In recent posts, I’ve told you about Lauren’s sudden onset of sleep seizures and rapid decline in her physical strength. After a week in the neurological hospital, she was released to go home and complete a strong dose of antibiotics with plans to schedule an adenoidectomy and sleep study. During these past couple of weeks, she has had some slow progress and a significant reduction in the number of seizures each night (from 10-20 to 3-6 each night now). Her daytime strength has improved little by little and she is receiving therapy at home every day.
On Thursday, she suddenly had another bad day. After only 3 episodes that night, Carrie was expecting her to have a great day. However, when she awoke that morning, she was so weak she couldn’t even sit up. This puzzling situation really discouraged Carrie. Lauren got a little better through the day, and was walking a bit by afternoon, but it’s very hard to figure out what is going on when her condition fluctuates so much with no apparent reason.
Additionally, the ENT surgeon has backed off from wanting to do the adenoidectomy. Lauren’s disorder puts her at very high risk for anesthesia, and he feels the risk is not worth the possible benefit. He is convinced her adenoids are not the cause of the problem (night seizures). He feels just getting the swelling and infection cleared from her sinuses will help her breathe and make her healthy, and the seizures are not related.
I was watching an Oprah episode last week where they showed videos of people having night terrors, and they really resembled what Lauren does at night. Crying out, gasping, shaking, sitting up wide eyed, kicking and jerking, and going into a fetal position are similar to Lauren’s symptoms. However, Lauren can’t tell us what is going on in her little mind, and so diagnosis is very difficult. Add the fact that her disorder is so extremely rare and no doctors have any expertise, and it’s nearly impossible.
Summarily, we still have no good answers, and no end in sight to Lauren’s current condition. Carrie and Brian are holding up, but they sure appreciate your continuing prayers.
When we were reading so many blogs of other Sanfilippo children, I don’t remember any one saying anything about night terrors or seizures. It doesn’t seem to be connected with that. I sure wish that they could find the cause; I know you do,too.
The best thing that any of the blog readers can do is pray for a diagnosis, and treatment. I dread to ask every day, “How many seizures last night?” Brian and Carrie are getting so worn out.
Night terrors are very frightening. Michelle had them along with sleep walking when she was one and two. She would scream, cry, shake all over while running through the house each night, all night. She also had seizures with the night terrors. She would seem tired and unable to think clearly the next day. She didn’t remember anything the next day. The doctors say this is normal for night terrors.
I’m glad she outgrew it, but she still kicks a lot in her sleep.
I continue praying for everyone. Brian and Carrie must be so tired. Sending hugs.
I meant to say she didn’t remember the night terrors, nightmares or sleepwalking.
Any update?
Lauren is scheduled for an MRI and tubes in her ears on Thursday the 17th. They only have to mildly sedate her for that.
Carrie has been trying a weighted blanket for the past few nights. The jury is still out, but she had a better night last night and even stood herself up this morning. (She immediately fell again, but she seems stronger today.)
Fortunately, Carrie has a hab attendant helping her out on week days, but it’s still wearing on her to see Lauren needing such intense assistance for every simple movement.
Thinking of Lauren and the Reeds tonight and tomorrow.
Lauren did very well during her procedure this morning. They drained fluid and put tubes in her ears. They took a look at her sinuses with an MRI. Her adenoids are normal size, but her sinuses are very swollen. The doctor said there is nothing surgery would help. Carrie will take her to an allergist tomorrow.
Bottom line, still no clear diagnosis of her current problems nor effective treatment ideas.
Brian said she’s doing better the past couple of days.
They are using a special nasal spray and “breathe right” nasal strips so Lauren’s sleeping a little better. She’s got enough energy now during the day that she’s getting into things. It’s a wonderful day when Lauren can get into mischief!
Hi Donna! Our hearts go out to all of you with Lauren’s up’s and down’s. We hope things have leveled out again? We pray for you all.
We’ve sure missed your visits over at our blog. I’ve been concerned about your absence. I pray that we have not been offensive in some way?
Lots of love to you,
Robyn for the Bowes Bunch