The results are in...

I called the rheumatology office earlier today and then anxiously waited for the call back from the doctor.

All labs came back "normal". The only one to come back abnormal was the ANA screening. This is the same one that initially came back positive and started this journey. She said it came back with a higher tiger than before. And she will be mailing me a copy of the results so I can see them.

Then she brought up something interesting. She mentioned the fact that The Princess has has a few IVIG treatments. Those are made up of immunoglobins from donors. Lots of donors. Donors that could potentially be positive for ANA tests. Her thought is that The Princess could just be showing positive due to some donor who is positive.

I asked how long she would need to go without IVIG in order to get a true measurement of her ANA. She said it would take 3-4 months to see true results without IVIG. So far we have only gone 3 weeks from treatment 1 to treatment 2. And 2 months between treatments 2 and 3.

And she is looking pretty bruised again. We are 3 weeks post treatment this time around. I am going to take her for lab work soon to see how much she dropped from last week.

So, we watch and wait. If the ITP is still around at 6 months post dx, which will be in October, then I will lean toward a true positive ANA. We will just keep an eye on her and see how things go.

The results from today give me HOPE. And I like hope.


*Disclaimer: I am a mom of a T1 Diabetic child and a child with ITP/Asthma/Dysphagia. 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.*

No news is ... no news.

Just wanted to update you all really quick.

We took The Princess to her hematology and rheumatology appointments on Thursday.

I am SO thankful that Wendy mentioned having ANY lab work done with the same poke. The Princess woke up saying "No poke me!". When we went into our exam room at the hematology appointment I asked if they could talk with Rheumatology to see what labs they might want. They agreed that one poke would be best for her, and took care of getting the orders faxed over from the other building. So, we had ONE poke with FIVE vials of blood.

And thankfully, her platelets are UP still from the last round of IVIG. Her count was 127,000. We are hoping they stay up for a long while this time around. She follows up there again on the 30th of this month.

Then we wasted the day doing some shopping and having lunch with my mom. Then we rushed back to the children's hospital for the Rheuma appointment.

Part of the lab work requested earlier in the morning was to have The Princess pee in a cup. Yeah, that didn't happen. I tried and tried and tried. She wanted NOTHING to do with the darn cup. And at one point I had a very small amount collected and she decided to hold the cup herself. I thought this would be good and maybe she would actually cooperate. Nope. She dumped the little bit I had in the cup. I am sure if they still decide they want to run a urine sample we will try again, or just cath her!

Anyway, back to the appointment... The doctor came in and we went over The Princess' entire medical history. With a positive ANA screening, which was the test we did at the peds office, there is a chance she will develop Lupus. However, some people (I think she said 30%) test positive for the ANA test and never develop Lupus. Since we have other autoimmunity in the family (The Superhero), she will want to follow the Princess about every 6 months regardless of how the rest of the tests come out.

We are still waiting for the rest of the lab results. I am not even sure what tests she ran, but we will know more this week. She said we should have the results by Monday.

If all tests come back ok, then we will assume that for now The Princess does not have Lupus. If any of the tests come back positive, I am not sure what we do next exactly since I don't know what she tested for.

If The Princess does in fact have Lupus at this time, we would start a steroid treatment. The doctor is REALLY hoping we don't have to do this since the Princess is SO young. We are hoping the same.

Anyway, that is the update for today. No news is no news this time around.

I will do my best to update as soon as I get the results this week.


*Disclaimer: I am a mom of a T1 Diabetic child and a child with ITP/Asthma/Dysphagia. 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.*

Big day tomorrow...

After my post yesterday, and lots of thinking and worrying I decided to try to get The Princess in with the Rheumatologist sooner if they had any cancellations.

I was fortunate that when I called this morning they were able to get her in tomorrow afternoon at 2pm.

So, now we have Hematology at 10am and Rheumatology at 2pm. With some shopping at the mall in between. :-)

I will update when we know more.

For now, I leave you with this sweet, sweet face.

I hate that she has to go through any more medical anything, but she does it all like it is no big deal to her.

Amazing.

(another huge THANK YOU to the Small Acts of Kindness quilt group at New Life Community Church, she is in LOVE and carries her quilt every where, even when it is 100+ degrees outside)


***And a HUGE thank you to everyone who has commented on the blog or on FB. I appreciate all the thoughts and prayers being sent for The Princess and our family. You all mean more to me than you could possibly know. ***

*Disclaimer: I am a mom of a T1 Diabetic child and a child with ITP/Asthma/Dysphagia. 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.*

Tomorrow's the day...

The Princess has two appointments on Thursday and The Superhero has one appointment as well.

We go down to the children's hospital bright and early for her modified barium study. Then we have her hematology appointment. Then in the afternoon, The Superhero has a pulm. appointment.

We are hoping and praying for a few things...

1) The Princess to have outgrown this swallowing disorder. I am tired of mixing gel into her liquids. And I am sure she is tired of drinking them.

2) Higher platelet counts. She is still bruised, though not nearly as much as last week. So I have hope that they have gone up enough to avoid an IVIG treatment. I really hate putting her through that.

3) Praying for answers as to why The Superhero has had croup so many times. Is it asthma? And should we be doing anything different?

I will update FB throughout the day and the blog either in the evening or by Friday morning.

Thank you all for your thoughts and prayers.


*Disclaimer: I am a mom of a T1 Diabetic child and a child with ITP/Asthma/Dysphagia. 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.*

A Princess Update

The Princess, oh The Princess.

She is going in for another modified barium swallow on Thursday to see if she has outgrown her dysphagia. (crossing fingers, and toes!).

She also has her hematology appointment on Thursday.

I feel extremely burned out on this ITP crap.

I haven't updated much about this lately, because I am SO tired of it all.

I posted HERE about what I had learned about ITP so far. That was back in MAY. A lot has happened with her and her appointments since then.

She had her last IVIG in May and her counts went up a little  and then at her appointment 3 weeks post IVIG were around 33,000.

Then a week later they were 21,000.

Then another week later they were 19,000.

We were in "watch and wait" mode.

Those counts are LOW by normal means, but not quite low enough to put her through a treatment.

Then miraculously the week after they were UP to 65,000. We all thought she was making platelets on her own again and scheduled an appointment for 4 weeks later.

Only 2 weeks after that appointment she was covered in bruises again and I asked for labs to be drawn.

We were fortunate enough to have them send a lab order over to a local lab rather than have us come downtown. We drew labs last Monday and her count was down to 19,000.

I completely lost it when I heard that number. Not because I really thought they would be higher, I knew they wouldn't. But because this means she is probably NOT in remission yet. And it hurts me to know that this is not over.

Again, that is low but not enough to put her through a treatment.

We go back this Thursday. She is still pretty bruised. So I am anxious to see what her counts are this week.

I am tired of this disease taking up so much of our time. I am tired of this disease causing my 2 year old to need almost weekly lab work. I am tired of this disease running my/our lives. I am just tired.

Will update after her appointment on Thursday.

*Disclaimer: I am a mom of a T1 Diabetic child and a child with ITP/Asthma/Dysphagia. 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.*

Waiting is HARD to do...

First I would like to say, Hello blogging friends. Sorry I have been MIA. Things have been CRAZY around here, several posts for another time.


As I sit here in tears, I felt the need to get this out, and ask you all for thoughts and prayers.

Over the weekend I noticed bruises on The Princess. She has kind of always (since she could walk) had them on her shins/knees. She is clumsy and it was just "her". These bruises this time seem different. They are ALL over her legs, front and back, including her thighs. All over her arms. And all over her back. I had this gut feeling all weekend telling me to take her to the pediatrician.

This morning I called and made the appointment for the afternoon. I fed the kids lunch a little early and put them down for naps. The Princess was supposed to be in her room napping, only a while after I tucked her in she was crying, a lot. I went to check on her and her face was all bruised up. She said she hurt herself on a book. Sigh.

After seeing her face I am thankful I had already made the appointment to take her in to the pediatrician. I got the kids up and dressed and we headed to the doc. Once the doctor came in, she looked at the bruises and told me it looked like ITP (I had no idea what that was). The only thing I asked is how it would be treated, she said with steroids. She also said they also look for leukemia, though she said The Princess didn't look sick enough for that to be it (PRAYING she is right).

She ordered blood work and sent us on our way. She told us she would hear back today/tonight and she would give me a call.

I then dragged two tired, cranky, misbehaving children to the lab. They would NOT sit still and I was losing my patience fast. After several minutes we were called back. The Superhero cried for The Princess, who cried too. He was so concerned that they were hurting her. She was crying for me to "stop them!" Seriously, not fun.

Now we wait. I keep looking at my Princess and just want to cry when I see her little bruised body.

Her legs.

Her arm...(and YES, that blue spot is a NEW bruise)

And her bruised face.

Please PRAY we find answers and she can be treated and outgrow/get over this! I will update when I know more.


*Disclaimer: I am a mom of a T1 Diabetic child. 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.*

Feels like we are sitting ducks...

Well, as you may have read in a previous post (How much is too much?), The Princess worries me. I feel like we are sitting ducks waiting for Diabetes to hit her at any moment.

If you read this post, you know we had some blood work done. All of her blood work came back fine. Her A1C at the time was 5.6 (average BG around 110), nothing alarming, but, this is what I read...

A1c level of 5.6 - 5.9%: The individual level of mean blood glucose has exceeded the normal upper limit of the assay range, indicating an abnormality in the expected normal human range. While this level is not recognized by the ADA as diagnostic of diabetes, it does signal a level that may be indicative of impaired glucose tolerance (IGT) and/or pre-diabetes. Anyone with an A1c in this range should seek medical attention to determine the cause of the elevation in mean blood glucose.

Now, with her age, I think an average of 110 is probably OK, BUT she has many signs of Diabetes looming. And they are not going away or getting better!

She drinks A TON of water (or whatever drink is around).

She takes a cup of water to bed with her EVERY night, and throws an absolute fit if you take it away from her.

She wakes up with a FULL diaper, and then pees on the potty a ton too.

She will DOWN a drink like it is going out of style! (Example: The Superhero had a LOW blood sugar at the mall a few weeks ago and refused to drink the juice I had opened. The Princess saw it on the table and sucked the whole thing down in seconds.)

She is CRANKY. She cries off and on a lot, and it is getting increasingly more so. She even cries when dropped off at church, or any time away from me. Which could be her age, or at least partly. They did tell me today at church that it took them a while to get her calmed down today.


THEN, last night, the kids and I were having another picnic on the floor and The Princess wanted her Sprite (we had McDonald's, I know, healthy.) She sat there and SUCKED IT DOWN in matter of a few minutes. It seemed a little odd to me. I waited a few minutes and then checked her blood sugar, just out of curiosity.

First reading was 169. Hmmmm...re-check (thinking there MUST have been sugar on the finger or something). Recheck was 171!

So now, I am MORE worried than before. Her BG did come down to 88 by the next time I checked her about 1 1/2 hours later. But, I still cannot help but worry.

She had her MMR last month, and now I am a worried, nervous wreck that D is looming like a ticking time bomb that will go off at any moment. I am constantly thinking that the next virus she gets will be "the one" that sends us down another diagnosis path.

I know if it happens, we will deal with it. But, I would much rather NOT deal with it. And I know logically we WILL NOT miss the diagnosis, but the irrational part of me feels like I would.


This morning The Superhero told me he wants The Princess to have Diabetes, so she can be like him. It was so sweet. I think that would be the only good thing about her being diagnosed.


Please keep her in your prayers. I would like to pray that she not get diagnosed, but if she does get diagnosed someday, I pray that God gives me(and the Daddy) the strength to make it through the challenges that lie ahead.

A SUPER sized post

I feel like SO many things have been going on and I have not been very good at updating everyone!


So, here it is, a SUPER sized post to update you all on what has been going on around here.

1) School's OUT for the summer! Ok, so I only get 4 weeks off, 3 weeks now and 1 in July (I scheduled it this way), BUT I am enjoying my time off as much as I can. I go back to work on Monday and have LOTS to get ready for next school year. I will be teaching 5th grade math and the school has never been grade level specific before, so we have LOTS to get done.


And, I know, it is weird that I am a teacher who works in the summer. But honestly, I don't mind. We are not a local school district. We are a charter school run by K12, a corporation. So, it is a little different for us. And I am ok with it. I LOVE my job enough that it does not bother me one bit. I still get some time off and then get to prepare for the upcoming school year.


2) Quarterly Endo visit. We had The Superhero's quarterly endo visit on the 1st of this month. We were super excited to see Dr. D at her NEW office. She was as great as always and I was happy to see that one of the nurses we liked from the old office followed Dr. D to her new office. We discussed The Superhero's tummy aches (he complains A LOT), starting pre-school, Dexcom (LOVE), and of course my report card, aka the A1C. I am happy to report that our A1C only went up from 7.8 to 7.9! I am SO happy because I was expecting a little higher.


3) Blood Work. It has been a year since The Superhero had his annual blood work done and that means getting it repeated. We needed all of his annual labs done which included celiac, which is good since he complains of these tummy aches so often now. And since The Princess has started showing some signs of Diabetes as well (excessive thirst, peeing through diapers, crankiness), I asked to have some blood work done for her too. And our Endo is SO awesome that she ordered the testing for us. SO my mom and I took both kids to a "kid friendly" lab to get the work done. I was very pleased with the lab techs this time. There were two of them to help with both kids. The Superhero sat still for them, but CRIED the whole time. He kept telling me "Mommy, I don't like this! Make them STOP!". It was awful! But, he held still and it was over quickly.

The Princess on the other hand, I thought she was going to hyperventilate! She cried SO much it was crazy! It does not help that they always have a hard time finding her veins. The first tech got two vials of blood out of the first arm. The second tech got the other vials out of the other arm. So, she ended up needing 2 pokes. After they were both done, the second tech (who was much more personable) offered both kids a miniature doughnut. I don't think they get a lot of kids in there and this was from their break room. :) It was SO nice of him to offer and my kids enjoyed their doughnuts a lot! The Superhero talked about his blood work and the doughnut all day!

Some of The Superhero's blood work has come back and was normal. (just the cholesterol, kidney's, and something else, but not the celiac yet) I will do another post once we get all of his results and the results from The Princess' testing.


4) The Dentist. I braved the dentist with both kids, by myself. I usually take my mom with me so I can hand off one kid while the other is being cleaned. She was out of town this time, so I had no choice but to do it alone. The kids were great! The Princess' teeth look great. We need to work on getting rid of her binky, but other than that, she is great! The Superhero looks ok too, but he does have one cavity already that will need to be filled the next time we go in. He was very excited to get a new toothbrush. And I think even more excited that it was GREEN!


5) The potty. The Princess has recently started showing interest in the potty. She tells me in her non-verbal way that she needs to potty. And she has ACTUALLY gone several times now! I made the decision to capitalize on her interest and bought her some panties and some pull ups. We tried the panty thing today, she had MANY accidents. I put a pull up on for the afternoon and we did better. I think I am going to give it a few days of taking her in regularly before completely switching to the panties. BUT I am still in shock that at 19 months old, she is pottying like a BIG girl!

The only problem now is that when I give her an M&M for pottying, The Superhero thinks he needs one when he potties. I had to tell him that when he was learning we gave him his candy then. And now that she is learning, it is her turn to get the candy. It is not working so well. We will see how this goes.