I totally understand that feeling. Yes, we have definately had some steps forward and still a lot of steps backward but we just keep trying to put one foot in front of the other. But, the tutor has really helped because it helps her to be accountable to someone else and takes a bit of the pressure off of me. She actually was doing fractions last week! We spent so much time in division I didn't think she would move forward. She is also doing more therapy now, including speech therapy for cognitive rehab and they do work on memory which has been great and then also CBTi which is cognitive behavioral therapy, insomnia. Plus pain psychology working through living with chronic pain. We still have some medical things to overcome and more procedures in her future but we will get there. We also had a cat diagnosed with diabeties (because you know we needed more medical stuff in our life) but it has been the best thing for her. Don't know if I posted this or not but as soon as the vet said he needed injections, my daughter took the initiative and learned how to do it. She also checks his blood levels. She now talks about being vet tech, first time in a long time she has thought about her future. Day by day, sometimes hour by hour but this year my focus is on hope.

Yes, I have an 20 year old African Grey parrot, but that is a general pic not her

Hey there! I just wanted to come back and say we are having some success with school now! I hired a turor that comes to the house twice a week and that has been the best thing for both of us! She is doing modified school but multiple subjects and we are working on consistency and moving forward. She did just have her shunt placed last month and so far we have had a few issues, including an infection and the headaches are still there but they were reduced for the first week so I will remain hopeful. She is also doing an extended year so we will continue just plugging along, especially since she missed for her recent surgery.

Because I will have even less say in what she is learning and what materials are used. We sometimes are not home and sometimes we do school at all different hours which is dependent on her health so I feel like having someone come to the house might just be harder but we may end up going that direction if I can't get things together to have a successful year.

Sorry for the delay in getting back on, so much going on right now. I will try to answer a few questions that were asked She is with a charter school through the school district. We have been with them since we started homeschooling. I did leave at one point a few years ago , or actually they pretty much kicked her out and I tried to homeschool her by my self but I found it was quite challenging in dealing with the school side of things and the medical and I felt she did better with the charter then with me. She does have an IEP. I am not sure it does any good. She has had neuropsych testing twice, once through the district and once with a brain trauma specialist through the medical center. On the medical one she was diagnosed with a mild neurocognitive disorder. There are only two degrees of a neurocognitive disorder, mild and major. Major is dementia. She also had a speech evaluation and was dxed with a cognitive communication deficit. Her scores in varies categories in testing were quite low. I don't honestly she get the whole LA thing, she is not at grade level math and that is not an issue so not clear on why LA is. She missed almost the whole school year last year and they added 2 more years to her high school plan to make up the credits. I am on the verge of pulling her and just doing home and hospital but I guess I still like the idea of more flexibility in choosing materials over the public school doing it. There is a program through her medical center that helps with schools but they have told me to go the home hospital route that the charter doesn't meet her needs. I am waiting for the charter to write into the IEP that she needs a laptop and I was hoping to do neuropsych testing again this year before I switched as we wanted to compare her results from last year before surgery to see if things have improved at all. I am still on the fence about switching but if they can't work with me then I will have to. I feel like that's what the school wants. One of her IEP goals is to do 60% of her work for 10 days straight. She hasn't met that goal yet and this is her third year on that goal. It's kind of ridiculous. If we stay with the charter I will ask the school advocate through medical to at least be on the phone during the IEP meeting this time. I have thought about counseling, she goes to a pan counselor but they talk about everything and I do have time with her as well but it's more limited and not focused on me per se. I do think the surgery will help, it's been in discussion for over a year but I am not quite ready to take that on just yet. I do suspect it will be in either Oct or Nov. though. I will look at the writing book again.

Well I still don't have this all figured out and we got more bad news, or maybe it's good news if it will help her. But she has to have another surgery. She is a complicated case and they now know that despite her high brain pressure she still has a CSF spinal leak, typically you don't have both. But, she does. I have math figured out and I ordered the grammar.. I would really like a video based program for Science and I still need LA. All the of the suggestions were denied by the school as they are not age appropriate for her which I don't get because she is so far behind. Depending on this surgery we may just have to go the home/hospital route.

Wow....thank you everyone for all the suggestions. It has been a bad day and I need to try and catch up and read the suggestions. Quickly though I saw someone ask how old she is now, she is 16. We are currently still trying to work with our charter school which places some restrictions on what i can and can't do. I did take her out a few years ago and try to just go the route by myself but I found I was very overwhelmed and it was too easy to just not do work depending on what was going on. I find that she needs the accountability (to someone else) and also needs to know she has a purpose in life. I like the idea of the current events just not sure I can put that all together to make it work for the charter. I have not read all the comments but I will come back and read them. Thank you again, I truly appreciate all the help! And, thank you for the science link I will check that out. M

Thank you. I will take a look at all those suggestions tonight. Review of...not sure...she hasn't consistently done school in two years so I am shooting in the dark here a bit. Review of maybe things she might have learned in middle school then we progress or go back depending on what she remembers or what she needs. I don't want to overwhelm her, I just want her thinking about school, feeling confident and trying to do something each day along with the therapy and appointments that still need to happen. Most of the time she is lying down in bed but due to seizures that started recently I want to focus more on workbooks then computer stuff.

I just looked at the LA program and that seems like a lot of teaching, I am looking for more review I guess at this point, some kind of small workbook she can work from, not sure that exists for writing. Going to do Easy Grammar Plus for grammar. Just something that keeps her learning and engaged each day is my goal, not new material right now. We are so hit and miss and doing school that I want her to feel confident again and more towards new material. I am not sure if that makes sense.

Originally yes, whiplash while riding a horse in 2013, 2nd degree TBI when she was thrown from a horse head first into a corral rail in 2014, that lead to a diagnosis of Chiari Malformation (where the back part of her brain descended into her spinal cord), then a CSF leak (multiple), and now pseudotumor cerebri (which is high brain pressure) but we think she still might have a CSF leak. Along with a slew of cognitive diagnosis. But, she also had double vision start out of the blue in 2012 even before the injuries so we have been struggling in one way or another for about 6 years now.

Hi, It's been a long time since i have been on, not sure if anyone would remember me. I have a 16 yo daughter who has had multiple brain injuries. We are going into her 11th year of High School but she has actually had 2 additional years of high school added so I have no idea what level that places her at but she is struggling. I need something for LA that has some writing and spelling. I don't need grammar. She really can't read books due to head pain but could possibly do audio books but she misses a large amount of school so I need something short and simple to just work on consistency and go over things. I also need an Earth Science and I am leaning towards that being video based with some small amount of work to follow up on video. We are in and out of the hospital for procedures, I don't really have the emotional energy to plan a curriculum so if there was something already written down that I could follow that would be helpful. We are on the verge of doing Home/Hospital but I want to give things a try before I move in that direction, the last few years of school have been almost non-existent due to treatments and pain. Any suggestions? I appreciate the help! M

It's been a while since I posted anything. I need help trying to figure out good curriculum resources for my 10th grader, with an IEP and ongoing medical procedures. Right now and last year she was doing Acellus online. Last year was so difficult and she barely got any school done. She was going through a lot of treatment. I was leaning towards the computer school again because it is easy to have with us wherever we are. She has done school at the hospital (three hours from our home) as well as school at the Ronald McDonald House and sometimes at home too. She has a lifting restriction so carrying a bunch of books doesn't work either which makes the computer handy. However, she isn't really learning. I can't follow what she is doing and although she likes the independent piece of it, I just feel it's not moving her forward, Right now she needs LA, Math, Science and History... Reading is beyond difficult, it physically makes her head hurt. She needs short, concise lessons to drive home the idea and then practice. Something I can check easily, I am often overwhelmed coordinating the medical and I need something relatively easy to follow. Grammar and spelling are her stronger areas. She needs things she can do lying down. She spends most of her time in bed. She likes movies, and documentaries but then I have to have something to follow up with those on to see that she retaining what she is watching. Math she is all over the place, we are going back to basics. Simple things are confusing to her and not making sense. I will probably get a tutor to work with her for math but looking for a simple program to follow. Computer is okay. She was doing around 5th grade last year which a lot was simple but some were harder. Right now she is trying decimals. She has had brain surgery and she has spinal fluid leaks which make it hard to stand up. Both conditions affect your cognitively and she has also had a TBI. We also know she has a mild neuro-cognitive disorder. She doesn't feel confident is school. Its all very overwhelming to her. I want to find work that she will enjoy that will give her confidence, build her memory and challenge her a bit. Any ideas? Science is Earth Science and History is World History xposted on HS board

Hi, It's been a while since I posted anything. I need help trying to figure out good curriculum resources for my 10th grader, with an IEP and ongoing medical procedures. Right now and last year she was doing Acellus online. Last year was so difficult and she barely got any school done. She was going through a lot of treatment. I was leaning towards the computer school again because it is easy to have with us wherever we are. She has done school at the hospital (three hours from our home) as well as school at the Ronald McDonald House and sometimes at home too. She has a lifting restriction so carrying a bunch of books doesn't work either which makes the computer handy. However, she isn't really learning. I can't follow what she is doing and although she likes the independent piece of it, I just feel it's not moving her forward, Right now she needs LA, Math, Science and History... Reading is beyond difficult, it physically makes her head hurt. She needs short, concise lessons to drive home the idea and then practice. Something I can check easily, I am often overwhelmed coordinating the medical and I need something relatively easy to follow. Grammar and spelling are her stronger areas. She needs things she can do lying down. She spends most of her time in bed. She likes movies, and documentaries but then I have to have something to follow up with those on to see that she retaining what she is watching. Math she is all over the place, we are going back to basics. Simple things are confusing to her and not making sense. I will probably get a tutor to work with her for math but looking for a simple program to follow. Computer is okay. She was doing around 5th grade last year which a lot was simple but some were harder. Right now she is trying decimals. She has had brain surgery and she has spinal fluid leaks which make it hard to stand up. Both conditions affect your cognitively and she has also had a TBI. We also know she has a mild neuro-cognitive disorder. She doesn't feel confident is school. Its all very overwhelming to her. I want to find work that she will enjoy that will give her confidence, build her memory and challenge her a bit. Any ideas? Science is Earth Science and History is World History xposted on Learning Challenges board

Thank you again for the additional stories. I am there, I am ready and open to trying it but she has been in and out of the ER and I haven't had a chance to go get it and talk to them. I was already headed in that direction and now with the most recent ER visits I know it's the right choice. She has been having some intense crazy leg pain/spasm/cramps/tingling that has been going on all week and lasting for hours. Saturday morning (in the ER) it went on for 6.5 hours straight. Nothing they gave her would stop it and nothing was putting her to sleep which is what they were hoping for. She was completely exhausted. She says it feels like spiders inside her legs. They started at 2:30 am while we were in the car (driving home from 1st ER, long story) and continued until 9am (different ER) when they finally injected her with haldol. She has now been asleep for 27.5 hours with the exception of about an hour around 1:30 am this morning when she got up and ate. I have been waking her up to talk to her and she is ok, just very drowsy from all the meds. Nothing they gave her would make these movements she was having stop. They had to put seizure pads all around the pad because she was thrashing around so much because she was so uncomfortable. She was having them in one arm too. Stanford said they thought they were parathesia and/or neuropathy and started her on gabapentin. The second ER said it was dystonic movements or a dystonic reaction. She eneded up getting an injection of benadryl, an injection of toradol and oral ativan and nothing worked until they gave her the haldol. By then she was exhausted. This only happens at night and usually she can do things to make them stop, like soak in the bath or move them around. We always thought it was like restless leg but they have lasted up to 4 hours sometimes when they start but prior to this week were only happening maybe once a month or so. 6.5 hours was the longest and nothing was helping. Now with her being in her arm too, it's changing. Really thinking it's a nerve thing. I want her off these crazy meds that are either giving her these issues and/or making her sleep for days on end. So done. So tired. I went over 24 hours with no sleep. 6 hours driving to one ER, 7 hours 1st ER (where she had surgery) and 5 hours at the local ER.

thank you for all the input and advice. I have the prescription and will be going down to talk with them. And, I do research everything the doctor recommends, prescription, treatment, procedure, surgery, it doesn't matter what it is. Initially, I think my reaction was maybe thinking of it as "end of life" option (I know its not but that's where my mind went) and I am past that and dealing with facts and what is best for her.

I was told this prescription would not have any psychoactive effect and that there would be no "high" And, thank you.

Thank you. We assume she has EDS as well but they don't think POTS but it has been a topic of conversation. Right now her florinef is not for the blood pressure but for brain pressure. I appreciate the comments about the cognitive side of it. That is huge for me. She was diagnosed with a mild neurocognitive disorder just before surgery so doing anything that would potentially erase or hinder any improvements the surgery had on her cognitively would be a huge red flag for me. I have started her on the lyrica yet but I am hoping this combo works and might solve things. My gut says there are more procedures coming, hoping it's not spinal surgery for a leak but we just have to wait it about before going there.

I could use some advice regarding cannabis oil for my 15 year old daughter who has been suffering with chronic pain for over two years now. Many people on the board have followed our journey from her concussions to her diagnosis of a CSF leak and Chiari. Her surgery for Chiari was 6 weeks ago. I didn't think I would be seeking advice about this topic, ever let along 6 weeks post op. This is a tough one for me. I don't want to do this. I don't want to be here but we are and I need to help her and I am trying to learn as much as I can to make the best decisions for her to heal and live her life. I am not in a place where judgement will help me, I just need facts and support to make these decisions. I do see improvements from her surgery, cognitively there is a huge difference. I have no regrets but it has not fixed everything. She is still having intense head pain and is still more prone to wanting to lie down. They are trying to get her to the 3 month post op mark before they make any more decisions to see if things improve. She is obviously still having low intracranial pressure and is on some meds that hep but not enough. In my opinion she is either still leaking CSF, or she has a low CSF volume issue that will resolve over time, or she is having some occipital neuralgia, at least those are my thoughts. Her pain doctor suggested cannabis oil a few weeks ago and I shot him down pretty quick. I didn't think we were there. They took her off all the narcotics from surgery and she is just really struggling as nothing touches this head pain/pressure especially at night. She often doesn't get relief until around 2am and then she is finally able to sleep. We have tried many, many things. The NS is not quite ready to try ON injections as she is still inflamed and healing from surgery. They just added Celebrex and Lyrica. The warnings about Lyrica made me re-think the cannabis oil. So after some back and forth discussion with her pain doctor and my daughter I decided to get a prescription. Now that I have it, I feel very overwhelmed again and kind of sick to my stomach honestly. The celebrex hasn't made any difference today and none of her other meds really do either, except florinef to help with her pressure but again it's just not enough. In his original email he said it would be cannabis extract containing 1:1 CBD to THC was the recommendation. The prescription says 20:1 cannabis tincture. I don't even know enough this to know if those are the same thing. So, I am reading and asking questions. I appreciate any and all judgement free advice. Thanks!

Thank you everyone! I am pretty much beyond the whole family thing, didn't really surprise me actually and I am going to be pursuing a divorce but I have waiting because one big thing on my shoulders at a time was enough and i didn't want to do that to her either. But, it wasn't about our marriage, it was about her and it had just come up in counseling the other day and so it was on my mind again. Anyways, lots of recovery and rehab to do and will see how things play out with intracranial hypotension and/or occipital neuralgia. The other thing I didn't share was right before surgery I got the neuropsych testing results she did in January back and they were not good. Her scores had declined even more from the year before when she was tested after the TBI. Her memory, executive functioning, fine motor, some were in the less then 1% for her age, very low. She was actually diagnosed with mild neurocognitive disorder just before surgery which really hit me hard. The surgeon is hopeful that once she feels better and as long as she wants to get better that those issues will improve, especially with the surgery being done and knowing how tight she was in there. It's so hard to see things like that on paper. I have no regrets in doing the surgery and the testing just put fuel to my fire that we just needed to get through it. A friend of mine came over to the house yesterday and said she already sees a difference in how she is talking, just forming sentences better and not frustrated. it was like before she had to think to talk, it didn't just happen. Now, it's just flowing more naturally. It makes me sad how much this whole thing really affected her. So, i have hope that these things can get better with time, and therapy. If she goes into the rehab program she would have access to water therapy, PT, OT, counseling, group counseling, family counseling, school (i think 2 or 3 hours a day with credentialed teachers), and I think accupuncture and massage if she wants it. I am not sure what else I should push for, if anything else is needed beyond that. The only thing that comes to mind is some kind of vision therapy for her but I am not sure if OT would cover some of that or not.

I feel like a HUGE weight has been lifted! That was a very long year!! :o

The surgery is done! She had the brain surgery on March 15th (two weeks ago) and did great! Spent 8 days in hospital, 2 in PICU. Surgeon was awesome as I knew he would be! She had some rough days starting around day 3 but they tweaked her meds and she started to do better. Came home on a lot of medicine but finally weaning off many of them. It did not seem to change her head pain/pressure so they are still looking at the cause of that, seems like intracranial hypotension so they put her on florenif to see if that helped. She was on IV fluids and caffeine pills in patient but now we are just trying the new meds. They have also considered doing nerve blocks for occipital neuralgia but they want to give her more time from the surgery for the inflammation to go down and see if the head pain lessons at all. Her recovery from surgery though is going great. Her neck feels pretty good and her stitches are already out! She does look better! She has more color, she is forming words better, she is more present and more social. She keeps telling me she loves me and thank you. She is just different and both her surgeon and her pain doctor have noticed a difference. It's kind of like a little light has come back on. So it didn't resolve all the issues but I am so happy it's over and I do feel it helped. She says she feels happy and not anxious any more. The surgeon did say her cerebellar tonsils were very impacted and down to the level of C1 which the MRI did not show, and they were not able to pulsate at all. She had lots of scar tissue as well which he cleaned up. He also mentioned her dura was quite thin (sort of what he expected with the worry about leaks). They did a repeat MRI before she left just to check for leaks and everything looked good. The hardest part of the process was that no one from my family came to see us in the hospital, not even her dad so this was all on my shoulders as it has been for quite a long time already. That was really tough on her. But the surgeon was so supportive, the entire Neuro team and the nurses were great. They even washed her hair before she left. The surgeon really wanted her to do things that she wasn't doing at home to make sure she could do them, even made her take a bath before he discharged her. Post op is in three weeks but things are moving in the right direction. She is more then likely going to go into an intense rehab program there soon. This will probably be my last update as this thread is quite long and we finally have answers. Just wanted to share some happy news with you all as you have been so supportive for this whole journey. Much love and hugs to you all! :001_smile:

Well true to the way this journey has been for us, surgery did not happen on the 20th of Feb. :sad: She got sick about a week from the date and since I didn't want to see surgery cancelled I took her to her primary just to see if there was anything they could do. He put her on antiobiotics and I honestly thought she was going to be fine. The anesthesthia team said no and cancelled it the Friday before surgery, we were scheduled to leave on Sunday. So frustrating. They said that the meds actually complicated things and she would need to have completed them and then wait another 10 days to be cleared. We are 5 days out on that now. Surgery has been re-re-scheduled for March 15th. Praying and hoping that this is the last time and nothing comes up for us. We are SO tired of waiting. :scared: :scared: She is on so much medication now and I just see things getting worse and it's just so hard to wait this out. I know it was the safest decision for her but this needs to happen soon.

I created a social group for other parents of chronically ill kids...come check it out! Parenting Children w/Chronic Illness Still working on setting it up though so bear with me.

Thank you everyone. I like the suggestion of some kind of support on here. We are out of town at the moment but let me get back to you about that. I have found that the FB groups have been instumental in me keeping my sanity and staying hopeful. She actually did neurospsych testing today and they confirmed PTSD. The NS wanted the testing done before surgery so it's one more boxed checked. Her double vision is worse now, her reflexes have started going haywire, her legs are now a brisk 3+ which they never used to be...it's just time. No dog yet. We live in an apartment with five cats so taking one another animal at the moment when we have been out of town so much for the medical appointments just hasn't been realistic. I am working on what is available to her while she is in the hospital.

The longer this goes on the less support I seem to get. I honeslty feel that the doctors and team have been the biggest support as well as some other moms I have met through FB groups of kids with medical issues. I feel like my life is changing too over time. I guess that's normal. I just think of all you often and wanted to say that we were finally moving forward with surgery again.