Anyone still here who has a child with Hereditary Spherocytosis?

[zisforzebra]

There used to be a couple of us (I used to have a different user name) but there haven't been any posts on it for a while. Just wondering if there's still anyone around who knows about it and fancies restarting a thread.

It's me, I left for a while, this is my new name.
My son may have Lupus. He has been having pains behind his knees and restless legs, not getting a good nights sleep due to the pain. He has been seeing the doctor about it for a few months. First the doctor told him to take calcium pills, that didn't work. Then he ordered an ultra sound and it showed that his knees have fluid, so he ordered blood work. Son also has has stiff fingers for several months now, and lost his sense of smell. Anyways, the blood tests indicate Lupus. the doc is repeating them in 2 months.
I hope it isn't true, and he doesn't have this as well as HS.

poor boy- poor you- really hope he doesn't have it.

Hello
My son's second set of blood work didn't show a high ANA, therefore the doctor said it isn't Lupus. He has just gotten worse really, and was diagnosed on Friday at a Rheumatology clinic with a Baker's Cyst behind one knee. The doctor there ordered a bunch of blood work and he had x-rays on his hands and back, already had knees x-rayed, he is going for an MRI. She thinks he may have Reactive Arthritis.
Anyways, I guess this isn't related to the HS?

How is your son doing? And all the other HS people in this thread? :)

I'm still here ! Am so sorry that your son is suffering so much - I haven't heard of it being connected to HS. Ds is fine- having a check up week after next and blood test- he always looks quite pale to me.

Hello everyone. I hope you and your kidlets are all well.

Good news, my son does not have Reactive Arthritis, or any inflamatory disease. He is now in physio therapy for his legs, he has a floating knee caps, cysts, and crumbling cartilage. After 2 more months of PT he will be seen again, and if not better, surgery. But that is better than having any of the other things they were looking for.
He had had physio last year for his knee's, but it didn't help at all, now his knee's are "taped" to train the knee cap to stay where it should be, and at least he doesn't feel worse. Plus he has a card for the car so he can park in handicapped, which really helps.
As far as his HS goes, he is doing really well.
I wish we had insisted and kept seeing doctors until his spleen was removed when he was younger, but they said he was best to keep it as he wasn't anaemic most of the time, or jaundiced. They were wrong. Having the spleen out has really improved his health.

Hi all out there who are wrestling with hereditary spherocytosis, which as a parent of sufferer must be so difficult for you. My husband who is 76 has this condition. He's had many of the symptoms and problems you are reporting your kids have e.g. tiredness and all, when he was a child but it was put down to him being on the "weak side",a label that has definitely shaped his personality, so be warned, don't do that to your child. Fortunately more is known now about this condition. The good news is he has been very sporty, he ran his own business that employed over 40 staff, has been married for 52 years, been a great husband and father to our two daughters and is a great gran dad to our four grandsons and we all adore him. Life hasn't been plain sailing with this uninvited guest in our family but it's been very good. His enlarged spleen wasn't diagnosed until it was at the point of bursting, a life threatening drama that required a police escorted ambulance journey to a London hospital where his HS was diagnosed when his kids were 4&6. He had his gall bladder removed at the same time because it was full of stones. Yes he's had the usual crises on a fairly regular basis which were fairly short lived and some that more serious but in the main he has lived with this condition very well and I hope that's the outcome for your kids too. Believe me, if like him they are judged to be at the severe end of severe, normal life can still go on, potential and ambition isn't reduced by this gremlin even though it may take a bit longer to realise both and it hasn't shortened his life either. I worried that it would when our kids were young but now I realise much of the energy I put in to worrying about that could have been better spent and that's the message I want to leave you with because I wish someone with experience of this condition could have told me that at the time. My advice is deal with what is happening, not what might happen because that may never happen and even if it does it won't be the worst that could happen. Chin up, all the best and I wish you and your kiddies well.