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.*

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.*

A typical misconception of T1 Diabetes

(NaBloPoMo Day 2)

Since The Superhero was diagnosed with Diabetes the ONE thing that I feel is the MOST annoying is that people assume he ate too much sugar!

Seriously? He was 18 MONTHS OLD!

I have heard MANY times when people hear me say The Superhero has Diabetes, they will say something to their kids like "That is why we don't let you eat sugar" or "No more sugar for you!" etc.

This irritates me. Do people really think that I fed my toddler TONS of sugar? And therefore *I* caused him to get Diabetes?


From the Mayo clinic's website...

"The exact cause of type 1 diabetes is unknown. Scientists do know that in most people with type 1 diabetes, their body's own immune system — which normally fights harmful bacteria and viruses — mistakenly destroys the insulin-producing (islet) cells in the pancreas. Genetics may play a role in this process, and exposure to certain viruses may trigger the disease. "



And this from eHealthMD...

"Diabetes is an autoimmune disease. That means the body's defense system attacks some of the body's own cells. In type 1 diabetes, the cells in the pancreas that make insulin are destroyed, and therefore they are no longer capable of making insulin.

We don't know exactly why this happens, but we do know that some people are born with a tendency to develop diabetes. Then something "triggers" the onset of the disease. It may be a virus that triggers the onset, or it may be something in the environment. There is nothing a parent can do to prevent this from happening."

I usually make comments back to those parents trying to educate them.

I explain that T1 Diabetes has nothing to do with what he ate.

I also explain that in fact, My Superhero RARELY had anything that would be considered a "treat". We were very conscience about food choices for him and he still got T1! It is an autoimmune disease and there was nothing I could do to prevent it from entering our lives.



Diabetes Fact #2: T1 Diabetes is NOT caused by eating too much sugar or being over weight. It IS an autoimmune disease and cannot be prevented.

Diabetes Fact #1: T1 Diabetes CANNOT be treated with medication. The only way to manage T1 Diabetes is with insulin. Without insulin, T1 Diabetics would die. Period.