One Year Ago (4/25)...

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.*

What a FUNK, and some updates...

Well, HELLO there!

Has it really been 4 1/2 months since my last post? Wow!

Life has been crazy.

Isn't it always?

And I have been in a major FUNK.

Diabetes FUNK.

ITP FUNK.

Sleep FUNK.

Blogging FUNK.

You get the picture.

Time to get out of this FUNK and move forward. I miss blogging, I really do. Just trying to fit it into my life these days has been impossible. Clearly.

So, what have we been up to since November 2011?

Here is the quick bullet point update...

• The Princess had a sleep study done in December 2011. We had this done due to her continuing sleepless, restless nights. She hated the study and being hooked up to everything you can imagine. The results showed mild sleep APNEA, for her mostly hypopneas. It made total sense to me. She has never breathed normal when sleeping. Ever. I have always noticed a change in her breathing while she was sleeping. As to why, they have no idea. She doesn't fit the description of a "child with apnea". She isn't overweight and she didn't have enlarged tonsils. We are still working with her doctor and I have emailed a specialist in CA to see what else we can try.

• The Princess had her tonsils out in December 2011. We did this in response to the above diagnosis. I pushed to get it done before the end of the year since we had met our out of pocket max for her. Of course, anytime we do any procedure, we have to get her platelets checked first. At this time, they were too low for this messy procedure and we had to do another IVIG to boost her counts before surgery. We also had to stay overnight for observation due to her ITP. And let me tell you, she is NOT a very patient patient! She tried taking her IV out a few times before we taped a sock over it. She would not let me leave the bed without FLIPPING out. It was nuts. But, we only stayed one night and she healed fine. Unfortunately, this did not help her sleep. Or it hasn't appeared to in the months following surgery.

•  The Superhero had his quarterly endo appointment in December and his A1C was still higher than I like. He is back in the 8's and I can't seem to get things straightened out. We go back in March and I am praying for better numbers. There is nothing consistent about his BG these days. This is making it HARD to know what to change and when. I am sure it will settle down at some point.

• Both kids had croup in January. This meant steroids for both. For The Superhero, this meant HIGH BG's and, hello, that is not helping the A1C! And for The Princess, it boosts her platelets. This can be  deceiving and make it look like the ITP is better, when it really may be false hope

• The Princess has gone for platelet counts several times over the last few months. Each time being either after an IVIG treatment, or after steroids, her counts have been good. We go back again in April. It will be 1 year since her dx with ITP. If her counts drop by then, we will be discussing doing a bone marrow biopsy, just to make sure there isn't anything else going on.

• The Superhero is still in pre-school and loves every minute of it. He has been signed up to start Kindergarten next year. I am still in denial.

•  The Princess has been put in and taken out of daycare again. I need her to go so I can get work done during the day, but she got sick 3 times in the 2 1/2 weeks she had been back. I have found a much better solution that is working out SO much better. A fellow D Mama and friend of mine who lives 1 mile away does pre-school with her niece and nephew a few days per week and has graciously allowed me to drop The Princess with her three days per week. The Princess is in LOVE with her and her kids. They do so many fun things that I think if there was a choice, The Princess would live over there. 

Whew... Now that you are caught up on what we have been up to, I promise, ok maybe I shouldn't make a promise I am not sure I can keep... I will do my best to keep up with blogging more often. I miss it. I really do. I just need to make it fit into my life again.
 

*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.*

BIG Princess News...

My Princess is FINALLY potty trained! 100%! She has had NO accidents during the day or night in over a week. And what did she get for that? Besides the prize every day, of course...

She got her EARS PIERCED!

We told her last week that if she went a whole week with no accidents, she could get them pierced. Well, she must have really wanted holes in her ears because she DID IT!

Here is our ear piercing experience in photos, and then a little about how things got complicated...

She has NO idea what is coming...

 

Putting dots where the studs will go...

Getting a little nervous, but still not really sure what is happening...

Get ready, get set...

...GO!!!

She calmed down once we showed her the earrings in the mirror. Still not happy though.

Beautiful little pierced ears...

And then the drama came in. No more than 2 hours after she got home, she snagged one on a couch pillow and pulled it out. Daddy couldn't get it back in. So, I took her back up to the mall and had them do it again. :-(

She KNEW what was coming the second time and it was NOT fun.

I had to tell her she HAD to let them do it, or we had to take the other one out. She sat still and let the girl put it in. And she now has 2 beautiful flowers again. And I have a similar pair so we can match.


And to ruin my "fun" I woke up in the middle of the night wondering how her ITP and ear piercing would go. Hoped and prayed her platelets were still up around 64,000 where they were on Tuesday. I seriously should NOT have to worry about something like another stupid autoimmune disease when all I wanted to do was have girl time celebrating a HUGE accomplishment. Oh well. Not much bleeding and the ears are done.


*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.*

Appointment Update

Yesterday we went for The Princess' hematology and ENT appointments.

We received great news at hematology. Her platelets are still up, 94,000! The doc said that since it has been 6 weeks since the last IVIG treatment The Princess is probably making platelets on her own.

We have heard this before, and then 2 weeks later her platelets dropped. I am trying to hold out a little hope this tme.

The doc also said that she really feels this is just ITP and she does not see a need for a bone marrow biopsy at all. That was also great news.

We go back on the 15th, or sooner if needed.

The ENT agreed with me that a second set of ear tubes would be beneficial. The left ear, ehich has no tube currently, is filled with fluid. We will also have her adenoids removed. This is commonly done when a second set of tubes is needed. I was told the scheduler would call me.

To my surprise, I got the call this morning. They have an opening tomorrow for the surgery. Since her platelets are up today, I took it.

So, she will go in tomorrow morning to get all this done. And hopefully she will feel great by Friday for her birthday. Maybe she will even start to sleep through the night!

I can 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.*

Where do I begin?

Sometimes I don't even know which way is up any more. Our crazy normal continues around here. The kids have both been sick off and on for the past 4 weeks or so. We all currently have a sinus/ chest congestion. We all sound like we have bronchitis/ croup going on.

The Princess just really started sounding bad last night/ this morning. She woke up struggling to breathe, super seal sounding, and wheezy. I called and scheduled an appointment with the pediatrician.

Before we left I remembered that the hematologist had said she did not want The Princess put on steroids if we could help it. At the time she said it, I didn't ask why. It wasn't relevant at the time. I am thankful I remembered this today though. typically, for croup, we would put The Princess on steroids to help her.

So, I called the hematology nurse and left a message. She called me back on our way to the pediatrician. We discussed that of course if The Princess really needed the steroids to help her breathing, we would do it. But, if we can avoid them, we should.

Since The Princess has has ITP for almost 6 months, we have to start looking at other possible causes of the low platelets. It could still be just a low platelet problem, ITP. Or there could be a problem with her bone marrow. Even with no other symptoms.

So, we will be discussing a bone marrow biopsy with them at her appointment next week. If we give her steroids now, it could affect her bone marrow and give us false results.

The one plus of this, if there is one, is that we should be able to combine and do both the bone marrow biopsy and the ear tube/adnoidectomy/sinus cleanse all at the same time.

I will update after both appointments on Tuesday. Until then, please pray for calm nerves around here. I am trying not to stress about any of this and to give it all to God. It will all be ok, one way or another.

*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.*

Where have I been? An update...

Hello Blogging World!

Things have been nothing but CrAzY around here, as usual. I guess that is our normal now.

Last time I posted about The Princess she had a day of an IVIG treatment prior to her bronchoscopy.

And I realized today when my dear friend, Chasiti, posted on my FB wall that she wanted an update on The Princess, that I hadn't updated anyone about anything. I have been in a funk of sorts with everything going on.

Well, here is the update...

• We had her bronchoscopy on 9/15. She had her platelets checked that morning and they were above 100,000 and she was cleared for surgery. The bronchoscopy was done and over within minutes. The pulmonologist said she had the most beautiful airways you could imagine. We discussed the swallowing disorder and she, along with the other pulm. docs, are investigating the diagnoses of dysphagia. She said that more and more kids are being diagnosed with it from their radiology department that they are wondering if they are over-diagnosing. We discussed transitioning The Princess to regular liquids over time. I took it upon myself once we were home to try The Princess with plain water. She has been doing GREAT since. She originially was coughing a lot when drinking. Now I am wondering if her asthma was out of control back then and that is what caused the coughing and not her swallowing at all. Anyway, for now, I am doing plain water mostly and she is in Heaven.

• We have been back to the dermatologist and the rash on her face was not clearing up. She started her on 2 months of Zythromax, to be taken 3x per week. Her face is clear now and I am hoping it stays that way.

• The Princess was diagnosed with a Sinus infection back in August.  After 2 rounds of antibiotics I took her back to the pedi, along with The Superhero. They were both very sinusy (is that a word?) and had goopy eyes, etc. We decided they both had sinus infections and they were both put on one month of antibiotics. The Princess can only have Zythromax, so we upped the dose this time. 

• We followed up with the ENT for The Princess last week due to her ear tubes. It has been a year since they were put in.The left one fell out a while ago and was stuck in the wax. The ENT was able to get it out. The right one is still in place for now. We also discussed The Princess' sinus infection. I am concerned that we are putting her on antibiotics for such a long period, and there is only ONE she can even have right now. I am very worried about the possibility of her developing antibiotic resistance. I have even contemplated pulling both of my kids out of school and keeping them in a bubble at our house. We stayed in most of last winter due to illnesses and it seemed to help. But, that is not as realistic this year. I am busy with work and can't have both kids home with me all the time. Anyway, back to the ENT. He said to keep her going on the antibiotics we were doing for now and to follow up with him in a month. He mentioned the possibility of surgery for her sinuses. We have an appointment on the 31st of October.

• In the meantime, I looked up other ENT's. Not because I don't like ours, I do, but he does not do any sort of surgeries at the children's hospital. And after her ear tubes were put in at a surgery center, and they kick you out the door as if she was an adult, I decided I wanted to keep any surgeries that are required at the children's hospital if we can help it. So, I found a ped ENT who does surgeries at PCH, and he has an office about 3 miles from my house as well. PERFECT. I called yesterday and they were able to get us in TODAY. He looked at her CAT scan from the end of August and agreed she had a sinus infection. He said he would not do surgery for that alone. BUT her left ear, the one with no tube currently, was filled with fluid. He said a second set of tubes was probably not out of the question. And if we put new tubes in, we will take out her adenoids and clean out her sinuses while we are in there. We go back in 2 weeks on the 26th to see how her ear looks and make a decision.

So, that is where we are at right now. I am thinking surgery for the ears/adenoids/sinuses will be happening. And that means a platelet check and possible IVIG beforehand to make sure she doesn't bleed all over. Fun times in our house!

I feel like the "If you give a mouse a cookie..." series right now. :-) (Those of you with small children HAVE to know what this book is)

At least she is still pretty happy and growing up WAY too fast...

*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.*

The longest day of my life so far...

I have had plenty of long days in my life. But nothing like today!

We started with The Princess' hematology appointment. Some good news there, sort of. Her platelets were down from the 67,000 we had last week. 25,000 today. This is of course very low, but not low enough to warrant a treatment. We will go back next Wednesday and will be prepared to stay for treatment if platelets continue to drop.

Then we went to the pediatrician. This was not originally on my plan for today, but The Princess woke up with a terrible cough at 2am. Very croupy sounding. Her inhalers seemed to help after a while and she went back to sleep around 4am. She kept saying "my ear hurts" and "my don't feel good".

The ears looked fine to the pediatrician, but we wondered if there was some sort of pressure she was feeling since she continually complains of ear pain, even with no infection. The pedi ordered a CT scan of the sinuses, STAT.

I called the lab and got an appointment for a little over an hour later. Just enough time to grab some lunch before the scan.

The kids and I enjoyed a picnic lunch in the back of our van. They thought it was cool to be in the van and out of their car seats.

Then we went for the CT scan. The Princess was SCARED. Poor thing. I had to stand above her and try to hold her head still while they scanned. She cried. Luckily, she held still enough they got what they needed. We would have results before the end of the day.

We got back in the van and I told the kids it would be a good time for a nap while we drove back down to the children's hospital for the pulmonology appointments. The Superhero was fast asleep. The Princess kept herself awake coughing her poor little head off.

I drove around extra to waste time and let The Superhero sleep. I ended up pulling over at one point to do The Princess' inhalers. She just can't seem to quick coughing. After some wasted time we headed to the appointment. Both kids had pulm. appointments. The Princess had a follow up for her asthma and The Superhero had his first appointment for a croup evaluation. He has had croup WAY too many times this year.

The appointment went well for both kids. As well as can be expected I guess. The Princess is starting steroids tonight for her "croupy" cough. She seriously can't stop coughing! She has barely stopped coughing for more than a minute since mid-day today. Crazy.

And The Superhero officially has asthma as well. He actually thinks the inhalers are cool, for now. We will follow up for both kids in November.

The doc was concerned that The Princess did not pass her swallow study again. She is going to schedule a bronchoscopy to see if something more serious is going on. This will be scheduled soon.

After that appointment, we headed home. Finally. I was/am wiped out!

I got things ready to make dinner when I got home. Then I got the call from the peds office. The CT results were in and The Princess officially has a really bad sinus infection. Antibiotics for the next 5 days, off 5 days, on 5 days. And a re-check of the CT scan in a month.

So, here we are, $150 in copays and $100 in rx's later.

So thankful today is almost over. Now hoping for better sleep tonight than last night.


*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.*

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.*

Just one more thing, again?

Yep, it appears we have added ONE MORE THING to our plate. I am still trying to figure this one out.

During my back to school teacher meeting a couple of weeks ago I was explaining ITP to a co-worker. Another co-worker/friend overheard our conversation and asked if I had ever tested The Princess for Lupus. Her husband has Lupus and has several of the "issues" that The Princess has.

I brushed it off a little since we had back to school meetings and start of the school year craziness going on. Later that week I started thinking about and researching a little more into all of the "issues" The Princess deals with.

Could her low platelets be related to Lupus? Yes.

Could her odd breathing be related to Lupus? Yes.

Could her leg pain be related to Lupus? Yes.

Could her dysphagia be related to Lupus? Yes, apparently so.

Could her restlessness and seemingly lack of restful sleep for her entire life be related to Lupus? YES.

Could the fact that she FREAKS out when it is bright outside (Hello, AZ!) be related to Lupus? YES.


Even after reading all that I read, I did not think it could be possible. She seemed to have several of the "possible symptoms" of Lupus. All of those things combined point to Lupus. So, what is a worried mama to do? Take her in for blood work, of course.

Last Tuesday the 2nd I took her in to her pediatrician. I explained my new theory and since she knows us well, she did not question me asking her to test for Lupus. The nurse came in and drew the blood. We would have to wait about a week for the results.

Over the following weekend, while still waiting for the results I thought about it A LOT. We spent about an hour outside on Friday night while The Superhero had soccer camp. It was HOT. Hot is an understatement. It is August in AZ after all. The Princess DID NOT want to be outside AT ALL. She kept saying she wanted to leave. Then we went for ice cream afterward and she just sat there. It was very strange for her to just sit there. Staring into space. Not interested in her pink sherbert. Just not herself. It was weird. Photosensitivity, perhaps? Ugh.

The weekend came and went. Then it was Monday. I decided to call the peds office and see if the results were in yet. I knew it was almost a week, but not quite, so I might have to wait. The results were in. BUT, no one in the office that day could "interpret" the results until the next morning.

Ugh.

Then today both kids were acting "off" and our friend's kiddos all have strep throat. I decided to take mine in for throat swabs. Thankfully that was negative.

While we were there, I asked about her lab results. Our doctor is out of town. Our Nurse Practitioner was not there. Our normal nurse was also not there. The med student, who was working today with a different nurse pract. came in. She basically said "I have the results. They are positive. Are you seeing a rheumatologist?"

Um, NO.

"Well, we are not sure what the next steps should be. Dr. F. usually sees her and knows her history, you should just follow up with her when she gets back next week. Would you like a copy of the results?"

Um, yes, I want the results. I will call a specialist myself!

I LOVE our docs office, but really, this was the worst experience when telling me lab results today. It did not make me feel better.

Before completely losing it, I called Wendy on my way out of the office. She is really good and helping me stay focused and not freak out. :-) (Thanks, Wendy!)

I then drove over to my mom's house. When I got there I looked up the number to the PCH rheumatology office and chose a doctor, then called and made an appointment for next Tuesday.

So, now we wait. I am anxious to see what they say about her results. I am anxious to know what our next steps will be. I am doing my best to have Faith that all of this is for a reason. Today I am struggling with this and all the "why us" questions. It will get better. It has to.

I will update next week. We see the hematologist on Thursday and the Rheumatologist on Tuesday. I am sure I will more than enough to say again after both appointments.

For now, I will just go off and cry. Sigh.





*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 Quick Update

Went downtown early this morning for the swallow study and hematologist appointments for The Princess.

She went into the radiology room for the swallow test and freaked out a little thinking they were going to poke her. Once I explained that they were not poking her, she was ok. She drank/ate her "barium" mixes and was done pretty quickly. Unfortunately, nothing has changed. She still swallows thinner liquids and some goes toward her lungs. Not good.

She should have outgrown the swallowing difficulties by her age. Since she has not, we can wait it out and just do the re-check in 6 months. Or we can try a stimulation therapy, which has been proven to strengthen the muscles and retrain the body to swallow correctly. We would have to go for therapy 4-5 times weekly for 6 weeks or so.

At this point, I have no idea what we are going to do. I will talk to her pulmonologist next month and see what she thinks.

Once all that was over, we headed over the the hematology office. They drew her blood and she got her prize/stickers. Sad to say, her platelet count was down to 13,000.

Sigh.

We had the same options we always do, watch and wait or treat with IVIG. We chose IVIG this time since she will be starting at the daycare 3x per week next week.

Since it was still morning, we went ahead and stayed today for the treatment rather than coming back tomorrow.

We were lucky enough to have an amazing person come put her IV in this time around. He got it in on the first try and she did NOT cry AT ALL! I was impressed and will totally request him if we need another one! Best IV experience EVER.

Then on to the infusion area. She got all hooked up, got some snacks, filled her drink up, and started a movie. Then benedryl and tylenol were given. And after a while she fell asleep. She was more restless this time around. I am not sure if she just wasn't feeling great, was over tired from being up early today, or if it was all the noise in the clinic today. She ended up sleeping for most of the treatment and woke up at the end to watch more Cinderella.

We are home now and she is watching Tinker Bell. Dinner will be here soon and then off to bed for both of us!

I will be pre-empting the side effects we had the first time she had IVIG, and starting Zofran and Tylenol with codeine tonight before bed.

Thank you all for your thoughts, prayers, and messages. I am so thankful for the support of all of my friends and family!

(also, I cancelled The Superhero's pulm. appt. and will re-schedule it soon)


*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.*

Recent nightly routine...

Last night I brought the kids home from dinner at my parents house. I got them in their PJ's and then started to get all of their medications together all at once. I usually just do them without thinking, but since I was on my own tonight (Rod was out with friends) I was trying to do it all at once.

That is when it hit me. My kids have A LOT of meds to take right now. This is crazy!

Here is a list of what is shown in the picture from last night...

1) The Princess' antibiotic for a sinus infection. She has about 3-4 days left.
2) Tylenol for The Princess. She also has an ear infection and was complaining of pain.
3) The spacer for The Princess' inhalers.
4) Singulair. This is for The Princess' asthma/allergies. She takes this once per day.
5) Ear drops. The Princess has a current ear infection (ear tubes + ear infection = leaky ear). Used once per day for 7 days.
6) Flovent. Used for The Princess' asthma, twice daily.
7) Albuterol. Also used for The Princess' asthma. Used as needed, latelty has been 2-3 times per day.
8) The Superhero's blood glucose meter. Of course we must check his BG before bed. :-)
9) Xopenex. Used for The Superhero's "croupy" cough lately. 2 or more times per day. Will be seeing a pulmonologist soon.
10) Pulmicort. Used 2x per day for The Superhero's coughing.
11) Container used to put breathing meds into, and then hooked up to the SVN machine.
12) Triaminic cough medicine. Has been helping reduce his cough.
13) Flonase. Nasal steroid for The Superhero. 2x per day.
14) Allegra for The Superhero's allergies.


Yep. This is what our life consists of. I never would have thought this is what our "nightly routine" would consist of.

So thankful I get to have a BREAK this week. Rod and I are going away KID FREE! And as much as I LOVE my kids, I just can't wait to get away!

*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.*

The Princess and Her Shoes

As I was searching for a pair of sandals in "the basket" the other day, it occurred to me that The Princess has A LOT of shoes.

Back in 2009 I posted HERE about The Princess getting new shoes. That specific time shopping, we ended up with 6 pairs of shoes. And I thought that was a lot.

Her latest collection of "current" shoes (shoes that fit her NOW), is MUCH larger.

So as I was looking for that pair of sandals the other day, I decided to line up her shoes and count how many pairs she has, and of course to take a picture to share here on the blog.

To my surprise, this 2 YEAR OLD has SIXTEEN (16) pairs of CURRENT shoes! (2 not pictured, flip flops)

W.O.W.!!!!

And with THAT I would like to say two things...

1) Yes, she really wears ALL of them at one time or another.
2) I did NOT buy her all of these shoes. She is lucky to have a shoe obsessed NaNa who helped this collection grow. :-)

Love little shoes!


ETA: After reviewing the shoe photo, I decided to label each pair with who bought them. Maybe I am more shoe obsessed than her NaNa?


This pic below is labeled, it does not include 2 current pairs I couldn't find the match to last night. I also have 2 pairs up in the closet for when she grows a bit. :)

Tally: 1 Aunt Tricia, 5 NaNa, 1 Formerly The Superhero's (maybe NaNa?), and 9 Mommy!

*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.*

"I swimming, Mommy!"

A couple of weeks ago the kids and I decided to go swimming at the main pool in our apartment complex.

I like this pool because it has a BIG step for The Superhero to "hang out" on. He is not big into getting his face wet and is very timid around water. (or at least he was)

The Princess on the other hand is a FISH. And, she thinks she can swim. She just jumps off the steps or edge of the pool into open water and just assumes she will be ok.

This particular Saturday she was supposed to dive TOWARD me and instead she went to my right, into open water. When I pulled her up I asked her "What were you thinking", her response was "I swimming, Mommy!" As if she REALLY thought she was actually swimming.

Thank goodness I already had signed both kids up for swim class. We just had to wait for them to start. The Superhero was signed up for a group class, no more than 4 kids in the class. The Princess is not old enough for the group class, unless I want to join her in the water. Last year, I did join her in the water and we both learned a lot. This year, I wanted someone else to teach her. I thought she would get more out of the class if she wasn't constantly telling ME no. I ended up signing her up for the semi-private class which has a maximum of 2 kids.

We had our first class on Friday and I have to say I am SUPER impressed with BOTH kids! They did so amazingly well. The Superhero picked up right where he left off last year. And he even floated on his back! He would not do that last year, at least not easily. He got to wear flippers and had a GREAT time. He did tell me that he hate being put under water. He said "She put me under the water! She shouldn't DO THAT!" He was not happy about that part, but I did explain to him that it was her JOB to put him under water and teach him how to swim. He got over it quickly though.

The Princess. Oh, The Princess. She was beyond impressive. She ended up being the ONLY kid in her "class" and got 30 minutes of 1 on 1 attention, which she loves. She was swimming back to the wall in no time. She still did not want to float on her back, but is making progress from last year. She was such a little fish in the water!

After class we went to my parents' house to swim again and both kids enjoyed showing off their skills. Then on Saturday, we went swimming at my parents' again. Just one day later and the kids were doing even better than the day before! The Princess was using JUST the pool noodle to hold herself up and The Superhero wasn't far behind learning this skill. Then we practiced swimming without the noodle too, and they both were just amazing.

I can't believe how much progress they have made in such a short time! I am so impressed and proud of them both.

And now, instead of drowning herself, The Princess actually IS swimming! She keeps saying "I swimming! I doing it!"

Yes, yes you are.

*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.*

What I have learned about ITP so far...

Since The Princess was diagnosed with ITP in April, I have received many questions about the disease. I have learned A LOT in the short 4 weeks since her diagnosis. I thought I would put together a post here all about ITP and what I have learned so far. If you have any other questions after this post, please ask away!

Starting with some internet facts, the following is copied from ITP Kids...

What is ITP?

	ITP stands for Immune (also referred to as idiopathic) Thrombocytopenic (a decreased platelet number) Purpura (purplish areas of skin and mucous membranes).
	You may also hear the term "Idiopathic" Thrombocytopenic Purpura which means the cause of the low platelets is unknown.
	ITP occurs when a person makes antiplatelet antibodies which attach to his/her own platelets. The antibodies cause the immune system to destroy the platelets. This results in a decrease in the platelet count.

(My note: Yep, it is autoimmune, like Diabetes)


What are platelets?

Platelets are the blood cells that help form clots to stop bleeding. A blood test is done to count the number of platelets you /your child has.

A normal platelet count is higher than 150,000/mm3.Hematologists generally agree that platelet counts: higher than 100,000/mm3 are always safe, higher than 30,000/mm3 are nearly always safe, and lower than 10,000/mm3 may be associated with an increased risk of bleeding.

(My note: The Princess had counts of 6,000 and 2,000 the week of her dx and 12,000 this past week)


Why would you treat ITP?

The main reason to treat ITP is to keep you/your child's platelet count in a safe range so that the risk of bleeding is minimized. Platelet counts lower than 10,000 may increase the risk of bleeding. Therapy temporarily raises the platelet count to minimize the bleeding risk.

(My note: We choose to treat because The Princess is a VERY active toddler and would have a greater risk of bleeding should an injury occur)


And now what I have learned so far...

The treatment options WE are offered from our doctor as options to treat The Princess.

1) Observation...This would just be a watch and wait approach. Weekly blood checks and decisions based on the count each week.

2) Steroids...We could put The Princess on steroids to increase platelets while she is taking them. There are two problems with steroids though (mainly)...1) Steroids can have some yucky long-term effects and 2) The Princess is a complete MONSTER on steroids, and I just can't do that to her.

3) IVIG...This is a transfusion given over several hours of part of the plasma from a donor. As we know, side effects can be nasty and include headache, vomiting, nausea, fever, and could include kidney failure. (The Princess experienced most of these on her first round; we pre-medicated the second time around and have avoided these side effects) This treatment works in about 80-85% of the patients treated to temporarily raise platelets. This treatment can last from 2-4 weeks before platelets would drop again. It appears it lasted about 2 1/2 weeks for The Princess from her first treatment.

4) WinRho...This is another treatment given via transfusion over about 30-60 minutes and for our clinic would require us to stay the entire day (7:30am-4:30pm or so) due to the possible side effect of developing severe anemia. We were told this treatment works in about 80-85% of patients to raise platelets temporarily. We have thought about this one, but the idea of possible anemia scares the crap our of me (would mean a blood transfusion on top of everything else) and it may not even work.

5) Splenectomy...Removal of the spleen is an option patients who have had ITP for a long time might consider. This will not work for everyone and the risk of infection down the road is greater.

The fact is the platelets are low. Any "treatment" that would raise platelets would be temporary until the body stops attacking itself at some point. The treatments are seen as a bandaid and only last a few weeks at a time.


At this time, The Princess is considered to have "acute ITP". This means she has had ITP for less than 6 months.

If she still has ITP after 6 months it will be considered "chronic ITP". I have been told that 80% of kids will go into remission within 6 months. I am still praying and holding out hope that happens, and sooner than 6 months would be fantastic.


And lastly, for now, I want you to all know that I am doing my best to get through the dx of another autoimmune disease, and let me tell you this SUCKS.

I am constantly worried about her platelets being too low. I cry every time I think about all her bruises. And the fact that just by touching her we are causing some/a lot of them. I cry every time she gets lab work and has to be poked. I cry every time they have had to put an IV in, blow her veins, and have to keep repeating until they actually get it in. The night before her first IVIG I cried the whole night and the whole next morning. I was seriously scared of the unknown. The second round of IVIG this week, I knew mostly what to expect and I still woke up in the middle of the night and cried my eyes out. I hate that my baby has to go through this. It just plain sucks.

Yes, of course I am grateful it is not something like leukemia or cancer, but it still sucks.

The only reason I am surviving this right now is all of the love and support from my family and friends. The comments and concern shown for me and my Princess help me be ok with it. You all help me get through each doctor appointment and each transfusion.

The appointments and treatments already seem to feel like they are part of our routine and no big deal, even though they really are. I feel like we are living our lives 3 weeks at a time. And while I hope we don't have to do ANY more treatments, I am also trying not to get my hopes up. If we have to endure this for several months, I need to be ok with it, or I will just fall apart.


I have to add, SHE makes it all worth it too...

*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.*

We did it!

We seemed to have BEAT the side effects! Woo Hoo!

After The Princess had her first IVIG treatment on April 27th she got VERY sick. I posted HERE about her side effects.

When we went to her appointment this week, I was pretty sure her platelets were back down since she was starting to bruise again. She also had lots of Petechiae spots (small, reddish-purple spots that look like a rash, but are not raised). So, while I had hoped of a higher count since her IVIG was 3 weeks prior, her actual count was down to 12,000.

We chose to do another round of IVIG, even knowing the side effects. This time though, I made the decision to "treat" the side effects before we noticed them.

We went in for the IVIG on Thursday. She did amazingly well again. It took 3 tries to get the IV in this time around, since people with ITP have fragile veins. The first two "blew" and the nurse would not try more than 2 times. I will say, The Princess fought this time more than previously and her crying made me so sad.

The nurse called for the IV "team" from the hospital. We waited about 1 hour before the "team" came in. The "team when The Superhero was dx with Diabetes consisted of about 3-4 people. This is what I expected when they told me the "team" was coming. Fortunately, this time around "team" just meant ONE person and our new favorite transfusion nurse, Chris. Chris did a great job wrapping The Princess in a blanket so she could not move her arms and legs, and the IV "team" nurse went for it. One try and the IV was in.

Once The Princess was hooked up, it took about 3 hours for the treatment. I was lucky to get a lot of work done during this time while The Princess slept the day away. (thank God for Benedryl!) She did get a manicure and pedicure before snoozing though. (I will post about that another day)

When the treatment was over, her IV was removed and we were sent home. Around dinner time I decided to start giving her the Tylenol with codeine and the Zofran. We continued to give her both of those medicines throughout the night (as prescribed) and added in Motrin in the morning.

Typically, with low platelets, people with ITP cannot use Motrin since it affects how the blood works. Since we know the IVIG works fairly quickly for The Princess, we decided to add it in the next day to help fight the possible fever.

We made it through the first night with NO vomiting! Woo Hoo! She did toss and turn more than normal. She whimpered in her sleep too. I was up for 2 hours just waiting for the vomiting that never came. And we made it.

Then yesterday, I kept her medicated again. And again last night. She tossed and turned again. She started saying that her head hurts. I am sure it is not as bad as if the side effects were full force.

So, after almost 2 days post IVIG I am SUPER happy to announce, that WE BEAT THE SIDE EFFECTS!

This was HUGE for all of us. This helps me as we move forward with her ITP and possible future treatments.

I am working on another post to explain more about ITP. For now though, please keep praying she goes into remission SOON. Please pray that we won't need too many of these treatments. And please pray we can keep beating the side effects with each treatment.


*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.*

Another Princess update

We went in and completed the IVIG treatment yesterday. The Princess did great. They took 2 tries to get the IV in and she was good to go. They gave her benedryl to make her drowsy while we sat there for the 3 hour treatment. She slept through about 2 1/2 hours of it. She was feeling great afterward and we were sent home by 2pm.

Then we hoped and prayed for NO side effects. IE: headache, nausea, vomiting, fever.

We were in the clear...until 4:30am. The Princess woke up and threw up all over my bed. Then an hour later, she threw up again. And again. We cleaned her up and I called the hematologist on call. He said to try to give her tylenol and benedryl (pain and to help her sleep?). She proceded to throw those up after about 10 minutes.

It was then that we made the decision to take her in to the clinic. It was about 6am at this point and the clinic doesn't open until 8am. I knew with traffic it would take about 1 hour to get there, so we packed up and left around 7. Right after she and I left, she threw up in the car.

Then as soon as I pulled in the parking lot, she did it again.

Once we went inside they took us back and spent about 45 minutes, and 2 tries, to get another IV started. Due to the low platelets, and all the pokes this week, the "real estate" on her arms was left to slim pickings. Fortunately, she was feeling SO yucky that she didn't fight too bad. She sat on my lap and watched Dora on the Child Life Specialist's Ipad (BEST IDEA EVER!)

Before hooking her up to the IV, they took some blood to check her platelets. They were UP to 54,000! Only 2000 on Tuesday, this was the BEST news all day! The IVIG appeared to work well for her. We were just unfortunate enough to have most of the side effects that were a possibility.

Once we were taken back to the infusion area, they hooked her up to some saline. She was getting VERY dehydrated. They also gave her Zofran for the nausea and Morphine for the head pain. Apparently the headache is THAT bad. The headache was contributing to her vomiting. Then she started BURNING UP. She had a mild fever at home, but this spiked up to 104 degrees. They gave her tylenol. It wasn't budging. Then they gave her some Motrin.

Finally, after about an hour, she started sweating. She was getting re-hydrated. And the fever was finally breaking!

Then a few minutes later, like night and day, she perked up. She wanted to watch a movie. She wanted a snack. She even used the potty! She had stopped peeing since yesterday, due to dehydration.

They wrote us prescriptions for anti-nausea meds and pain meds. We also have to keep up with the fever using motrin/tylenol. And we were on our way!

These side effects should last about 48 hours. Then we can hopefully go back to "normal". At least until we see her platelets go back down in a few weeks.

I am hoping and praying that this might be the only treatment she needs. If not, we will have to make a decision if we want to do IVIG again, or try another type of treatment.

I can't wait for her little body to heal from all the nasty bruises!

We were home now and she is not feeling great. She is keeping food down and is drinking. She is complaining that her head hurts. I have given her the pain meds and will give her motrin and zofran soon.

Please keep praying for her. I want my girl back!

She fell asleep before they came in to do the IV today. Not looking good. :-(

After the fever came down and she was feeling better. Watching The Little Mermaid. :-)

*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.*

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.*