I have a 10 year old son who has been diagnosed with CIPD. He has had movement issues all his life. We do not yet know if CIPD is his only diagnosis or if he has a movement disorder with CIPD on top. Two years ago he ended up in ICU as he was, unbeknown to us at the time, aspirating on fluids and he ended up with pneumonia. Things went from bad to worse and we were in hospital for six months. He ended up virtually paralysed with a jejenal feeding tube as he was constantly vomiting and losing weight ridiculously fast. Our neurologist told us, on three separate occasions, to take him home and let him starve to death as he probably had dome dreadful neurological condition and his body was shutting down. We ignored her and kept fighting for our son - seeking second opinions left, right and centre. He started taking Sinemet, a drug for Parkinson’s Disease which gelps the signals from the brain to travel down the nerves more quickly. Once we got to a high enough dose, the vomiting stopped and his brain and body began to switch on again. We saw a top Childrens neurologist in London who organised scans etc. Parkinson’s Disease was found in my son’s brain but the neuro said, at 10, he was too young to have idiopathic Parkinsons. Nerve conduction studies showed no signals in his legs and very slow signals in his arms. He diagnosed CIPD and thinks the Parkinsons signs are also linked as he has seen thus caused by inflammation before. My son started on IVIg in November 2013 and the difference has been remarkable. He can now yes birth hands again and after his last dose 2 weeks ago has begun to stand in his standing frame for 35 mins rather than 10. My issue at the moment is sleep! He is screaming out every 1/2 hour - 1 hour. He sounds like he’s in pain but he is generally still fast asleep when we get to him. He has never complained if pain in the past and if we wake him during one of these episodes, he says he’s not in pain. Is this a usual side effect of CIPD or IVIg? Myself and my husband are exhausted but my son seems absolutely fine during the day! Any input would be much appreciated as we’re so new to thus condition.
Sorry for all the spelling mistakes - should have checked before I posted!
Welcome. So sorry that your little boy has been through all that and very happy to know he's getting better. IVIG usually makes me sleepy, Sleep disorders are not uncommon with neurological disorders. A sleep study may help. A neurological pulmonary doctor did my study. They are more specialized than pulmonary doctors. Best wishes to your family.