Itp, platelets rising: My sons... - ITP Support Assoc...

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Itp, platelets rising

Shoni89 profile image
27 Replies

My sons platelets were at 9 on Monday!

He came down with a cough and very high fevers up to 40! I couldn't control them. So it was another hospital visit. I was also worried about a mass in his neck, but I kept getting brushed off as it was nothing. My boy wasn't eating and drinking and hasn't done a normal poop in over two weeks. I kept taking him back to the doctors not accepting that his neck is nothing to worry about but he was in pain. She took a look properly and realised his lymph nodes are in fact swollen and he has indeed got tonsillitis. He was given antibiotics. I also had a ultrasound on his neck that confirmed it was a bunch of lymph nodes.

I noticed his bruising had improved overnight!

I rang the haematologist this morning, as I wanted to start treatment. She told me we were holding off until he was better as being sick with a cold will bring his platelet DOWN! She said that I was welcome to bring him in to have him checked out. I took him in. I asked her if it was possible his platelets can increase during a cold or infection as the immune system is focusing on the cold rather than platelets. She told me no, the platelets go down. She requested a blood test! His platelets are at 128 😯. She rang me and left a voice mail telling me ''you asked me if his platelets can increase during a cold, I told you no, I was wrong''! What is going on, how do platelets increase that much from monday-friday? He started the antibiotics on Tuesday. Could it be possible he had an infection causing this the whole time? Or could I be getting too excited, once he stopped antibiotics and the cold and infection is gone that he has low platelets again? I was really starting to think I wanted him tested for lukemia but now this is a huge change. Has anyone else had similar changes taking antibiotics? Or their platelets go up after a cold or infection?

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Shoni89
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27 Replies
Ab36 profile image
Ab36

Poor you, you are both having a really rough time!!! My sons platelets have shot up a couple of times to over 100 when he has had a virus. The answer I was given for this is that when my son has a virus his body concentrates on fighting the virus rather than fighting the platelets. Both times they have dropped again once the virus is away. Hopefully your son will be on the mend now, I really hope so you deserve a break. Keep us posted. :-)

Shoni89 profile image
Shoni89 in reply to Ab36

I thought so, at least it's a little break for now. He has the runs too and not drinking and eating as I think his throat is sore or gut..food seems to go straight through him within 20mins of eating. His appetite has changed and he won't eat. I am finding it hard to keep him hydrated.

Littlebleeder83 profile image
Littlebleeder83

Hiya, I'm new on here and not an expert by any means. I imagine a large cause of his increase in platelets is as you say, his body concentrating on fighting his infection but another potential contributing factor could be to do with him being off his food. If he's not eating, he may be inadvertently avoiding some foods which cause inflammation which can cause a drop in platelets. trigger foods are different for everyone. I have many intolerances...you wouldn't believe! But I have cut out gluten since being diagnosed with ITP and while my spleen still hurts daily and I go through periods of extreme fatigue, I haven't needed IVIG in nine months...no bleeding and no bruising. It might just be worth taking a look at his diet if you haven't already and seeing if certain foods cause changes in his platelet count. Hope the little guy gets better soon.

All the best.

Bex

Shoni89 profile image
Shoni89 in reply to Littlebleeder83

I have tried going organic and nothing changed. His platelets were just going down. I was telling myself yesterday that maybe they mixed the blood tests up. His next bc is on the 13th, so fingers crossed they are still near normal. He has slept for 4hrs today. He has never slept more than an hour. He was very run down today and very lethargic.

Topography52_- profile image
Topography52_-

I have had a series of colds and every time my platelets rise last week 133 when normally in there 30,s my hematologist mentioned I was due to get an infection sure enough caught a cold : ) I do not take antibiotics just let it take its course . Take care of yourself and your little one : )

Shoni89 profile image
Shoni89 in reply to Topography52_-

He is on antibiotics for his tonsillitis and refuses to eat or drink as his throat is swollen 😥. He has so much going on at the moment. I have my fingers crossed his platelets will remain up, however I feel it's on temporary. He has his next bloods in about 2wks, so I will keep you all posted.

Topography52_- profile image
Topography52_-

Give him lots of loves and hugs better than any medicine : ) take care of you both XxX

Ab36 profile image
Ab36

How have things been for you over weekend? What's the news on your son? :-)

Shoni89 profile image
Shoni89 in reply to Ab36

We have bloods again on the 13th so I'm hoping they are good. His tonsils are much better, he still has runny poop but he is much better. I have not noticed any new bruising or rash so I'm hoping his body has fixed itself

Kyriak51 profile image
Kyriak51 in reply to Shoni89

Hi shoni89, I don’t remember if I told you that children generally develop ITP after a viral or bacterial infection which seems to be that case with your son as his platelets are increasing as tonsillitis is improving. Children generally respond well to treatment. Check out the post by jamesheater1 from Australia, you will find his journey will encourage and comfort you. I will check in on the 13th for good news:)

Shoni89 profile image
Shoni89 in reply to Kyriak51

I would like to think that, but I don't think my boy has had tonsillitis for over 3 months. I noticed this after his 18month immunisation. He is now 21 months. I believe he got this from his immunisation. A few days after immunisation I had multiple visits back to the doctors for petechia rashes/pin prick dots. It's a 1 in 40,000 chance from immunisation but I just know it was from that. I believe his platelets were increasing because his immune system was extremely busy focusing on the infection and cold and alot of people do say that once the virus or cold is gone the platelets go back down so I'm not having high hopes but fingers crossed for some positive results Next Week.

Ab36 profile image
Ab36

Oh I hope hes on the mend poor wee thing:-) I Will keep my fingers crossed for you both for the 13th and will hear how it goes.

Shoni89 profile image
Shoni89 in reply to Ab36

I think our bubs need to have a shot of a fake virus to keep their immune system busy, or confuse the immune system. If it keeps the platelets up?

Kyriak51 profile image
Kyriak51

Immunizations (vaccines) DO NOT cause cancer, autism or ITP. Vaccines prevent diseases like polio, diphtheria, pertussis, measles, smallpox, tetanus. Gardasil which prevents cervical cancer in girls and cancer of the penis in boys both caused by the HPV virus, vaccine is given to children when they are 11 to 12 years old and is very effective. One-fifth of all cancers are by viral infections. My six month niece developed hemolytic anemia after a mild case of viral Roseola, her immune system was activated to attack her RBCs (autoimmune disease). Her hemoglobin was 0.4 grams per decaliter ( normal is 14-15grams, admitted to ICU given 2 units blood via central line and started on steroids for 2years before she was cured. My 24 year old son developed Type1 diabetes after sever Strep throat and tonsillitis. No family history of diabetes, his immune system was activated to destroy his pancreas and is now on insulin 5 times a day. As for me, I had a prolonged labor with Cesarean section, hemorrhage and massive infection. I was hospitalized for 10 days on triple antibiotics. By the time my son was 6 year old, my platelets dropped from 350,000 thousands to100K. That infection caused my immune system to destroy my platelets I.e. ITP. Three of us with autoimmune diseases, possible genetic connection? This was a long way around to say: your son’s ITP was caused by infection NOT by vaccines.

You should read jamesheather1 post, he had a10 year remission and is from Australia, he could be your neighbor. Be well:)

Shoni89 profile image
Shoni89 in reply to Kyriak51

1 in 40,000 chance from the mmr vaccine (mumps, measles, rubella) immunisation to get itp.

Not sure about any other vaccines but mmr is known to.

It’s most definitely more common in children who have had viral infections. ITP occurs after 1 in 40,000 MMR vaccinations, according to the centers for disease control and prevention.

I have confirmed that also with our paediatrition, our hematologist, Dr and also done alot of research. My son was not sick when he got itp. He was happy and well when I took him. He had his immunisation and within a few weeks I noticed the signs. The red pin pricks. He also had a huge reaction in the injection sight. I have photos. He was very warm at the injection sight which indicated to me maybe he had an infection from the vaccine, he had a huge red circle like ringworm. Very warm to touch. It makes sense! He was injected with viruses and some strains are more live than others.

I am not saying immunisation is a bad thing, it's a great thing! It is there to protect everyone! Sadly I believe we were in that low 1% but of course the protection for it still outweighs itp. Sounds like you are going through a huge rough patch, there may be a missing link that's certainly not researched. There isn't enough research on itp. Alot of people have all different affects when they are sick. Some platelets go up, some go down. Maybe my sons went down to 9 when he had the infection. I can't wait for the next results. I'm praying for some good results. My hemo thought his platelets would go down since he was sick. She was shocked to see within 3 or 4 days it went from 9 to 128!

You are one strong woman to go through so much! I pray that some good comes your way. You must be very stressed. I couldn't imagine going through much more than what's already dealt on my plate.

Clarry1234 profile image
Clarry1234 in reply to Kyriak51

It is well documented in peer reviewed research and widely accepted that vaccines can trigger ITP as well as viral/bacterial infections. Maybe it wasn’t as well known 5 years ago?

I recently changed Haematologist due to moving country and when I said the date I was diagnosed, June 2020, the first question every nurse and consultant I have seen has been ‘did I have the Covid vaccine?’ It wasn’t my trigger, mine was Itraconazole, but they have had a huge upsurge in cases in their clinic since the Covid vaccines were introduced. So in my hospital, they (the medical personnel) don’t consider it a coincidence but a link.

Kyriak51 profile image
Kyriak51

I have read the one study that that estimates 1 in 40,000 children who received the the MMR vaccine will develop ITP and believe that to be true. However, It is the measles portion of the MMR responsible the very mild form of measles that some children get 7-11days after the MMR vaccine that is responsible for the ITP. The symptoms you describe 2 weeks after his MMR injection i.e. rash, pain at injection site, fever of 40 Celsius, loss of appetite and general feeling of being unwell are the symptoms a child with measles would have. Since we both agree that Viral/bacterial infections cause ITP I can only hope that your beautiful child has the same good results me niece...complete remission/cure! Be well:)

Shoni89 profile image
Shoni89 in reply to Kyriak51

He had bloods today and his platelets are at 279. I have such a feeling of relief. I'm praying they stay up!

Kyriak51 profile image
Kyriak51

Great news, I was so worried he must be feeling so much better. Keep up the good work:)

Ab36 profile image
Ab36

Hi, how did bloods go today,hoping its good news.

Shoni89 profile image
Shoni89 in reply to Ab36

They are at 279. He is better too, off antibiotics and they are still up. Hoping this stays up.

Ab36 profile image
Ab36

Aw this is amazing news, so happy for you both. Hopefully he will just bounce back. Its been a scary time for you. Whens his next count? :-)

Shoni89 profile image
Shoni89 in reply to Ab36

We do his next count in 3 months. If that blood test is good then they are taking us off their books. But if I notice bruises or petechia or anything I can have a blood test done as I have the forms. I feel relived he doesn't have to have bloods for a while. It's awful to watch them go through. I was in the room of the cancer patients having chemo and made me think how little this is compared to them. I saw little boys my sons age and made me feel so sad. One boy was asking when his hair would grow back. I feel grateful. I was worried about leukemia.

Ab36 profile image
Ab36 in reply to Shoni89

Yeah its a funny disorder to live with but as you say it could be so much worse, at least with some changes it can be managed. I was so afraid of leukaemia at the start too itp was a relief :-). It would be wonderful if you got the all clear in three months. That's great news, keep in touch. :-)

Wintersun007 profile image
Wintersun007

what I will say, given my ITP followed second dose of Pfizer covid vaccine, that for subsequent vaccination for flu and covid, with weekly blood tests platelets fall at week 2, then show a rise above baseline (baseline 80, fall to 60 rise to 120).

Lynwoodley profile image
Lynwoodley

Hi I have had low platelets since 2018 I have bloods checked every month mine average about 30-40 I found every time i’m sick my platelets go up When I had covid I had my blood checked after I was allowed out and they were 328. when i have a cold or anything wrong they go up a lot. I think when i’m sick my immune system fights the sickness so leaves my platelets alone but as soon as i’m well again they start to attack my platelets. So if i’m sick now at least I know my platelets are much better😜 I hope this helps

ITPmama profile image
ITPmama

my son has had his platelets go up and go down when fighting other infections. If he gets sick, we have no idea which way it might go. We just watch other symptoms and give it a chance for the virus to clear before panicking too much!

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