i need help for my 13 year old daughter with major complications w/ diabetes

[JAYHAWK22]

MY DAUGHTER HAS HAD DIABETES SINCE THE AGE 61/2. SHE HAS HAD VARIOUS COMPLICATIONS THE LAST YEAR, THEY HAVE NEVER BEEN ABLE TO GET HER BLOOD SUGAR LEVELS ELEVATED. SHE IS ALWAYS RUNNIG IN THE VERY HIGH RANGE WITH SMALL TO LARGE KEYTONES. SHE HAS BEEN IN THE HOSPITAL SEVERAL TIMES FROM NOVEMBER 2004 TO RECENTLY. SHE HAS ABDOMINAL PAIN THEY HAVE PUT HER ON NEUROTIN FOR SEVERE FEET PROBLEMS AND PROBLEMS WITH FEELING IN HER HANDS AND FEET. THEY SWELL UP, IT SEEMS LIKE SHE IS ALWAYS IN PAIN!!!!!!! I PERSONALLY FEEL LIKE IT COULD BE A CIRCULATION PROBLEM. SHE IS ON VERY HIH DOSES OF NOVOLOG AND LANTUS AND SEVERAL OTHER MEDICATIONS. I FEEL LIKE I AM GETTING NO ANSWERS FROM ANYONE. I FEEL LIKE THEY NEED TO BE RUNNING MORE TESTS TO HELP ME UNDERSTAND WHY MY CHILD HAS TO FEEL THIS HORRIBLE ALL THE TIME. I'M SURE ALL YOU PARENTS OUT THERE CAN UNDERSTAND MY CONCERNS AND HOW HARD IT IS AS A PARENT TO HERE THERE CHILD SAY WHY ME? SHE SAYS SHE JUST WANTS TO FEEL LIKE A NOEMAL CHILD INSTEAD OF ALWAYS BEING IN PAIN!!  PLEASE HELP!

             JAYHAWK22

[Kristy Mari]

I'm with/RED78 - check into/rule out Gastroparesis...  it may be the cause of her horrific pain...   I'm here if you need to talk...   Please keep us updated...   She & you will remain in my prayers... GOD bless...

[red78]

Im sorry to hear about what your daughter is going thru.  She sounds like me at that age.  I was diagnosed at 6 yrs old, Im 26 now.  The feet and hand pain,although Im not a doctor, Is probably neuropathy.  I have it in both my feet/legs and hands. I was diagnosed at 11 with that.  High blood sugar cause alot of complications.  As for the stomach pains, it could be, possibly, gastroparesis...which is nerve damage of the stomach. I also have this, and it's the hardest of the complications. I would definetly take your daughter to an endo. if she has not seen one.  My blood sugars where always running high levels until they came out with Lantus...I call it the miricle insulin. Im also on Humalog,which I find works quicker than R or novolog, maybe see if the doctor thinks that humalog might work better for her too....it worked wonders for me along with the lantus when they changed me over 2 years ago---Ill never go back-----Hope this helps and I hope things get better. I've been where you are myself...keep hope and faith

[JDRF Team SGG]

I agree with LRS that your daughter should be seen by an endocrinologist, for there are several other problems that seem to frequently happen to diabetics, including celiac disease, which was suggested earlier as a possibility. Do have her tested for this. The stomach pain could also be due to nerve damage in her stomach, called gastroparesis, which can be a complication of prolonged high glucose readings.

If nerve damage is happening at her young age (I am bringing this up because of the swelling and the foot pain, which could be due to small blood vessel damage leading to nerve damage, all caused by high glucose levels), the most important issue to deal with is not really the pain, but the CAUSE, meaning the high glucose readings. Treating the symptoms without normalizing the glucose levels is futile. There are many types of insulin available today and there are pumps which can deliver insulin continually. There are also medications available to help treat insulin-resistance if your daughter truly is taking larger-than-normal doses of insulin with little effect. I would insist on her behalf that she see a pediatric endocrinologist and that treatments be explored to stabilize the blood sugar levels to protect her from further damage.

That should happen first and foremost. Then you can work on treating the symptoms of pain and swelling of extremities. Although the pain may seem the more pressing issue, the root cause must be addressed to protect her from severe damage. As one who answers the e-mail requests that come in for the Juvenile Diabetes Research Foundation's Online Diabetes Support Team, I can assure you that youth is not necessarily protection from nerve damage and kidney damage and worse. Since she is showing symptoms that could be the beginnings of these things, the best thing that can be done is to bring those glucose levels to normal to protect her and to allow her body to regenerate as much as is possible if some damage is starting to happen. This must be done quickly to protect her, for some studies seem to indicate that nerves can regenerate if damage is caught very early. Some of our own volunteers attest to the fact that lowering glucose levels helps ease the discomfort caused by nerves that are being damaged.

And, lastly, if nerve damage is NOT the cause of her problems, then WONDERFUL!! Good glucose control will protect her and will only improve her overall health and circulatory health, so I still stand by my urging you to insist on getting those glucose numbers under control before working on the pain issues. This is possible nowadays with all the different varieties of insulin therapy that are now available. One is probably right for your daughter.

[JDRF-Team-LRS]

JayHawk,
I'm so sorry for the agony you & your daughter must be going thru.  I hope her diabetes is being monitored by a diabetes specialist and not "just" her GP.  There's a world of difference when we involve a specialist who deals with diabetes, treatments, and ocmplications on a daily basis.  If you don't yet have an endocrinologist (pediatric endrinologist would be ideal), please consider getting a referral to one.

I also have another suggestion that might help you.  On the main page for this bulletin board:
http://www.medhelp.org/forums/diabetes/wwwboard.html

you'll see a link to the JDRF Online Diabetes Support Team.  The JDRF "ODST" is staff by volunteers like us, but they're set up to work with folks 1:1 unlike here where we are such a very public forum for exchanging ideas.  An ODST volunteer will help you connect with others in your area, can help connect you to resources you may not be aware of, and can "be there" more personally than we can here.

You can also access the Online Diabetes Support Team directly from the JDRF website:
htt://www.jdrf.org

Good luck.  Your daughter is waaay too young to be suffering so.

[MLWTR]

I am sure you and your daughter's daughters have been working hard for months to try and figure out what's going on. They've probably considered this long since, but since you mentioned both stomach pain and neurological problems, I wondered if she had been tested for celiac disease, which I believe is more common in people with diabetes than in the general population. Information on celiac disease is available at the web site of the Celiac Disease Foundation at www.celiac.org. Another possibility might be inflammatory bowel disease.

Good luck. I hope you find an answer soon.

[galzee]

Hello Jay!  I am a volunteer with Medhelp, not a medical professional, so any information I give you should be verified with your daughter's healthcare team.  I am the mom of a 17 year old who was diagnosed at the age of 21 months.

I am so sorry that you and your daughter are going through such a hard time right now.  I really do not have any experience with the problems she is facing and I have reached out to others in the Medhelp organization to see if any of them have some knowledge that can help.  I will post again after I do some research with them.  I do have a few questions that perhaps you could answer that may help us, help you.  Does your daughter see an endocrinologist regularly?  What is her healthcare team telling you about these symptoms?  What was her most recent Ha1C reading?  Have her doses been increased recently?  I need to stress how very important it is, especially if she's showing ketones, that you are in (at the very least) weekly communication with her healthcare team.

Sorry I don't have any definitive advice or experience I can share with you on this, but I promise to provide any information that I find out with you.  

[JDRF-Team-gg]

Please see response under galzee.  Thanx!