My life with The Superhero and The Princess: Diagnosis

our lives were changed again. This time it was The Princess' diagnosis with ITP.

The first year with Diabetes seemed to go faster for me than the first year with ITP in our lives. It has been a LONG year of ITP.

You may remember a year ago we were waiting for lab results. We weren't completely sure what we were dealing with or why she was bruising like she was. Then we thought it would be a simple round of steroids, turns out steroids are NOT the first choice of treatment.

The treatment we choose for her comes with some NASTY side effects. We have learned to "beat" the side effects (most of the time)

I learned a lot about ITP in a short amount of time.

We were holding out hope that she would recover and go into remission within the first 6 months. It has been shown that 80% of kids will go into full remission within 6 months of diagnosis. Sadly, this didn't happen. Then we were hoping within 1 year. Well, that hasn't happened either. The Princess has had many IVIG infusions and many, many blood tests to check her counts.

She has also had a bronchoscopy, ear tubes, adenoid removal, and a tonsillectomy in the past year. Each one of these procedures required a platelet check and IVIG for most of them prior to putting her under.

Her platelets have not dropped as low as they did in the beginning, but they never stay up on their own. Her last check was 1 month ago and she was at 150,000. This is good, but they were 250,000 a month prior.

We are going to her hematologist for a check-up tomorrow. If her counts have dropped again, we will be discussing a bone marrow biopsy to rule out any other cause of her low platelets. Since she has had ITP for one year, she is considered to have Chronic ITP at this point, which means it will NEVER go away completely. She may have periods of remission, but may also have periods where her counts drop and she needs treatment.

(I will update after her appointment as to her counts, etc)

I have to say that this diagnosis has changed me and taken over my life more than I thought it would. It has put me in a "rut" if you will, with Diabetes. I can only seem to focus 100% of my attention on one disease and ITP has caused me to lose my Diabetes fighting "mojo". I am working on getting back on track with the D management. I don't want to let this disease to cause The Superhero any complications because I have not focused on him in the last year as much. Time to get out of the funk!

Even with another autoimmune disease in our lives, I am beyond thankful to have my beautiful, happy and healthy Princess in our lives!

Here are some pictures from her ITP journey...

Keep the prayers coming!

*Disclaimer: I am a mom of a T1 Diabetic child and a child with ITP/Asthma/Sleep Apnea. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*

I have never posted The Superhero's story, so I thought I would share. :)

I had this written up from his 1 year Dia-versary last year.

It all started on Sunday July 6, 2008. Rod and I had gone to a movie (Rod still remembers what movie it was and I always have to ask him, it was Wall-E). We left The Superhero with my parents while we went to the movie. When we got back to their house to pick him up we noticed he was breathing a little funny. We decided to take him to Urgent Care to have him checked out, only to find out that Urgent Care was closed. We then took him to the ER at Thunderbird hospital. We spent some time having his chest x-rayed and vitals checked. The doctor there acted like we were nuts and that our son was fine, maybe a little bronchitis. They sent us home and told us he should be better within a few days.

The Superhero seemed to get a little worse overnight. His breathing was becoming more and more labored. I made an appointment with his Pediatrician for that morning (Monday, July 7). His Aunt Tiffany and I took him in and had him checked out. He was still breathing weird and was becoming a little lethargic. The doctor checked him out and listened to his lungs. She noticed a throat infection he had. We assumed this might be why he was acting lethargic. She was not comfortable with the way he was breathing, but was not sure why he was breathing this way. We were told to monitor him and bring him in the next day if he seemed worse.

He did get worse again that night. He was still breathing abnormally and was becoming more lethargic. He was not eating a lot but was drinking A TON. We thought he was fine because he was staying hydrated, which we knew was important. We made another appointment with the Pediatrician. She checked him over and was still not comfortable with his breathing but could not put her finger on why he would be breathing the way he was. We brought him home and tried a few breathing treatments to see if that would help. The next day, Wednesday July 9th he seemed to perk up a little and we thought he was getting better. He ate his first meal in days and seemed more alert. We called the Pediatrician to let her know he was doing a little better.

Late that afternoon, he seemed to get worse again. He threw up one of his meals. I let the doctor know, and she prescribed something to help his upset tummy. I decided to wait it out since we had another appointment with the doctor in the morning. I did go out and get a video monitor so I could watch him breathe that night while he slept. Rod and I watched him off and on all night. I would wake up and turn on the monitor to watch him breathe for a few minutes and then turn it off. We woke up in the morning fully intending to take him to the Pediatrician.

Rod went off to work and I had my mom come over so I could shower before his appointment. Before she arrived I was getting The Superhero’s medicine ready with some juice. I could not do it one handed, so I put him on the floor and he almost fell over. He could not stand on his own. He was so weak. All he wanted to do was be held and to sleep. My mom watched him while I showered. When I came out into the living room she and I decided to take him straight to the Children’s Hospital. We knew if we had gone to the Pediatrician again she would have taken one look at The Superhero and sent us there anyway.

We finished getting everything ready and headed out. We called my dad and Rod on the way to let them know we were headed to the ER. My dad picked up Rod on his way down there. My mom was driving and I kept peeking in the back seat to make sure The Superhero was still breathing while he slept. As soon as we got there we were taken in to a room in the ER. The doctor came in and asked the routine questions. It seemed as though they thought he had swallowed something. He was taken for x-rays of his throat. Nothing. They tried a steroid breathing treatment. Nothing. No change in him at all. During this whole week I had been researching online and knew his symptoms could mean Diabetes, but I thought there was no way. I mentioned this to the ER doctor and they went ahead and checked his blood sugar.

I sat on the ER bed with my baby in my arms as the meter read 598. I immediately started to sob like a baby. I remember hearing my mom ask if it could be that high for any other reason. The doctor assured us there would be no reason for his blood sugar to be that high than Type 1 Diabetes. We were told he was going to be admitted immediately and would be taken to the ICU.

One of the doctors from the Endocrine team came to visit us while we were still in the ER. He explained a little to us about The Superhero being in DKA (diabetic ketoacidosis). He told us the IV team would be coming in to insert an IV into The Superhero ASAP because he was severely dehydrated.

After his IV was in and the room in the ICU was ready, we were moved to our room where we spent the next 3 days waiting for some improvement in The Superhero. He was in someone’s arms almost non-stop. He laid on me and on his NaNa for comfort. He laid on his Daddy and Pompa when we needed a break. I stayed with him each day from morning until late at night. My mom and Rod stayed with him at night. During his time in ICU he had 2 more IV’s inserted and began to have his finger poked every hour for blood sugar checks. He finally started to turn around on the 3rd day. He seemed to perk up a bit and was excited to get to eat again. We were moved to a regular room where we were able to bring him more toys and a wagon to play in (and ride in).

Rod, my parents, my brother/ sister-in-law and I learned how to manage diabetes in a crash course before The Superhero was released. We each learned to do finger pokes and check his blood sugar. A few of us practiced giving shots of insulin. Then we were released to manage this monster on our own. We have had to learn a whole new way of living. We can no longer rush out of the house in 5 minutes. It takes time to check The Superhero’s blood sugar and treat if needed. Pack all the supplies needed for every trip out of the house. It took a few days for us to feel comfortable leaving the house, a little longer to feel comfortable going out to eat at a restaurant, and even longer to let him stay with someone other than Rod or I for more than a few hours.

We learned how to adjust his insulin needs on our own. We learned how to count carbs and give insulin to cover his meals.

The Superhero pre-diagnosis (he had lost lots of weight)