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Site Under Construction –Exploring the Purpose of this Blog

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In the beginning when I started this blog,the reason was to spread awareness.  I knew that my husband and I became frustrated for years by not being able to find information on the type of diabetes my son had.  No matter what search we put in,the information about “babies with diabetes”just didn’t exist.  At least not in the way we needed it to.  As time has passed,our unique situation has changed and evolved into something we could have never anticipated.

Now we live beyond the “Miracle of Glyburide”which enabled our son,and subsequently our daughter,to live with diabetes free from insulin shots,pumps,multiple daily blood sugar checks and counting every carbohydrate that entered their mouths.  After that miracle,our lives turned into a daily struggle.  A daily question of what will come next.  A day by day account of doctors telling us “we don’t know,you are the expert”.

Amidst all of our day to day struggle,regardless of my lack of posting,I still receive comments from parents who have just had a little one diagnosed and want answers.  So I have decided to attempt a site change.  I am going to attempt to add pages to the blog and revamp the site to be a diary of sorts.  I want to tell our story,but I will save that for the book (if it ever gets published!).  What I want this site to become is a place new parents and struggling parents can go to for answers and tips.  I have some ideas of what the new site will need to contain but I also need your help to tell me what you want to see or need to see.

Over the next month I will be posting and adding pages.  I am also going to rename the blog because it will be more than just about the kids.  I want it to contain information for caregivers too.  Due to the nature of how rare their particular mutation is,the site will also broaden to encompass other diagnoses.  Specifically,I will include research and tips on how we deal with ASD (autism spectrum disorder),SPD (Sensory Processing Disorder),family time with special needs kids and tips on how to organize all the paperwork and therapy tools.

Bear with me as I redesign the site and feel free to comment with your ideas or your own tips.

Miss Independence

The ear-piecing scream echoes in my head as I sit at the table watching her eat. She has a sweet angel-face on right now,but I know,like a light switch,she can easily flip on the face of discontent in 0.2 seconds. I persist through breakfast with a quick “a-a,eat please”every time I see the look on her face or hear the beginning of a whine.

We are in full -blown potty training mode with Katie now. Our sweet,nearly 4-year-old daughter is starting to go pee-pee and sometimes poop on the potty but still doesn’t quite have the connection to be able to tell us she has to go. It is this lack of connection and,to some extent,her inability to communicate that is causing her to rebel. Katie has an independent spirit which will serve her well in the future. But her need to assert that independence is driving us crazy right now. She doesn’t want to sit in her chair to eat (she’s perfectly fine if she sits on your lap or walks around with her food). She doesn’t want to sit in the car seat and will scream the entire time until she is extracted ( at which point she will greet you with a sweet “hi”and bat her eyes at you as if nothing traumatic has just happened).

I don’t know exactly why this is happening again (we just got done with the 2 year screaming in the car seat jaunt about this time last year). My theory is the potty training because it is forcing her to grow up. Of course it could have something to do with increasing her glyburide dose too. It’s hard to isolate the cause when we don’t experiment in the sterile controllable confines of a lab. My scientific brain is formulating hypotheses while my logical brain realizes there will most likely never be a real answer.

So for now,we wait. We persist through the screaming. We don’t give in to the inappropriate demands of our “Miss Independence”. This too shall pass!?

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Spreading Awareness

One of the problems of having a rare disease is that awareness does not spread very quickly. It surprises and saddens me that we are coming up on 10 years into a new treatment for about 90% of patients with Neonatal Diabetes and still the estimated undiagnosed are in the thousands. Three years ago at the conference in Chicago,I remember the slides showing the numbers worldwide. Reported cases of different ND cases were just under 500. This year,the numbers were just over 500. I still find families in the Type 1 Diabetes community who don’t know about it and could possibly be tested for it. As for doctors,unless you are in the field of pediatric endocrinology,sadly,it’s unheard of.

So I’m on a mission. I want to spread awareness of this rare disease with a “new”life-altering treatment. I am back to working on my book with a passion and will begin sending out query letters to agents very soon. I am also contacting local news stations with our story in hopes of one of them picking it up soon. I think I will also try some other routes of exposure by working on some magazine articles and trying to get them published. I know that just being a blogger doesn’t make me a writer and I’m sure I need a lot of work to turn me into a true writer. But I also know that with enough passion and a loud enough voice,our story can touch the lives of families throughout the world.

If you would like to help me spread the word about this very rare but important disease,please comment,tweet,or post this on Facebook. Together,we can change lives.

Here is a link to the recap of the conference in Chicago. http://kovlerdaily.com/2013/07/celebrating-miracles-milestones-a-recap/

Potty Training the Second Child

I was hoping that potty training on Katie would be easier and quicker since we’ve tried so long with Andy. But any parent with more than one child knows,every child is different. We tried a little with Katie last summer just because she was two and we thought we should. She just had absolutely no interest at all. Throughout the school year,we have tried off and on with a few random successes,but nothing consistent and still little interest on her part.

So this summer with the 4th birthday looming,we decided to try full force again. We are finally seeing some progress. She is now consistently going right after breakfast and about 3-4 times a week after lunch. Other times during the day,she may sit on the potty and occasionally does something. The biggest barrier we are seeing with her is that she does not quite have the connection of the feeling before it happens. That is something that will just have to come naturally and we can’t force it. If anyone has any suggestions on how to move forward in this aspect,please share in the comments.

Meeting with the Experts

Last week we had the advantage of traveling to Chicago to the second North American conference on Monogenic Diabetes. While there we had the privilege of meeting with Dr. Hattersley from the UK. He was very interested in our story of low blood sugars with the infection and antibiotics back in early 2011. But when I told him that we never increased the kids’glyburide back to what they were on before,he shook his head and tried to explain the reasoning behind larger doses. I will try to summarize the conversation as accurately as I can.

Me:After the last conference (July 2010),we increased Andy’s dose to the equivalent of 12 pills per day. He was on the 5mg pill of glyburide 3 times per day. We increased Katie to about 1.5 pills (1.25 mg dose) per day. Katie was on track for development and we were starting to see marked progress in Andy’s skills. He was almost fully potty trained,could write almost his full first name,and was starting to initiate conversations.

Dr. H:What caused you to decrease the dose so much?

Me:Both kids came down with a bacterial infection at the same time and were treated with Amoxicillin. Both of them had such extreme hypoglycemia that we stopped glyburide altogether for Katie for 5 days and Andy for 3. After that,they were so sensitive to the glyburide that we only slowly increased. Katie ended up back on a suspension until last summer and Andy is only on 2.5 pills of the 1.25mg dose per day now.

Dr. H:It’s not unusual to see lows during an infection. In fact we see that a lot in ND patients on sulfonylreas. It seems that either the infection itself or the antibiotic tends to extend the half-life of the drug which is about 36 hours. So,in fact it will take several days before you will see a rise in blood sugars. But once the infection is over,you should safely be able to return to the previous dose.

Me:But what about the hypos? It seems like they were super sensitive to the glyburide afterward.

Dr. H:I think you have got to change your mindset from a Type 1 Diabetes mindset and just rely on symptoms alone. Many of our patients in the UK hardly check blood sugars anymore. They rely on their symptoms alone. If they “act”low,they treat the low. There is enough evidence now and enough time behind our research to prove that ND patients are not going to have a severe enough low to send them to the hospital. In fact,there is so much more advantage to higher doses,especially in the kids with developmental issues that it’s worth increasing to the highest dose they can tolerate. There will be a point where the blood sugars will stabilize so much that the glyburide will have no affect at all and you may even see an increase in the A1C at that point. You have to remember that the glyburide is just letting their cells do the work it is already designed to do. You need to try for the sake of their development.

Me:(hesitantly) ok,we’ll step it up. I’ll try not to check so often.

So Monday I started the increase. Andy is now on 1.25mg with Breakfast and lunch and 5mg before bed. So far the lowest number I’ve seen is a 90. Katie is on 1.25 with breakfast and .625 before bed. She did have one symptomatic low of 54 on Monday but it wasn’t bad. It was just a little whining and clammy palms but it was time for lunch anyway so she was fine.

Already the teacher commented that Andy was more calm and focused on Wednesday. Hoping to see some great results. Updates to come.