Thank God for Little Sister Syndrome

Discussion in 'The Watercooler' started by susiestar, Dec 21, 2013.

  1. susiestar

    susiestar Roll With It

    Jess is both blessed and cursed with what my mom and I always called Little Sister Syndrome. Guys seem to very naturally think of us as their little sisters. It happened to my mom in high school and college, to me, and thankfully now to Jess. It is late but she just came back from getting dinner from the pizza place next door to us. I was about to go look for her because she was gone a few minutes. I thought maybe they were runninglate and she had to wait. That wasn't it. She lost time while standing outside. this means a seizure and the neighbor guy who found her and checked on her said he saw her standing in the same spot when he went to put his laundry in and five min later she was still there, holding the food. He knows her because he ran off a couple of guys who were hitting on her in the laundry a few mos back. Thankfully he is a nice guy and henoticed her. He walked her back and made sure she got in okay.

    We still cannot get a doctor to pay attention or care. I have zero clue HOW she will ever build a life. I am so scared for her, but we HAVE to let her go and do things. She is strongly independent natured and tried to be sensible, but she is also 18 years old. She is currently volunteering backstage at the community theater and loves it, and she wants a job but how do you do that when you just stop and stare for up to five minutes at a time (one the clock five min, not I think five min went past but it is only 90 seconds really) and you have many very short seizures also?

    We pursued treatment for conversion including biofeedback, therapy, etc.... The tdocs other than the neuropsychologist (who flat out REFUSED testing saying her only problem was being coddled) have flat out said they see zero signs of conversion, that she has dealt well with the abuse from Wiz, is dealing with the koi wtih gfgbro well, and that the 'spells' are seizures that the docs simply have not been able to observe yet.

    A few years ago she was on lamictal and it helped greatly. If it was conversion, seizure medications would not help. The medication had to be stopped because it started to make her vomit. The doctor tried depakote but she gained 20 pounds in under 3 weeks so it had to be stopped. We had referrals to several neuros again during that time, but they refused to see her saying it was conversion. The doctor then disappeared who knows where, just closed his practice in 2 locations and turned the phone off. This seems to be standard when you want to move or change yoru practice, at least here. We have seen other docs since, but they are not willing to rx and they stick to conversion because that is what the pediatrican said. The neuros we have seen have admitted that many seizure disorders are not ever caught on tests but diagnosis'd by parent reports, but they won't take ours as true since the pediatrician here put info in her file back when she was 12 saying all her problems were anxiety related and conversion. heck, she even wrote strep throat and allergies off to that and refused to treat them. But her word is still the rule.

    Parents on epilepsy boards have been great in affirming that this is probably seizure related esp since we have done the other stuff we were asked to do. I just cannot figure out how to help my baby and my heart is hurtng so bad and I am so scared for her. I am the queen of persistence with medical stuff, heck, I got Wiz into residential when medicare (our insurance) didn't pay for that ever, and they paid evry penny. I found lacements for him later even though we did something different, I still got the option for him. But I cannot seem to find anyone to help my daughter. The read her file and do a short eeg and then write her off.. Yes, we had 2 eegs that were 5 days each. But both times we had LONG periods of time hwen the leads were on wrong and were giving garbage, screens that looked like a 2yo just scribbled on them. Calling to alert the nurses and eeg techs resulted in up to 8 HOURS of wait before anyone bothered to look at the results, results that were supposed to be monitored by a person 24 hours a day. I even found in the records where computer alerts that there were problems were turned off and ignored. On 2 of these occasions at the last eeg, she was having problems and I called from the floor nurse up the chain to the hospital admin's office to get someone to look at them. They could have caught thigns if it was working correctly because she was having seizures then. I could see it and even the floor nurse noted three of what she said looked like absence seizures but were over 60 seconds. But no one would respond to fix the leads. (J did NOT pull leads loose, she was amazingly good with them according to everyone from the aides to the doctors, but over a week they come loose now and then. That is why they are supposed to be checked and have computer alerts.

    Iknow you have heard this, but I am again so scared and frustrated. Anything could have happened to her standing thre in the parkign lot at midnight in the cold. ANYTHING. But I cannot chain her to the house and she feels a real NEED for independence. It is about a 30 second walk to the pizza place, closer than the laundry even, so it isn't that big a thing to want to do alone.

    I am SO SO SO thankful for Little Sis Syndrome, because otherwise the man could have done anything to her. Anything. I don't know how to balance this. I really don't.

    This is mostly a vent, because I know you all understand.
  2. Hound dog

    Hound dog Nana's are Beautiful

    Susie, a honestly good neuro needs to be found/stumbled upon, which I don't think is happening for Jess yet.

    Travis has atypical absence seizures. So atypical that both really good neuros he has seen are left wondering if perhaps it triggers an autistic zoning out episode because while he does have the typical version, he also has ones that last far too long for a typical absence seizure. Both docs admit to me they're not sure what is going on with the longer version because he is the only patient they've ever seen it in.

    His EEG was seriously off the charts......and alarmed the doctor because it showed major seizure activity that was continuous during the entire testing although there were no outward symptoms at all. doctor couldn't explain it because in all his years of practice he'd never seen such a thing or even heard of such a thing. He sent the results out to several top notch neuros around the state and they also had never seen anything like it. A very strong dose of carbatrol returns his EEG to somewhat normal. But even then? If it weren't for the test itself we'd not really have known it was working. Some of the really weird off the wall behavior some of these seizures caused stopped (thankfully as that is what originally brought me to the cd board all those years ago) but otherwise? Not so much.

    I will say if neuro who diagnosed the epilepsy hadn't had the set up he did in his private office........we might have had to wait much longer for answers in that area. But doctor ran the test and analyzed the results himself.

    Travis suffered severe prolonged oxygen deprivation both prior and after birth resulting in significant brain damage. He just should not be able to do any of the things he does, most certainly on the level that he does them, physically or mentally. While that is both miraculous and wonderful, it doesn't mean that his brain in any way functions normally because it just plain doesn't. I will walk out on any neuro who can't seem to grasp that concept as it shows their ignorance. Travis is unique. He is not even remotely a textbook case in any of his dxes. The two good neuros he's had truly enjoyed him as a patient as they learned as much or more than they taught us about him. I know the one in cincy was upset when Travis aged out of his pediatric practice.

    That said........

    My grandma used to say that special people have guardian angels to protect them from harm. You call it little sister syndrome. I think it is the same thing. I'm glad this boy listened to his heart and stepped up to help Jess when she needed it.

    I do understand the fine line you walk with Jess and the worry it causes. I pray that you both receive the answers as to what is going on with her. I do have a feeling that that time is coming in the not so distant future. It may not solve the issue Jess faces, but will at least give you understanding. I'd given up hope of ever understanding what was going on with Travis.......and then just one incident made years and years of total mystery fall neatly into place.

    I know Travis has a guardian angel. He keeps him terribly busy. It was around Jess' age that I learned to just let go and let Travis be Travis and live his life. It might be a short life, it might be a long life, regardless I want it to be as full a life as possible. Along the way I learned to stop being afraid for him. It is what it is. I'm not quite sure how that came about, but it gave me a new peace.

  3. susiestar

    susiestar Roll With It

    I am praying for that one good doctor. Hard. I think the guardian angel sent this man and others that have helped her in the past. We are working on getting her involved with more things though it is difficult due to the level of pain. Her seizures seem to be related to the muscle spasms at least to those of us who see her behavior on a regular basis. On days when she is having lots of spells or whatever they are, she also has muscles that turn to rocks with zero provocation. In her hands they can pull her hand all the way backward so the top of the hand is trying to touch her arm. Sometimes her shoulders and neck muscles are just hard and sometimes they try to bend her over either forward or backward. The neuros all tried to tell me that seizures cannot cause those spasms but really? In many types of seizure disorders there are abnormal muscle movements. How on earth can they say that seizures cannot cause muscle movements/spasms.

    It is totally ridiculous and ignorant and just plain incorrect. One refused to see us again because I brought in some medical books (textbooks for doctors, NOT home health books) and a journal article about how often the parents see the seizure behavior and it is not caught on eegs at all but treatment with anti-seizure medications should still be trialed because the parents are almost always right. He really HATED seeing that article because HE was the frimpin' author and had already told me that parent info is 'notoriously unreliable and wrong'. The article was a few years old, but widely respected and published in a major medical journal.

    Having had health problems similar to hers since I was 13, I understand lettng her go and do things. I reallly try to push her to do things, but also have to watch to keep her outo f some situations. On days with lots of spells, she has serious kepto tendencies. This very much can be seizure related according to journal articles and other parents, so I don't treat it so much as shoplifting and bad behavior but as a medical issue. She has learned to recognize the urges and she will say something to me. i usually notice before or as she notices, and at those times I just stic close to her to talk her through the impulses. It has really damaged her self esteem though. She has never wanted t be the kid who doesn't follow the rules, just part of who she is. So this is really really against her nature and that is part of what made me look to see if abnormal brain activity could be a factor. The rest of the world won't recognize it, so I do what I can to protect her as I teach her to cope with the issue.

    Thanks for the reassurances and info. It isn't terribly hard to let her get involved with groups because she instantly becomes a pet of the people in the group. She is the youngest at the theater group and they adore her. They did a Dirty Santa thing last night and one lady brought in a pair of medication heeled boots (designer!) that she didn't wear anymore. She directed Jess to them after making sure that they were Jess' size. It was fun to see how thrilled Jess was with them. This happens a lot in groups. of course she does nice things for them also. She baked for them about 3 times a week, and she asked me to stitch a simple pattern and make it into an ornament for each of them. It was a simple poinsetta and I used cardstock and paint sample cards so they were not expensive. She was so excited to pass them along.
  4. Liahona

    Liahona Active Member

    Jess sounds wonderful. Out of all the dr we've been to the neurologist was the most openly dismissive of me. I hope you find a good dr soon.
  5. pasajes4

    pasajes4 Well-Known Member

    She sounds like a lovely young woman who very much wants to live a productive life. I hope that someone will get to the bottom of her issue soon. It is very frustrating to watch those we love suffer.