Dr Hive Any thoughts on my DD's symptoms

[*LC]

Thanks for the prayers.

 

I also want to thank you for the reminder about getting a copy of her results. I have copies of my sons bloodwork over the years, so you think I would know to do the same with my daughter. We don't live near the pediatrician anymore, so I can't go in to pick up the results. However, I can ask them to fax it to me.

 

This doctor is listed as a hematologist/oncologist on the doctor finder at the children's hospital. There aren't subspecialty on that website. On the clinic's website is where the doctors are split into hematologists and oncologists. He is listed under oncologists and all his "interests" are oncology.

 

I agree that they must not have suspect her of having any type of aggressive cancer. However, there are less agressive types. My FIL had a type that they watched with blood tests for years. Also, mistakes happen. When my husband was diagnosed with a tumor at a little, local hospital that wasn't equipped for that type of surgery, I had to make arrangements to find a surgeon in the city. The schedulers at one of the offices simply gave me an appointment a month away. She had no way of knowing if his tumor was benign or malignant. If it had been malignant, it would have been one of the most aggressive types of cancer out there. I do feel better about this situation than his, because this is a children's clinic set up to take patients from all over the country. On the new patient scheduler's voicemail, she gives instructions for doctors who have patients that need to be seen within 24 hours.

 

I know it being anything too serious is unlikely, but we have a history of the unlikely. One of my daughter's best friends is a 13-year cancer survivor. We also have a number of other kid friends who had cancer when we knew them. We are fortunate that all our personal, close kid friends are now long-term survivors.

 

Thanks again.

[*LC]

I meant to call the pediatrician's office to get them to fax my daughter's blood test results, so I could see what got her sent to the hematologist. However, I don't want to alarm my daughter, who is in the middle of testing at school. I am frequently taking other kids places in the afternoon when she gets home, and I didn't want her to be the one to get the paperwork. (She still isn't feeling well, and she just found out her best friend will soon need a kidney transplant and another friend/older sister of theirs was diagnosed with cancer. So, drama is running high at our house these days.)

 

Instead, I talked to my friend who works for our pediatrician this weekend to ask her to look at the blood results and call me with what I needed to know. My friend is great, and was one step ahead. Somehow, she had seen that my daughter had a hem/onc referral, so, she had already looked at the results. (This is a good friend for the last nine years, so it isn't creepy or stalkerish like it sounds in writing. We have been to each others baby showers & birthday parties; made food for each other in illness situations; watched each others kids; had kids in preschool/Sunday School together, etc. She had been the one to call me with the original h. pylori results.)

 

My daughter is not anemic. My daughter's blood did not clot normally on the clotting test. (The test was the PTT for any medical types reading this.) Since my daughter is 15, we can rule out hemophilia. However, there are other blood clotting disorders that are possible reasons for the test results. She said being a carrier for a blood-clotting disorder could also cause the results. She remembered that my daughter's numbers weren't "crazy high." So, I'm still holding out hope that it is just another case of funky blood test results that turn out to be unfounded.

 

On the ulcer front, my daughter has finished taking the medicine. So far, she still feels bad, but I didn't hear as many complaints today as yesterday.

 

Thanks again for your prayers.

[Barb_]

Thanks for the update. Please continue to post as you find out more.

 

Barb

[*LC]

Hi,

 

I'm sorry for the delay in letting you know about my daughter's appointment with the hematologist.

 

The visit went fine. The doctors questioned us on her bleeding history. Then they decided that it was probably just a quirky blood result. They ran another more-precise blood-clotting test just to double-check. They took extra blood to run more tests if the test came back abnormal. They said they didn't expect to find anything. (The doctors jokingly called my DD a nerd when they heard she was checking her grades from her finals from earlier that day on the waiting room computer. They both agreed they would have done the same thing in high school and asked what she wanted to be when she grew up.)

 

In addition, they checked to see if she had had mono, which could have explained some of her symtoms.

 

It took a while to get the results on the blood tests, and then our internet was down.

 

Her blood clotting number was okay, but they decided to run a lupus test. That number was a little off, so they ran the more precise one. Her number on that test was normal. She had never had mono.

 

About a month after finishing the ulcer medicine, my daughter finally said she felt fine. (I had noticed a week or so before that she wasn't complaining about feeling bad as frequently.)

 

So, I thought things were back to normal. On Friday evening, she went for a run in the evening before meeting us at the pool. When she got to the pool, she said she felt like she was wheezing. (She has no history of asthma.) Her breathing did sound odd. Then, she asked if she had hives. I didn't see any, but she frequently feels them before I can see them. (She had chronic hives from spring to fall of '07 and '08, but she didn't have any in '09. She had them again for a few days over Memorial Day weekend.

 

Anyway, I later saw hives starting to come over her shoulders. I left the pool to go home for some Benadryl. I came back to find her covered in hives; her legs were completely bumpy. She took the Benadryl. The other moms suggested taking her home for a shower. As she stood up, I was holding onto to her arm. She closed her eyes, and then she started to faint. The other moms helped me get her to the ground. One mom called 911, but my daughter came to immediately and her legs returned to normal. Her vitals were all normal when the ambulance got there, so they gave us the choice to just go home. She felt fine all night and weekend. She did break out in hives again on Saturday afternoon, but that was it.

 

When she first started with the hives in '07, I took her to the doctor, but she said it was nearly impossible to find the cause of chronic hives. So, we never saw an allergist. I am working on getting an appointment with an allergist a mom at the pool suggested.

 

Tomorrow will be the first time she runs cross country since passing out. She is nervous. So, am I. She runs with a group of 15-20 girls, but they don't necessarily run next to each other. I told her if she felt funny to sit down and wait.

 

Thanks again,

 

LC

[Barb_]

It's possible the hives situation is unrelated to the first problem. Hopefully that's the case with your daughter and it isn't anything serious. Heat will trigger hives. If she just battled a virus recently, that can also cause someone to be more prone to hives for some time afterward, especially if she has a history.

 

Just before we moved to PA in 2002, we all had a nasty virus...I remember it well because I was panicked about driving across the country with a car full of sick kids. When we arrived, my MIL met us there and took some of the kids to a botanical garden. It was ridiculously hot and humid for the northeast that year...way up in the high 90's the day they went. Well, Jenna started feeling sick...dizzy, faint, and exhausted. They thought she had heat stroke. By the time she got home she looked like the elephant man. Really ugly giant hives that lasted the rest of the week. She wasn't just itchy; she didn't get out of bed all week.

 

Send benadryl with her to her meet. It's hot out there :)

[lisamarie]

I would get her allergy tested anyway. You might find something. I would also provide your DD with a fanny pack for her runs that includes benadryl pills or those one-dose liquid packs, a cell phone, and an inhaler (if needed). I've never run cross country, but my BIL did and from what he's said, the track is so spread out that she could theoretically get sick and have no one run past her for quite a while. A cell phone would at least give her a way to let you know. Set your # into speed dial so she only has to press 2 buttons.

 

You might also want to do a search on exercise induced hives. Just a quick search brought this up that sounds like your DD's experience. http://familydoctor.org/online/famdocen/home/healthy/physical/injuries/737.html

 

I would really pay attention to what it suggests and give some/all of the suggestions a try--particularly allergy testing, trying antihistamines before exercise and getting her an epipen just in case. It may seem extreme but better to have it and never use it than to need it and not have it.

 

Here's another one. http://emedicine.medscape.com/article/886641-overview

Edited June 29, 2010 by lisamarie

[Perry]

Google Mastocytosis.

[Perry]

Google Mastocytosis.

 

Sorry, I was rushed. I have a few minutes now:

What are the symptoms of mastocytosis?

 

 

• Red, itchy rash

• Rash that looks like freckles

• Hives

• One large lump on the skin

• Diarrhea

• Stomach pain

• Fainting

• Difficulty breathing

 

The symptoms are different, depending on where the extra mast cells are. You might have a red and itchy rash if there are too many mast cells in your skin. You could get hives or have a rash that looks like freckles. If you rub the rash, it can get red and swollen. Sometimes the mast cells collect at one spot in your skin and cause one large lump.

You might have diarrhea and stomach pain if the mast cells are in your stomach and intestines. (This is rare).

In a few patients, the extra mast cells cause a serious reaction, like a bad allergy reaction. The blood pressure may suddenly drop to a low level and cause fainting. The person may have trouble breathing. This reaction can cause death if treatment isn't started right away. (This kind of severe reaction is very rare.)