[alfies mum]

last october we took our 3 year old son to a and e because of a unusual rash on his belly,the doctors noticed lots of bruising that we had excepted as our son is so lively apart from getting a little paranoid over all the questions about brusies we thought we would be told to go home as the rash just looks like melingitus but because he was well we just wanted it ruled out.

to our horror they told us he had leukemi and the rash and brusies was because of it,after they admitted him and run some more test they said it wasnt leukemia it was itp and instead of having 150 to 450 platlets he had 6 just 6 and this was why he had the symptoms.

obviouslly a better out come than leukimia we were still petrified as the doctors explained itp and told us of the risks of spontaniouse brain hemorage etc. he was discharged the next day we had to take him back every few days for blood test his platlets jumped just after xmas from 30 to 242 we were over the moon but gradually eaqch week they have fallen down he is just over 100 at the moment, the reason i am putting this on the lupus site is because one of his doctors said the ecxma i thought he had over his nose and cheeks could be lupus.

the only other symptoms or qwerks are very creamy coloured poo, the rash on his face, leg pains at night and the low platlets. the only other medical problem he has had is allergys as a baby. the hospital thought he had celiac deaseas but decided on lactos intolerance. he seems to have out grown this now,he is due to see the hemotolagist on the 4th feb.
what sort of blood test do you think he should have to rule out lupus, our doctors seem to have tunnel vision with itp at the end and dont seem to listen about his other symptoms.

i have looked on google at pictures of the butterfly rash on the face and my baby has the same but thankfully he is loads of the other symptoms free do you need every symptom to have lupus ? i sure hope our doctors are right and this is itp

 

[Joandublin]

Hi there

What a terrible worry for you. Im no expert on this but let me try and see if I can help.

Firstly you dont need all of the symptoms you will read about on various sites to have Lupus. Everyone is different and a child as young as yours would not be able to identify many of the symptoms in any case. There is a classification criteria of 11 indicators and only four of these need to be present for a diagnosis of Lupus to be concluded. Indeed in some cases, fewer than four would be needed.

Here is a link to the post on this site which explains the criteria:

http://www.thelupussite.com/forum/showthread.php?t=33123

Secondly you asked what tests should be run to exclude Lupus. Lupus is a complicated disease to diagnose and there are no blood tests which can rule it in or out for absolute certainty. However there are blood tests which can almost certainly diagnose Lupus and I hope to goodness your doctors are considering these.

ITP is usually a diagnosis of exclusion when other causal factors have been ruled out. Your son does have ITP but the underlying cause for it is what you need to be trying to find out. So its not a question of whether he has ITP or Lupus - its a question of what is causing his ITP. Heres a quote from the link below it. Click into the link and have a read through it:

ITP is now often called immune thrombocytopenic purpura rather than idiopathic because of recent findings that ITP patients have autoimmune antibodies in their blood.

http://www.healthatoz.com/healthato.../ency/idiopathic_thrombocytopenic_purpura.jsp

They have already ruled out Leukeamia and they should now be ruling out autoimmune causes before considering it to the idiopathic (ie no known cause). Please speak to your doctors about blood testing for systemic or immune causes of his ITP. Indeed they may have already tested for Lupus. Make sure you discuss his blood tests and results fully with his Haematologist on the 4th. The kind of tests they should be running are Anti Nuclear Antibody (high positive in about 97% of people with SLE), ENA (extractable nuclear antigens which are a more detailed subset of antibody testing if the ANA is proved positive), Complement Levels particularly C3, C4 and perhaps C50. Complement Levels are often low if Lupus disease activity is present. Of course the usual full blood counts should be run but I presume they are done as a matter of course. I presume they have carried out urine tests?

Here is a link from this site about relevant blood tests which should help.

http://www.uklupus.co.uk/tests.html

We will help you all we can but your big job now is to follow his care with absolute single mindedness. If you have to make a nuisance of yourself then so be it. Get copies of the blood tests they have already run. Bring them here if you have to and we will try and help you understand what they have already tested for, etc. If they are treating his ITP as idiopathic I would be asking them what causes they have ruled out (besides Leukemia). If Lupus is his underlying problem then he will need to be seen by a Rheumatologist. What kind of specialist is he under at the moment? A good Rheumatologist can do the kind of detective work it might take to find out what is wrong. Having the right specialist can make all the difference.

If you are finding all this medical stuff overwhelming, talk to your GP. Ask him for his help and advice. Most GP's dont know much about Lupus but if you have a good relationship with them they can be invaluable in helping you get to the right people.

Please let us know how Alfie is and I sincerely hope you can get some answers and the right treatment soon - whatever that is.

Take good care
Joan:rose:

PS Just an afterthought. Who was the doctor that said it could be Lupus? Is that one of his team? Go back to him and ask what are they doing to test for Lupus

 

[mommachubb]

Itp

My little sister has ITP and has had it since a child. She was told all of those horrible things too. They even had her seen by a cancer doctor for most of her childhood life. They checked her ANA when she was hospitalized when the disease was found, and it was negative.

She couldnt play ball anymore due to the risk of injury, and things like that. She was monitored with labs, and put on prednisone. when her platelets would get really low they would give her an IV drip of IgG.

Just watch him when he gets sick too, her platelets will go down drastically when she has a cold/flu. And watch his skin for "petechai" (sp). these are pinpoint blood blisters. look kinda like microscopic red freckles. When the platelets get low the capillaries under the skin burst, causing this. So you will know to get his blood checked.

Dont want to scare you, but have dealt with this for many years now, and hope to help you. He will be able to live a pretty norm life, even though everything you are hearing from the docs is pretty scarry right now. Hang in there, I cant imagine how you must be feeling for your child. Thoughts and prayers go out to you and your family.

 

[LolaLola]

Hello, You have had an awful time. Fancy telling you it was Leukemia before they were sure. That is cruel.
There is definitely no harm in asking what they are doing to exclude auto immune causes. This is your child and you have a total right to be treated as a partner in his care.
We will be here for you and if it isn't Lupus please don't feel you have to vanish from here. We will want to know how it goes.
x Lola

 

[alfies mum]

thanks for replies they were help full, the 4th cant come quick enough, when he was first diagnosed with itp they did say his red and white cells were normal apart from knowing that they have been very vage, i think they already see me as a pain but i really dont care they can think all they want as long as alfie gets over this i dont want him diagnosed with any thing but i want it all ruled out and in my heart of hearts i know something is up. yesterday alfies face flared up so bad it looked as if he was burned over his nose and cheeks and he had a totally different rash all over the rest of his face. i hope i am wrong but i think his counts have dropped again as he has 5 new brusies today i will be watching and waiting he does have open door to childrens ward so we can just take him to the ward day or night.
once again many thanks xx

 

[SoCalEric]

I had an experience with ITP a few years before I was diagnosed with Lupus. I was about 25 at the time. I had a bone marrow test done to make sure I was producing platlets (I was) and was put on 100mg of Prednisone. It was pretty much assumed that my spleen was filtering out the platlets. If the Pred. didn't do the job they were going to remove my spleen. The pred. did the job and I still got a spleen! Not sure if with a 3yo gets same course of treatment but I just thought I'd give ya my experience. After the treatment I've never had ITP troubles again........I started having MANY other troubles 5 or so years later that led to my diagnosis of Lupus.

Best Wishes,
Eric

 

[alfies mum]

alfie had his appointment today the hemo said she doubts its lupus but she said there is enough concern to carry out the test, she took all his history from birth alfies Petechiae rash has been gone for 4 weeks now when the hematolagist lifted his top up to examine him it was back so they done his platlet count as urgent and we got the results in 10 min he had 185 bit bazar but i am happy, i cant remember all the test they done but i know the liver,renal were on list and the reason on the form was itp leg pain and other autoimune dieseas she said some thing about chemistry test for salt and other things cause of his mood swings to be quiet honest i was so taken back because of the Petechiae rash it really threw me as it wasnt there this morning so now we are at sit and wait.
but thanks to you all especially stephanie ann and lola your chat really helped last night
xx
i will post results as soon as i get them

 

[LolaLola]

Thanks for the update Dee. It was good to chat with you. Hope to catch you again.
x Lola