Calyssa's Medical History= Puzzling!!

August 2011-
Symptom-- High fevers (with no other symptoms) that lasted several days (I believe this happened 2-3 times, in a month.)
My Reaction- A bit worried but felt that it happened for a reason (when they found the anemia)
Test Results- They were able to get her blood on the first try. (I didn’t realize how lucky we were.) Her CBC was normal, except anemia was found (low iron and low iron stores.)
Doctor Reaction- (Dr. P) called us right away and said all the scary stuff came back looking good, so we didn’t need to worry. He said she may have a mild UTI. He also asked us to get her on iron that night.

November 2011-
Symptom- On Wednesday, my daughter, Sariah, came and told me that Calyssa had fallen off her bed. I asked if it was the top bunk and she said, “no, the bottom.” I checked Calyssa over and she seemed fine, so I didn’t think anything of it (in fact, I forgot all about it.) On Saturday, my husband noticed that Calyssa was crawling funny. She wouldn’t bare weight on her right arm. We kept an eye on her and noticed that she would do everything else- clap, smack the table, etc. We decided to take her in on Monday morning. I couldn’t remember the fall until I came back home and asked the girls if they remembered her falling off of anything and Sariah reminded me of the fall off her bed earlier in the week.
My Reaction- Thought she must’ve fallen just right and that it was just very unlucky. (All my babies had fallen off of a couch or bed at least once and none of those falls had resulted in a broken bone.)
Test Results- It was a pretty bad break as it was broken in two places.
Doctor Reaction- (Dr. S) Questioned me if someone was abusing her

  

January 2012-

Jan 22- Symptom- Calyssa breaks left arm falling off someone’s lap (who was sitting on the couch) to the floor. Luckily, there were several witnesses, including 3-4 adults. Grant was gone at a meeting and I was in the bathroom.
My Reaction- Realized it could no longer just be a coincidence and knew there was something wrong. However, I was scared to take her in because of the reaction from the Doctor last time. I prayed to know what to do and felt strongly that I should take her in. However, Grant disagreed with me, which made it even harder to know what to do. He was worried about our children being taken away and felt that her arm would heal just fine, if we splinted it ourselves. Ultimately, I knew that we needed to find out what was really wrong, so I took her in.
Test Results- Her left arm was broken- not a very bad break this time.
Doctor Reaction- Again, questioned me, even more in depth this time, about who was abusing her, as
“1 year olds just don’t break their bones.” She said that she was supposed to call CPS, even if she had the slightest suspicion about abuse. (We also found out that the radiologist, who wouldn’t even speak to me the whole time she was getting these X-rays, had called and given her a hard time for not calling CPS.)
My Reaction- I felt very strengthened in the moment, with a power that was not my own. (I know it was the spirit and am so thankful for that!) It was such a blessing and I was able to demand more tests. (I am not usually able to be that bold with Doctors.) I told her that I was 100% sure no one was abusing her and that I also knew this wasn’t just unlucky… something was wrong and I wanted her to test everything that had to do with bones.
Test Results- I had to take her to get her blood drawn. The first place couldn’t get her blood, so I took her to the hospital. They tried and tried and finally got it. It was very hard to watch and I cried almost as much as she did. (I went home and cried, and totally doubted myself. I felt like I had made the wrong decision to take her in. It was just such a hard day! But I was thankful for Grant who, even though he didn’t agree with me, supported me and told me how brave I had been and what a wonderful mother I was because I was more worried about my baby’s health than what could happen to me. It meant a lot!) But, it was worth it! They found a severe Vitamin D deficiency, when the test results came back a week and a half later (it was 15 and should’ve been 30! And that was after I had been giving her Vitamin D in a multi-vitamin, along with the Iron, since August when they found the Anemia.) She was also still anemic (low iron, low hemoglobin, low hematocrit.) So they asked us to give her 800 iu’s of Vitamin D and bumped her up to 25 mgs of Iron. They also found out that her blood calcium was high, which caused them to do more blood work the next week.
Blessing- Grant and Brady gave Calyssa a blessing, in which they blessed her that she would eventually recover from this. I held on to those words for weeks. It really helped me. I also received a blessing, which comforted me.

Feb. 2- More Tests- Grant took her for more blood work. (It was hard even for him! He said it was so hard to watch her hurting. He usually doesn’t have as much trouble with this kind of thing.) They found out that her thyroid and parathyroid were normal. However, her bicarbonate was high (but it turned out to be the lab’s fault.)

Feb. 13- Calyssa had her cast removed (cut off.) She was really scared of the machine. Our Doctor’s nurse also took some urine (luckily, they just bagged her), however, somehow it got lost or spilt at the lab. Also, our Doctor had us schedule an appointment with Seattle Children’s Hospital Skeletal Health, but they couldn’t get us in until the end of March.

Feb. 19- Symptom- In the morning, I noticed the knuckles on her right hand were swollen and red. She also had a welt/hive on her lower right arm and one on her upper right arm. That evening, I noticed what looked like “bug bites” all over her legs. And then I noticed a small red bump/mass on her lower left leg. It looked almost like broken blood vessels or something.

Feb. 20- Took Calyssa to see the Doctor (Dr. O)
My Reaction- I was very, very worried, as I no longer was able to just dismiss her symptoms anymore. I was sure we were facing a very serious disease. My guess was leukemia. I kept crying and crying and couldn’t put her down. I just wanted to hold her.
Doctor’s Reaction- The Doctor said this was purpura and that it was very serious. She also mentioned leukemia and sent us for more blood work. It was awful! She started crying as soon as we got to the lab. It was so sad! They had a hard time getting her blood again. It absolutely broke my heart to have to hold her while they were hurting her. The pain in her eyes was absolutely heartbreaking!!
Test Results- Her CBC looked amazing- her platelets looked good, her white blood cells looked good, etc! Even her iron levels looked good! Cancer was out. What a relief!

Feb. 20 (evening)- That night, after we received the phone call about her blood work, I took off her pants to change her diaper and noticed a huge swollen mass on the back of her right calf. I immediately started to panic again. I called my Doctor’s office and they sent me to a nurse in Seattle. She was pretty sure someone was abusing Calyssa, after I gave her a brief history. We talked, she called Dr. O, then called me back and gave some advice, then said, “Just try and keep her safe tonight, okay?” It was very frustrating! Like I wasn’t dealing with enough! I felt sick! I didn’t feel like eating and I definitely couldn’t sleep. It didn’t help that Calyssa was super fussy and not herself. She was thrashing around in my arms and just overly upset about everything. (She was also getting her 1 year molars too, which didn’t help.) That night, she kept screaming out in her sleep. I would hear her screaming and go in, but she would be sound asleep. After this happened for the 3rd time, I took her in my arms and started to cry. I was so incredibly worried about my baby and was going through all the worst case scenarios in my mind. I remembered my Doctor saying something about Kidneys and was willing to do whatever it took to help me baby get better. I was sick with worry, and after a lot of prayer and crying, I woke Grant up for a blessing.
Blessing- Grant blessed me to have faith in the words of the previous blessing a month ago and to allow Christ to help me carry this burden. After the blessing, I cried again and then fell asleep.
(I later found out that I wasn’t the only one worrying. Grant said he had been crying on the way to work, worrying about her. My Mom had cried a few times when I had talked to her about it. My Dad had told me that I really had him worried. And our friend, Vanessa had also cried. Our families and close friends were worried with us. We really appreciated all the thoughts and all the prayers!)

Feb. 21- Took Calyssa back in. By this time, the first Purpura was a faded bruise and the second was a big ugly purple bruise. So glad I took pictures of every step of the purpura, which I shared with Dr. O.
Doctor Reactions- Dr. O. brought in Dr. H and Dr. B, and they couldn’t figure it out either. They mentioned maybe Rheumatoid Arthritis… but were unsure. They also bagged her for urine, which I took over to the lab. (My Doctor mentioned there was a test she wanted but that it could wait because they didn’t want her to have to get her blood drawn again. Her little arm was still all bruised from yesterday. It was also all red still from where the glove was touching her. I thought maybe her skin was just hypersensitive or maybe it was an allergic reaction to latex, which I later found out has milk casein/protein in it.) When I got to the lab, they told me they needed more blood and I burst into tears. I told them to call my Doctor first. My doctor she said they could wait. I was so grateful!!
Test Results- The urine came back good, meaning no kidney problems! Again, I was relieved!

Feb. 21 (Late afternoon)-
Food- Banana, French Fries, a couple of bites of Ice Cream with Cherries and Chocolate, a strawberry, Strawberry Nutragrain Bar, String Cheese, and Cup of Milk
Reaction- While Calyssa was drinking her milk, she got a hive on her cheek and into my mind popped two words—allergic purpura. I had no idea what that was, but I knew God had given me that information. There was no way I could’ve come up with that on my own!  What a miracle!!  I was so incredibly thankful for His help!  (It was also the first time I allowed myself to separate these problems, instead of grouping them all together as one.)  I googled it and it sounded exactly what we were dealing with. I kept researching it and found several sources that specifically spoke of cow’s milk allergies causing it. However, purpura is very rare, especially in young children, and especially rarely caused by food allergies. But it was possible!! I decided to take her off of milk products. And for the first time in days, I felt really calm. Also, I was so happy-- simply because I had hope again! I didn’t even care that we might be facing a serious allergy, because that was so much better than anything I had considered. I felt such empathy for families who have/had gone through a serious disease (or worse) with their child. I can’t even fathom how hard that would be.

Feb. 22- Food- I caved in to her sweet little pleadings of “more! More! More!” when the girls were eating string cheese (she loves cheese, milk, etc.) I gave her a small sliver of string cheese.
Reaction- Calyssa became very fussy and started rubbing her eyes and nose like crazy!

Feb. 23- Food- I dipped her arm in milk to see how sensitive she was.
Reaction- Her arm was just a bit red, however, she started popping up small red bumps all over her back. They started almost immediately and got worse and worse for about 10-20 minutes but were gone less than an hour later.

Feb. 24- Went to see Dr. S, who was now back in town. After seeing the pictures, and hearing the explanations, she diagnosed Calyssa with allergic purpura and said she believed that she may have a serious milk allergy. However, she wasn’t ready to connect the two, as she had personally never heard of food allergies causing allergic purpura. (She said that 90% of the cases were caused by a rare reaction to an illness.) She told me to take her off of all milk products and gave me a list. And said she would help us get an appointment with a Pediatric Allergist as soon as possible. She also said that we would need to come back every week for two months and then every month for 6 months and test her urine and blood pressure, as AP (also called HSP) can cause serious problems, particularly with the kidneys.

Feb. 24 (evening)- Food- We gave Calyssa her first soy milk (2 bottles/cups) and a cup of almond milk. (She was very excited to be drinking “milk” again.
Reaction- Shortly afterward, her tummy became very bloated! It was really strange looking.

Feb. 25-
Food and Reaction- We ate at a restaurant and tried very hard to keep her away from any foods containing milk but I’m pretty sure she got a little because when I went to change her diaper, she was breaking out in small bumps all over her back.

Reaction- Later that night, she had the most horrible smelling burps ever! It was very strange for a baby who wasn’t sick. The girls said she had had a few earlier in the day also, while we were driving in the car. She was also very fussy (unlike her) and really clingy, especially with me. Then I remembered her tummy from the day before and assumed it was the soy. Then she started having terrible gas. Then she had a bowel movement, which left her little bum with a horrible rash!! Poor baby!! After that, besides her sore bum, she was feeling better. I called my Doctor’s office and was sent to a nurse in Seattle again. This nurse was very nice and told me there wasn’t much I could give to her, in the way of medications. But that if this happened again (the bloating or the burping), that I should call back again. I decided not to give her the soy milk again, at least not during the weekend. (It didn’t happen again.)

Feb. 27- Food- Almond Milk
Reaction- Every time she has almond milk, she gets one single hive on her face.  Sometimes she also gets just random red splotches on her skin or little welts.  I don't know if it is always related to the almond milk.  Maybe she is allergic to dust mites also or something like that.  Who knows?  It is so hard to figure out allergies in a baby.

CONCLUSION-- Well, we know she has anemia, which is responding to treatment, and Vitamin D deficiency, and allergic purpura, which is or isn't related to a food allergy.  We are going to see a Pediatric Allergist and Seattle Children's Hospital Skeletal Health Clinic, in March.  Hopefully, we will get the answers we are searching for.