Stressed Mother of 7yr. old

rbergman
By rbergman Latest Reply 2009-04-07 07:04:28 -0500
Started 2009-01-27 11:34:51 -0600

In April of 08 my daughter began gaining weight, she was 6yrs old and 57lbs, by her 7th birthday in July 08 she was 88lbs and doctors kept saying it was just a growth spurt, finally in Aug 08 I was at my wits end and finally found a doctor to listen to me who agreed that at 111 lbs my daughter was NOT going through just a growth spurt. Tests were ran and her TSH was 84.40 (normal thyroid level is 4.0). We were sent to a specialist in Denver (we lived in western Nebraska at the time) They put her on Synthroid and ran several tests and determined she was experiencing Auto-immune failure which produced anitbodies that attacked her Thyroid. She will be on the medication for the rest of her life for this condition. In late Oct. 08 we returned for level tests and the medication was doing its job at the level she was prescribed, but they noticed signs of pre-diabetes (I myself am a 4th generation type 2 diabetic) so they suggested I randomly check her b/s. By mid November she was having readings of 180-290 so an A1C was ordered, it came back normal at 6.2. Over Christmas we moved to South Dakota, transferred primary physicians and such with an upcoming appt. in Denver of Jan 22 '09. At that appt. I explained we'd moved and had found a Ped. Endo. closer to home and wanted to transfer her care to their office. Well, as if slighted by my actions, they handed me a free meter for my daughter of her own, was told to test her in morning fasting and 2 hrs after Dinner meal, they did her thyroid blood test, another A1C test, said to put her on a 300g carb diet a day and to make an appt. with the new doctor closer to home in 3 months and sent us home! I felt like my daughter and her issues just didn't matter to them and that she didn't get the care she needed just because it was our last visit to this place. After returning home (732miles round trip) I called our new primary and told her what was going on, she in turn called the new Ped. Endo. and told them what had happened, turns out there should have been a test done to actually determine whether Laura was diabetic or not other than an A1C test the OGTT 2hr test. It was also explained that due to genetic diabetes and thyroiditis they should have tested her for MODY which has 6 classifications and is neither Type1 or Type 2 Diabetes. I realize I am JUST a mother but I cannot understand a child being pushed aside and not having the care she should just because we were changing providers, not to mention what it cost us to take her all the way to Denver and back with no real answers. We have since set up all the necessary appointments and tests but I don't have to tell you that our insurance on her isn't real happy about a "repeat" doctor visit that shouldn't have had to happen. I may not be a doctor but I feel that the Denver doctor saw more of a loss of income than a child in need of help.


19 replies

rbergman
rbergman 2009-02-03 22:20:23 -0600 Report

My stress has been on a winding roller coaster since the 22nd thats for sure, I've gotten a lot of helpful tips and information from both here and the new Ped Endo we are set up with, since putting Laura on the lower carb diet she was having very good BG levels, under 93-100 in the morning fasting and under 140 at night 2 hrs after dinner…until last night, it was over 200 so we rechecked it and again got a 210, then I realized that we goofed because she had had ice cream, so I figured that was what had to have done it…until tonight, she had a 251…carbs were counted at school and at home and she was actually sitting at 265 of the 300g she is allowed, NO ICE CREAM…so now I'm wondering what the heck did it today. It was simple to blame myself for yesterday because without thinking I gave her the ice cream, but tonight there was no sweets and her dinner carbs were under the 80g per meal limit she is on.
So, up and down the roller coaster we go again, Friday we go to see her new Ped. Endo and I cannot wait to get answers or at least information that is helpful.

jsd2005
jsd2005 2009-02-04 09:11:41 -0600 Report

It definitely feels like a roller coaster ride when you or someone you love has diabetes. It can be very frustrating trying to learn everything, remember everything and then to apply it all in a practical sense, adds to the frustration and confusion.

With younger adults, especially school age kids, it can be even more difficult to manage their diabetes. Not for lack of trying, but simply because there are so many outside variables that enter into the picture that we may not even have thought about, let alone have any control over.

First, it is vital to make sure you include your daughter in absolutely every instance involving her diabetes management. The more you involve her, the more she herself will learn and understand. Even is she is at a younger age, continue to include her in all aspects or her care. Down the road this will be a huge benefit for the both of you as she will already have a foundation of knowledge.

Without realizing it, there is truly no way you or any of us can truly know exactly what goes on during school hours. For instance, which friend slipped her a piece of candy or if she really ate the mashed potato's they served, the list goes on and on. Another example may be that she will tell you she felt she worked and played very hard in p.e. or at recess, but her sugars are still very high. There are so many external factors that weigh into the equation, that are also totally out of our hands. There is and never will be any way to manage certain things as they are out of our control.

Simply or not so simply because she is young and growing and active, her body is continually changing. Hormones affect diabetes, the energy we consume and expend affects our diabetes. Do you see what I mean, the list could go on and on.

Her pancreas may still be functioning to a degree which even further influences blood glucose levels. Or it may simply not be working at all. She may have developed an even greater insulin resistance and thus, her blood sugar levels are higher.

Insulin resistance is a condition in which normal amounts of insulin are inadequate to produce a normal insulin response. (ie. lower blood sugar levels) Exercise can increase our bodies sensitivity to the insulin our bodies produce. This makes diet and exercise vitally important in the management of diabetes.

I would suggest your daughter keep a journal of daily activities, meals, feelings etc..as well as a log for blood sugars. This will enable you to review and monitor all these factors and see how they influence her diabetes. It may offer suggestions for management.

Good luck and hang in there. You are trying and that effort will pay off.

rbergman
rbergman 2009-02-04 12:16:51 -0600 Report

Thanks JDS,
I appreciate the advice, I didn't think about the journal of her daily routine and such, great idea will get on that one right away! I do keep a log book of her BG levels and if its high and I think I know why (like the ice cream) I write that in there, or , like last night the 251 BG and I don't know why, I write that in there. She takes all her meds on her own and tests her own BG with her own meter as I watch, she helps with preparing her meals so she understands why she is getting the portion she is if its a higher carb food (like noodles or a potato) so we are pretty good on that part. The school nurse calls me daily almost to report what carbs she was given at school but yes, she is not monitored while eating so I don't know if she is finishing everything or not, I do know there are times after school she'll tell me she didn't eat all of her lunch, on that I'm thinking my best bet is to pack her meals here at home and send them with her, it still won't ensure she will eat it all but I can't really control that 100%.
They get a snack at school in the afternoon (they only go 4 days a week so their days are 1 1/2 hrs longer than most school days at 5 day a week schools) and the snack is always veggies sometimes with a dip sometimes not but I have a schedule for the month of what the snacks will be, this is for all students she doesn't get a different snack they all get the veggies. (gives the school a high five for healthy snacks for all students! ) And yes, even though I have explained it all to her she could still be getting something like candy or gum from friends and not think about whether she should have it or not. If there is something like a birthday party or someone brings snacks for the whole class I do get a call and we try our best to factor that snack into her diet and carb count.
It is definitely a learning experience for all of us in our home even though I am a diabetic, dealing with a child with it is much harder, we'll get the swing of it eventually its only been a couple weeks since the doctor visit of first diagnosis so I know I'd like it to all be roses now but I have to learn patience as well and just keep doing the right things and deal with the bad things as they come.

Bill Barnes
Bill Barnes 2009-04-07 07:04:28 -0500 Report

Keep an eye and test on the pancreas. If any of you start getting upset stomachs in the mornings after eating breakfast. Like one half hour or so after eating you need to run to the bathroom. This could be caused from your pancreas not putting the proper enzymes in your stomach to dugest your food properly. I went to the stomach doctor for three years because of this. And finally my diabetic doctor said this was being caused by my pancreas. One pill called Pancreas cured my stomach(not one hundred percent)but much much better.

rbergman
rbergman 2009-01-28 11:57:51 -0600 Report

I feel I need to apologize here, I did not mean to make this a ranting and raving post about poor health care or neglect, but on the other hand, this may sound odd, but I'm glad I'm not the only one who disagrees with doctors or what they say and do, I have learned that for every poor experience there is a good experience and relief in sight, it just may not come as quickly as we'd like or in a form we expect. I shall not dwell on the past experience nor hold it against any future experience thinking they are all the same, we did learn a lot from the poor experience, and are hopeful that future visits with this new Doctor (giving her a capital D in hopes she is), will be more helpful and that if not all, most of our questions are answered. To all those who had poor or horrible experiences I do feel for you as well and hope that future experiences are more pleasant.

jsd2005
jsd2005 2009-02-03 11:32:41 -0600 Report

I'm glad you've managed to find a Primary Care physician who listens! I think that the one biggest complaints I hear is that he/she doesn't listen to me or is always in such a hurry. Undoubtedly, we all know how busy are own physician offices are each time we visit. Regardless, it is absolutely essential that each time to go to see your Dr., that you go very prepared.

Write down each and every question or concern you have. You can give the Dr. The list if it will help things go quicker, but by doing this you demonstrate to the Dr. that you are very serious about taking responsibility for your health and that you want to be prepared. This is actually a terrific way to build a "new" relationship with your practitioner, as they will learn to understand you and what your needs are. This actually helps the visit go quicker and smoother.

Now, of course this doesn't mean that he/she will honor every request, but at least it will open the door for discussion and more questions and answers. The more information you have the better informed you are and better decisions are made.

Ask what medications you need, why and what exactly the medications are for? Ask about side effects and when to report concerns? Always ask what a diagnosis means, what the prognosis is, what do we do to take care of it? ie. how do we manage the illness or disease or whatever…what happens if it doesn't get any better? What should we expect to see with the current course of treatment? when do we resolve ourselves to seeking another treatment or suggestion for management? What is the worst thing that can happen? What is next?

Of course, the final decisions for how your care is managed is up to you and only you. Your Dr. will not (some don't!) make the decision for you. Actually, YOU should make your own decision with regard to your care and treatment. You have the right to accept or deny anything you don't agree with. However, you will find that with more information at hand, you will feel more comfortable to make the decisions regarding your care.
You don't have to accept a option for care as the only answer or alternative. YOU DO have CHOICES.

So, the next time you need to go to the Dr. ASK QUESTIONS and be prepared.

Bill Barnes
Bill Barnes 2009-04-07 06:57:22 -0500 Report

I have the bestest family doctor ever. He is John McKnight at UVA hospital in Charlottesville. The hospital its self sucks(all ways over charging),but this doctor is great. He will spend extra time even skipping lunch to help patients. His bed side manners are great and he is simply a nice man.

firefightermom
firefightermom 2009-01-27 15:06:44 -0600 Report

hello, sorry you had such a bad appointment, my daughter has type one diabetes since age 6 she is ten now and we have been to some hard to understand appt. also. Is your next appt. with the new doctor soon?Sometimes people just act rude,sounds like the right thing to change doctors when children are sick they need to be treated good and as parents we expect them to do all the things they should medically to help them and to explain every detail to us about the conditions. That doctor(little d.) was wrong, try to not hold onto the grudge and find a Doctor that can help you and your daughter. if money was all they were worried about I wouldn't want him treating my child anyway. Compassion and Respect are important when it comes to choosing who takes care of us and especially our children.Hope your new Doctor is great for your family and just forget about the rude one.

LadyDi - 26259Miller
LadyDi - 26259Miller 2009-01-27 17:30:07 -0600 Report

You're so right. Not someone most of us would want treating us, much less our precious children. I'm one who firmly believes that God works in mysterious ways, and he knew that doctor was just not the right one for your daughter. Thank God, that's behind you now. Move on and pray that this new doctor will truly be a Doctor (with a capital "D") that values life and truly wants to care for and heal people.

rbergman
rbergman 2009-01-28 08:29:11 -0600 Report

Thank you all for your notes of support and concern. Yes we have an appointment on Friday (30th) with primary care physician and a tentative appointment for the following Friday with the new Pediatric Endocrinologist. Our insurance requires a referral from the primary before we can see the Ped. Endo. otherwise we would be going there much sooner. And yes, JSD I understand everything you said and I do agree that previous appointments with the other Ped. Endo. went much smoother and better than this last one and I guess that was my main complaint that it just seemed like because he knew we were leaving his practice he dropped the ball and made it someone else's problem. Anyway Thanks Again All I'll keep you informed!

jsd2005
jsd2005 2009-01-29 07:10:13 -0600 Report

Yes, Unfortunately those types of situations do happen and the ball gets dropped. They should have in fact made sure that you had everything you needed for the transfer ie records and such and provided what you needed in the way of education for the meter, blood sugars etc..Hopefully, things are going to be much better for you all now.
Best of Luck

Bill Barnes
Bill Barnes 2009-01-28 08:53:13 -0600 Report

I feel for you,I myself was treated much worse when I was a child,and as well a few years ago. When I was twelve I came down with polio. My parents took me to a quack doctor who said I was pretending. I after just a few days could not walk or stand very well and was in a lot of pain. He didn't do anything and told my parents I was pretending. I said I was not,but my parents believed him and took me home and were rather rough on me because I had wasted their time. Well after a few more days I couldn't stand and I was in serious pain. They took me back to this stoopid doctor who said I was still pretending. I father said he was going to take me to the hospital. Then the ediot finally checked my reflexes which I had none. He then said I had polio. If I had been treated for polio when it was first noticed the effects wouldn't of been as bad. As it was my right side and bladder were damaged severly.
When I was 45(14 years ago) I was having gout. I went to my family doctor for treatment. When I arrived I was told I had to see a nurse practichner. She told me I didn't have gout. She sent me to a foot doctor to get my foot drained by outting it asleep and sticking needles in it. After three months of this I insisted on seeing my regular doctor. When he came in he said you have gout right off the bat. I said no kidding. I had read up on gout and knew this was what I had. He prescribed two medacines. One to get rid of the problem and another to keep it from comming back. I recommanded that he fire that stoopid nurse. She even got mad at me when I told her she didn't know what she was doing and that I wanted to see my regular doctor. I would not leave the office until I got to see my doctor.
I called the insurance company and told them what happened and that they should get their money back. But after reviewing the case they sent me a letter saying they felt the proper procedures were done and would not ask for their money back. Go figure.

highlandcitygirl
highlandcitygirl 2009-01-28 09:39:21 -0600 Report

who can figure that out! i was having problems and ended up seeing the nurse pract. she told me my problems were because i had been trying to come off xanax. i was so surprised as i had not been trying to do that at the time! went to see the shrink because i thought my nerves were going, he told me to get off the xanax and showed me how. still had problems eneded back at my doctor for my regular yearly echo and found that my heart valves were getting worse and that was the reason i had been feeling so bad! if its not one thing its another!

Two painful feet
Two painful feet 2009-01-29 00:54:35 -0600 Report

Bill, I had polio in 1948. I have been wondering if there was anyone on this site that was a polio survivor. Would enjoy having you as a friend. But can't figure how to invite you. It would be nice to talk to about what polio has and is doing to you.

JoAnna

Bill Barnes
Bill Barnes 2009-04-07 06:52:14 -0500 Report

I would love to have you as a friend. to talk to.
You call yourself(two painful feet),you must have neurapaphy. Did you know that there is an operation for that which is simple and covered by insurance. My foot doctor in Charlottesville(Dr. Desabatos)went to John Hopkins and learned how to do this operation. He puts you to sleep and cuts a little slit near your ankles,top of foot and near bottom of knees and cleans fatty tissue from these nerves. You wake up the same day and no pain. No pain the next day either. No pain for five years now. You can walk home the same day,I did.
My pain was so bad I could not hardly walk before the operations. He did one leg one week and the other the next week. Do get this done as soon as possible.

jsd2005
jsd2005 2009-01-27 14:49:09 -0600 Report

Hello, I understand your feelings and agree with your concern. Unfortunately, this is something that does happen. Honestly, I can't say you were treated badly. I do feel the care was appropriate. Maybe just not as thorough as it could have been. Medicine is not an exact science and a diagnosis is a starting point and used to help rule out other conditions or issues. Thyroiditis in itself can be extremely upsetting and somewhat difficult to manage and yes, affect the bodies ability to handle insulin as well as wreak havoc with weight and emotion, skin, hair and other things. The TSH really was an appropriate starting point. However, I do agree a 2hGTT should have been done also. Thankfully, you have found a specialist who handles these types of issues and is much more adept at treating and diagnosing this type of condition. I don't know that your other physician was a Family physician or not. If do, It is not uncommon for them to start with one thing in mind and treat that for sometime. Unless, you are persistant and explain what you see and how you feel they may not explore other issues right away. They have such a general and broad base of knowledge are extremely qualified and very good at what they do. However, the age of your daughter and concerns, you were right to do what you did. Feel good about that.
I hope this demonstrates my support in your efforts.

John Crowley
John CrowleyCA 2009-01-27 14:30:01 -0600 Report

What a sad situation. I hope that your new doctors take better care of your daughter. It just breaks your heart to see someone so young have to endure not only health concerns but also being treated poorly.

Hang in there.

sparkysmom
sparkysmom 2009-01-27 12:18:25 -0600 Report

I am so sorry to hear that your daughter and family are going through this. I will keep you and yours in my prayers.
Jackie

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