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Maribeth
04-25-2008, 05:58 PM
I am new at this site and can't figure how to answer Guitar Dave's delema on MODY and Meds. My son (7) and I (43) were diagnosed as MODY about a year and a half ago.

I was "gestational" with third pregnancy and it went away after 6 months post partum, severely diabetic from the get go during the fouth pregnancy and then it stayed. about 2 years postpartum, my then five year old was diagnosed as type one. Once they saw it was so unusual, neg. Gad, lower A1c, very thin little boy they did not know what to do. Interestingly, I heard a radio show talking abot a MODY specialist in Chicago where we live and I e-mailed him. Wonderfully he called and led us to corect diagnosis right away. My 7 year old is the only one of all four children with it.

Byetta with a 1/2 prandin was wonderful. Now, after being on Byetta for awhile I can't even take any Prandin anymore or I will crash. My A1c's are usuall 5.6 or under. Before Byetta I was on Insulin, H three meals and N at night. We talked about a pump but then I switched to take Metformin and Januvia with the Prandin. This is probably when I felt my worst. I think the Metformin was the culprit.

I swear by my Byetta. It has turned me into a new person, nice and even numbers, energy, no gain in weight. I can eat limited carbs now without spikes. Before if I even had a piece of natural fruit or a whole grain cracker I would have to cover or go way high.

My son was on five diluted (H) shots a day and then we switched to diet control. He is very small for his age so we quit diet control and are currently off meds and just documenting numbers. We will see.

I am curious about the person from Boylston, MA. I have been searching my geneology and my mother's family name is Boydstun and it traces directly back to there...Just an interesting tidbit.

We are being treated by Dr. Robert Sobel, Dr. Louis Philipson, Dr. Greame Bell (he did the molecular diagnosis on us), and Dr. Hattersley in England reviews our case. It was divine intervention that we hooked up with this group. Can't say enough about them.

Maribeth

HelenM
04-26-2008, 01:12 AM
Hi, Maribeth.
Welcome to the forum. That sounds like some useful info for Guitarman. I found it fascinating that the hereditary link maybe back to one small place. If so you presumably would both have the same type of gene variation.

If you go to the bottom of a thread and click reply then you can add your comments. I Expect one of the moderators will be along soon, maybe they can link the two threads???

Maribeth
04-27-2008, 04:04 PM
Thank you Helen for your encouragement.

It has been a mind blowing journey of science for us in the last year and a half or so. We are so lucky that we heard about this one doctor who knew so much about it and was so close to home. Our insurance covered all but about 250.00 per person on the testing which was pretty good. Of our four children only one inherited the gene.

It would be cool to link the threads, I will ask my computer minded husband to help.We will see. What a small world if the gene is linked to Boylston, MA. families. The doctor's said the only other R36W families they know of witht he identical mutation are in France. Our mutation is not exactly like the typical glucokinase mutation. I think us following thru on the genetic testing was worthwhile.

Dylan and I would still be taking unessary meds that over time insulin does tax the vascular system as well as the pocketbook. The doctors don't have all of the answers but I know we both feel much better than we did and we have a better quality of life now. I just hope they keep getting more answers from all the research.

talk again soon,
Maribeth

kgm0612
04-28-2008, 07:34 AM
Hi Maribeth & Welcome to the forum. Nice people and tons of information to be found here.

Karen

jacobsam622
04-28-2008, 08:35 PM
Welcome to the forums sorry to hear about you son and you both having Diabetes It has to be hard watching a child go through that. I guess we never stop worry about the children. When my wife was pregnant we had to worry about twin to twin tranfusion and a lot of other problems that develope with twins. Then It sids and all the things that can go wrong with at that age. Now because of me I have worry about them getting diabetes. I guess all we can do is give as much as possible and pray for the best.