to call if he feels over his head? There is an online group called Brave Buddies that is a wonderful resource. You can find them on Yahoo groups. If you want to contact me, please ask the moderator for my email. Good luck! Anon
I have a 13 YO T1 daughter who is well managed. She was diagnosed 2YA this month. Your daughter is welcome to spend 8/5-8/8 with us and we could help her manage her condition. We have an extra room so it would not be a problem. If you are willing to consider this, we could get our families together a couple of times b/t now and then so it would be comfortable for all. My daughter uses an Animas Ping pump, but we've done shots before so could handle that as well. Please let me know if you're interested. We live in Oakland near Montclair.
I think it's time for your college-age son to ''son-up'' so to speak and step up to the plate. He is old enough to be able to help with her care - you shouldn't need to pay through the nose for overnight care. Train him in the diabetes care and expect him to help out with this critical time of your life. Anon
If your surgery is happening during the summer have you considered sending your daughter to camp? The American Diabetes Association runs camps throughout the country. Your daughter can have fun and make friends with other kids while learning to better manage her diabetes while you have your surgery and recover. Financial assistance is available. Here's some links:
General info: http://www.diabetes.org/living-with-diabetes/parents-and-kids/ada-camps/
Find a camp: http://www.diabetes.org/living-with-diabetes/parents-and-kids/ada-camps/camps/2011/
Friend of a Diabetic
I have a 12 year of daughter that was diagnosed as a juvenile diabetic last year. She is insulin dependent and we have spent the year learning how to mange diabetes. She continues to do well in school but I know that this has been difficult.
I am seeking guidance on handling some of the longer term issues. One question is does anyone have a referral for a therapist who can help my daughter deal with the emotional issues of a chronic disease such as diabetes? I live in Alameda so a close referral would be best. or a group? any other suggestions? we do know about diabetes camps, but any other suggestions or thoughts would be most appreciated. thanks from Carol
My daughter was airlifted to Children's when she turned 12 and diagnosed as Type 1. It has been a difficult ride but we are fine. She is 17 and planning to attend college out east. She plays tennis and takes modern dance. She does not use a pump. Sometimes it has defined our day to day life and sometimes it seems to run in the background of our life but it is always there. I have needed therapist several times to get through but my daughter refuses to see anyone or go to any diabetes camps etc- she says she does not want diabetes to define her.
I went to see Jessica Bernstein in Alameda. She is a PHD from Berkeley and did her thesis on diabetes and a documentary called Blood and Honey about different cultures and ways of living with a chronic illness. She is also a type 1 Diabetic. I suggest contacting her: Jessica Bernstein jessica [at] bloodandhoney.org
Good luck and if you need to talk feel free to contact me. maybe I could get my daughter to be a mentor- email pal to yours? My daughter is very responsible, sensitive and mature. I believe that diabetes made her grow up fast- while other teens worry about boys/clothes she says she was worrying about staying alive and healthy.
It is a very demanding illness. I often fantasize about creating a ''resort/spa'' where diabetics could come and let someone else take over for them just for a week- so they could actual not think about it.
I wish you strength and courage and above all find a sense of humor about it and use it often. Laugh when you can and let go when you can. V.
Hi there! I was diagnosed with type 1 diabetes when I was 14. It's overwhelming to go from a happy sugar loving teenager to having to be insulin dependent and on a strict diet. I'm now 29 and a new mom. I would love to offer myself as a support for your family and daughter. You might also want to try seeing if the JDRF can provide some references for a support group or even your Endocrinologist may have some names of groups. Please feel free to e-mail me if you want to meet up or just have a phone conversation. Take care! gypsysoul
My heart goes out to you and your daughter; diabetes is a tough disease! I was diagnosed with Type 1 diabetes when I was 16, and have lived successfully, happily, and actively as a diabetic for over 20 years now. I'm not going to lie, though: it isn't always easy.
I think the first major obstacle your daughter will face is puberty. Surging hormone levels can wreak havoc on blood sugars, and takes a lot of active management to keep things in line. I would like to recommend diabetes educator Sharon Palmer to help with this end of things - she works at both Kaiser and through Alta Bates, I believe, for people with PPOs. She is AMAZING. I worked with her when I transitioned to my insulin pump and through my first pregnancy, and credit her sensitivity, perception, and general positive nature to my success with managing my disease and maintaining an A1c of less than 6%.
I don't know of any groups in the area, but I do highly recommend looking into a day camp for the summer, which will be less stressful, medically and emotionally, than an overnight camp where worries over bloodsugar issues may be exacerbated.
I'd be happy to chat with you if you want to email me privately, but here are my suggestions for what helped me as a teenager:
1. Don't let teachers, friends, coaches, etc., treat your daughter any differently. The more people singled me out after my diagnosis, the more fragile and sorry for myself I felt. However, when I was given opportunities to ski, rock climb, etc., and treated as any other teenager would be, I thrived.
2. Try to get your daughter on an insulin pump if you haven't already. It is so much easier to manage bloodsugars and A1c levels this way!
3. Try not to hover. Your daughter was dealt a crappy hand, but she's the one who's ultimately responsible for playing it well. Give guidance when you can, but let her be responsible for her own health and well-being; showing her that you trust her to take care of herself will empower her to do it better.
4. Make exercise a key component of your daily routine. In fact, if she can exercise after most meals, she can dramatically reduce her need for insulin, as well as insulin resistance (that's easier said than done, but walking/biking to school is one great way to implement it).
5. Don't blame yourself! My mom felt SO guilty about having a ''sick'' child, and it really affected her emotional health for a while. This is in no way your fault, and do your best to take care of yourself and set a healthy example for your child. Hope this helps a bit! elkani
Check out insulindependence.com. They try to arrange mentorships for young people and adults with diabetes through sports and outdoor adventures. Having become a Type 1 as an adult, I can't speak to challenges of being in junior high with diabetes, but have gotten to know other Type 1s in the Bay Area through the Triabetes group. Seeing other people manage their lives with the disease has been so helpful and encouraging. Bethany
My name is Heather. I have had type 1 diabetes since I was 11 and am 20 now. I went through everything your daughter is going through. My parents also sought out therapy for me. It was helpful in some respects. However, being a child with diabetes is hard, and a therapist who doesn't know what diabetes is or what it is like can offer little help. Connecting with other kids with diabetes is going to be the most important thing for your daughter right now, not a therapist. This is not how i view the situation now, but at the time i resented my parents for suggesting therapy. Have you tried offering her a safe place to complain? It is really important. Diabetes is a condition you have to think about every hour, and when you never had to think about it before it drives you crazy.
Also, going through puberty with diabetes is excruciating for the child and the parents. You both will need people to talk to, people who specialize in life with diabetes.
Now, I have been a volunteer diabetes mentor for pre-teens and teens since I was 16. I would be 100% willing to call or visit with your daughter. This can be a one time thing, or we can meet/talk regularly. I do this because i know what it is like to struggle everyday with diabetes as a kid and not have any one to connect with who truly understands the way only one with diabetes can. If you are interested, send me an email and we can arrange a time to meet.
I wish you the best, and your daughter the best in her diabetes management. Heather
My son, who is now 13, was diagnosed with type 1 diabetes in January 2009.
After a short stay at Children's Hospital, his pediatrician recommended that he change endocrinologist's and move to treatment with Suruchi Bhatia, MD through Sutter Health (CPMC). This was the best choice we ever made regarding his treatment.
Dr. Bhatia has an amazing team that meets with my son at every visit, including a counselor (MSW), pediatric nurse specialist, a nutritionist. Dr. Bhatia is so personable and relates to kids, especially teens, is such a connected and down to earth manner that she is truly empowering. This was one of the main reasons our pediatrition recommended the move, especially as adolecence approaches there are lot of challenges for diabetics with changing hormones and Dr. Bhatia is highly skilled at helping kids through these changes.
Cathy Portje-Richardson is the counselor that works with my son and she is a kind, gentle advisor but is excellent at asking the right questions and giving advice that can really be heard.
Finally, I want to also recommend the Omni Pod pump. My son has been using it for over a year, and the freedom the pod provides, especially for an active life, with no tubes to get caught up in has been amazing. East Bay Mom
Would greatly appreciate advice on the following: My sister moved far from home many years ago when she married my brother- in-law, who comes from a huge family. In June 2008, her middle son, one of three boys, was diagnosed with Type 1 Diabetes not long after his 15th birthday. For some months after his diagnosis, ''John'' was in the ''honeymoon'' phase of the onset of his disease. That phase is now over and he is fully insulin- dependent. John is a smart, stubborn, willful young man. According to my sister, he treats his diabetes as though it is a minor inconvenience. The upshot of this is that he is not testing his blood sugar levels through-out the day (sometimes as little as once every FOUR days), not taking his short-acting insulin at mealtimes, is taking the long- acting insulin at the end of the day but I think his dosing is based on some real guess-work on his part. He goes to see his medical team every three months, thinks they are all idiots, has a terrible attitude about his medical education, and his numbers indicate that he is managing his diabetes very poorly. He is also a new driver; drinks a lot of beer at home on the weekends, and I think likes to get high on pot now and then. My brother-in-law thinks John is smart enough to ''figure this out on his own'', and doesn't want to intervene in any way ''at the risk of alienating him.'' My brother-in-law is a famous trial attorney and world-class debater. My sister is beside herself. No support from husband, worried sick about son, and far from home. I would really really like to help her here and have no idea what to do or offer. She's worried about joining a support group for fear of feeling even more inadaquate. Meanwhile, her son's reckless behaviour is costing her dearly. I've suggestd taking away car keys until things are better handled medically, but they feel this is too ''punishing'' and would back-fire. Any advice would be gratefully received. Very concerned big sister
This is a tough one, but there is a moral responsibility here beyond just your sister's need to care for her son -- someone who is not managing his diabetes well and is drinking is a real hazard behind the wheel. At the least, driving privileges should be removed until the disease is managed properly. The lawyer dad should be well aware of what could happen in an accident situation. Other than bringing this to their attention, however, I don't know what you can do. Maybe bring in another friend of the family who has the dad's ear and can speak authoritatively about the dangers and responsibilities? Someone the boy respects? concerned
Part 1 - I think there are a couple of issues going on here, not just the lack of Diabetes management on your nephew's part.
I think the first issue is that the boy is a teenager. 15 is already a very difficult age to deal with as a parent, in my opinion, because this is typically the age that ''children'' feel like they should be the one's to decide for themselves, make their own choices, etc. In other words, be the ones in control. I went through this with my kid when she was 15.
Diabetes is also about control. It's an incredibly difficult disease to manage, and it's very difficult to be on the receiving end of others, whom are not Diabetic, telling you how to take care of yourself. It's not like other diseases that typically show effects right away &, unlike Type 2 as well, Type 1 can be much more insidious, & therefore it can be hard to fight something you won't see the effects of for years to come, if that makes sense.
I'm Type 1, and in my experience, I have had phases of excellent control, and terrible control. But it is a difficult undertaking for anyone, let alone a child going through such a difficult developmental stage. If he had been even 5 years younger, my guess would be he would manage himself differently and much better than he does now. I'm an adult who's been living with this disease for years, and dependent on what's happening in my life, my Diabetes management can be the better or worse for it.
That all being said, as a parent I can understand the difficulty in watching one's child NOT doing the things s/he should. And at 15 he has no comprehension of the detrimental effects that his mismanagement of his health can and undoubtedly will have. As a Type 1 Diabetic, I can also understand his feelings of resentment, his feelings toward his doctors. The combination of the two is, unfortunately, potentially dangerous.
Probably not what you or your sister want to hear, but I agree with the Dad, and would back off. Restricting his use of the car or other punitive measures will only push him further away. He may feel like he is being punished for having this disease instead of the bad behavior he is displaying, separate from his Diabetes, and of course it's not his fault for having it. My husband stopped being the ''Diabetes Police'' years ago, and it's made me much more conscious of my own actions (or lack thereof as the case may be) and I no longer resent him for trying to ''tell me how to manage my disease.''
I would recommend that your sister find out about the insulin pump for her son, if she hasn't already. I have worn one for over 10 years and, whereas it's not for everyone - it's attached to you 24/7 - it has allowed me to live a much less restricted life... I can eat when I want and what I want, within reason of course, as I have to watch what I eat just like everyone should. Alcohol is not forbidden for Diabetics by the way, but since he is 15 and under age, that's a separate issue, as is the smoking pot.
I'm very sorry to hear about your nephew's situation and I truly hope that he can come out on the other side without much damage to himself or anyone else. I feel very sorry for your sister but I would suggest that it's not that her husband his not supporting her but may have some insight to what it's like to be a 15 y.o. boy.
Support groups for Type 1's and relatives of Type 1's are very difficult to find but I would be surprised if she were made to feel ''inadequate'' - she would very definitely feel supported, and I would recommend it. But make sure it's specifically geared to Type 1 and not Type 2 or a combination. They are completely different diseases and are not treated the same. You may pass on my email to her if she would like to ask me any questions. A
If I read your post correctly, your nephew was diagnosed at age 15 in 2008. So now he is 16, and he is drinking and smoking on the weekends, and his dad doesn't want to take away his driving privileges... the reason being he would then feel bad about his diabetes???? I don't get this logic. If he didn't have diabetes, I assume (I hope!!) they would not allow him to drive if he was drinking and getting high. So why does diabetes earn him a pass on this very dangerous behavior? It seems to me that he's getting a very wrong message here. His dad's judgment seems incredibly poor. If I were the mom, I would talk to my son's doctor and enlist his help. And I would do whatever I possibly could to make sure my son did not operate a motor vehicle while physically impaired. Does this dad want his son to kill someone? I don't get it.
Dear ''Very Concerned Big Sister'' My daughter was diagnosed @ age 9 (she's now 24); _I_ had to become the ''diabetes police''. It took her some time (years) but she became more responsible (by her teens). I think the nephew should go to a therapist, to help get his head around his new ''identity''. Also: if he'll go, Joselin has a GREAT summer camp for boys w/diabetes - he'll be ''just like everyone else'', instead of the ''freak'' that has to test/inject all the time (my daughter went to the girls version for several years). Or, if a therapist isn't an option - at Mt. Sinai in NYC, my daughter worked with a diabetes educator, to learn about living with it/managing it. (I went, too, but separately.) Is that avail. to your sister/nephew where they live?
There should definitely be NO DRIVING and NO ALCOHOL unless he's compliant - and he needs his Dad to be a parent, not a 'buddy'. Your sister's right to be so worried. Get the kid a medic alert bracelet or pendant, too. And the A.D.A. (Amer. Diabetes Assoc.) has helpful resources. Your sister's instincts are right - tho' it's a b*tch being the ''Diabetes Police'', somebody's got to do it! Good luck. --Been There
Reality check -- your nephew's behavior could cost someone else their life. Driving while at risk of a diabetic coma (or drunk or high) is against the law as well as totally unethical. Taking away his keys is ''too punishing''?!? Wow -- please let me know what streets he's driving on so I can keep my loved ones away!
If your brother-in-law is an attorney, he should know that he and your sister could be liable big time if your nephew injures someone while driving. Both parents need a wake-up call!
Two thoughts. I have a friend who was pretty vigilant about taking care of his diabetes, and yet he still somehow had an episode (high or low blood sugar? I don't know) that caused him to black out while driving on the *freeway*, overturning his vehicle and totaling his car. If the kid is not responsible enough to handle his medical issues he is not responsible enough to handle the driving of a vehicle.
I'm a believer in tough love and it sure sounds like this kid needs some boundaries! (regularly drinking? smoking? and underage?!!?)
One other thought -- I have another friend who has managed her diabetes with a pump. It sounds like this would provide more regular insulin for him. Maybe he also needs to be more involved with his medical care -- if he thinks those people are ''all idiots'' they should do some shopping for new providers if at all possible. For a teen the rapor with the medical team means a LOT. -tough love
I'm so sorry to hear about your nephew. My daughter (now 16) is also a type 1 diabetic, though she was diagnosed at age 4. It is often a much more difficult diagnosis to accept as a teen than as a youngster. I would encourage your sister to seek out any and all support she can find as this is a very challenging disease to contend with--emotionally, medically, psychologically, socially. I find that even now, 11 years after diagnosis, I struggle with my own feelings of profound sadness, parenting anxieties, fears for my daughter's future and her well being. I would encourage both parents to become very educated about the disease and its management--their son needs a unified front. I'd also suggest that the parents insist on basic diabetes management protocol be followed (just as they would any other type of behavior for children, with consequences for lack of compliance). Driving is a huge issue for diabetics and if their son is not managing his disease, then he should not be driving. This also applies to drinking. Alcohol and insulin can be a deadly combination if he does not understand how to drink responsibly. The family needs all the education and support they can get from their medical team. Diabetes is not the kind of disease than one ''figures out on his own.'' Good luck to you all. anonymous
Hi there! Wow, how tough, and ...not totally unexpected for a teen with a life-threatening condition who wants to be cool and just like all the other kids. He should get evaluated for an insulin pump, so that he;'s not guessing about his sugars, and can do the remote programming thing. And he AND his mom AND his Dad need to hook up with a support group ASAP. BTW, I've seen other teens (I'm an MD) where the Mom can't get control of the blood sugar, and when I talk with the teen privately, they say, Please don't tell my mom but I have pizza, coke and snickers with the other kids at lunch. It's worth it to them to be ''just like the other kids'' and at that age they don't realize everyone has some private issue. Also, I think there's a camp just for teens with diabetes, it may be run by the Diabetes Association, that's fully staffed with MD's, RN's etc, but it's a normal camp and they do fun camp stuff but most of all they feel less afraid and more normal. ''John'' is in the phase of grief known as (reckless) denial. His family doesn't have to be. Sincerely wishing you the best
I was reminded by your story of when I was a teenager and a friend was diagnosed with diabetes. He also engaged in a lot of reckless behaviour, and I remember hearing him say as an adult that after he was diagnosed, he didn't care if he lived. I would not describe it as suicidal, but rather he did not value his life at that time. That coupled with the general immaturity of teenagers in thinking nothing will happen to them turned into engaging in activities that could have resulted in injury. What I also remember him saying was his regret that his best friend frequently was drawn into his antics, and the thought that he could have been seriously injured also. Perhaps the stress and anger of being diagnosed with a disease that will always impact your nephew needs to be explored with a competent therapist. I can only imagine how worried your sister must be, but I don't thank any amount of nagging on her part will get through to her son. I think he needs a therapist who can help him work through this and see the potential damage he is doing to himself, and possibly others. Good luck
My friend's 2nd grade son was just diagnosed with diabetes. They are still trying to process this news and to figure out how to handle the day-to-day challenges, particularly with respect to how to handle the monitoring of his blood sugar level / administering insulin at school. Like probably most of us, their school no longer employs a full-time nurse. They both work 30 minutes away and really don't think it's feasible for them to take time from work every day to visit the school - their son also is not mature enough to handle the blood pricks and insulin administration n this own. They would appreciate any general feedback or advice from other parents of young diabetic children, as well as information on how their schools have been able to assist. Grateful for any input
I'm so sorry to hear about your friend's son. My daughter, now 15, was diagnosed at 4 so I totally understand the full range of fears and emotions the family must be going through. My first thought is to get in touch with the Diabetic Youth Foundation. This nonprofit organization has a family camp program designed for families with diabetic children. We went the first summer after our daughter's diagnosis and it was a Godsend. Our daughter has been going to camp every year since she was five. It is a loving, fun, nurturing, educational, spiritual experience. At family camp you meet other families with the same experiences and the sharing of information and the emotional support are phenomenal. Also at camp, the child might learn to do his own blood testing--the influence of other children testing under the encouragement of fantastic counselors could be just the thing. Being able to test before school starts would be a huge help. [Diabetic Youth Foundation, 5167 Clayton Road, Suite F, Concord, CA 94521 Phone (925) 680-4994 Fax (925) 680- 4863 E-mail: info [at] dyf.org]
Please ask the moderator to share my email address with you if your friend wants more info. It's too long to post in the newsletter. another mom to a diabetic child
Have you looked into an insulin pump for your child? Many young children (and adults) wear them with great success. While your child may need to carry back-up supplies (insulin * needle), the pump eliminates injections and is terrific for better management of diabetes.
I am 36 and have type I; I've worn a pump for almost 8 years and I love it. There are good diabetes programs locally, but I can speak highly of the pumping program at UCSF Diabetes Clinic. They have excellent education and medical programs to get your family started. Pump Fan
Give your friend this contact info for a local support/information group for parents of kids with Type 1 diabetes: bravebuddies [at] yahoogroups.com
Your friend should also contact DREDF in Berkeley for guidelines on getting her son's medical needs met at school. They are at the forefront of fighting for the needs of kids with diabetes - they are located on 6th Street in Berkeley. Their phone number is 510-644-2555.
Her son should also have a 504 plan (for children with health needs) to further outline the responsibilties of the school. She should contact the principal at her son's school to get this process started.
The way it works at my school is that the child's teacher takes care of the reminding and keeps an eye on things. One word of caution: one day I happened to be in the office, when the kid was super low. The secretary was rushing around trying to find his glucose tabs, and I said, jeez, give him this Hershey bar mini while you're looking! She snapped at me, ''That#s the wrong kind of sugar!'' And I think this is totally wrong -- my dad and grandmother are and were diabetic, and in an emergency, a piece of candy is better than nothing: actually, I think juice or even Coke would be better than the candy in the absence of anything else. The bottom line is that the school should already have protocols in place, and it would be reall,y really smart for the parents to make sure that not only the classroom teacher knows what to do, but the gym teacher, the music teacher, the office staff, and the yard duties. kevin
I posed your query to my cousin as she has quite a bit of experience here. She has managed her juvenile diabetes for about 35 years now. She grew up around the Diabetic Youth Foundation's camps and then became an employee as an adult. She is also a nurse. Here is her reply:
[Although I wish I could give an easy answer about the state law and children's rights in school, etc, this subject is a rather hot topic at the moment. In the past, parents could train a willing teacher or school employee to check blood sugars and give insulin shots at school when the school nurse was unavailable. Unfortunately, the nursing association was not comfortable with non-nurses administering insulin because it technically is still under the nurse's licence. Which, as a nurse, I understand, as a diabetic, I find it infuriating! Parents, family members and friends take care of diabetes 24 hours a day while at home, they don't need a nurse to come in and take care of them.... anyhow, I could go on all day.....but this whole battle ended in the supreme court last December and they judged in favor of the nurses.
So, now things are a little more difficult because diabetes falls under the american disabilities act and it is still the school's responsibility to provide a nurse (easier said than done). Parents are finding it really depends each individual school. Best bet for a parent seeking information would be to contact the Diabetic Youth Foundation. They work with another non-profit who specifically deals with all kinds of special needs and circumstances with students and schools (I can't remember the name at the moment). they can also provide resources of how other parents are dealing with these issues.]
Our son was diagnosed diabetes (type 1) three years ago when he was six and is now nine. He attends BUSD and is has the nurse check him twice a day. The school staff has been great - believe it or not. He recently decided to switch to a pump which has been challenging and rewarding at the same time. Feel free to contact me. micah
My 11 year old son was diagnosed in February with Type I diabetes. We are in West Contra Costa SD. The week after his diagnois I had a meeting with the school principal, the school county nurse and the 504 plan coordinator. I have been so impressed with the immediate response and accomodation for my son. I was very pro-active to get him the help he needed. Luckily, there was an aide in his classroom, there to assist another child with special health needs, that can monitor my son's testing. In addition, there is a plan in place for one of two LVN's to come to school if insulin administration is needed. In addition, the school district nurse trained my son's teacher and the school secretary to assist him if needed. My son is one of three diabetic children at his school, the youngest being in kindergarten. The school district nurse once went to school herself to administer my son insulin, when the LVN was not available. Neither my husband or myself have had to leave work for any diabetic-related issues since his diagnosis, knock on wood
I encourage your friends to ask their school district for what they need in regards to their child's glucose monitoring and insulin administration. It gives me great peace of mind that there is a pro-active plan in place to manage my son's illness at school and I appreciate the support of the committed professionals who are there to help. 504 Plan Mom
We have a daughter in middle school with recently diagnosed, diet controlled, Type 2 diabetes. Eating a diet that is quite different from that of her peers- especially in terms of reduced sugar and carbohydrates- is essential to her health. Home is fairly easy, but school and outside activities are very difficult. One strategy we've found is to pack meals that she can eat and make them as tasty and varied as possible (but any cookbooks and/or recommendations would be welcome). We are also doing our best not to be the ''gatekeepers'' who are responsible for restricting her diet, but this is can be challenging too. We\x92re very interested in hearing how other parents of children with food restrictions- especially diabetics- help their kids resist eating foods that will harm them. Thanks much! Parent of a diabetic
The school may be helpful in supporting your child's dietary choices by having a classroom discussion about diabetes. Middle school is where a lot of health education should occur anyway. My son brought his lunch in kindergarten and when he was teased by the other kids (who brought lunchables and other skeletonized foods), the teacher had a class meeting to discuss how commentary on others' foods is impolite. Eventually, some kids ''warmed up'' to his thermos lunch, asking for tastes since it smelled so yummy!
As for helping your daughter come to terms with her illness and understanding how important dietary management is, education is critical. I had a 62 year old client with newly diagnosed diabetes (fasting glucose over 300). Within a year of his diagnosis and with a combination of exercise and a low carbohydrate diet (no refined foods), he told me he was no longer diabetic!
Once she has to take medication for her disease, the possibility of reversal diminishes substantially. Nori Hudson, NC
In addition to what I earlier wrote, here is an article that might be useful in educating your child. I just got it so it is timely:
The New York Times (www.nytimes.com) January 9, 2006 Bad Blood Diabetes and Its Awful Toll Quietly Emerge as a Crisis
By N. R. KLEINFIELD
It costs nothing to log in to read this article. Nori Hudson, NC
As I dietitian and a parent (I don't have a diabetic child) I felt compelled to respond to your post. You don't say if you or your daughter have received any kind of diabetes education. If so, I'm curious to hear what kind of info you've gotten. Have you heard about carbohydrate counting? If your daughter was capable and willing to do this with your help, she could include her favorite junk foods, albeit in smaller amounts than she might be used to, and still manage her diabetes and weight.
Avoiding an overly restrictive diet plan can keep feelings of deprivation at bay and stave off binges. I like carbohydrate counting because no food is off limits and this may be appealing to your teen. I understand your concern about becoming a food cop and agree it's best to help your daughter be as engaged as possible in her diabetes management.
Have you checked out www.diabetes.org (American Diabetes Association) or any other reputable websites? While there's a lot of great free info out there, you and your daughter should consider a consultation with a registered dietitian. You can get referrals from the American Dietetic Association (www.eatright.org).
I work at a Health Center, have been providing diabetes education for over 17 years, and while I don't have a private practice, I occasionally do private consultations. I didn't respond to your post to promote myself, but if you are interested in a consultation, feel free to email me. Good luck. Arinna
My 4.5 year old was recently diagnosed with diabetes. We are doing fairly well with our current preschool situation with respect to monitoring her blood sugar levels (at lunchtime) and making sure she eats the right foods at the right time in the right amounts. Our big concern is what to expect/request when she starts kindergarten in the fall. If anyone is a parent of a young diabetic child, I'd love to hear from you. Any advice or suggestions regarding school, afterschool programs, sports, principals, teachers, etc., would be greatly appreciated. I currently work fulltime and don't know whether I should prepare to cut back my hours in order to make sure I'm more available in case the need arises. Thanks.
A friend's daughter was diagnosed with diabetes at 6 yrs of age. They recently attended a 4-day workshop at UCSF geared toward pediatric patients to help them and their families cope with living with diabetes. They were very impressed with the quality of support available through the University of California San Francisco Diabetes Center (415) 353-7789. They worked with and really liked Steve Gitelman (he's a pediatric endocrinologist) and Maureen McGrath (a diabetes educator who is Type I herself). The center has a tremendous number of resources. Leslie
Adults with Diabetes
Hi, we are moving back to the bay Area this summer. My husband is a type 1 diabetic. We are looking for both a good primary care doctor who is familiar with diabetes and a diabetes specialist--we'd be happy to got to UCSF for the specialist but it would be nice to find a primary care physician in the east bay. We have good insurance. thanks so much for your suggestions. worried spouse
My young adult son sees Dr. Elaine Wong, and she has been a joy to work with. She is an endocrinologist who works in a group with some fine internal medicine docs, too. My son had some serious issues, after his type 1 diabetic ''honeymoon'' was over, and she was always patient, NEVER judgmental, has a pleasant and encouraging manner, and in short, has done a magnificent job helping my son work with his type 1 diabetes, and accompanying hypothyroid condition, as well as helping him to overcome a very pronounced vitamin D deficiency.
In conjunction with this, my son works with Jessica Bernstein, a psychologist who has had type 1 D for 38 of her 39 years. She's great, too. 510-654-7785 She is also a documentary filmmaker and is making a film about how chronic illness is viewed and treated in different cultures around the world. See bloodandhoney.org.
Finally, Leah Statman for jin shin, if you are open to eastern energy work (along the meridians) -- she is excellent! 510-525-5080 Best wishes! savvy mom, re: type 1 diabetes
Just moved to East Bay (Montclair section of Oakland). Looking for a physician specializing in internal medicine or endocrinology. Need someone to help me manage my diabetes and monitor the other meds I take. db
I've seen Grace Eng (endocrinologist) in Oakland several times now and she has been great. She's young, she listens, and is up on the latest diabetes treatments. She also doesn't overbook so I'm able to get in to see her when I'm scheduled to see her. She has helped me transition quite easily to using a pump. She is a block off Broadway at 350 30th St., 465-6700. Good Luck. anon
I am diabetic, and have recently had difficulty managing my blood sugar levels. My primary care physician has not seemed particularly concerned -- to the point that I have found it pretty frustrating, as I would really like to be aggressive in treating this (I'm pretty young, with a toddler to care for, and would like to be part of his future!). Any recommendations for a primary care physician (Alta Bates Medical Group) who's good at working with diabetes?
I doubt you will find that there is a primary care physician who is a specialist in diabetes. As a type 1 diabetic, I too have found it increasingly frustrating that there are not more doctor's in the area that deal with this. But really what you need is a specialist, namely an endocrinologist that specializes in Diabetes Management, in addition to your PCP. The specialist is not one for taking care of your basic health needs, nor is the PCP meant to be the specialist, and actually I find it better that I have both to balance it out.
For ABMG, there are only two that I know of--the best one, my first doc, moved away five years ago, leaving most if not all of his patients to Randall Ammon, in Orinda, or Michael O'Conner in Pinole. Dr. O'conner is straitforward and his staff is ok. I think you have a bigger concern with your PCP--that he/she is not so concerned about your overall health enough to recommend you to someone--it's not his/her job to specialize in your diabetes management, but it is certainly his/her responsibility to recommend someone who can. I would be looking for both a new PCP and Endocrinologist if I were you. Please feel free to email me with any other questions/concerns you might have.
As the mother of a diabetic child, my sense is that you would be better served by getting a referral to see an endocrinologist. Our daughter has both a pediatrician and an endocrinologist. Diabetes is a very complicated disease, compounded by the fact that the patient has to be his or her own doctor 99% of the time making personal choices all day long about insulin dosage, food, exercise, etc. In order to do this well, you need the information, education, supervision, and encouragement that can best be provided by a diabetes educator and endocrinologist. I would be leery of seeing a primary care physician for diabetes care simply because a generalist cannot be as up to date as a specialist. There are new insulins on the market, insulin pumps with very sophisticated software systems, and various strategies that change all the time. In order to get the best care possible, you need to see someone who specializes in this disease. Many primary care doctors may tell you that they can treat diabetes, but their level of understanding may not good enough. The other thing I would suggest is that if you are not already doing so, be sure to get a hemoglobin A1C test on a quarterly basis. This is your best indicator of how well your blood sugars have been maintained for the past 2-3 months. Good Luck.
Does anyone know about the diabetes and pregnancy services available at Alta Bates?
I'm new to the East Bay and wonder if I should keep using my OB/GYN in SF. I was very pleased with the Sweet Success program at CPMC (I gave birth there) and felt their service was great and taliored to me. I would love to switch to a doctor on this side, but wondered about how Alta Bates supports pregnant women with diabetes.
thanks for your thoughts... Diabetic Mom
My experience is only with type 1 diabetes--not sure what your diabetes profile is. I delivered my son at Alta Bates 2.5 years ago, but was a patient at East Bay Perinatal, so my only contact with the hospital itself was for the birth and the non-stress tests leading up to it. I'm currently pregnant with my second and am back with EBP. I was/am really happy with EBP and my doctor there, Janet Goldman. Dr. Goldman is extremely familar with diabetes in pregnancy and very no-nonsense about it. The practice also has a couple of dieticians on staff and I've seen them off-and-on throughout my pregnancy. The best thing about EBP, though, is that they have ''prescribed'' me the Matria service, which is a telephone nursing service that I check into daily to report my sugars. The nurses there are on call 24-7 to answer questions, and help me adjust my insulin as my needs change. (I'm on a pump, which I HIGHLY recommend during pregnancy if you have Type 1.) Whether or not you can qualify for this service depends on your health insurance, though.
The result of all of this? A really super healthy baby boy first time around, and a perfectly normal pregnancy so far with #2. Best of luck! If you'd like to talk to me directly, please ask the moderator for my contact information. Type 1 mama
The care I received at the Alta Bates perinatal group (aka Sweet Success) during my pregnancy was extraordinary. I experienced the doctors and staff there as my committed partners in delivering a healthy baby despite my diabetes and other medical conditions. My doctor was Janet Goldman. I saw her for a pre- pregnancy consultation, then worked hard to get tight control of my ''numbers.'' During the pregnancy, she saw me almost weekly. She also had me followed closely by a nutritionist. There were many, many ultrasounds and other tests--it helped that I had a PPO and not an HMO. It might seem odd to say that I looked forward to my visits to Alta Bates perinatal, but I did. Everyone was really lovely, and the care was first rate. I always felt respected, fully supported, and like the doctors and staff were right on top of whatever was next. Of course, the proof of their skill in caring for me is my child, who came into this world healthier than the babies of most non-diabetic mothers. I just couldn't recommend Alta Bates perinatal more highly--they're terrific. One unfortunate thing is that they don't typically do the delivery--the staff doc at Alta Bates does, unless you have a c-section, in which case the parinatal people do it. --Diabetic Mom
My dad was recently diagnosed diabetic, and I've been trying to find sugar-free foods for him (i.e. sugar free desserts)and it seems hit or miss. (The folks at most grocery stores don't even know if they carry sugar free items, which seems really strange to me.) I know there are other diabetics out there. Where do you find the good stuff? There was a recent discussion about Splenda, which doesn't seem to be on the archives. Where do you find that? Does anybody know more about the negatives about splenda? Thanks Janet
With a brother and Mom who are both diabetic, I've basically been on a diabetic's diet since I was a kid. Rule #1 - instead of looking for specific brands of food, look instead at the carbohydrate and sugar contents of what you are buying. Brands that cater to diabetics often charge more and sometimes have more sugars than regular brands. I have found that there are excellent sugar free ice creams made by Eddy's and Lucerne with very low sugar and carb contents. Also, with the new Atkins craze, there are also a ton of affordable and delicious pre- mixed baked products (brownies, muffins, cakes) with very low carb and sugar contents. I find many of these at Trader Joe's in Emeryville or you can even find them on line at Drugstore.com. Trader Joe's also has GREAT low-carb p! asta (imported from Italy). And, of course you can invent your own recipes, using soy flour to replace white flour and sugar substitutes to replace sugar or honey. Good luck and enjoy the excellent low sugar options that are out there for your dad
Hermann's Chocolate Lab on Main Street in Templeton, CA has a huge selection of really yummy sugar-free chocolates. You could probably mail-order some! I've given lots to diabetic relatives and they've all said they were delicious. anon
I'm a recently diagnosed diabetic myself, and have become somewhat of an expert on this. It's pretty complicated. Most grocery stores carry a very small selection of stuff specifically for diabetics -- and not much of it is what I would call ''good stuff.'' There are usually sugar-free candies, some reduced-sugar cookies, ca! ke mixes, and a few other things. In addition, many grocery stores now feature a ''low-carb'' diet section (Atkins has been helpful for us diabetics), with somewhat better stuff, including those ''meal replacement'' bars (in flavors like peanut butter chocoloate), which are OK. Also, most supermarkets have no-sugar ice cream. You can also find no-sugar stuff at places like Godiva candy stores. A couple of things to note: A lot of the Atkins stuff does contain aspartame, which there may be reasons to avoid. I can't eat either the no-sugar chocolate or ice cream, as it tends to be sweetened with sugar alcohols (listed as sorbitol, malitol, xylitol, etc.). If one eats a lot of this (and if I eat any), one can get stomach cramps and diarrhea.
There doesn't seem to be a lot of negative press on Splenda (yet); the very small amount of stuff I've seen has been vague, and not really based on solid research. So for now I'm letting myself use it. My best luck has come from making stuff myself. There's an additive called ''Stevia'', 300 times sweeter than sugar, natural, and it has been used in Japan for years and years (apparently with lots of safety studies etc.). It works pretty well, although a lot of it does tend to make things taste funny. There are some odd politics surrounding this, which have led to it not being able to be sold as a sweetener in the US; instead, it's sold as a ''dietary supplement'' in health food stores.
One can also use sugars that are mostly or entirely fructose (you can get either plain fructose or some stuff called Agave syrup at Whole Foods, in addition to Stevia). While these are still sugar, they are apparently absorbed by the body more slowly than table sugar, and so somewhat better for you. Also, they are sweeter so you can use le! ss of them. If you'd like, I can send you some information provided by my nutritionist, as well as some simple recipes for sugar-free dessert items. Feel free to email me if you'd like this. kd
My son has type 1 diabetes, so I have had a very steep learning curve re: carbohydrates, glycemic index, and the body in general in the last couple years since his diagnosis. The first thing to note, and make sure your dad knows this, is that even most sugar free foods still have carbs. They will raise the blood glucose, although probably more slowly than their sugar loaded counterparts. You can find sugar free candy of all types, including popular brands like reeses, red vines, etc. in Longs near the pharmacy, and sometimes in grocery stores in the candy aisle. You can also ofte! n find sugar free juice and cookies in most grocery stores, and the packages will state that they are sugar free. Look at the carb info, though. Trader Joe's has a brand of sugar free candy in their candy section. They also have sugar free juice and obviously, diet sodas. I do reccommend splenda, because is tastes better than aspartame, and so far I haven't heard any negatives. I will look at the responses you get on it, because I'd also like to know if there are any cons to Splenda. You can buy it by the box in Andronico's, and probably Safeway, too. Sugar free jello is actually carb free. Type 2 diabetics have a different situation than those with type 1 because often they don't take insulin, but treat the disease with excercise and diet. My son can eat sweets when his bg is in range because we can just give him the necessary insulin through his pump. You dad proba! bly can't do that with as much success. I hope he can make the lifestyle changes needed to keep him relatively healthy and find a way to eat some of the things he wants to while keeping his bg in range. He's lucky to have your support! Good luck. Alicia Alicia
Get thee to a dietitian! Most diabetics are really to eat foods that all of us are eating. If you choose to use ''sugar-free'' items, they are not necessarily completely free. Some are still high in calories or fat, some may cause some gas/abdominal discomfort, some may have additional carbohydrate that will raise blood sugar. The American Diabetes Association has a website, a good place to learn more or find out books that will be helpful. The websites for the artificial sweeteners also are a source for recipes. good luck
I was just diagnosed with Type 2 (Adult onset) Diabetes. I immediately started eating strictly by the ''Zone'' diet guidlines. I am having some major questions about the way I should be eating and how my sugar level is doing during different times of the day. HOWEVER, all the dieticians I have talked to (mostly at Kaiser) totally subscribe to the classic ''pyramid'' and way more carbs than my body can tolerate. Does anyone know of a good nutritionist/ diabetes educator who has alternative knowledge? Does anyone have a word of advise for a beginner like me? Thanks!
Are you attempting to manage your diabetes via diet only? If so, diet guidelines recommend a range of carbohydrate intake (45-55% of calories from carbohydrate). Dietitians are urged to individualize diet recommendations to accommodate personal preferences and lifestyle with the ultimate goal of achieving good diabetes control and maintaining healthy cholesterol levels. I am a registered dietitian and practice from this perspective. A new diabetes diagnosis can be overwhelming-learning about the disease, the diet guidelines, blood sugar testing,and the huge emotional impact of having to manage a chronic disease. I sincerely hope you find someone to work with that you feel comfortable with. Good luck. Arinna
My sister has type 2 diabetes and was horribly handled by nutritionists pushing carbs - making her worse and worse. It was a nightmare to watch her get such bad advice and see her blood sugar climb. Thank goodness we recently found the IDEAL help! There is an amazing nutritionist at the UCSF Mount Zion Med Center in SF - She is the head of the Diabetes Education program and she is diabetic herself. She has completely turned my sister around, helped her lose weight, lowered her blood sugar down into normal ranges and basically saved her life. Her name is Beverly Mack and her phone number is 415.885.7760. I don't know how your health insurance will handle this but I can tell you it is well worth the cost to see her on your own - a small investment in your long term health. My sister travels all the way from Napa Valley to see Beverly. This carb thing is real problem for those of us with type 2, and the classic pyramid is completley wrong for us. You are so smart to be looking for the right guidance! I am seeing Beverly for weight loss and to lower my blood sugar which is beginning to climb as I get older and have stayed overweight for too long. I do hope this helps you. Please feel free to contact me. Debby
To reply to the person just diagnosed with type 2 diabetes, I'd like to suggest subscribing to Diabetes Interview (www.diabetesinterview.com). This monthly publication deals with both type 1 and type 2 diabetes and frequently has very good articles on diet and nutrition. It also has a question/answer section where readers pose different queries, some relating to nutrition. My daughter has type 1 diabetes and her diet is something we struggle with constantly. There seem to be different schools of thought on this and seemingly no one diet works equally well for everyone. I don't know much about the zone diet--if it's the diet that is high in protein, you may want to research it further as a complication of diabetes is kidney disease and eating too much protein stresses the kidneys.
Diabetes seems to be a disease that has many idosyncratic features that vary from person to person. You will find that certain foods will raise your blood sugar very high, very quickly. For instance, my daughter should not eat bagels or grapenuts, because it's too hard to keep her blood sugar value in an acceptable range. On the nutrition front, our sense is that the best diet for diabetics is also a very healthy diet for everyone in general--the basic food pyramid. We have found, though, we get better control if our daughter eats meals that have a blend of fat and protein with the carbohydrate. Whenever she eats meals with minimal amounts of fat/protein (e.g., pasta with veggies, bread, fruit) her numbers spike. The fat and protein slow the absorption of the carbohydrates.
I applaud your efforts to find a good nutritionist. I also encourage you to read as much as you can. They don't call diabetes the ''thinking person's disease'' for nothing. It's quite a challenge, and I wish you the best of luck. anonymous
I have had good success with a newly-diagnosed Type II diabetic using diet, digestive support, supplements, herbs, and life style modification. RK Bernstein's book THE DIABETES SOLUTION suggests a 22-15-63 (proteins-carbs-fats) ratio to stablize blood sugar, based upon the author's own experience both as a Type I diabetic patient and doctor. Results have been decreased insulin, reduced fatigue, neuropathy, vision disturbances, and urine output. Nori
I was diagnosed with diabetes ten years ago; I had symptoms for ten years before that but didn't realize what the symptoms meant. Now I've been in control of my diabetes for about six years.
FWIW, I agree with you that the food pyramid does not work for everyone and it has way too many carbs for this diabetic. My experience, though, is that the Zone diet is similar to a diabetes diet in some ways but problematic for many diabetics in other ways.
Also, the hardest things about diabetes are not the blood tests or the shots. The hard parts are getting past denial, finding resources that actually help, and living in a world that neither understands nor accommodates living with diabetes.
Usually, some doc tells you that you have diabetes, hands you a pamphlet, and sends you off to flounder about on your own. I went to three doctors and two nutritionists before I found someone who seemed to be paying attention and sending me to resources that worked.
Everything I learned about successfully managing diabetes I learned while I was pregnant, when I was constantly under the watchful eye of skilled specialists including a diabetes dietician who monitored my diet weekly. During that time, with their constant attention and customized treatment plans, I learned a tremendous amount about diabetes in general and my diabetes in particular.
It turns out that everyone's body is different, and everyone's diabetes is different. But my experience is that most medical people are trained to offer only ''cookie cutter'' treatment plans. They also often seem jaded, because, I suppose, it gets discouraging when most diabetics don't fully address managing their health. So, typically, all you hear is vague, generalized advice to get more exercise, lose ''even a few pounds,'' and ''count carbs'' (a concept that wasn't totally clear to me until I met weekly with that one wonderful dietician).
By keeping a daily journal to track my blood sugar, meals, and exercise, then going over my journal each week with committed specialists, I learned a lot about how diet, exercise, and medication worked together in my specific body to control my diabetes.
Unfortunately, that kind of personalized care is usually unavailable to non-pregnant diabetics. To get good advice, you have to work at ferreting out resources and people who will be straight with you and see your case with fresh eyes.
One great resource: The Diabetes Center in Berkeley has a terrific *free* drop-in support group. (Stop by or call them to get the schedule.) There, you'll find other diabetics who can tell you who's who and what's what in the bay area.
The Diabetes Center also has some good people -- the support group facilitator (Mary Kelly) and the diabetes educator (Lori Lorenzo) are both very smart and very clear.
The dietician there (Sue, I think) is more the jaded, cookie- cutter-solutions type. I felt that had I listened to her advice it would have been five steps backward for me.
As mentioned, the support group is free to anyone with diabetes; you don't need a referal, just drop in. I don't know if Kaiser offers referrals to the Diabetes Center, but maybe they have a similar facility and maybe you'll decide to spring for a consultation there.
Also, the book ''Diabetes for Dummies'' is really the best comprehensive primer I've seen anywhere. Skim through it and you'll be well on your way to understanding how to face your new challenges.
Good luck, and remember that your health is yours, not your doctor's. By owning your diabetes and taking care of yourself, you can minimize the effects and build habits into your life that will become as ordinary as brushing your teeth and combing your hair. Anonymous
I only have experience with diets for diabetics when I was pregnant. I remembered they do make us eat too much carb, the reason was then because I was pregnant and I need more calories than usual.
I went to 3 different endocronologist (with a nutritionist on staff) and they gave me different suggestions which some was very misleading. I finally went to California Pacific (in San Francisco) diabetics center, I register as a patient of Dr. Elliot Main. They are very helpful and the nutritionist are specialist in dealing with gestational diabetics, I can tell they have a big staff and can get a little unorganized with the appointments. But I think I wouldn't know how to deal with the diet without them.
At the end, you are the one who will figure how much carb you need a day. As long as, you balance them with enough protein. That's what I learned from the expert anyway, to create my own menus. You have to be proactive on what you want to have in your diet otherwise they gave you standard diet which might not work for you. I tend to eat lots of fruit and I don't like cheese, so that was a little difficult to work into. But I found a good balance diet that I like and it work out. Good luck! purna
Hi -- There are many different approaches to treating diabetes naturally. One diet that seems to work VERY well for many is called the Bernstein diet -- basically low carb, high protein. Dr. Richard Bernstein has written a book called Dr Bernstein's Diabetes Solution which is pretty widely available. He also has a website. Besides diet, there are many nutrients and herbs that help people manage their diabetes successfully without pharmaceuticals. You may be well served by visiting a naturopathic doctor in the area who has worked with people with diabetes. Check out www.canp.org to find someone near you. Good luck! Tara
That's weird! I'm a type 2 diabetic, and I've always been on high protien diets. I don't have a good regular nutritionist, but the one I had whileI was pregnant could probably refer you. Her name is Prenatal Diagnosis Center (415) 600-6400, I was seeing Trudi, she's awesome and I'm sure that she can hook you up! Rachel