I tried to schedule a visit to a barn that does theraputic riding while we are in town for the medical appointments. Not to ride but just to visit, lots of horses, big and small and barn critters. She completly fell apart when I told her. It was going to be a surprise but she insisted on knowing so I told her. Did not go over well. She has told the doctors she wants her life back and wants to ride so I really thought she would be okay with visitng. She just said she is not ready. I feel like we have a long way to go still.

Just in case you wanted another update...my dd ended up having 8 blood patches total, one in the lumbar region, 5 in her thoracic and 2 in her cervical spine. She ended up having 5 separate procedures, hospitalized after each time. Her relief never lasted more then 48 hours. It's been a very long few months. They still do not know if she has or had a spinal fluid leak. At this point we are moving forward with decompression surgery for the Chiari. It has been re-scheduled for Feb. 20th. We are back at Stanford tonight for neuropsych testing in the morning and we also have a new pain management doctor on her team. They are setting up surgery with everyone involved, the surgeon has been waiting until he was not going to be out of town for a period of time as he wants to be there for her, the pain management team, child life and her pain psychology doctor are all involved. Let's hope it happens this time. I think she is less scared of the anesthesia now that she's had it 5 times. She is becoming quite the advocate for herself, knowing exactly what she needs and she will ask for it. They also have confirmed PTSS, still not sure she meets the medical criteria for PTSD but she does have symptoms of it if not the full disorder. She is still a long way away from being able to be around horses, that seems to be getting harder the longer she is away from them. ); She has pretty much been in bed since July with only limited outings and time up. I am so ready to move forward.

Yes, a spinal fluid leak causes a spinal headache but it does change over time, the longer you have been leaking. They think she has had a slow leak for a long time from a bone spur (osteophyte) in her thoracic spine that I am assuming formed after the accident where she had the TBI. She has been unable to really function since the end of June so this is the first time in awhile that we have seen positive results from any procedure, therapy and/or medication. There is a very good video on spinal headaches on YouTube called the Mystery Headache from her doctor at Stanford if you ever want to watch it. I am glad you are feeling better. She has had two epidural patches to try and fix the leak (one blood and one glue) and she is scheduled for another patch in Mid-December. Hopefully she will continue to improve and she won't need it and then we can deal with the Chiari. The interesting thing is that a spinal fluid leak can also cause acquired Chiari but her herniation is now at 6-7 mm so I presume she will still have to have the decompression surgery once the leak is resolved. Oh, and the CSF leak specialist is also pretty sure she does have Ehlers-Danlos Syndrome. Yes, long post. Sorry..this has been ongoing for a very long time! Thank you for the info. I don't know what EDMR is but I will look into in. So far pain psychology and biofeedback and really helped her.

Anyone want another update? The surgery never happened, October was a very long month! I was really praying for things all month and literally a weeks prior I recieved an emial from her NS that the doctor that did her epidurla blood patch in August found out that surgery had been scheduled and he wanted our primission to do another epidural patch but with a fibrin glue this time. He felt that she had all the symtpoms of a spinal fluid leak even though she did not really respond to the first patch. I told them that I would be open to it but I wouldn't postpone surgery. About two weeks before surgery they did the patch. She felt a difference in her headaches within a few hours. Long story short, we went home and wihtin a few days ended up back in the ER with what we thought was rebound high (brain) pressure. They admitted her and she spent four days there. They put her a trial of a medicine called diamox which stops the body from producing CSF. The thought it if the leak was fixed, then you can go into rebound high pressure becuse you know have too much CSF. She was released one week before the surgery. Had a few good days and then tanked again. Stopped the meds and felt better. Went to her preop, she said she felt pretty good and the NS and the other doctor wanted her to wait since this was the first time we had seen any kind of change in symptoms. So, we went home. The last four weeks has been very up and down and not really clear about what was happening so we scheduled another epidural path for mid-December. Sometime last week she started feeling every better with her symptoms being less orthastatic. So, we will see how the next few weeks go and surgery is still on the table but more then likely for January. They have to be sure the spinal fluid leak is completely resolved. So not only does the kid have the TBI and post concussive and then the Chiari but now the spinal fluid leak as well and they confirmed that although they are not sure she meets the diagnosis criteria for PTSD, she does have many symptoms of it. We just did an intensive week of pain psychology with biofeedback and that went really well so slowly they are figuring things out. I am so confident in this team of doctors at Stanford. I finally feel like someone gets it and they are so cautious about doing the wrong thing and really taking their time to help figure this out. She is one complex kid but they got this.

I actually looked at the application last night. It took me while to figure out everything she has been diagnosed with, not sure if I should list everything or just the major one's. Also, really need to do some research on what the dog would be for, that is one of the questions and it's fairly specific about what it can't be used for...doing some reading on this though...

We actually visited them back in March of this year. She was in LOVE! We went with our homeschool group and everyone was amazed at how interactive she was and how happy she was that day! It was quite the eye opener for me. I haven't been sure she would qualify for one though either. I will have to look into this more. There is actually one not far from the hospital where she is having the surgery done. I had no idea I could request it! I have to call Child Life to schedule a hospital tour so I will ask about it. Since the hospital is over 3 hours away from us I am not expecting her to get many visitors and I think that is going to be hard so I keep thinking about the dogs...I know they would cheer her up. I have also thought about requesting a wish for her. I contacted Kids Wish Network and have the paperwork but I haven't talked to her doctor yet. I just don't know again if she would qualify. I asked her what she would wish for (since it's part of the paperwork) and she said a makeover and/or shopping. This kid just desperately wants to feel better about herself. My heart just hurts for her. Anyways...thank you for all the support. I will put in the request tomorrow.

Absolutely. I think a dog would be great for her. It is something we have talked about. We do have five cats, despite what my name is....and she does get a lot of comfort from them at the moment. I am really hoping we might meet a therapy dog while at the hospital.

unfortunetely the horse was placed with a rescue back in March. We really didn't have much choice. And its really a long story but she needed to be out of that barn. She has still be able to see him and he was just placed in a new home. The women that adopted him has been talking with both of us, sending us pictures and my dd even offered her some of tack. We are hoping to take DD out to see him before surgery. I think in the end it worked out, as she will still see him and the women who has him is so respectful of her relationship with him and loves that he came from a loving home. She does want to continue riding but she is being realistic and hoping it can happen in a few years when she is healed and strong. Her surgeon already told her she could continue riding. I agree, it's not all about the riding and when she is strong enough and wants to see or help around horses, she can do that too.

Thank you. They will actually be doing three things during the surgery, taking a small piece of her skull out of the back, opening her dura and cleaning up any scar tissue in the back of the brain as well as placing a synthetic patch in to close the dura up and then shaving down her C1. Hopefully this will provide more space and return her CSF flow back to normal. They anticipate a 5-7 day hospital stay as she is so compromised but the surgeon is very particular about how he is proceeding, we have had to wait because he's been out of town and he wont do surgery unless he's in town for a few weeks after. He also is having the pain management team invovled and child life team readily available so hopefully she will be okay.

Just wanted to update that my DD will be having brain surgery on October 26th. Please keep her in your thougths and prayers. She is extremely scared and nervous. It has been a very long road to end up at this point....but we are reamining hopeful that things will improve. As much as we are scared there is no way we can't proceed. She is almost completely bed bound at this point with all her symptoms. We finally got her to bathe this weekend and the process of bathing, washing her hair and combing through it took about 5 hours because of all the breaks she needed. She is just so physically compromised at this point and the dizziness with visual changes is getting worse. :grouphug: Thank you all for allowing me to vent and get support through out this whole process...it's been most helpful to have a place where I can share my fears and frustrations.

She is seeing a nuerosurgeon. We are trying to figure things out. I have a long post about it from over a year ago and these were the latest results. She does have Chiari which we found after a traumatic brain injury which never seemed to get better. Her primary doctor described it as pressure pushing the spine forward, I guess. I was wondering what might be causing the pressure. I guess it's a hard question to answer and we have a follow up on Tuesday so I will know for sure but its a long weekend and I was just trying to understand what might be coming.

Originally I was thinking that or a syrinx but I thought a tethered cord would be in the Lumbar area, this is C and T. But I don't know. Maybe it can be higher too? And, I think if it was a syrinx it would be in the center of the cord, not the front. I can't seem to find a direct answer anywhere and we see the NS on Tuesday. Her primary doctor described it as pressure. When you google it, that is the first thing that pops up but it says T and L areas, not C and T which makes it confusing.

i think it means that there is something in the front of the spinal cord putting pressure on it and thus displacing it or pushing on it? I am guessing it has to do with CSF but I'm not really sure or clear on that. It seems to large of an area to be anything but fluid.

Can someone explain what this means? Ventrally displaced cord from the level of C5 to T8? Thanks!

So I have been preoccupied with medical stuff going on and was never able to withdrawal her. Today is the first offical day of school with the charter. I spoke with the IEP coordinator and they are moving her to a home and hospital program. So, I told her I would be withdrawaling her tomorrow. They didn't seem to mind, none of the things that I was worried about happened, she seemed to understand. So now we start on a new adventure.

So my dd went in last Friday for her first procedure. She ended up having a CT Myelogram and 2 blood patches and spent the night in the hospital. She was on 12 hours bed rest after so not even getting out of bed to use the restroom, that was a new experience for her! Anyways, the CT was through a lumbar puncture and then they did find one area in her thoracic spine that was questionable for a CSF leak but it wasn't obvious. It was either a bulging disk or a cyst poking at her dura. The area was on the inside so it was a bit tricky to do the blood patch because they had to use a catheter to go around to the front side of her spine. Even though it wasn't an obvious leak they decided to patch it since they were in there and she was already sedated. ​Even though it didn't show an obvious leak they were still able to check her opening cerebrospinal fluid pressure, send some CSF to the lab and rule out a few things. However, it was quite a painful procedure for her and now she is not sure she wants to move forward with surgery which is the likely next step. On a positive note we were able to have one of the top three doctors really leading the field in CSF leaks available and in the room leading the procedure. We weren't quite sure it was going to happen because up until last month he couldn't even treat pediatrics. But, her neurosurgeon wanted him in there and he was! The whole procedure was 3 1/2 hours long and her NS was not performing the test (not his field) so having this expert on CSF leaks in the procedure and leading it was a huge blessing for me! Our next appointment in on the 6th, hoping surgery gets scheduled!!! Her journey is far from over, please keep her in your thoughts and prayers! :grouphug:​

Can you get Ronit Bird on anything besides an Apple device? I remember looking at this a long time ago and it seemed the only way to access the program was through Apple.

I would love to be added to the group. Thanks

Your going to make me cry. It's been a long time coming, I think I have been so consumed by all the medical in the past year that I just kept going with the school because I was overwhelmed but I am tired of feeling down and I know she is to. I am tired of explaining and justifying and feeling anxious. Thank you. I needed to hear these things. My heart was already leaning there but my head needed it too!

Thank you. I will order it on my kindle. She is not so much interested in medical but she is trying to take control and understand her situation. She doesn't want things done to her, she wants to be part of the process, including decisions about which medications to try and so on. Decisions about surgery were equally in her power and she did a lot of research learning about what they would do, having conversations with the doctor and so on.This is isn't something typical kids have to do but I don't see why it doesn't count as education. She is learning. Its real life learning.

Oh my gosh, thank you. I feel like this is what my heart is telling me I need to do. We are in California. I was told I would not have to file privately until October so I guess I would just unenroll her now since she is on an extended year and then just ask for her records and start keeping track of things. Honestly, it is adding so much stress to both of us because I keep thinking she has to have the surgery now so that she can be "healed" by September and it's just putting unnecessary stress on both of us. She was taken off school last May so technically she has already missed about 14 months of school.

My kids have been with our charter school for the past 6 years since I pulled them out of public school. I have two daughters, one going into 9th and one into 10th. I am considering pulling them both from the charter school but would do so for my 9th now and my 10th after the 1st of the year. A little background info...my dd was injured riding a horse about 20 month ago but has been struggling for the past several years due to some medical issues which are just getting figured out. She will more then likely be having brain surgery this month. She will have a long recovery and possibily go into a pain program after that. The hospital is about 3 hours from us. She was placed on an IEP last November follwing neuropysch testing and she has only been released to do 7.5 hours of school a week but she is not even close to meeting that. I am waiting to see if the neurosurgeon will take her out of school again completely. She has access to a computer, counseling and some academic support though the charter school but most of the time even getting her there is an issue so we really don't access to much of the services. I feell like i am failing every time I speak with them because is not doing what they think she should be doing. At this point her academic roster really consists of Math, English and dance. She had to stop the dance because she physically couldn't do it anymore. Everytime i push school, she ends up complety distraught and loosses more confidence because it feels like she just can't do it. On the other hand, she is doing other things, like a lot of research about her condition, medications and treatments. She also really likes to watch make up videos and will often practice on her hands while she is laying down. She also likes to help cook when she feels well enough and will watch videos before trying. So it would be incorporating things like math, science and history through these activities that she can do right now. She is on an extended year schedule so she should be doing what is on her rooster right now. I feel like if I go private with her that she might have a different outlook on school but I don't know how to make it all work. I am not wanting her to "unschool" but she just needs a different path right now as we tredge through these medical issues. If she were in the pain program, they do offer school and therapy and the charter school already said they didn't think they could count that she "their school". I don't want the charter getting in the way of particiapting in the pain program and I think they would disenroll her and put her in the home/hospital program which would mean she would be assinged a teacher from our local public school. If they are going to do that, I feel like it's a better option to just go private. I am guessing I would loose her IEP as I wouldn't need it? Counseling and testing (if needed) can be done through medical so I don't feell like she would be loosing anything. The biggest issue for me is that she is loosing confidence and it is adding to her stress and anxiety. I feel like if she is not ready to start school at the end of the month, which I am pretty sure she wont be then she will not graduate on time and school is just becoming all the things she can't do. I want her school to be focused on what she can do and grow from there. Can I legally do this kind of school with her? Any help, websites, etc would be helpful...I have never thought of going private before. I also think my 10th grader would blossom this way but right now she is involved in their writing program as a mentor and I want her to be able to complete that course before I make any decisions with her. TIA!

Any thoughts on History Odyssey - Modern Level 2

That's a good point. I was thinking having a few options in hand just in case might be a good idea and I do have the Bridgeway Math book. Maybe an remdial English book? The IEP is for both really, some academic problems stemming from the medical issues. Mostly delays in Executive Functioning, Sensory Motor Integration and lots of visual issues right now. I like the idea actually of her reading living books and those being more travel friendly and/or available on a device if necessary. That in addition to some documentaries might be a good fit for her. Yes, I forgot about Foreign Language, thank you.

Once again school is going to start and I almost completely unprepared so I am asking for some suggestions... The biggest issue right now is that my 9th grader is going to be having major surgery in the next few weeks, I don't have an extact date yet. Recovery will be about 6 weeks so I really don't know where she will be when school starts. It is also possible that after surgery she could enter into a pain program which would mean we would be living near the hospital during the week for up to 12 weeks..which is about 3 hours away from home. This would impact both kids so I need things that will be easy to access, not a lot of books or supplies so that if my oldest is with us she can still do school or if she is with someone else, again she can still do school. Online classes are an option just not live ones. Here is what I have so far for my 10th grader: Math and English online through Acellus Biology - Online AYOP VHG History - needs World History Dance Class and Mentor for a writing class through our Charter School - both these meet on Fridays so she will have to be home on Fridays to attend both She is also an intern for an online gaming website and assignments are sporadic She is also interested in learning to play the Ukulele I would love for her to be able to volunteer at the hospital where we could be staying but she would have to be 16 and she wont turn 16 until December and I suspect will be there prior to that. She is very interested in the medical field so this could be a great resource and training for her if I could get them to allow it while we are there. What other academics am I missing? Ideas for History without a lot of books in case of travel? She loves History and I would love something that really engages her. She is also very interested in politics. We did Notgross for 8th and she was bored. For my 9th grader, where do I even start? She has an IEP and has been out of school for the most part for the past year. I have no idea if she will be ready and able to do work. If she is put on a home/hospital program do they provide work or do they go with what I have? If she is in the pain program I know they do school there but I have no idea again if it's what I pick out or they do? I do have the Bridgeway Remedial Math book for her right now which I think is a good fit but she just hasn't really been able to do any work. I was also thinking of some Acellus courses as they offer the special education classes and that way if she is at the hospital she could still have access to work if she felt good.