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TOPIC: ITP & Hyper IgE Syndrome ?

ITP & Hyper IgE Syndrome ? 3 months 6 days ago #66524

  • rudysudarto
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Hi all ,
First of all , i really feel blessed with this community . A lot of information .
I have daughter , 11 years old . Let me tell about her medical record .

February , her platelets is 16K . Diagnosis is Dengue Fever altough when lab test said the virus was not found . 4 days recovery , her platelets reach 180k
March , sometimes she have bleed on her nose every day , happens only 1 week . THe bleeding volume is small . I tought it was just like her body cant accept
the heat of our weather here , which is pretty hot .
April
9 April - she have fever
10 April - she seems okay
11 April - she have fever again , i worried if she have dengue fever again as the last diagonis said it .
And ... she began to have nose bleed , with worrying volume and 1 hour still not stop . So i went to test lab again .
Her platelets 16K again . She was sent to hospital again . The doctor is have other suggestion , it should be something else
Tomorrow its down to 9k , and doctor says we need to move to other hospital that have Paediatric Haemotologist
After deep test diagnosis is Trombocytopenia and Hyper IgE Syndrom , because she have 2200 IgE . And yes she has food alergy and have asthma at 3-5years old and skin rash on 5years until now .
After 4 days , she recovery and Platelets reach 250k

After 2 weeks , we test again . The result is quite good . All her hematology is good , plateletes stays on 280k .
But , the IgE is almost doubled , 4300 .
Doctor says official diagnose is autoimmune disease .


But now im very confuse , is it Hyper IgE syndrome only ? or the trombocytopenia become Immune Trombocyt Purpura ( ITP ) ?
Is there any correlation High IgE levels ( Hyper IgE syndrome ) with immune thrombocytopenic purpura ( ITP ) ?
can ITP reach high platelets ? and yes my daughter still consume medicine from doctor.

End of May i will go to Singapore ( im Indonesian ) , and want to have second opinion .
Anyone can help what it might lead to ? ITP ? or its just Hyper IgE ?

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ITP & Hyper IgE Syndrome ? 3 months 4 days ago #66530

  • Hal9000
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rudysudarto wrote: ...
But now im very confuse , is it Hyper IgE syndrome only ? or the trombocytopenia become Immune Trombocyt Purpura ( ITP ) ?
Is there any correlation High IgE levels ( Hyper IgE syndrome ) with immune thrombocytopenic purpura ( ITP ) ?
can ITP reach high platelets ? and yes my daughter still consume medicine from doctor.

End of May i will go to Singapore ( im Indonesian ) , and want to have second opinion .
Anyone can help what it might lead to ? ITP ? or its just Hyper IgE ?


Rudy, found this on Wiki about high IgE and how it may be related to other problems.
"
IgE is known to be elevated in various autoimmune disorders such as Lupus(SLE), Rheumatoid Arthritis(RA) & psoriasis, and is theorized to be of pathogenetic importance in RA and SLE by eliciting a hypersensitivity reaction.
"
en.wikipedia.org/wiki/Immunoglobulin_E#Role_in_disease

The immune system is very complex. I get the impression that 'Hyperimmunoglobulin E syndrome' is genetic based. If so, and with the elevated IgE levels, seems like one could rule Hyper IgE syndrome out, or rule it in, with a genetic test.

On the other hand. Will treatment be any different depending on which problem is the root cause? I suspect not.

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ITP & Hyper IgE Syndrome ? 3 months 3 days ago #66535

  • rudysudarto
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Thanks , yeah i hardly found the correlation ITP and Hyper IgE syndrome ( eleveated IgE levels )
Because early lab check is Hyper IgE syndrome and Trombocytopenia ( low platelets ) . The last , doctor says it could be turn into AutoImmune .

I think he just confuse with the diagonis , after i research , HIES can route to other disease. And the closest high elevated IgE and low platelets is wiskott-aldrich syndrome .

Ill keep update when i having consultation wtih the new doctor next week.

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ITP & Hyper IgE Syndrome ? 3 months 3 days ago #66538

  • Hal9000
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It looks like Wiskott-Aldrich syndrome is characteristic of males only.
en.wikipedia.org/wiki/Wiskott%E2%80%93Aldrich_syndrome

On a loosely related note. CRISPR technology might be able to correct Wiskott-Aldrich syndrome.
peerj.com/articles/6284/

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ITP & Hyper IgE Syndrome ? 2 months 3 weeks ago #66603

  • rudysudarto
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I have consult with another doctor on Singapore.
He said its positively Immune Trombocytopenia Purpura ( ITP ) .
For her IgE , its just different problem because of her history on 3 years old getting asthma ( heal on 6 years old ) and get eczema on 6 years old until now .

For nosebleed that happens 2-3 a week , it can be from ITP or her high IgE .
The latest test lab , her platelets is decrease from latest 250k to 110k . But the result says the platelets is clumped so the exact count might be higher than 110k .
Anyone know whats platelets clumped means ? Sorry i dont have quite good English .

Also for newly diagnoses ITP , is there any restriction for vaccine ?

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ITP & Hyper IgE Syndrome ? 2 months 3 weeks ago #66621

  • maria3132
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Dengue is known to destroy platelets, and it's known that it can stay in your system for a long time. This is also the only disease where there are multiple well designed studies that show that papaya leaf extract helps. For example: www.ncbi.nlm.nih.gov/pubmed/27739263 I would personally start papaya extract immediately if I knew dengue was implicated.

That said, dengue is NOT ITP.

Also, it is unlikely that the nosebleeds are from ITP if her counts are 110K or more. Clumped means that the platelets are stuck together.

As Hal mentioned, you could ask your doctor to test for various autoimmune diseases.

I would also request coagulation factor tests. There is a good but technical discussion here: www.ncbi.nlm.nih.gov/books/NBK507850/ and a simpler discussion here: www.wfh.org/en/page.aspx?pid=662 (you can click on the different types of factor deficiencies in the menu on the left).

My child's pediatrician has delayed vaccines for 12 months after the last IVIG dose. From what I've read, the guidance is to delay 8-11 months. You should talk to your doctor about the correct vaccination schedule for your daughter. It is different for live-attenuated and inactive vaccines.

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ITP & Hyper IgE Syndrome ? 2 months 3 weeks ago #66624

  • rudysudarto
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Thanks . Ive check for Haemotology , Allergy Immunology and Ear Nose Mouth doctor.
The nosebleed can be cause by two factor , the ITP and the allergy.
Before its 110k , 2 weeks before its 250k .

The plan now is to observe every 7-10 days about her platelets growth . Only consume cetrizine , doctor dont give any steroid / ivig treatment . He says need to wait at least less than 30k to give some treatment .

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ITP & Hyper IgE Syndrome ? 2 months 3 weeks ago #66654

  • rudysudarto
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Just about two days ago , my daughter having hair loss . Is quite a lot than the usual . If we comb her hair softly using our hand , our hand will be able to get her hair quite a lot ( if count maybe around 15's ) .
So when we comb her hair using brush / hair comb , the volume of hair loss is more.

Is ITP also have hair loss problem ? the volume is not common for us.
Or its because the cetrizine she consume ?

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ITP & Hyper IgE Syndrome ? 2 months 1 week ago #66781

  • rudysudarto
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My daughter Platelets have being checked last week , its reach 200k again after drop 100k two weeks ago .
Is this mean she have been cured ?
When will we know if someone with ITP will be clearly heal ?
Her symptom ITP is start around Jan , diagnosed on April ( FEb already drop to 9k ) . Its already around 4 months ++ .

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ITP & Hyper IgE Syndrome ? 2 months 1 week ago #66789

  • MelA
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rudysudarto we don't have crystal balls so we can't tell you if your daughter is cured. But I sure hope she is!
Keep us posted!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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