Labwork and questions

My 17 yo daughter had her blood work repeated this week, platelet count is 7. It was 8 last month and has basically been in this same range since August. She has bruising and petechiae (moderate, not terrible). Her gums bleed when she brushes her teeth, but no active bleeding, no nosebleeds or spontaneous bleeding. So we are continuing with watching, her bloodwork will be repeated in one month. Her doctor always reiterates that is she is not happy with the way she feels or has problems we can try some treatment options, but they all have side effects and she could be looking at long term use. I am really convinced watching is the best plan for her now.

I just have a couple of questions. She actually seems to be feeling better now that her platelets are down and staying down then when they were dropping, or she is doing better at managing her symptoms. During the summer she had bad headaches and fatigue. She still has headaches but not as bad or quite as frequent. She does get tired more than before, and goes to bed by 10 (she was a real night owl before). And sometimes when she does not have homework or on a weekend she will go to bed at like 8:30 or 9. But then it seems like 1 day every month to 6 weeks she will have a bad headache and real fatigue and basically sleep all night and about half the day then feel better. How does this kind of compare with other peoples symptoms?

The doctor also said her IgA was low ( not sure of the exact value). I know this can be an indicator of autoimmune processes. He also said pts with low IgA are more likely to have allergic reactions when they receive certain preparations of IVGG, but we are not planning on IVGG therapy since her platelets dropped quickly after an initial boost. I have to research this a little.

My other question is about dental work - he said she would probably be ok for a cleaning but would need treatment before other forms of dental work. She is due for a cleaning next month and I am just a little concerned- I know her gums will really bleed. Suggestions or advice on this?

FATIGUE & INFREQUENT BAD HEADACHES (EVERY 6 WEEKS) ARE NOT NECESSARILY CERTAIN SYMPTOMS
OF ITP , COULD ALSO BE OTHER ISSUES .
BUT 7,8 IS A LOW COUNT , DEPENDING ON HER HISTORY .

WAS THE ITP DIAGNOSED BY A HEMATOLOGIST ?
OR FAMILY DR ? I HAVE A 20 YR DIAGNOSIS OF ITP & 5 YEARS LUPUS .
AND WE TRY TO MANAGE THOSE SAME SYMPTOMS . (1ST MEDS & LAST A SPLENECTOMY)
AS FAR AS THE DENTAL WORK, MY DENTIST IS FAMILIAR WITH ITP AND I DO.
SO BASICALLY I AM DEFERRING TO UR DRS.

WISH I HAD BETTER ADVICE ,KEEP ME POSTED .
PRAYERS.
SUPERDAVE
TRYING TO STAY POSITIVE

She was diagnosed 17 months ago by the pediatrician with routine labwork (and a platelet count of 50). It was repeated 2 months later and was 40, so she was referred to a pediatric hematologist. Her counts bounced between 40 -50 for about 10 months, then started dropping. She is being followeed by a pediatric hematology group. Her ANA tests were negative for other autoimmune diseases, but her doctor does reiterate to us that we always need to keep other autoimmune issues in mind.

The hematologist said that he hears patients describe thes symptoms and they can be part of the process ( I love that he told me early in his career he was a little dismissive of this because these are symptoms thatnwould go with anemia). However he says he has patients and parents who can predict counts based on some of this. She had one course of IVGG and it was after that, when her counts were at 45, that I realized how much more vibrant she really is and how she is dragging when they are down. But is is kind of managing them.

Terri:

Everyone is different when it comes to symptoms. Fatigue is a common complaint for some and not others, so it's hard to say what is 'typical'. I did feel fatigue when my counts were down, but it was more of a physical weakness and dizziness. I don't know how much I would have slept if I could have; I had three kids and a job so sleep wasn't an option. I sometimes think there are other things going on that are not caught, such as low vitamin levels or other autoimmune oddities. Many people with ITP do have low vitamin levels of one thing or another. I've had problems with a lot of them over the years.

As for headaches, that is not a common complaint although some people have mentioned it. I can't think of a rational reason why low counts would cause that. Headaches can be caused by a variety of things. Tension headaches, sinus problems, etc. Some people with ITP also have APS Antibodies and that can be a cause of headaches. The headaches are caused by small clots in the blood vessels of the brain. It has been estimated that 33% of people with ITP also have APS.

You're right about the IgA levels and IVIG. The same applies to blood transfusions...she may be more apt to have a bad reaction to those. Here is some info about low IgA levels:

allergies.about.com/od/childhoodallergies/a/Immunoglobulin-A-Deficiency.htm

As for the dentist, my Hemo advised against all dental work when my counts were under 20k. I was not happy about that since I had to go for a very long time with no cleanings or fillings. Some people take Amicar prior to and I asked about that, but he said no. Cleanings can be harsh and I would expect that she would experience some bleeding.

Hi Terri,

my daughter is 19 and we just discovered she has ITP this past spring. When the labs came in so low, the doctor called us and told us to go directly to the hospital. There she stayed for 5 days and had the IVIG, and when she left she stayed on Prednisone for awhile. Trying to get her platelets at a good level. They slowly decreased the mg.
she then got sick with pneumonia and they dropped like crazy and she was admitted to the hospital again for more heavy treatment.
at this point our current doctor wanted to refer us to someone that knew way more about the ITP, and she referred us to a doctor that was actually on a list from this site.
When we meet with him, he said he thought removing the spleen would give her the best results especially since she responded to the meds before so well
So we trusted in everything he told us and did the surgery actually just last week.
Unfortunately it does not seem like it worked. her platelets stayed up all week, but probably because she had a treatment of the IVIG before, so her platelets were high for surgery.
Then 6 days after surgery, they were ready to send her home, and her platelets dropped to 5. So needless to say, they kept her and stayed the prednisone again right away.
We are hoping that this still might come around & the surgery is a success. But from what they say, normally they see results differently.
I have read alot on this site, and we are going to do some of the meds....but also going to try doing it with a diet, herbs etc. I think we are going to see a food allergist too. the doctors we have seen so far dont talk a word about diet, or anythign natural. So this is something we are going to do on our own. And because it is not meds, we have nothing to lose. going to try to be more organic, gluten free and see what that does. Also eat more foods that promote the growth of platelets.
and on top of all that.....pray!

good luck to you both. research all you can. I feel the doctors only look towards the scientific ways. there has to be more options

Kcj:

From what I have seen over the years, a successful splenectomy will usually show a very high count right after the surgery, sometimes going over a million. Those seem to have the highest success rates that last the longest.

However, I have seen some people that have splenectomies that seem to have failed, and the counts can rebound after a period of time and stay in a safe range. Sometimes the treatments seem to work better after splenectomy. Don't lose hope. Diet changes can never be a bad thing. I have done some of the same things (not for ITP) and have seen some improvement in overall health, so at the very least, she can possibly feel better. It might take a long time though and when treatment is added in, you never know what actually causes a rise in counts.

Keep in mind that counts do not have to be normal.

It's interesting to see two similar situations with two totally different approaches. I hope you both keep us informed and I wish you both luck!

Thanks for the information! Sandi thanks for the IgA article, it is helpful.

Kcj, wishing the best to your daughter. I hope her counts stabilize quickly. My daughter's doctor told me we are treating the child and not the number and that is the approach I take and I like. There are different treatments and approaches based on different situations and circumstances and we need to find the one that works.