Intervention Required...

My 18 yo daughters platelet count has been >5 when it was checked in late December and late January. She also was fighting a respiratory virus since mid January which seemed to linger forever (very unusual for her, she is rarely ever sick and shakes things off quickly). It was the first time she had been sick since her platelets were low. She was starting to see an increase in symptoms; nose bleeds, petechiae, bruising and most of all fatigue. We were hoping when she recovered from whatever virus she had she would start feeling a little more energetic, but as it went away she still didn't seem to improve. About a week ago my husband and I started discussing the idea of treatment and were hoping to get to at least spring break or summer so it would not cause school absence, and about a day after that even my daughter started talking about trying some form of treatment to feel better but trying to wait until summer.
Last Wednesday she started with some GI bleeding, fresh bright red blood with bowel movements. She had 4 incidents between Wed night and Thursday am when I called the doctor. They were great, brought her right in. Her doctor is very calm in general, but he rightly very concerned about the potential for problems with a GI bleed. Her platelet count was 1 (my pediatrician said it was basically 0 but the hematologist reviewed the slide and got it to 1) and her hemoglobin had dropped from 12.1 to 9.8. They said that if her hemoglobin was stable they would have sent her home on oral steroids but with the hemoglobin drop they wanted to admit her and use IV steroids and IVIG and monitor her hemoglobin. She was not thrilled to put it mildly but there was not very much choice. Thankfully her hemoglobin was good to start with! She had IV SoluMedrol the first night. She has an IgA deficiency so the hospital had to order special prep IVIG, she got that the next morning and then another dose of IV Solumedrol and was sent home on prednisone.
Her platelet count Monday (three days post tx) was 271, her hemoglobin is back to 11. NO further GI bleeding, no more nosebleeeds, and her bruises are starting to clear up. The doctor already started tapering her prednisone (she went home on 50mg twice daily, now is on 30mg twice daily) but it is a three week taper. She is experiencing side effects, mostly feeling like her heart is racing and hot flashes and flushing which is affecting her sleep, and an increased appetite. She gets her bloodwork repeated in 10-14 days, the doctor said he usually likes to go 1 month but since this is her first treatment course (other than a single IVIG infusion) he wants to monitor her response a little closer, he would not want her to be very low in a month without knowing the breakdown.
So the question is what next? Realistically I doubt this will be a sustained high count. We were really hoping to avoid too many drugs because she is young and this could be a long haul. But one of the hematologists in the group said that now that she has had both heavy menstrual bleeding which is controlled and a GI bleed which is potentially dangerous they may be uncomfortable letting her counts go extremely low again. So for now first goal is getting off the prednisone, then decide the best treatment plan. It is nice to see her feeling a little better and not as bruised up- she had a black eye from fooling around with the dog and too many bruises to count on her arms and legs.

Terri:

I know that you guys hung in there as long as you could without treating. I'm sorry to hear about the recent bleeding.

I know how rough Prednisone is, but tapering too quickly may put her right back where she started fairly soon. Hopefully he doesn't take her down too fast. If that happens, the next step would be another slower round of Prednisone or, you'd probably have to consider another treatment such as Rituxan.

Hi Terri,

That is terrific that your daughter responded so well to IVIG. I hate for her to be going through all this.

IGA deficiency can be caused - reversibly - by a thyroid deficiency. I noted that your daughter has some symptoms of low thyroid (sensitivity to cold, heavy periods). Has her thyroid level been checked?

I really like the calm nature of her doctors, and their judgment seems good so far. Still, is it possible that they missed anything? Have they tested for all of the infections that can cause ITP? This is especially important since she has IGa deficiency, leaving her more vulnerable to such infections.

How it is that your daughter's respiratory infection was blamed on a virus? Is she now completely free of respiratory symptoms?

You might be interested in the thread on mycoplasma, which most often presents as a respiratory infection. That thread is highly speculative as to whether mycoplasma infection (or some other undetected chronic infection) might be a source of ITP.

Thanks for your responses. I really value the knowledge in this forum.

Sandi - He is tapering her over three weeks. It may be fast, being as this is her first course I guess there is somewhat of a learning curve. I keep careful notes on what is being done so we can refer back as to what worked and how it worked. I am looking at the other treatment options and I am sure I will have questions.

Rob - she does have many symptoms of low thyroid. We actually discovered her ITP in conjunction with thyroid testing. All her thyroid levels were WNL, that was about 18months ago. She was seen by the doctor when she had the virus, not because she was so sick but because she missed school and I am concerned about her attendance. Her symptoms were head congestion but also laryngitis and sore throat (they did a throat c/s). That was what was going around at the time. My limited experience with mycoplasma the symptoms were more cough, congestion wheeze. I also remember kids with mycoplasma having an elevated WBC count with a shift, but that may be if they have a more severe case or my memory is incorrect. I will look at that. My daughter had a CBC at the tail end of it and her WBC and diff were all normal. She is free of all respiratory symptoms for about a week or a little more. And yes it is possible that the doctors missed something, I have been reviewing her records also. The good thing is that all the doctors (hematologists, pediatrician and adolescent medicine who handles the gyn aspect) are very open to suggestions and really listen to us. I also love that the hematologists confer and talk to each other about what they are doing and the treatment choices.

I know that as we move forward I will have questions on treatment options and peoples experiences.

Thyroid levels are like shoe sizes. Everyone has one within the standard range that fits her needs.
If her TSH is higher than 2.5 - 3, and/or free T4 is below lab median, it's a sure bet her thyroid isn't as "normal" as she has been told.

Thanks Midwest6708. I went back and reviewed her thyroid levels, her TSH was lower than 2.5 and was TSH was higher, thanks for the input. It might be worth rechecking them though because she really does have hypothyroid symptoms.

Those are such common symptoms though, it's hard to pin point the cause sometimes unless tests really show an abnormal TSH result. I have also had hypothyroid symptoms for a long time and have an enlarged thyroid, but so far, labs have been normal so I suspect it's probably Lupus-related. When my daughter was diagnosed with Graves, her TSH was .02 so the diagnosis was blatantly clear. She also had a very large goiter and very high TPOAb, TRAb, and TSI. They usually go by .3 to 3 on the reference range and anything in that range is considered normal and won't be treated. Some doctors will consider subclinical hypo/hyerthyroidism but very few do which is a shame.