It's been a long time and Jonny's counts r up but

Hi everyone. Sorry I haven't been on in so long. Jonny's counts have been up, they even went too high once to 530,000 with no meds or anything. He had to be hospitalized for that, but they evened outwith fluids. He hasn't had a bruise in forever, and we met his one yr anniversary of ITP in January. Shortly after the ann. he dropped and bruised up, but recovered on his own within 2 days with no help from meds. He complains of feeling sick almost everyday, but his platelets are still good around 230,000. He has joint pains and fussiness a lot. We had him tested for lupus which came back neg. His white count still goes all over the map from 6 to 26 within hours of each other. Any ideas of what else I should have him tested for? He's 4 years old now.

Glad to hear his counts are up. Tim always complains of join pain too. He is always neg for lupus as well (neg ana). I wonder if all the meds just throw their bodies into an imbalance, you know. He's been on so many meds in the last five to six years-steroids, ivig, winrho, rituxan, promacta, now Nplate, and lots of asthma meds as well since he was a baby. Its got to have a long term effect. But, its keeping him alive and that's the first order of business, right?

I don't know about the white counts-Tim doesn't have that issue. I know that other's on this board have, so keep bringing it up until you hear something. Maybe post with white counts in your subject line.

Regarding lupus, Tim even gets the butterfly rash on his face, especially in the summer, but no positive ANA. He has lots of joint pain, the doc's say he has arthritis (he's only 16), but idk. I hope you find answers. Hopefully Johnathan will not relaps. But with ITP the hard fact is that it can always come back and you always have to watch for that. Hope for the best, prepare for the possibility.

Thanks! Ya Jonny gets the butterfly rash too, so I thought for sure he had lupus. He recently began getting chest pains that would make him scream in pain for a couple seconds then it's gone. That lasted 2 days and just before I said screw it and ran him to the ER they stopped and have not come back. I always put off taking him because he gets so scared he wets his pants. The only time my son has ever had an accident since he potty trained at 1 yr old is if I say it's time for a blood test and suddenly the flood gates open. It makes me sick that he's that scared, so I tend to wait things out a little more now. Putting off his last platelet drop, though, is what led to him bringing his counts back up on his own without med intervention for the first time in a year. So that was great!

Do you use emla for his blood draws? It takes most or all of the pain away from a blood draw. It might really help him. You can get a prescription from your pediatrition and bring it with you to have it applied by the nurses or the lab people. If they get too annoyed with you (they do sometimes if they have to wait), just slap it on his arms and hands in abundance before you come. But some tegaderm at your pharmacy. If its not in the isle, they will have it behind the counter. It really helped my needle phobic Tim come to terms with his issues.

I think that you need to keep on top of the erratic white counts. A count of 26 is very high, and indicates an infection somewhere. Don't ignore it!!!

Michelle - mom to Danica

Ya he uses emla. That stuff doesn't work for me so I'm not sure if it does for him or not. I think it does, but the idea still wigs him out a lot.

I do keep on top of his white counts but the docs keep blowing it off as nothing. I can't make myself believe that 26,000 is nothing. Especially in a 4 year old. Sometimes I feel like we've come as far as we can with the doctors we have here.

Well, I am very alarmed that your docs don't worry about a wbc that high. That is just crazy. How long have his counts been up and down like this?

Michelle - mom to Danica

Hi,
My white blood count is always high, ranging from 13 to 19. My Dr says it is due to the fact that I have had a splenectomy. It is consistent with a hyper-splenic blood picture.

Has Johnny had a splenectomy?

I understand your concern.

Vanessa

Ya it concerns me too that they keep blowing it off. I'm no dummy. I read lots of medical literature and do lots of research and I know enough to know a white count that high is super bad. They keep saying oh no that's just par for the course with ITP, but no one else's kid has this problem. It's been bouncing around for about a year now that I'm aware of, but it was more than likely happening before. I just know about it now thanks to the regular blood draws for platelet counts. He hasn't had a spenectomy. In my heart I know there's something else very wrong with him, but I can't get them to listen to me. They are telling me that it's just from his allergies, but he doesn't eat anything he's allergic to and we have a 4 pound dog, but we keep it in the bathroom or out side and I shampoo my carpets every week. Also my daughter and I both have terrible allergies, worse than his, we've all been tested, and have never had any problems with our WBC.

A high white count can be caused by physical or emotional stress. Seeing as your child gets very stressed at the thought of the blood draw and the count rises dramatically at that time, that is probably the reason.

Ya I knew they went up with stress, but then he has draws where they are like 6,000 and he's just as stressed during those draws too. That's what doesn't make sense to me.

When I hear joint pain, I think Lyme disease - due to a tick borne parasite. It has many manifestations (a great pretender) such as headaches, fuzzy brain, joint aches, exhaustion, etc depending on where the spirochetes have settled in to roost. Unfortunately blood work for Lyme disease has many false negatives because severe infections have all the antibodies bound up to the spirochetes and there's nothing left to measure. Only after treatment with antibiotics for a bit will some results kick over to positive (the infection has been subdued a bit). And antibiotic treatment is often the only way to diagnose - if Lyme disease the patient will get initially worse symptoms (herxing) then start to get better. Doctors are pretty bad about diagnosing Lyme, even our pediatrician who had Lyme three times herself missed it in my daughter since she was looking for only positive blood work. Our daughter's blood work only went positive after treatment for two weeks with antibiotics.

For my ITP daughter, erhlichiosis (anaplasmosis) started the ITP cycle, it wrecks havoc with white blood cell counts and platelets, but usually depresses white blood cell counts. When she had Lyme, her platelet counts were normal but she was pretty miserable with Lyme symptoms (neurological infection). Babeosis is another tick disease that messes with the blood, red blood cells I believe. Yes, we have too many tick diseases here.

ThanKs sandpit. Is it possible for him to have lyme disease without me ever having seen a tick on him? I don't know a lot about it, but the symptoms you wrote are him to a T. I just have that mom voice nagging me that there is something else very wrong with him ya know? My daughter had a tick on her once, but I have never seen one on him.

I finally got a doctor to listen! Well it's his ped. and she's been listening the whole time but trying to give the hem. the benefit of the doubt. He's blown us off for a month while he re locates his office and I have had enough, so we are getting a new hem and we are going to be going to a nearby research hospital to find out why my son is so sick. I think it's official that his ITP was just a symptom of something bigger.