Wednesday, June 30, 2010

Apidra Please

We changed Nate's insulin to Apidra from Novolog and I am LOVING it!




When we were doing our trial on DexCom we discovered that Nate's bg would drop too low during his meals because I was bolusing him too early.  The reason that I would bolus early was to try and avoid such a large spike in Nate's bg after a meal. 

In comes the Apidra!  Wow!  We have been using Apidra for about 2 weeks and we love it.  It works fast, Nate has been having great numbers and we no longer have to bolus 15-20 minutes before a meal.  We bolus Nate right before he eats and we still have great numbers.

At our endo office --- 90% of patients on the OmniPod use Apidra.  That is a pretty big percentage.  I had asked to switch from Humalog to Apidra when we started pumping but was turned down. I forced the issue and insisted that we at least be able to switch to Novolog because I had read a study that indicated the higher levels of zinc in the Humalog caused occlusions in the OmniPod (I can't remember if it was just OmniPod or all pumps). Anyway - - - I am so glad we are finally pumping with Apidra.  It really seems to be working well for Nate and really isn't that what it's all about?? 

Tuesday, June 29, 2010

OmniPod Pod Recycling

What do you do with 50 old pods lying around the house?


After the children are done playing with them . . . you recycle them!!!

It's easy peasy --- so easy that a 4 and 6 year old can do it!!  Ok - I drove them to the FedEx store but they did the rest!




Easy Peasy Lemon Squeezy!!



The Houston Family - - - Saving the Earth one pod at a time!!!

Monday, June 28, 2010

Tuesday, June 22, 2010

DexCom - decisions decisions!

I know everyone is tired of me posting pictures of my son's bum on my blog - - - - ok, maybe only my son is tired of me posting pictures of his bum on my blog!  I have these pictures that I took of his little bitty bum after the DexCom sensor was removed - - -it doesn't look good.  :(




The good news is -- he really doesn't seem to mind and after wearing it for a few days when the alarm would go off in his pocket he would come find me, point to his pocket and say 'beep-beep-beep!".  It was his way of telling me he was low.  AWESOME!  He cannot yet verbalize his lows so this is an awesome tool to help us prevent severe hypoglycemia.  

I really miss Dexie!!  I miss the arrows, I miss the beep, beep, beeping to alarm of an upcoming high or low, I miss the knowing!!  I feel so selfish. Am I really going to subject my son to another site insertion because DexCom makes me feel better?  He's too young to have an opinion so I am making yet another huge life altering decision for him but I have to continue to tell myself that is what I am here for - - - this is why God gave me this special little boy.  I'm just not sure if I am doing it for him or if I am doing it for me?
If I do it now it will just be another piece of hardware that he will become accustomed to wearing. Just like his diabetes - he will never know any different. 

I emailed the paperwork late last night. Waiting to see what insurance says?!?!?!

That little sample of DexCom was just enough to get me hooked.

If Cigna says YES -- it is a go.

Wish us luck!

Saturday, June 19, 2010

Crohn's vs. Ulcerative Colitis

Sophie had her follow-up appointment with her GI on Thursday.  After reviewing the biopsy results unfortunately we are not really any closer to knowing whether she has Crohn's or Ulcerative Colitis (UC).  Right now he said it looks more like UC but there are a few factors that are pointing towards Crohn's too.  The trouble with these 2 diseases is that Crohn's often presents as UC and then the Crohn's diagnosis is made at a later date.

The good news is that Sophie is responding to the treatment that we have chosen and is feeling SO much better. 

The results from the blood draw are not all back yet --- we are still waiting for the Celiac results.  Thank you to those that sent messages advising us to check for Celiac.

Monday, June 14, 2010

Nate's DexCom Trial

I may or may not be in love with the DexCom Seven Plus CGM.   It is too soon to tell!

Quick Definition for my non-T1 peeps -

A continuous blood glucose monitor (CGM) determines blood glucose levels on a continuous basis (every few minutes). A typical system consists of:
  • a disposable glucose sensor placed just under the skin, which is worn for a few days until replacement
  • a transmitter which communicates to a radio receiver
  • an electronic receiver that displays blood glucose levels with nearly continuous updates, as well as monitors rising and falling trends.
Continuous blood glucose monitors measure the glucose level of interstitial fluid.
 It does NOT replace the finger pricks that Nate receives but it does help reduce them.  You cannot dose insulin from the CGM reading but you can get an idea of what his bg looks like at any given moment.  I believe the DexCom checks every 2 minutes (don't quote me on that).

On with the show . . .


 (Nate is SO ok with his pink DexCom cover - he also drinks from pink sippy cups and rides around in a pink stroller - - - he's manly like that!!!)

Nate's endo provided us with the DexCom Seven CGM to try out for a week.  We started our trial last Thursday and by Friday morning at 5:00 AM we had a sensor failure.  Boo!!  I had just started falling in love and was excited to show off our new toy when it went kaput!  Friday was Sophie's procedure so I had to try and block the big sensor failure out of my brain while I focused on getting Sophie Doodle to the hospital.

Luckily, my good friend, Kimberly a T1 and DexCom user came to our rescue Friday afternoon.  She brought over one of her sensors and did a site change on Nate for me.  Why did she do it?  Well, have you seen the needle on that thing?  Ummm - I nearly passed out just looking at it.

So, by Friday evening we were rolling again with the CGM and I am seriously thinking about running away to Mexico with the thing.  It's THAT AWESOME!

What I love about the DexCom:

* We discovered that Nate was actually going LOW (and I mean really LOW) before breakfast.  We have started bolusing Nate about 15-30 minutes before he eats to try and avoid the post-breakfast spike but what we didn't know was that Nate's insulin starts working fast!  Two mornings in a row he actually dropped down into the 50's with double arrows pointing down WHILE he was EATING!  He didn't show any signs so I NEVER would have known.  We now wait no longer than 15 minutes which gives the insulin a little time to kick in  without plummeting his bg.

* Sleep - oh beautiful sleep! I've been able to sleep more in the last 4 nights than I have in the last 4 months. I set the receiver just outside of his bed and beside his baby monitor and an alarm will go off if he drops below 100. We set it for 100 at night and 80 during the day.  It also has an alarm that goes off if he goes too high but (knock on wood) we have not heard that one yet.

* I cannot tell you how many times I have looked at his glucometer and wondered which direction his bg was going?!?!  You know that perfect number you get at bedtime but that little nagging voice in the back of your head that is wondering if it is going to stay steady, drop lower or go higher . . . well, hello little arrows on DexCom receiver - - - this little feature STOPS the NAGGING!


Why I am not sure if it is meant to be:


* Do I really need to say anything more?  I just don't know if he has enough real estate to carry this off for a long period of time.

Even when we move things around:


there just isn't that much space available!  His arm could work but I was WAY to chicken to do a site on his arm.  His pod is almost always oh his bum, back or leg so his arm could work --- I will have to think this all through.

* The other concern that I have is that I am just not sure I can do the site insertion.  OmniPod has really spoiled me with its auto-insertion.  I've gone back to my old needle phobia ways (and yes, there is a name for that - - - Trypanophobia).  I have not done one single injection since Nate started podding on 3.1.10. Not one single injection!

* Nate is a podder which means he doesn't have a pump to carry around.  He wears the pod and currently I carry the PDM.  We have struggled a little with him wanting to carry around the DexCom receiver.  I tried clipping it to his pants but he kept taking it off and throwing it at me.  I tried it in his back pocket and that was a no go.  I finally remembered  a tank top (Kangaroo Pouch) that another D mom had sent me before we had decided on a pump. I dug that out of his drawer and it has worked like a charm - - - the receiver fits in a little pocket on the back of the tank so he can't reach it.  The same momma also suggested putting it in the pocket of cargo shorts and that has worked well too.  The trouble is that the receiver is NOT waterproof and he has almost walked into the pool with it twice!!  That would have been a disaster since it's not even ours!!  YIKES!



 Thankfully, I have 3 more days and 3 more nights to ponder the DexCom situation.  In the meantime I am going to get some good sleep, enjoy no nagging bg questions and keep watching those bg trends.


PS - I already know that my son is going to want to kill me one day for constantly posting pics of his bum on my blog!!  It's ok - I'll cross that bridge when I get to it!  :)

Saturday, June 12, 2010

Dear Anonymous

The night before Sophie's procedure I  received the following anonymous comment on my post Goodbye Children's Medical Center, Hello Happiness:


 Laura, it saddens me to think about what your family is going through. Personally, I am not familiar with Children's Hospital as none of my family members has been treated there, yet.


I couldn't help but notice the endless criticism of a nationally-ranked hospital by an unbiased, highly-respected publication. You complain about all of the education you went through while Nate was still a patient in the hospital and couldn't focus on all of the information because Nate required a lot of your attention. Yet, on the other hand, you complained about not being able to have your friends come visit due to the the "lock down" which was in effect to protect the hospital's patients -- including your son. How would you have reacted if your son had also caught the swine flu because anybody and everybody were permitted to visit their friends? Thankfully, he didn't and perhaps gratitude is owed to the hospital for making a huge decision to limit visitors for its smallest and most delicate patients.


Finally, please do your homework. An A1c represents approximately 90 days of blood sugar values. Since you've only been with your new clinic for "a short time," you owe a thank you to your previous providers as Nate has obviously benefited from their assistance, education, and advice which played a large part in achieving the most recent A1c.


I wish Nate all the best as he learns to successfully live with a chronic illness (and he will!). And, personally, you seem to be a great candidate who would benefit from counseling to help you deal with children with chronic health conditions. Life, for the most part, can easily be viewed as a glass that is "half full."

Dear Anonymous:

 When I 1st read your comment my feelings we hurt and then I got a little bit angry at the criticism but then I  realized --- If I am going to publicly criticize others then I need to be able to receive and embrace criticism given to me. 


So, I would like to thank you for your comment on my post and also thank you for taking the time to read my blog.  However, I would like to address a few of the points made in the comment and hopefully clear the air a little . . . .


* I notice that in the 1st paragraph you mention that you are not familiar with CMC as none of your family members have been treated there YET.  I hope and pray that you never have to know the pain of a chronically ill family member much less your own child.  Until you walk in the shoes of a mother with a sick child you will never know the heartache.  I honestly hope that you never have to know it.


* In my letter to CMC I did not mean to criticize the swine flu lock down.  I would not have wanted it any other way.  I would never want any child exposed to the swine flu especially a child that already has a weakened immune system.  My frustration was that the educator seemed put out with us because we were not able to give her our undivided attention because we were having to care for our very sick and very fussy son.  It was a tough situation for us because my husband and I both needed to learn the life saving skills we needed for our son but Nate needed out attention too.  I am in no way criticizing CMC for the lock down. We were just frustrated at the training times and the educator that was not sympathetic to our situation. It would have been a lot easier had Nate not been diagnosed in the middle of the swine flu epidemic so that Nate's grandmother could have come to the hospital to help with him but that's just not the way it happened. 


 * Thank you for pointing out my mistake in regards to Nate's A1C.  I definitely do know the definition of the A1C ---- I will add it here for those who do not know.

A1C: A test that measures how much glucose has been sticking during the past 3-4 months to hemoglobin, the substance in the red blood cells that carries oxygen to the cells of the body. The A1C test is important in diabetes as a long-term measure of control over blood glucose. Even outside of diabetes, an elevated A1C level may be a cardiovascular risk factor.

 You are right I actually do not know what Nate's current A1C is because we have not had it taken since 3/31 while we were still with CMC (it was 8.4 at that time, and 8.0 at his dx).  What I should have said is that Nate's average blood sugar had dropped significantly since we have have been working with the our new practice and we are looking forward to a great A1C result in July.

* Finally, I would like to say that although you are very entitled to your own opinion of me I am sure others would disagree with your assessment.  I do not disagree that I may need therapy for overcoming the overwhelming sadness of dealing with not 1 but now 2 chronic illnesses in my children.  But, what you should know is that my blog is my therapy and the kind people that leave encouraging comments are my therapists.

As I said previously unless you have experienced the heartbreak of having a child diagnosed with T1 or any other serious medical condition you really cannot judge me.  I have come a LONG way in the almost 9-months since Nate's diagnosis with T1.  I have mourned and gone through all of the appropriate grieving steps and I now embrace our new life and my beautiful, healthy son that happens to have diabetes.  I will do the same for my precious daughter Sophie as we tackle her challenges.  It's part of being a mom --- we only want the very best for our children and it is our job to stand up and fight for them.  It is MY job to fight for my children - - - I will always be their strongest advocate --- ALWAYS.

I am so blessed that I have a wonderful husband, 3 great children and a enormous support system ---- I would have to say Mr/Mrs Anonymous that my glass is not 1/2 full but my glass actually runneth over.


To read about a more positive experience, please read my friend, Hallie's post about Cincinnati Children's Hospital Medical Center.  I love that she loves her hospital so much.  :)

Friday, June 11, 2010

Ulcerative colitis

We are home and we are exhausted. I got about 2 hours of sleep last night and today has been pretty crazy. All 3 kids are sleeping so I am going to get horizontal ASAP.

The doctor confirmed that right now Sophie has ulcerative colitis with a possible later diagnosis of Chrohn's. We will have the biopsy and blood work results back mid to late next week.

I would like to thank all that have lifted our family up in prayer over the past week. Your love and support means more than I can express. Seriously, I am so thankful for all of the kind words, prayers and messages that we have received.



Now here is the description of Ulcerative Colitis for those who would like to know:

Copied from webmd.com

Ulcerative colitis and Crohn's disease are the most common types of inflammatory bowel disease. Ulcerative colitis affects only the colon and rectum. Crohn’s can affect any part of the digestive tract. To learn more about Crohn’s disease, see the topic Crohn’s Disease.
What is ulcerative colitis?

Ulcerative colitis is a disease that causes inflammation and sores (ulcers) in the lining of the large intestine, or colon. It usually affects the lower section (sigmoid colon) and the rectum. But it can affect the entire colon. In general, the more of the colon that’s affected, the worse the symptoms will be.

Ulcerative colitis can affect people of any age, but most people who have it are diagnosed before the age of 30.
What causes ulcerative colitis?

Experts are not sure what causes ulcerative colitis. They think it might be caused by the immune system overreacting to normal bacteria in the digestive tract. Or other kinds of bacteria and viruses may cause the disease.

Ulcerative colitis is not caused by stress, as people thought in the past. But if you have ulcerative colitis, stress can make it worse.

You are more likely to get ulcerative colitis if other people in your family have it.
What are the symptoms?

The main symptoms are:

* Belly pain or cramps.
* Bloody diarrhea or an urgent need to have a bowel movement.
* Bleeding from the rectum.

Some people also may have a fever, may not feel hungry, and may lose weight. In severe cases, people may have diarrhea 10 to 20 times a day.

Ulcerative colitis can also cause other problems, such as joint pain, eye problems, or liver disease. But these symptoms are more common in people who have Crohn’s disease.

In most people, the symptoms come and go. Some people go for months or years without symptoms (remission). Then they will have a flare-up. About 5 to 10 out of 100 people with ulcerative colitis have symptoms all the time.

Ulcerative colitis sometimes leads to more serious problems. It can cause scarring of the bile duct. This can lead to liver damage. In rare cases, severe disease causes the colon to swell to many times its normal size (toxic megacolon). This can be deadly and needs emergency treatment.

People who have ulcerative colitis for 8 years or longer have a greater chance of getting colon cancer.2 Talk to your doctor about your need for cancer screening. Screening tests help find cancer early, when it is easier to treat.
How is ulcerative colitis diagnosed?

To diagnose ulcerative colitis, doctors ask about the symptoms, do a physical exam, and do a number of tests. Testing can help the doctor rule out other problems that can cause similar symptoms, such as Crohn’s disease, irritable bowel syndrome, or diverticulitis.

Tests that may be done include:

* A colonoscopy. In this test, a doctor uses a thin, lighted tool to look at the inside of your entire colon. At the same time, the doctor may take a sample (biopsy) of the lining of the colon.
* A barium enema X-ray or an X-ray of your belly to show pictures of the colon.
* Blood tests, which are done to look for infection or inflammation.
* Stool sample testing to look for blood, infection, and white blood cells.

How is it treated?

Ulcerative colitis affects everyone differently. Your doctor will help you find treatments that reduce your symptoms and help you avoid new flare-ups.


Doctors often prescribe medicines to reduce inflammation, such as:

* Steroid medicines. These can help reduce or stop symptoms. They are only used for short periods because they can cause side effects, such as bone thinning (osteoporosis).
* Aminosalicylates. These can be used to reduce or stop symptoms (sometimes at the same time as steroid medicines). After your symptoms are under control, you may take these medicines to help prevent flare-ups.
* Medicines that control the immune system (immunomodulators). You may need these if your disease is severe and aminosalicylates don't keep it from flaring up.

Some people find that certain foods make their symptoms worse. If this happens to you, it makes sense to not eat those foods. But be sure to eat a healthy, varied diet to keep your weight up and stay strong.

If you have severe symptoms and medicines don't help, you may need surgery to remove part or all of your colon. Removing the entire colon cures ulcerative colitis. It also prevents colon cancer. But it does have some serious risks. Still, most people who have surgery are glad they did.

How will ulcerative colitis affect your life?

Ulcerative colitis can be hard to live with. During a flare-up it may seem like you are always running to the bathroom. This can be embarrassing and can take a toll on how you feel about yourself. Not knowing when the disease will strike next can be stressful. Stress may actually make the problem worse.

Wednesday, June 9, 2010

Lab Results

Finally . . . the results came back today.

The bad news is the the lab results were good. We were hoping that they would find something in the stool study that would be causing Sophie's symptoms. Unfortunately, that was not the case so we are going forward with the colonoscopy and blood work on Friday.

She took her 1st dose of MiraLax tonight has 2 more doses tomorrow and is on a liquid diet starting at noon.

I am sure the scope will give us the answers we need but I'm a little overwhelmed at the thought of the diagnosis that we will receive.

I am praying - praying - praying! This old song comes to mind from Tim McGraw . . .

Take this very breath you gave me
Take the heart from my chest
I'll gladly take her place if you let me,
make this my last request

Please, please please - it's so damn unfair. I would so willingly take it all. Bring it on! I wish I could take it away from both Nate and Sophie.

Diabetes - I would take it from Nate in a heartbeat!

Crohn's Disease - please give it to me instead - I don't want my daughter to suffer any longer!

Please!

Friday, June 4, 2010

Response

I did not have a chance to send my letter to Children's Medical Center of Dallas this week. Our family is dealing with bigger issues right now.  Our daughter, Sophie is sick and we are trying to figure out what is wrong.  I just didn't have time to think about about CMC after Sophie's doctor appointment on Tuesday afternoon.

Well, until I received an email response from Nate's former endo late last night. I am very impressed that Dr. Tannin took the time to respond and I think it is very thoughtful of her to respond and wish us well with Nate's future treatment.


Here is the letter that I recieved last night - - - in its entirety:




June 2, 2010

Dear Mrs. Houston,

I just wanted you to know that I have read your blog.  Several of my partners and a number of people in the Children’s Medical Center administration have read it as well.  So you can rest assured that the letter has reached its mark.  We hear your concerns and will be working to address the areas in which we can and should improve.

It is important to me that you to know that we really do value every single patient and family for whom we care.  You and Nate have never been anything like a number to me or really to any of our staff.  I know that we were not always successful in helping you in ways that you found comfortable and for that I am sorry.

Different strategies work for different people and even for the same people in different situations.  I’m sure you can imagine another parent getting impatient if we had waited to start education until they were rested because that person would not have calmed down until they had a lot of concrete information and skills assimilated.

There are also many opinions on the advisability of tight blood sugar control in toddlers.  I have teenaged patients whose diabetes was diagnosed in infancy who struggle with attention and learning issues.  We still do not know the extent to which unrecognized hypoglycemia plays a role in the development of these issues.

I wish you, your whole family and Nate only the best in your continued journey with diabetes.  I hope that your new health care setting is everything you want it to be for all of you.

You may post this letter on your blog if you wish. If you do, I ask that you post the entire letter rather than quoting excerpts. 


Sincerely,

Dr. Grace Tannin


To be honest it is 12:30 AM and I am modifying this post because - - - well, because this is my blog and I want to!  I deleted a paragraph addressing Dr. Tannin's paragraph in her letter about the tight blood control in toddlers.  I didn't address it in my response to her so to be fair I took it out of the post.

Again, I think it was very nice of her to write and wish us well.

We have moved on from CMC and so far we are very pleased with Nate's new medical team.  Nate has 1 doctor, 1 nurse and 1 CDE and I believe this system will work better for Nate's long term care and work better for our family.

Thursday, June 3, 2010

Sophie Update

I spoke with the nurse from Sophie's GI doc's office several times today and unfortunately they did not get the stool study results back from the lab today.  So, we are in a holding pattern for now.  The doctor does not want to do the colonoscopy before absolutely ruling out a parasite or C. difficile.  Her symptoms have lasted longer than either of those would typically last but Jim and I are still hoping that it is one of the aforementioned culprits.  We are not doing the blood work until we do the colonoscopy so that they can do it while she is under anesthesia.  Like I said - HOLDING PATTERN. 


In the meantime Sophie's symptoms are about the same:
urgent diarrhea
large amount of pooling blood with each stool
8-10 bowel movements per day
tummy ache before BM


Yesterday while at swim practice Sophie became upset when she had to get out of the pool 2x to urgently go to the restroom.  She said "Mommy, I am tired of going doop (Sophie's word for poop) ALL OF THE TIME".  I don't blame her - it is not fun!  I think we are more than ready for some answers.

I will update as soon as we know more.

Thank you all for your kind words, good thoughts and many prayers.

Wednesday, June 2, 2010

Sweet, Sweet Sophie

This week we took our sweet, sweet, little Sophie to a pediatric GI doctor. She has been having some issues over the past 5-6 weeks that are very concerning so we got the referral to the GI doc and had our appointment yesterday.

The concerns the doctor has are devastating! Sophie will go into the hospital on Friday morning to have a colonoscopy and blood work done to confirm a diagnosis of Crohn's disease. We have Crohn's disease in the family as well as other auto-immune diseases so I am not completely shocked but am hoping, praying, wishing, begging, pleading with God to let the results come back negative.


Crohn’s disease is a condition that affects the gastrointestinal tract. Symptoms are rough on children, and can range from vomiting, rectal bleeding, abdominal pain, fever, and fatigue, to relentless diarrhea.

We finished her stool study today and took all the poop to the lab for testing.  I am hoping we get those results back quickly so that we can move forward.  And for the record - - - NO ONE ever tells you before you have children that you may have to collect POOP in a poop catcher and spoon it into little vials and drive those little poop filled vials to a lab for testing.  ANYONE that ever says being a mom is EASY is delusional. Rewarding - yes!!  Easy - HELL NO!

All joking aside --- Jim and I are asking that you keep Sophie and our family in your thoughts and/or prayers while we are dealing with her symptoms, the testing and waiting for the final results from the procedure on Friday.

Tuesday, June 1, 2010

Goodbye Children's Medical Center, Hello Happiness!

The Houston family has officially left Children's Medical Center of Dallas & we could not be happier.

In an open letter to Children's I wrote the following but then decided not to send it. My momma read it and her response was "if you don't have anything nice to say . . . well, then don't say anything at all."

So, since I am not going to send it I thought I would post it here. Hey - at least it makes me feel better.

What are your thoughts --- send it?? Don't send it?

To Whom It May Concern:

I am writing to inform you that my son, Nathan will no longer be a patient of Dr. T or Children's Medical Center of Dallas. Nathan's medical records have been transferred to his new endocrinologist and we have already had our fist appointment.

I am also writing to let you know that this is the 1st time in the past 8-months that I feel really good about my son's health care options and his treatment plan. As you know, Nate was diagnosed with type 1 diabetes at 14-months of age. In a few short months Nate will have had type 1 for longer than he has not had it and to me that is huge. Nate will have diabetes his entire life --- that will be a lot of highs and a lot of lows & hopefully a lot of in betweens too. As a mom this diagnosis was devastating and from the beginning I have had nothing but problems with Children's Hospital and their level of service and care for my son.

On diagnosis day we went through the ER and waited for hours before being seen, we were then taken into a small room with a nurse that spoke little English and watched while he poked and prodded on our screaming son. I won't go into all of the details but it was certainly the worst experience of my life. Once we were transferred to a room the experience got slightly better when we were met with the smiling faces of the nurses working on the 6th floor. Unfortunately, our relief was short lived once we had a chance to look around the small, cramped and disgustingly dirty room we were given. We spent 3 long days in this dirty room with our infant son, trying to keep him off of the filthy floor and away from the filthy bathroom. We were also bombarded with hours of training after sleeping for only 2 hours on the very small, very dirty and very uncomfortable chair/bed that was in our room.

The educator that came in the 1st day gave us a ton of information and we tried our best to absorb it all but it was very overwhelming. We felt that she was frustrated with us because we could not give her our full attention but the fact of the matter was that Nate was in the room at the time of training and he required a lot of our attention too. The hospital was on lock down due to the swine flu epidemic and we were not allowed any visitors for the entire time we were there. What were we supposed to do?

The educator that came in on the 2nd day quizzed us on the things we had learned the previous day and then gave us more information to digest. At this point I had had a chance to go home and collect myself enough to do a little bit of research on type 1. We had a lot of questions for educator #2 and when we asked them she made us feel completely stupid and incompetent. It was not a good feeling.

Once we were released from the hospital we came home and sorted through the MANY prescriptions & instructions we were given and began our new normal life with a son diagnosed with type 1 diabetes.

We were devastated, confused, scared, and dealing with a 14-month old with a chronic illness and a complete new lifestyle for our simple family of five.

Then the nightmare really began. Calls to the 24 hour line, messages left, calls not returned, one ridiculous answer after another from fellows, interns, doctors, and nurses who had no idea who we were and clearly did not understand how to treat diabetes in a 1 year old child. Promises were made, promises were broken and there was absolutely no follow-up by anyone at Children's Hospital. Life Specialist? Nope, never cared enough to call.

We attended Diabetes 101 and then requested the Take Charge class. We wanted to learn, be self-sufficient and do the very best for our son. When I called to schedule that class they said there was only room for 1 so my husband would not be able to attend. I attended this class by myself, feeling frightened, sad, overwhelmed and very disappointed that my husband, my partner, Nate's father was not there to learn these life saving skills with me.

There are never appointments available, we were forced to book 4 months or more out. Nate hated coming to the appointments. He never felt comfortable there because we never saw the same person more than once. How can we build a good rapport with anyone there when we only see them one time? Children need to be comfortable in their surroundings and feel trust and comfort from their medical team. That never happened.

We continually asked to at least be able to work with one CDE but were always turned down. There was no consistency between all of the different educators. One would tell us to do one thing and another would say the opposite. The system is broken!! It does not work. Nate is not a number, bar code or a case number! He is a little boy with diabetes that never received the help he needed from one of the leading children's hospital in the country area (although ranked #30 out of 30 for their Diabetes and Endocrine Disorders hospital). We have been sad, frustrated and angry and now we are leaving. My concern now is for the other parents who will be devastated with a T1 diagnosis and feel not only the overwhelming emotions of the diagnosis but also the complete frustration with the CMC system.

I do not want there to be confusion about my frustrations - - - there are some very lovely people in the endocrinology department. The frustration is that we never get to work with the same person. I am very grateful for the help we received getting Nate on the pump. I just wish it had not seemed like such an uphill battle once we made the pump choice that we did.

The billing system and department is a nightmare. We have been billed for things we should not have been billed for, we have bills for classes that our insurance will not pay and the overall confusion over what is an actual appointment versus a training class is RIDICULOUS. There is NO way we would have attended pump start if I had known it was going to be billed as a training class -- I am pretty sure I could have slapped that pod on Nate's bum without driving 30 miles and being billed $300 for a training class. Pump follow-up - - - again, I would not have driven 30 miles downtown with Nate to have him poked and prodded, his A1c tested, & blood pressure taken if I had know that that too would be billed as a training class. That is another $500 that our insurance will not pay because they only cover 3 training classes per year. Jim and I know what our insurance covers. We found out the hard way last year. If I had known that these appointments were actually classes - - - we would NOT have been there. Now, we owe CMC a ridiculous amount of money and if I have to decide between life-saving insulin for my son or paying for ridiculous charges from CMC -- the choice is pretty obvious isn't it?

The final thing that I would like to mention is that in the short time that we have been working with another practice, Nate's A1c has already gone down considerably. Whenever I had concerns about Nate's high bg levels I was told that A)highs were not as important as lows and someone would call me when they got a chance and B) at his young age an A1c of 8-9 is acceptable. How could I not be frustrated with this system? As I mentioned earlier, Nate will have diabetes his ENTIRE life. I find it hard to think about the complication he may have to endure because of high bg. Even at his young age it is so important to keep this terrible disease under tight control to avoid future complications.

Nate is my son and he has type 1 diabetes. Although I do not want type 1 to define him it is certainly a very large part of his life. I have hopes and dreams for my son as all mothers do. It breaks my heart to think about him not being able to live a long, happy life --- marriage, children, working hard, fulfilling all of his dreams. He deserves the very best and I will work hard my entire life to make sure he gets the very best treatment. Who knows what his future holds . . . he may be the one that finds the long sought after cure for diabetes. So, yes I am taking my son out of the mess that is the Children's Medical Center and giving him a better future and more control over his diabetes.

Best regards,

Laura Houston