Daughter has ITP - Update - Good News (sort of)!

[Sho'Nuff]

So last night my wife and I noticed that our daughter has a bunch of little red spots on her (patechiae), as well as a bunch of unexplained bruises. One of the bruises is extremely bad (i.e., it is the worst bruise I have ever seen on a child), so we called her doctor and brought her in for a checkup. After looking her over the doc ordered a blood test, which showed that my daughter has an extremely low platelet count. I.e., her platelet count is around 8 thousand/ml, whereas normal people have anywhere from 120-400 thousand/ml. The major implication is that my daughter's blood does not have the ability to clot very well right now, hence the large unexplained bruises we noticed.

She has an appointment with the Hematology group at CHOB on Wednesday, so we will see how that goes. Current thought is that the low platelet count is a symptom of a viral infection. If so the prognosis is very good. But, there is a possibility that something else (e.g. leukemia or some other horrible disease) is causing the issue, which would obviously be quite bad. Thankfully her initial tests do not suggest those scarier diseases, but the purpose of the visit to CHOB is to really rule those issues out.

Anyone have any experience with this issue? Either personally or with a child? Would love to hear your story and how long it took for things to return to normal.

Thanks in advance,

Sho'Nuff

Updated - thread title to reflect the correct name for the diagnosis

Update 03/11/2015

So we went to Children's Hospital Boston (CHOB) today. Unfortunately there is not too much to report. The hematologist we met with specializes in ITP and related blood disorders, so I am confident he will get to the bottom of things. The docs took another blood draw and will be looking at it closely over the next few days to confirm the suspected ITP diagnosis, and to rule out other scarier possibilities like leukemia. If ITP is confirmed, the doc says that the best thing to do is wait and see if it resolves on its own. Apparently ~80% of ITP cases resolve on their own in young kids, so there is reason to hope that other treatment options will not be necessary. If her symptoms worsen (i.e., we see spontaneous bleeding from the nose, mouth, etc.), then more aggressive treatment (e.g., steroids to suppress her immune system) might be warranted. Hopefully it does not come to that. In the meantime we just have to try and keep her from hitting her head or belly too hard, as that could cause problematic internal bleeding.

Thank you all for your concern. I will post an update when we have the results of her latest bloodwork.

Update 03/16/2015

So the doc from CHOB called yesterday. Generally favorable news. The bad news is my daughter definitely has ITP. The good news is, well, she only has ITP. Apart from low platelets, her bloodwork looked relatively normal and showed no indications of more serious conditions. Her blood smear also showed larger "robust" platelets, which the Doc said are "new" platelets and demonstrate that her bone marrow (specifically her megakareocytes) are working properly to produce new platelets. Her platelet numbers were also up some. They are now around 11000, up from 8k. Still very low but heading in the right direction.

 

[allisolm]

No experience with it but am sending positive thoughts your way in hopes that her condition is not serious and easily correctable.

 

[DrPizza]

Best hopes to your family that it does turn out to be something relatively benign.

 

[IAteYourMother]

How old is your daughter?

 

[OutHouse]

sending positive waves your way.

 

[abj13]

Sounds like it is ITP (idiopatic thrombocytopenia purpura). As you mentioned leukemia is on the differential, and is something the hematologist will always consider. They will actually look at a smear of your daughter's blood to see if they see any cell that could be worrisome for leukemia. The vast majority of cases of ITP are NOT related to leukemia, so playing the odds, it is a good chance that it isn't leukemia, but still is something to always think about! Of all the things that hematologists see, ITP is one of their most common conditions of healthy children they see.

Most cases of ITP are idiopathic, meaning it is unknown what caused it. Some are thought to be induced by viruses, but ultimately whether it was caused by viruses or not won't alter how your daughter is treated. Viruses can directly lower the platelet count, but not to the level of your daughter's. What probably has happened is that she's having an autoimmune response to her platelets, leading to their destruction.

In some cases of ITP, no treatment is necessary. We shall see what the hematologist thinks, but many cases of platelet counts as low as your daughter's will be treated with either a short duration of steroids, or an infusion of antibodies to reduce the autoimmune reaction. Some centers actually admit the children to the hospital for observation to make sure to see a rise in their platelet counts, but not all centers do it, and more often then not, admission isn't necessary. Most cases of ITP resolve and will never recur, but some children do have recurrences.

The biggest thing right now is to keep your daughter out of trouble. She could easily bleed, so no jumping on the bed or trampoline! No contact sports, etc.

 

[Sho'Nuff]

How old is your daughter?

She will be 3 in a week.

 

[Sho'Nuff]

Sounds like it is ITP (idiopatic thrombocytopenia purpura). As you mentioned leukemia is on the differential, and is something the hematologist will always consider. They will actually look at a smear of your daughter's blood to see if they see any cell that could be worrisome for leukemia. The vast majority of cases of ITP are NOT related to leukemia, so playing the odds, it is a good chance that it isn't leukemia, but still is something to always think about! Of all the things that hematologists see, ITP is one of their most common conditions of healthy children they see.

Most cases of ITP are idiopathic, meaning it is unknown what caused it. Some are thought to be induced by viruses, but ultimately whether it was caused by viruses or not won't alter how your daughter is treated. Viruses can directly lower the platelet count, but not to the level of your daughter's. What probably has happened is that she's having an autoimmune response to her platelets, leading to their destruction.

In some cases of ITP, no treatment is necessary. We shall see what the hematologist thinks, but many cases of platelet counts as low as your daughter's will be treated with either a short duration of steroids, or an infusion of antibodies to reduce the autoimmune reaction. Some centers actually admit the children to the hospital for observation to make sure to see a rise in their platelet counts, but not all centers do it, and more often then not, admission isn't necessary. Most cases of ITP resolve and will never recur, but some children do have recurrences.

The biggest thing right now is to keep your daughter out of trouble. She could easily bleed, so no jumping on the bed or trampoline! No contact sports, etc.

Thanks for the detailed reply. Much appreciated. My daughter has been sacked out on the couch all day binging on dora the explorer. We shall see how things go tomorrow.

Question- is there any chance this is hereditary? I had guillain barre syndrome several years ago. Different disease i know, but it is aother autoimmune syndrome ehere your body attacks itself. I also thought they might be related somewhat because intravenous IGG is one method of treatment.

 

[TheVrolok]

Thanks for the detailed reply. Much appreciated. My daughter has been sacked out on the couch all day binging on dora the explorer. We shall see how things go tomorrow.

Question- is there any chance this is hereditary? I had guillain barre syndrome several years ago. Different disease i know, but it is aother autoimmune syndrome ehere your body attacks itself. I also thought they might be related somewhat because intravenous IGG is one method of treatment.

They are related in that they are both auto-immune conditions. Unlikely that there is any inherited relationship, though. abj13 covered it well above, statistically it's likely ITP and she'll do just fine; but they need to be thorough as to not miss the scary stuff.

 

[highland145]

Wishing you and yours the best.

 

[abj13]

Question- is there any chance this is hereditary? I had guillain barre syndrome several years ago. Different disease i know, but it is aother autoimmune syndrome ehere your body attacks itself. I also thought they might be related somewhat because intravenous IGG is one method of treatment.

There could be a genetic component, but it would be something like there may be an autoimmune trait in your family that places people at increased risk for a variety of autoimmune diseases, not just one syndrome. It would be analogous to families who have heart disease or cancer that runs through the family, it just raises the risk, but how much that risk is raised is always difficult to quantify. There wouldn't be one single mutation that would make someone definitely have ITP, Guillain-Barre, etc, like there is for diseases like Cystic Fibrosis.

 

[KlokWyze]

I'm having my first kid in 2 days. Would have a hard time dealing with this kind of thing for sure. I hope it turns out to be something minimally bad and is easily treatable. :thumbsup:

 

[chelhxi]

My brother had ITP when he was about 20. They ended up removing his spleen as they couldn't get him weaned off the pred without his platelets dropping again.

He's generally fine without his spleen, but has to be a bit more careful about accidents/infections.

 

[Sho'Nuff]

There could be a genetic component, but it would be something like there may be an autoimmune trait in your family that places people at increased risk for a variety of autoimmune diseases, not just one syndrome. It would be analogous to families who have heart disease or cancer that runs through the family, it just raises the risk, but how much that risk is raised is always difficult to quantify. There wouldn't be one single mutation that would make someone definitely have ITP, Guillain-Barre, etc, like there is for diseases like Cystic Fibrosis.

OK thanks. Hopefully this resolves itself on its own, or with minimal treatment. My daughter has been through a lot already in life. She needs to catch a break.

 

[AnMig]

most likely itp and hopefully isolated and self limiting.

hematology appointment is still more than 24hours from now, should be okay since her platelets are still 8000. just watch out for spontaneous bleeding (nose bleeding, gums). if this occurs she should have her platelets rechecked. spontaneous bleeding usually does not occur if platelets are over 4000 but it can happen.

usually if spontaneous bleeding occurs doctors will intervene with IVIG and or steroids. very rarely do they need platelet transfusion.

now if your family recently traveled to the Philippines dengue hemorrhagic fever would be in the differential.

It sounds like she is well appearing and not ill appearing aside from the petechiae this is always good.

again most likely benign, good luck.

anmig

 

[manimal]

God bless man and take care.


Hope everything is easy and painless for her.

 

[MongGrel]

Best wishes, I had never even heard of that one.

Do not know what else to say.

Other than hang in there man.

 

[ThatsABigOne]

Keep your chin up and best wishes to you and your family.

 

[Majcric]

Op, I can never find the right words for these type of situations. But I wish your daughter the best of health with the many years ahead.

 

[abj13]

spontaneous bleeding usually does not occur if platelets are over 4000 but it can happen.

The risk of spontaneous bleeding is an inverse relationship between platelet counts, the risk is very small at 50,000, but rises substantially by the time you hit 10,000-20,000. I have never heard of 4000 as any cutoff, let alone as a number at which spontaneous bleeds do/do not happen.

 

[tortillasoup]

My dad had the same thing as OP's daughter, turned out he had internal bleeding in his stomach due to an ulcer. He had to get several platelet transfusions as he almost died.

 

[TheVrolok]

The risk of spontaneous bleeding is an inverse relationship between platelet counts, the risk is very small at 50,000, but rises substantially by the time you hit 10,000-20,000. I have never heard of 4000 as any cutoff, let alone as a number at which spontaneous bleeds do/do not happen.

I've never heard of an "official" platelet count that demarcates "bleeds" from "doesn't" bleed. As you mentioned, 10,000 is generally the number I hear/read that, below which, portends the highest risk of bleeding but with anything else in medicine, nothing is absolute. I've read some consensus statements on management that suggest pharmacotherapy in patients with "moderate bleeding" with counts <30k and "mild bleeding" (generally cutaneous) with counts <10k. Just expert opinion though, I'm not aware of formal guidelines.

 

[Mixolydian]

https://en.wikipedia.org/wiki/Thrombocytopenia

Causes

The causes of thrombocytopenia can be inherited or acquired.[6]

Decreased production

• Dehydration, Vitamin B12 or folic acid deficiency
• Leukemia or myelodysplastic syndrome or aplastic anemia
• Decreased production of thrombopoietin by the liver in liver failure
• Sepsis, systemic viral or bacterial infection
• Dengue fever can cause thrombocytopenia by direct infection of bone marrow megakaryocytes, as well as immunological shortened platelet survival.
• Hereditary syndromes
• Congenital amegakaryocytic thrombocytopenia
• Thrombocytopenia absent radius syndrome
• Fanconi anemia
• Bernard-Soulier syndrome, associated with large platelets
• May-Hegglin anomaly, the combination of thrombocytopenia, pale-blue leuckocyte inclusions, and giant platelets
• Grey platelet syndrome
• Alport syndrome
• Wiskott–Aldrich syndrome

Increased destruction

• Idiopathic thrombocytopenic purpura
• Thrombotic thrombocytopenic purpura
• Hemolytic-uremic syndrome
• Disseminated intravascular coagulation
• Paroxysmal nocturnal hemoglobinuria
• Antiphospholipid syndrome
• Systemic lupus erythematosus
• Post-transfusion purpura
• Neonatal alloimmune thrombocytopenia
• Splenic sequestration of platelets due to hypersplenism
• Dengue fever has been shown to cause shortened platelet survival and immunological platelet destruction.
• HIV-associated thrombocytopenia[7]
• Gaucher's disease

Medication-induced

Thrombocytopenia-inducing medications include:

• Direct myelosuppression
• Valproic acid
• Methotrexate
• Carboplatin
• Interferon
• Isotretinoin
• Panobinostat
• Other chemotherapy drugs
• Singulair (montelukast sodium)
• H2 blockers and proton-pump inhibitors have shown increased thrombocytopenia symptoms, such as red dots near the bottom of the legs.[8]
• Immunological platelet destruction
• A drug molecule binds to the Fab portion of an antibody: A classic example is the quinidine group of drugs. The Fc portion of the antibody molecule is not involved in the binding process.
• A drug molecule binds to the Fc antibody moiety, with the drug/antibody complex subsequently binding and activating the platelets: Heparin-induced thrombocytopenia (HIT) is a classic example, in which the heparin-antibody-platelet factor 4 (PF4) complex binds to the Fc receptors on the surface of the platelet. Since the Fc moiety is now unavailable to the Fc receptors of the reticuloendothelial cells, the normally occurring destruction of the platelets is prevented. This may explain why severe thrombocytopenia is not a common feature of HIT.
• Abciximab-induced thrombocytopenia.
• More extensive lists of thrombocytopenia-inducing medications are available.[9]

Other causes

• Snakebites, particularly by pit vipers.[10]
• Onyalai, a disease of unknown etiology, is seen only in parts of Africa, but suspected of being caused by poor nutrition or consumption of tainted food.[11]
• Excess consumption of oils containing erucic acid, such as Lorenzo's oil or mustard oil; see the side effects of taking Lorenzo's oil.
• Niacin Toxicity - Reversible thrombocytopenia has been observed in patients with niacin toxicity, particularly when large doses (3000 mg/day) have been prescribed in patients with impaired renal function. The toxicity in this situation has been known to manifest itself in the form of increased renal impairment and declining platelet count.
• Pseudothrombocytopenia
• Lyme Disease

 

[TheVrolok]

https://en.wikipedia.org/wiki/Thrombocytopenia

... why?

 

[Sho'Nuff]

Mix - while I appreciate the sentiment (I think) - I really was not looking for someone to give me a wikipedia quote/link.

Good god I am stressed as hell about this - haven't been willing to admit it until this afternoon. Can't sleep. Binge eating like a mfer (haven't done that since October). Irritable as hell.

Extremely nervous about what tomorrow will bring. Hopefully only good news.