11 year old son ITP

[Bishoprena]

I am seeking some insight. Brief history of my son. He had a bone marrow transplant in 2013..a side effect from it is that he developed ITP and had his spleen removed in 2013 and is currently being treated with 25mg Promacta. His platelets range from 10,000 - 65,000. When he has episodes of bleeding he is treated with IVIG.

So thats the history....now my issue is that he is misbehaving and having issues in school with behavior...he's anxious...moody...I wonder of its connected. Any advice is helpful.

[HOLCOTT]

Hi there, I am no expert about ivig. ....but I have worked a lot with misbehaving children. He has been through a lot I guess and there's bound to be some anxiety. What is actually happening at school what's the misbehaviour?

Does he talk about his medical situaition?

Is there anything else going on a school or at home that might be worrying him?

Did he miss a lot of school for the bone marriw.....? Is there a lot of pressure now being put o at school.....Is he in the UK? Sat? School transition?

My advice is to take all pressure on give him tonnes of reassurance....keep giving him chances to talk about any little worries or niggles and listen hard and take them seriously.

Get school to offer him help and counselling....nurture group....chances to unload..

Have a lovely fon Christmas and don't worry too much...your son has come through something amazing...you have done incredibly well....Enjoy each other....the behaviour will subside as he is sirrourround by chances to work out what the matter is

Lots of love

[Bishoprena in reply to HOLCOTT]

He misssd a full year of school. He does not talk about his situation much. He gets anxious when he has go to appointments because he is afraid of being admitted. Thank you for your kind words amd encouragement.

[jjjamesholder]

I live at 35,000 and never have a bleed. I do see bruising.

I am sure you have already done in in depth analysis of his blood chemistry.

I wish I had some help for you.

Jimbo

[Kyriak51 in reply to jjjamesholder]

Hi, you do know that bruising is bleeding. Two years ago I tripped over an ottoman and fell 12 inches on a carpeted floor on my right hip which resulted in a 2 centimeter bruise. However, I tend to bleed for three days without intervention, 18 hours later that 2cm bruise became a 20 by 19cm bruise and was continuing to increase in size. I notified my doctor, went to the ER where I received 3 units of platelets to stop the bleeding. My platelets dropped to 22K, hemoglobin drooped by 0.9gm. A one gram drop in hemoglobin is the equivalent to a 500ml blood loss. Three days later during my scheduled Nplate injection, my count was only 26K. Had I not received 3 units of platelet my count would been in the single digits. Be well kyriak51

[Bishoprena in reply to Kyriak51]

Wow.

[Ab36]

I have noticed that when my sons count drops he is very tired, cold and also extremely moody and emotional. Though the doctors assure me there is no connection I am not convinced.

[Bishoprena in reply to Ab36]

His drs have stated the same thing to me. However I researched and found a link to low platelets and behavior. To sum things up....when platelets are low the body is not working properly especially in the brain and odd behavior can occur.

[Ab36 in reply to Bishoprena]

I have read so many things from people actually living with ITP and they all say the same but the professionals just refuse to make any connection. At the end of the day we know our children and are aware of how things are affecting them and my son definitely has low mood and mood swings when his blood drops.

[Bishoprena in reply to Ab36]

We have to be there advocates...thats for sure.

[Kyriak51 in reply to Ab36]

There is a connection! You should tell your doctor to check the literature regarding platelet’s role in the transport of serotonin. The lower the platelet counts the less serotonin available the greater the risk for depression. I’m so tired of doctors dismissing patient’s concerns and symptoms; the best doctors listen to their patients if they know, they find out. Be well kyriak51

[Heatherjayne]

My 15 year old daughter also missed a lot of time from school, she was in hospital a lot for her itp. She had a splenectomy in Jan last year and found returning to school full time made her anxiety run riot and was having full on panic attacks. Thankfully her teacher was so supportive and understanding and made arrangements for her to do part time schooling in a building that is run by the college. This has helped her loads and she is gradually increasing her time of going. Low platelets can affect the mood but also bear in mind that some of the moodswings and "tats" are also hormonally caused in pre teens.! I hope this helps and that you can sort out something similar for your son. Best wishes to you both! Good luck and God bless😊

[Bishoprena in reply to Heatherjayne]

Thank you. He is already enrolled in adaptive classes because of the missed schooling. I am going to explore therapy options. Thank you for your reply.

[Kyriak51]

When my platelets are below30K my symptoms include increased irritability, bruising, fatigue and depression. Platelets are involved in the transfer mechanism of serotonin, a neurotransmitter involved in mood regulation, the lower the platelet the lower the amount of serotonin available. Serotonin is an ingredient in most antidepressants, unfortunately patients with ITP can’t take any antidepressants as they interfere with platelet function. We are left meditation or cognitive behavioral therapy (CBT). Six months of CBT is as effective as the antidepressants.

Your son has been through a great deal, has he been offered therapy? Be well kyriak51

[Bishoprena in reply to Kyriak51]

He has not had therapy...just evaluated. They asked if I wanted him to take something for anxiety....at the time I said no. I might reconsider.

[Kyriak51 in reply to Bishoprena]

Hi, once again I have a CORRECTION regarding my last post, second line should read “ anti anxiety medications are NOT recommended’.. My platelets dropped to 15K this week, at this level I have difficulty focusing and thinking clearly, I must be more careful and proofread my post kyriak51

[Kyriak51]

Unfortunate antidepressant and many anti anxiety medications are recommended for ITP patients. I was eventually started on atomoxetine, a cognition-enhancing medication used in ADHD, ( without the stimulants). Atomoxetine with cognitive-behavioral therapy has been helpful, please speak to your doctor we all need some help coping with this disease kyriak51

[jjjamesholder]

The is whole lot the doctors do not know about ITP. Some people obviously have side effect, or perhaps something else is causing the side effect and the ITP. Everyone is doing their best yet there are few answers. I am experimenting. I have taken some 20 one hour HYBOT treatments. Soon I will see if that helped by platelet numbers.

[Kyriak51 in reply to jjjamesholder]

I would be very interested in the test results and the name of the test that measures “stem cell” increase. Have a good day Kyriak51