My daughter was born 4 months premature, as a result she has CP.
Some time before she was 5 months old, she had a cereral stroke.
She has poor balance, and is non verbal except for sounds. She is ataxic,
has low vision(ROP) had ATNR and scoliousis.( last two resolved).
She had her first seizure at 5 months, and at that time she weighed a little over 3 #. She was off Tegratol for two years when I started to notice what I called shudders, the EEG showed seizure activity and now she is on Depakote Sprinkle caps, 125MG 3x a day. We recently found a catarach
(spelling?) She also has an immune deficency to the point that she is home-bound schooled. The Neuro thinks that all of her different symthoms,
aside from the obvious CP, looks like Marineseo Sjogren, which I have found is also called Sicca Sjogren Syndrome. I have not been able to find out anything specific on this syndrome. Everything is about Sjogren Syndrome only and this does not have the symtoms that HE attributed to the condition. Oh yes, she is also haveing very high blood pressures(113/110) and she has swelling in her feet and her ears turn beat red for no reason(unless it is her BP). Can you tell me what Sicca Sjogren is? I must tell you that even though her prognosis was NIL at five months
and I was told she would be a veggie, she is walking, unaided, can tumble and finaslly jump on her trampoline(still a work in progress). She has her own computer and uses it, in Kindergarten and doing 1st grade work. In other words, she is a wonder of therapy and a lot of love, Sorry, just had to brag. She has come so very far and already has had one set-back and had to relearn evrything, I need to keep abreast of everything medically related to her in order to help her to keep growing. Any help you can give would really be appreciated....Thanks....Barb
It sounds like you have done a great job with your daughter. Just a few questions before I give you some information about Sjogren syndrome. What was the etiology of the infarct and where was it located in the brain? Do they know what caused the cataract? What type of immune deficiency does your daughter have? How bad was the IVH that induced CP? All babies have a ATNF, it is abnormal if it persists, but it is a normal reflex. Scoliosis usually does not resolve, only stops progressing, how was the diagnosis of scoliosis made? What is the source of the extreme hypertension in your daughter? The disease of Sjogren syndrome is extremely rare in children. It occurs primarily in teen-age girls, and manifests in a primary form or a forerunner of other collagen disorders or mixed connective tissue disease. The usual laboratory findings include hypergammaglobulinemia, positive antinuclear antibody, and rheumatoid factor. Confirmation of the diagnosis is obtained by salivary gland biopsy demonstrating focal lymphatic infiltration, sialograms, or salivary scintiphotography. I am assumig that these were positive and the diagnosis is firm. Childhhood Sjogren syndrome has not been associated with either CNS or peripheral nervous system impairment. Although it likely hasn't been approved for children, there has been FDA approval of a new medication for Sjogren's syndrome, Salagen. Let us know if we can be of further sevice.
CCF Neuro:Pediatrics MD, RPS
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