Son struggling with body aches and fatigue

[Ridgecrest]

Hey guys, I was wondering how many of you struggle with fatigue and body aches. My son is now constantly complaining that his (particularly his head, neck and joints) "don't feel so good". He tires so quickly and asks to sit down regularly. Yesterday we were in the pool, he had been playing for about an hour, maybe a little more, when he suddenly got out if the pool and asked to put his clothes back on. I asked why? He said he wanted to go inside so he could rest. Now, this child loves the pool, as most 5 year old boys do. He has also gone back to taking mid day naps. He is not bruising and has no petichia so as far as I know his last IVIG treatment is still holding his platelet count up (when last tested it was at 675,000 a little too high). Do any of you struggle with this with your little ones or even as adults? I don't want to rush him back and forth tot the doctor if this is a common issue.

[Calliecat]

Is he on any medication right now? What was he on in the past? Does he still have his spleen?

[owenm]

Ridgecrest,

IVIG may cause headaches, I was prescribed paracetamol with my IVIG treatments.

I now receive anti-d (rhophylac) which still gives me headaches for a few weeks after treatment.

I find that receiving plenty of IV fluids with and for about 30mins after the anti-d, reduces the intensity of the headaches in the first week. (tho this may all be in my head)

With regard to the fatigue, I find that I need to ensure I engage in plenty of activity to keep me feeling energetic, but too much will leave me feeling washed out, I regularly have afternoon and evening naps.

My body aches are maybe a result of getting old, or of old sports/work injuries, so I refuse to link them to my ITP or treatment.

Let us know how things go after his reviews, his response to the IVIG sounds encouraging.

Owen

[sailor]

Hi Ridgecrest. I am afraid to say fatigue is part of ITP and this has been proven by the ITP Support Association sponsored research at Newcastle University. What varies is the intensity of the fatigue. Many are completely washed out and others only mildly affected. We are not all the same. However, as he is a growing lad, he will have that to contend with also. My count is usually around 10k and has been so for the best part of 20 years and yes I do feel fatigue and often have to take a power nap. If however you have any doubts and are concerned with the headaches, go back to your consultant and ask him to make sure there are no other underlying reasons.

In respect of IVIG. Headaches are a side effect of this drug but hopefully he will not need to take for too long. ITP in children can and often disappears as quickly as it comes.

I do not know where you are located, but there are specialist pediatric ITP consultants at various locations around the country who you may consider taking a second opinion from.Look at the ITP Support Association web site for a list of these centers and then ask your GP for a referral. Hope all goes well for you both.

[NickyD]

Hi Ridgecrest Let your son sleep when he needs to. I could not get through a day without a nap. Luckily this is not the case now but I do tire easily. NickyD

[MaineMom3]

My 5 year old has ITP and we found fatigue to be a very common problem but only when his counts are down. We encourage him to rest when he needs to and always move bedtime up when his counts go down. We plan for quiet activities in the afternoons and follow his lead. He also suffers from joint and leg pain, but we've been told repeatedly that this is not related to ITP and all other major conditions have been ruled out. Seems to be a fluke of sorts. Our doctor suggested having him tested for juvenile arthritis as that is also a type of autoimmune disorder, which we did just to be safe. Good luck!

[Jo40]

Hi, early this year my 5 year old son was diagnosed with ITP. His blood count was six at it lowest and he was was still shattered after having a dose of flu. He went from being energetic and outgoing to pale and gaunt, it was devastating as parent to watch.

Over time he gradually improved, without medication, to get back to his previous cheeky self and has recently been signed off after six months worth of blood tests. I can honestly say, it was the most frightening experience of my life to even watch someone you love suffer with ITP, never mind being the one to have it.

The ITP association provided plenty of reasurance and well researched information to help us, and him, through.

Thankfully, children can and do bounce back with the most amazing determination and courage.