Hello,

This is my first post here. My daughter got hit in the head during cheerleading practice in November 2015. At the time she was 15 years old. I expected her to bounce back after about a week. I took her to the ER once she got hit. I knew she had a concussion. She had never had any head trauma up to that point in her life.

The first week she slept 22-23 hours a day. I took her to the doctor and expressed my concern. After two week of this and her not eating much. I took her back again and we were referred to a neurologists. Once she woke up she was completely different and I hate saying that it breaks my heart. She had noise sensitivity, light sensitivity, insomnia, migraine headache, anger out burst, she was foggy headed, anxiety, recurring nightmares when she did sleep, memory loss, lack of short term memory .

We met with a neurologist and the diagnosed her with TBI and PCS. She was taken out of school because she could not constraint, her migraine was severe and thinking and focusing made it worse. My husband took 2 months off of work because she could not stay home alone.We went to weekly appointments for the neurologist to check on her.

She did not have ANY improvements at all until 6 months post injury. I took her to a hospital that has a concussion study and PCS as well. They had a sit down meeting about my daughter since she had so money symptoms. She stumped everyone and all I am being told is can be 1-3 years for her to heal.

I tried every possible treatment that I found online that had helped with this type of injury. So here we are 16 months post injury and my daughter is still not recovered 100%. She has mood swings, depression, anxiety, and shows no emotions. Her psychologist put her on 200 mg of Zoloft and she has been on it almost a year. I have her taking Vitamin D, B12, and prenatal vitamin daily.

With that being said my daughter has improved in some areas. She struggles in school and she use to have a 3.87 and now is a 3.33. She is on an IEP because she takes long to do work and cannot finish standard testing in the allotted time given, her memory loss so she needs notes and open book to help her.

I am wondering how long she should be on the Zoloft? Does the Zoloft help with her moods and lack of emotions? I am wanting to wean her off to see how she does. I want to know if there is anything else I can do to help her recover?

I feel so hopeless. I want my daughter back the way she was before. I know I am not the one going through all of this but I hurt for my daughter. I hurt that she has given up and lost so much because of this. I feel like my family and I are alone and no one understands. I just don't know what else I can do.

I would appreciate ANY advise, anything anyone had done that has helped and what your thoughts our on the timeline I was given.

Thank you,

Carrie

Carrie,

Welcome to NeuroTalk. I am so sorry to hear your daughter is struggling so. I have a good idea what you are going through because my mother went through a similar experience with me 40 to 50 years ago.

Everything she is experiencing is not uncommon. The burden you are carrying is common, too.

I'm a little confused about the timeline. I guess you mean she suffered her concussion in 2014. Then, she was put on Zoloft about a year ago. ?

I have a number of concerns that may have not been addressed.

How is she sleeping ? Has anybody watched her sleep to see if she breaths consistently through the night ? Nightmares can be due to breathing struggles.

Has she had her vision assessed by a behavioral optometrist ?

Has she had any assessment of her neck ? A hit to the head causes trauma to the neck. Upper cervical injuries can be hard to diagnose and difficult to find good treatment for. More on that later.

I'm concerned about the high dose Zoloft. I also do not like to see psychologists getting so hard into meds, especially a single med. Many people need to try different meds to find the one that works best. Her mental health struggles are far more than garden variety anxiety, depression and moodiness. Her flat affect (no emotions) can be due to her concussion or due to the high doses she is taking. The Zoloft could be helping or hiding things. It will take months for her to reduce her dose.

Has she had an assessment of her hormones, all of them ? A neuro-endocrinologist's assessment could be helpful.

Has she had a Neuro-Psychological Assessment ? They are done by neuro-psychologists, not generic psychologists. Some are better than others. A neuro-psych affiliated with a neuro rehab hospital or clinic would be a good start.

You don't say what other symptoms she currently has beside the depression, etc. Is she back to school or still struggling ?

How much B-12 is she taking and what kind (methyl or cyano) ? The vitamins sticky at the top has lots of good information. Is she consuming a normal diet or doing anything special. An anti-inflammatory diet may be worth consideration. Google anti-inflammatory diet.

What state are you in ? Some states have access to treatments that others do not have.

What are the treatments you found online that you have tried ?

Regarding her neck. If it gets inflamed during sleep, it can cause sleep disturbances that can make her days miserable and prevent her brain from healing. And cause the nightmares as her brain get poor blood flow and poor oxygen. Gentle traction and mobilization by a skilled chiro, PT or such can help but the most important part is sleeping with good head and neck posture so the inflammation is not triggered. Too much pillow/lift, neck angles, and anything where the head is not straight with the spine can cause inflammation.

She needs proper quality sleep where she goes through all of the proper stages of sleep. The brain heals during REM sleep. It purges toxins during slow wave sleep. So, all the stages are important.

For me, I did best sleeping in a recliner so I stayed in good alignment. Adjustable beds like a hospital bed can help, too.

By now, I'm sure I have overwhelmed you. Sorry about that.

Feel free to ask any question or tell us anything. PCS like you daughter is experiencing is complex and stressful. You arw with people who understand.

My best to you both.

["noise sensitivity, light sensitivity, insomnia, migraine headache, anger out burst, she was foggy headed, anxiety, recurring nightmares when she did sleep, memory loss, lack of short term memory"]

Keep working at finding the right doctor. Neurologist, Neuropsychologist, Physiologist (physical medicine), or ENT (Ear Nose Throat) for starters. Ones that have a background in brain injury. Keep looking for the right doctors until you get the answers that work and make sense. You can get help, support, and advice online, but clearly from your post she needs direct help from medical professionals experienced in traumatic brain injury.

Strangely, most of the symptoms you mentioned can be symptomatic of a singular vestibular issue. If she also has any complaints of dizziness or balance issues finding a good ENT with a background in brain injury would be a pretty high priority. They have advanced objective testing for many very treatable conditions that could be an underlying cause for a cluster of symptoms that on the surface seem totally unrelated. Strange, but true.

Rambo,

I applaud you and your husbands dedication....you are of tremendous significance to her recovery.

The only suggestion I have is to not be anxious to get who your daughter WAS back. Do your best to make her comfortable with the now her and keep attainable goals in her path.

My rebuilding process involved deciding what of my past was important and attainable and then prioritizing that list for achievement. Rather than missing me I looked at my past as a shopping spree sort of for my new goals.

Hang in there and don't let others get you down....as with anything else in life no but but those of like experience can relate whether it is a good or bad experience.

Bud

Hello Bud,

Thank you so much! You are correct and I feel horribly guilty that I feel that way. I love my daughter and if I could I would trade places in a heartbeat. When I discuss how she was it is with my husband and NEVER in her presence. I would never want her to feel bad. What happened to her was not her fault it was an accident that no one would expected the out come. I do morn about her struggles with my husband. I hurt for her. I honestly felt alone until I was reading on this group. I have received more advise on this site than I have from and medical profession. I have went all over the state of Oregon and made hundreds of phone calls, etc. The biggest thing that I miss that it is truly the hardest for me is her emotional well being. I did start the vitamins that are listed and started to wean her off the Zoloft and I can see a HUGE difference in her. She is smiling again that is huge for me as a mother knowing she is happy. Thank you for the encouragement and understanding. No one truly understands unless you have lived in in some form.

Cheers,

Carrie

Hello Mark,

Thank you so much! It is nice to have someone who understands. You are correct it was November 2014 when she got hurt. She was put on the Zoloft in May2015. She is sleeping better. If she has a hard time I give your some melatonin to help her fall a sleep. After she was injured I took her several times to the chiropractor and he adjusted her. I was hoping this would help the headache but it did not go away. I have not had her evaluated by a behavioral optometrist but I will most defiantly do that. What do they do? What do they help with? I have spoke with her pediatrician and he agreed about the Zoloft. I have started the weaning process and started her on the vitamins you recommended and she is already making huge improvement. I have not had her assessment by a Neuro-Psychological or a neuro-endocrinologist but I am working on finding both of those right now. We are in the state of Oregon. We have done herbs, acupuncture, and chiropractic,Craniosacral therapy. Her depression is better. She has anxiety problems when she feels trapped or a lot of people but these are improving. She gets headaches very easy now. I had her tested and her short term memory is much better but she still struggles to remember stuff, she is on an IEP at school, she recently took a state test and was given additional time and could not complete it. It takes her longer to process. She is also dyslectic and was before her accident but she was very good at hiding it and masking it so no one really new but now it is not possible to hide it. I have made it where she does not have to read out loud if required with her IEP. All of the specialist I have seen tell me it takes 1-3 years for her to recover completely. Has this been most people's time line? Did everything improve? What are the most common symptoms that stay? Do you have any recommendations as far as Neuro psychologist or neuro-endocrinologist? Thank you so much for the advise it is such a blessing to have other people who truly understand.

Warm wishes,

Carrie

Thank you! I am working hard on finding those doctors recommend! I appreciate your advise and help.

Thank you,

Carrie

Carrie,

Good to know you are in Oregon. Her age might make this difficult but she could try some CBD oil with a small percent of THC in it. It has been helpful to some and is worth a try. I wish I had access to it here in Idaho. The oil is horrible tasting so most put it in food. It is hard to absorb in food. Toughing it out with a drop or two under the tongue to be absorbed sublingually would be the best method. It tastes bad but so do many medicines.

The specialists who say 1 to 3 years to recover completely are just making 'shot in the dark' comments. Nobody knows. 85% recover within the first 6 weeks. The rest are all over the map.

I think the biggest challenge for you and her is simple but tough. As with her dyslexia, she needs to learn or relearn how to learn. One of the private companies like Lindamood-Bell may be able to help. My nephew had fallen through the cracks with dyslexia and other learning issues and they were amazing. National Association for Child Development also has great programs. http://www.nacd.org/who-we-help/brain-injured/

I had to learn that my old ways of 'quick absorption' of class material was over. I needed lots of repetition to retain information. I also needed to learn to "STOP TO THINK." I had to learn how to clear my mind of distractions so the thought process could take place.

You mentioned 'recover completely.' Research suggests that for those of us with prolonged struggles, a large part of our recovery back to a normal way of life is due to learning work-arounds. Many of us never recover completely but with these work-around and accommodations, we go on to live full and successful lives. My point is for you to know that even if she has long term issues, she can still go on to have a great life.

I had to learn to deal with outbursts. Many of us do. The brain just gets overloaded and we pop. I had to learn to recognize when this was starting to build and just walk away. My wife is good at observing this and touches my elbow to give me a clue. I had to learn that no matter how much I thought I had a right to respond, I did not in reality have that right.

I also needed to learn that these outburst struggles were not normal and not a part of who I am. They are an aberration. So, it helps to learn how to get past them, make apologies and move on. I carry a card in my wallet that describes my outburst issues that I have to authority figures who tend to get loud. It is a big help at TSA where workers like to yell orders at everyone. I don't respond well to somebody yelling orders at me when I am trying to focus on something else and don't expect it. The startle and verbal challenge can set me off. But, I have learned how to deal with it so it is rarely a problem. A valuable work-around.

Regarding her neck. Most chiros are far too aggressive with neck adjustments. The twist the head and pop the neck can cause more trauma that results in inflammation. Upper neck inflammation can cause all sorts of problems. My gentle chiro would do very subtle adjustments and then have me ice my neck for 15 minutes. The most important part was my discipline during rest and sleep. My neck rarely has any pain or discomfort but if I sleep wrong, I have nightmares and a miserable and grumpy day.

I learned a new work-around recently. When you know you are going to be in a crowd of people talking, put a foam ear plug in the left ear. By increasing the differential between the right and left ear, her brain should be better able to process the voices. The right ear already does most of voice processing so this remove the challenge from the left ear. I also stay away from the middle of a room. Near a wall or corner of the room means the sounds come from less directions. It makes a big difference. Mack's makes a good foam ear plug that is flesh tone. Walgreens and many other places have them.

If you can find a brain injury support group to attend, that would be great. Mine serves the injured and their family. OregonBIA has a list of them. http://www.biaoregon.org/supportgrp.htm

It would be worthwhile to explain more to her so she does not think she is going crazy. A support group may help you with this.

You both will be fine. Take you time and work through each issue individually. There is no one treatment for all of the PCS struggles.

My best to you both.