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.*

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 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.*

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.*

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.*