So I have been doing a lot of work on getting my dd into the right doctor and part of that has been from some other informational boards on FB that deal with these issues. I am more concerned then ever. I did finally get an appointment for dd with a neurosurgeon but its not until the end of February. I also contacted another NS that is about 2 hours away from us that is a specialist in CM and I found out that I can self refer her there. I am sending off her images tomorrow along with a letter. They are suppose to be getting her medical records. They want to review everything before they will make an appointment. They have also told me they can get her in before the other appointment. As I was writing the letter to the doctor I noticed a comment in her psycho educational report about the brain MRI she had in 2013. It was a comment I never saw. It said, "there is crowding at the level of the foramen magnum with very little CSF identified posterior to the cerebellum at the level of the foramen magnum, but no evidence of cerebellar tonsillar ectopia." That sounds to me like even 3 years ago they had evidence that her flow was compromised. I remember that appointment so well because they did the MRI due to the double vision, headache and pressure. And, yet the doctor made a comment on how many time I had looked at her file online, like I was a crazy lady. No, I was trying to understand the findings. He told me she would never need follow up. I have also started thinking about the weird and miscellaneous problems my other dd has had and I wonder this could be the underlying problem to many of them. I have posted a few pictures of her MRI online and 4 to 5 people (in different groups) all had the same thing to say. I realize they are not doctors but as Moms and patients we tend to learn a lot about the things we are going through. So it does make me wonder. I just can't seem to get her in fast enough and that is so frustrating to me. The wheels turn so slow.

This worries me to. My dd is not in a position at this time to require one or need one although I think it many ways it would benefit her. There are a lot of unanswered questions in regards to her health right now but time will tell. Just something I want to research. Thanks!

Yes, thank you. Actually we are going to go visit this place. It's about 2 hours away but I am looking forward to it.

Thank you. I appreciate the info.

Just wondering if anyone has looked into service dogs or if anyone has them? This is something that keeps nagging at me. I have looked at a few sites online and they seem pricey and hard to qualify for. Any advice or places to look for more info? We are in California?

Thank you everyone for the great suggestions! Lots of ideas to look into. I really appreciate the feedback.

So my 15 yo dd has really gotten interested in learning how to apply make up but more like bruises and blood then anything else. She has been watching You tube videos and trying to teach herself but I was wondering if there was any kind of instructional type videos or classes that might offer this kind of thing. Anyone have a kid that is interested in this? I don't mind it on her arms but I really hate seeing it on her face, creeps me out. :scared: Is this even the right name for it?

Thanks...I have been looking at Staples.com but I was just wondering if anyone had any experience with a specific 4 in 1 that they liked.

I have a brother laser printer which I love but more and more I am finding the need to copy, scan or fax documents and I hate having to leave the house just to do this. I don't want to spend a lot of money and something with wifi would be great so it doesn't have to be connected to my computer as I am limited on space. Any recommendations? Would not be using it for printing purposes.

Very interesting. They did check her B12 levels at the same time and they were normal, right in the middle of the range that they look for. This is something that I found that night though, and she had many of the symptoms. The symptoms I remember her experiencing that day are in bold. Those were new although with some other medications she had the numbness. She was also vomiting and she was not sick. Also if teens need 600 mcg's and from what I understand a deplin 15 = 15,000 mcg that would be way to much medication. Am I missing something? http://www.livestrong.com/article/408171-signs-symptoms-of-having-too-much-folic-acid-in-your-body/ Toxicity There is no health risk associated with folate intake from food. However, there is risk of toxicity from folic acid found in dietary supplements and fortified foods. Folic acid is used to treat a folate deficiency. However, a folate deficiency is virtually indistinguishable from a vitamin B12 deficiency. Large doses of folic acid given to an individual who has a vitamin B12 deficiency and not a folate deficiency can cause irreversible neurological damages. The Food and Nutrition Board of the Institute of Medicine has established a tolerable upper intake level for folate. For children 1 to 3 years the limit is 300 mcg daily, for children 4 to 8 the limit is 400 mcg daily, for children 9 to 13, the limit is 600 mcg daily, for adolescents 14 to 18 the limit is 600 mcg and for those 19 and older the limit is 1,000 mcg per day. Intakes above recommended limits increase the risk of adverse health effects. Signs and Symptoms Having too much folic acid in the body can result in a variety of signs and symptoms. Less serious side effects include digestive problems, nausea, loss of appetite, bloating, gas, a bitter or unpleasant taste in the mouth, sleep disturbances, depression, excessive excitement, irritability and a zinc deficiency. More severe signs include psychotic behavior, numbness or tingling, mouth pain, weakness, trouble concentrating, confusion, fatigue and even seizures. An allergic reaction to folic acid may cause wheezing, swelling of the face and throat or a skin rash. She was on the Celexa but I do not believe she had the Imetrex those three days. So, yes possible a reaction to the combination.

Good question. And, how long would it take to get the level back to normal?

This is all very confusing. Thank you for trying to explain it. I do think the Deplin 15 was way too much, obviously. That is what we heard echoed by every doctor was that she should have been started out on a very small dose and worked up from there.

This. It was suppose to help the depression and be used with the anti-depressant. Unfortunately it back fired and now she doesn't take either one. :glare:

Thank you for the replies. I appreciate the comments about how to help her feel more in control rather then just being angry and upset at everyone but how to involve her more. She has already started filling out forms and she has an online account that she can access and send emails to her medical team. I don't think she is there yet, but some things for me to think about when she is ready. She will have to go back to the doctors, but I am picking my battles right now. She is only 13 so still a ways before being on her own but I agree having her involved in decisions is important. I am trying to give her control where I can and she knows when I wont negotiate. I would take privileges away if she put up a fight regarding the things that I don't see an negotiable. I was on the fence about the meds. I don't know how she feels, I don't know how the medicine feels. I have lung disease and they had me on over 10 medications and I have slowly been trying to stop some of them. I get it. So, this seemed reasonable for her to try and see how she felt. The blood test I was also on the fence about. I would have liked to have her do it where I could see her numbers were going down but I would assume they would since we had stopped the Deplin. She saw a psychiatrist and that is who gave her the Deplin. She sees a social psychologist (or something like that) for CBT. She likes the therapist that does the CBT. She has been in therapy since June. She has had episodes of not wanting to talk about the accident or horses but she always talked about something. This was the first time she wouldn't talk at all. This therapist that she has trusted can't prescribe meds so this is why we added the psychiatrist. We won't be going back to the psychiatrist. Her primary had been the one prescribing all the medication. Can you explain this more? What is MTHFR and how would they test or treat? Could going off the anti-depressants and/or the over medication of deplin cause her to still feel nauseous three weeks later?

I have posted quite a few times about my dd that suffered the TBI. October and November were pretty decent months. School was just getting off the ground and we were starting to get a routine going. Early December we had an incident after seeing a psychologist. We were against adding another provider to the team but her primary really wanted someone who could over see the anti-depressant meds. The visit in and of itself was okay. Dd didn't want to talk which was okay because she had been doing the CBT and she liked that therapist. She recommended adding Deplin15 to her regiment of meds (which included celexa and imetrex). I did some research and asked her primary and it seemed like a reasonable thing to add. We started that night. Within three days she felt horrible. She was completely nauseous, had numbness in her head and legs and a horrible headache. She kept pounding on her head (despite the headache) because she said she couldn't feel her forehead. She had other symptoms but I don't honestly remember what they all were. It was a Friday evening so I called the advice nurse. Advice nurse put us in touch with the on call doctor who was concerned about the Deplin since that was the only thing that changed that week. She recommended we go to Urgent Care and have a doctor check her and run a folate blood test. She told us that if her folate number was high we would need to go into the ER and have a IV flush. We did that and we were told to go home and wait for the results and be prepared to come back in. Her blood pressure was also low that night. The test was suppose to take 2 hours but it took over 24 hours. They called us on Saturday evening and said her numbers were high and we needed to go to the ER. I had three doctors tell me this (on-call, and 2 urgent care doctors). We went to the ER and we spent about 5 hours there. ER doctor was not too concerned and didn't want to the IV flush. He said just wait it out and stop taking the meds (which of course we had already done) and that eventually she would feel better. He discharged her and diagnosed her with a folic acid overdose. She has continued to feel nauseous (with some vomiting) off and on since that first weekend in December. Unfortunately it affected her emotionally probably more. She has refused to take any of her medication since that weekend. Her first week off the anti-depressant she cried, a lot. We talked about things and she was adamant that she didn't want the medicine. Now she just seems withdrawn more. She has had intermittent exercise over the three weeks but has spent a lot of time in bed. In fact one day last week she slept for about 17 hours (at once). She pretty much is just laying in bed, playing games on her computer or watching Netflix. Her appetite is less again and she had just gotten to a point where she put the 20lbs back on she had lost. She seems "happy" in her room and says she just wants some down time. School has been a huge struggle and just brings her to tears. Her last CBT appointment she wouldn't talk so the therapist sent her home. Ugh...She was excited for Christmas but didn't seem overly happy with her gifts. I ordered the book Love and Logic for kids with health issues, maybe that will help me but I hate just watching her lay in bed all day, everyday. She won't even come in the living room. She was suppose to go back and have another blood test to check her levels again but I haven't been able to get her there. I asked one day if she wanted to go see her primary and check in with him and one evening she agreed but by the next morning she refused. The therapist wants me to give her control and so I have where I feel I can. She will see a Neurologist in January (for possible Chiari Malformation) and that is non negotiable and she knows that. She just says they can't do anything and they will just give her medication which she doesn't want. I understand this and I am trying to just give her time to heal and chill without pressure and stress but it's hard at the same time. I also just really want answers to the Chiari issues so we know if we are still dealing with TBI issues or new issues and she isn't seen in the TBI clinic until February. The medical wheels just aren't turning fast enough at the moment. Thanks for listening...just needed to get this off my shoulders.

Totally naive parent here bought her 15yo dd GTA for Christmas. We got her a 360 and I decided at the last minute to buy some used games from Game Stop since they were having a buy 2 get one free sale. She likes the RPG and they helped me pick out quite a few. Her favorite so far is Fable. I needed one more game so I called DH to ask him what he suggested. GTA was his suggestion. I had NO idea. :confused1: I really thought it was just a racing game. My dd was in complete shock when she opened it, obviously she knows what it is about. I was not happy with DH. So basically he can play it without kids in the room and she'll get to pick out something else but I think I am done picking out games, or at least taking suggestions from DH. :laugh:

Thank you for all the suggestions. Now I am leaning towards cards against humanity again but I am not sure if I would be able to find it for sale locally. Lots to consider though if I can't. Thanks!

No I have not. I did watch a video on Amazon I think of the three grandmas playing it and I know it would not be a game I would enjoy. My Sister, maybe.

I have considered cards against humanity but I just don't know. Thanks for all the suggestions. I believe they have the wise and otherwise game.

Any board game suggestions for a family with adult children? Or fun party type games for adults? ETA: doesn't have to be a board game. Can be card games, fun games..any kind of game

Costco also makes one that is in there refrigerated section that is pretty good.

I was going to say the same thing. Where is the cheese?

I hope you are able to find the solution that works the best for him. :grouphug:

Thanks. Those are more expensive then I thought they would be. Something to think about though for the future.

Where do you buys these at? I think my 13 yo might like that. Night time is getting very difficult. Last night we were up until 2am. We tried baths and tea and stuffed animals but night time now really just sucks, for both of us.