any advice on prednisolone for kids...

[S38abcd]

My 9 year old has ITP since he was one. So far no medication ,now at count of 7 heamatologist satrted giving predisolone, Im not sure if its helpful. I want to know what side effect it can cause. I've been told that bone marrow transplant is the only solution to this condition. I,m an Asian working in Saudi Arabia and not sure where to go for transplant that sounds a scary thing. PLease advise...

[Lin6]

Hi mine also went down to a count of 7 in June/July, Was also put on prednisone 80mgs my platelets are now back up to 138. Iv just been weaned off meds so keeping everything crossed for my next appt platelets stay up. I know I'm one of the lucky ones but you should give the medications a chance before starting other treatments. Due to the meds I put on weight, felt quiet dizzy but pleased to say it's all starting to get better now I'm off meds. There are alot of people on here that can give you good advise and may live nearer you to point you in the right direction. Good luck, hope all goes well for your son.

Lin

[S38abcd in reply to Lin6]

Thanks Lin Im a nervous mother.I felt OK that my son is having normal childhood with 10 platelet for 4 years but when he has a trauma he needs transfusion.Now Two experienced heamatologists have advised transplant .They sound as if it is a piece of cake.My own cousin a few years ago with a plastic anaemia tried it but transplant failed.I wanted to keep him away from medication but it seems Ill have to give steroids a try.

God help us.

its a pity even doctors seem to be experimenting and not having permanent cures....

[Lin6 in reply to S38abcd]

I agree re doctors, wish they were honest in just say they don't know!!!!

I'd never heard of ITP until I was poorly in June. since reading everyone messages on here, There are alot of treatments used depending on your doctor and how we all cope with it. I hope your son responds to medication soon bless him and you.

Lin

[Rockette62 in reply to S38abcd]

Look for support groups. They have lots of people who have lived with it for years. They can give you lots of information. I have a link to a info booklet I will try and paste it here for you.

[Rockette62 in reply to S38abcd]

Immune Thrombocytopenia A Practical Guide for Nurses and Other Allied Healthcare Professionals. This document is very good. I cant get the link but search for name. It is a UK booklet.

[S38abcd]

Thanks a lot .How he responds we' ll know after a week...

Regards

[bige54 in reply to S38abcd]

I've been fighting itp for about 2 years now, and during this time have discussed with my doctor many possible treatments. I have also researched extensively on my own and i can tell you that never once have i heard of a bone marrow transplant being advised or used as a cure or treatment for itp. There are lots of ways to fight this disease but i don't believe a bone marrow transplant is one of them. If there is some other reason for your son's low platelets other than itp, then it could be possible, but if the cause is ITP i don't believe a bone marrow transplant would work

[RobertSp in reply to bige54]

I very much agree! Never heard of bone marrow transplant to treat ITP. Bone marrow makes platelets and should be tested to see if it is functioning properly. If it is not then it is a different disease from ITP.If the bone marrow is producing platelets then I do not see a good reason for a bone marrow transplant. In true ITP the problem lies elsewhere eg the spleen, tonsils or liver. I encourage getting a second opinion before getting a bone marrow transplant.

[scaryteacher in reply to RobertSp]

Never heard of the tonsils being a problem, could you tell me where you read about that please, as I'd like to read the article? I knew the spleen or liver destroyed platelets, but not the tonsils.

I got ITP when pregnant, as something triggered it. I think what triggers it is the problem, as opposed to where the platelets are destroyed.

[RobertSp in reply to scaryteacher]

One of my doctors mentioned tonsils and it makes sense as tonsils participate in the immune system. I have heard that there is a iridium test available in UK which can identify where the platelets are being destroyed. I think this test would be wise before any surgery like spleenectomy or bone marrow transplant. You and I and some early literature agree that there is probably some trigger for ITP. It was once theorized that a body could encounter some virus or environmental allergen which appears to the body to be similar to the surface of blood platlets. But once triggered there is no off switch known to me or any doctors which I have talked with.

[scaryteacher in reply to RobertSp]

There's the indium test which is performed to see where the platelets are being destroyed, in the spleen or the liver.

My trigger for ITP was my immune system reacting to antibodies from my baby when I was pregnant. I didn't have ITP before I was pregnant, then it was triggered, and over 20 years on, I still have it.

[prish]

None marrow is done to rule out other causes of low platlets..and is mostly done before giving prednisone...just see after the course of the new wht r the platlets count...I hv to b patient ..it's tough ..even my 9 yr old has itp..her counts r 1lakh 7 thousand now ..after 3 mnths..but it differs..

Pred has lot of side effects like weight gain ..they feel like hogging all the tm..sleepless nights smtimes. Etc again being a mom u hv to b patient strong and caring..

[JasonJ]

I have read everything I can about ITP and had my fair share of treatments, never heard of anyone having a bone marrow transplant.

In ITP the immune system is generally the problem, killing the platelets produced by the bone marrow. So in most cases there is no fault with the bone marrow.

Has your son had a bone marrow biopsy? They take a small sample and check it to see if it is producing platelets.

I am currently taking medicine that helps my bone marrow to produce more platelets, although my production was at a normal level. However my immune system tries to kill off all my platelets as fast as I can make them. I currently also take a low dose of prednisolone which helps to keep my immune system in check.

Good luck

Jason

[22-patience in reply to JasonJ]

Jason what meds are you currently taking? Please share.

[JasonJ in reply to 22-patience]

Revolade (Electrombopag) 75mg tablet daily and prednisolone, currently at 15mg daily. Possibly can reduce the prednisolone this week if my count is high enough. (80+)

[22-patience]

I agree with everyone who says "never have heard of a bone marrow transplant" being the answer to ITP. Bone marrow "biopsy" is frequently done and "splenectomy" but not bone marrow "transplant"! I don't know where you live but you need to see a good hematologist. I have done extensive reading and asking questions and have seen several hematologists over the years and have never been advised to have a transplant. Dangerous! There are side effects with prednisone but you can live with them. And some people never have serious side effects. I have been taking prednisone for years----up and down on the dosage. And my platelets have been tested when they were way below 10,000------at 3,000. That's when I have an infusion (IVIG) intravenous medication to help with increasing platelets. Good luck with your decision but I believe that now there are a lot more options in medications for ITP. People on this site tell about their experiences with different drugs which may be helpful.

[swheels]

Hi, I've had ITP since I was 2yrs old, had a brief remission for around 10 years, then a relapse. Unsure as to what caused it but possibly due to a double vaccination. I also haven't heard of a bone marrow transplant as treatment, as I would have had one by now I'm sure. I've had a splenectomy when I was about 3, this didn't cure it either but it helped. Bone Marrow tests are carried out to see if the disease is set in the bone marrow, this could mean it's long term treatment, chronic, or short term and one off acute symptoms, can be determined from a bone marrow test. With prednisilone, main side effects are major reduction in calcium to the bones, so keep his calcium topped up. Weight gain, this can be either gained or lost, depends on the person, this is unavoidable. I tried to keep the weight off with healthy diet but after a huge dose of steroids to kick start my body, it was just impossible. He may get knee cramps and not sleep well. It can affect the nerves, meaning he may start biting his nails, I did and it's hard to stop, I was told it was down to nerves. Also avoid ibuprofen, as this reduces platelets, I only found this out recently, so I don't buy it or Nurofen. Paracetamol or co codemol only for headaches etc. Hope he recovers his count quickly so that he is only on them for a short time.

Best wishes

Sheila

[S38abcd in reply to swheels]

Thanks dear for your thoughts..I'm just being patient and watching.My son's marrow is not making enough platelet and I lost a cousin some years back cos of a plastic anaemia. I JUST WATCH HIM GROWING AND WISH ALL GOES WELL FOR HIM AND ALL OTHERS HERE ON THIS GROUP..

[RobertSp in reply to S38abcd]

Your post leaves me curious. Has your doctor named the disease/condition which he thinks your son has? As far as I know, when bone marrow is not producing enough platelets it is called somethibg other than ITP.

[Rockette62]

Check internet for info on Prednisolone. Dr should also tell you. There can be side effects and you must never stop it suddenly. ALWAYS gradually stop over a period of weeks or months. It can cause insomnia, increased appetite, mood swings and other things. It can be very useful in treating ITP. Listen to your doctor. If you dont feel the dr is right talk to another if you can. I've just gone back on Prednisolone. My count was 69 but I had bleeding. Within a couple of days my count was 103! I have been on it before for 9 weeks. 100mg for 4 weeks then dropped 20mg a week until 20 mg then 10 mg for a week. I was okay but you should make sure he has a full stomach when he has it as it can cause upset stomachs. Good luck.

[vijij in reply to Rockette62]

Hi.may i ask you.when you take prednisolone sometimes you can feel stomachache?are your lips cracked?

[Rockette62 in reply to vijij]

I can get stomach upset. I take a tablet to ease it and always have a full tummy immediately before taking the Prednisone (Prednisolone). My skin has become drier in past and I have a sore throat most of the time. But my chronic pain goes away and I have lots of energy. Children may be similar, check with your specialist or the Internet has a lot of child based info about ITP and Prenisolone

[vijij in reply to Rockette62]

How long you take prednisolone till now?i hv experience with my daughter if not eat gluten ,white flour like a bread.pie,cake,spagetti,noodle etc cannot nose bleedi g although your platelet 69k.

[Rockette62 in reply to vijij]

I started again a week ago. I had 69k but had bleeding so started on 100mg a day for a while. A few days ago I had a count on 103k. I get another test again today. I have only been diagnosed for 5 months and I have not found food makes any difference but if I exercise I seem to have better numbers not big but better. Each person seems to have their own things that work for them. I dont think very much about ITP as I think stress and worry make it worse.

I have not had nose bleeds I get blisters in mouth filling with blood. Last time my gums started to bleed as well.

Take care of yourself as well. You are just as important to your daughters health as medicine or doctors. Love to you and your family.

[tgk62]

I have ITP. BMTransplant has not been anything suggested to manage my ITP. Prednisone, IVIG, Rituxan, Promacta, NPlate, or Splenectomy are the most mentioned treatments.

[Rockette62 in reply to tgk62]

Be aware that all of those medications can have big side effects. I was given IVIG at diagnosis because I had a count of 3. We dont get treatment here in Queensland, Australia unless we are actively bleeding or are below 30. Then its usually Prednisolone. We have twice weekly blood tests to monitor side effects and counts. The other medications mentioned are only after failure and many other things have been discussed. Often have to get approval from authorities as they are not designed for ITP.

Find out all you can and ask any question when you see your doctor.

Best wishes, Dawn

[S38abcd]

THANK YOU ALL.......I feel I'm not the only one in-the whole world to live in constant fear for my child........10 days predu and count rose to 20 from 7...he is continuing and already looks round and heavier than before.Does it affect the hormones in a 9 year old? I learned on this group that his calcium should be up but what other things can a mother do?

[Hidden]

It is important that while your son is on prednisone that his blood sugar levels are tested regularly as it can induce diabeties. Long term use can also suck the calcium from bones and cause life long health conditions.Unless your son is actively bleeding there is no reason why he cant go about his life with a low count. It is really important to know that children and adults can be managed quite differently and any advice you are given may appear scary because some peoples experiences are their own and not that of children. It is also completely your choice with what your child is given medication wise and you can seek a second opinion.And after 20 years dealing with ITP and also having a child with it I have never heard of a bone marrow transplant as an option. If your son is not producing enough platelets then medications such as promacta and other thrombopoteins can be given to stimulate their productiot. They are not however a cure nor a life long solution and have their own side effects.