[joshie's parents]

Hi,

We are new to this support group and wanted to know what knowledge and experience you all have with CT scans and MRI's as tools for recovering from concussions.

It seems like for most people they get a "clear" scan or MRI, even though they clearly are struggling with many symptoms. We are very hesitant to do either due to the high radiation levels for the brain with a CT scan (they have 100x the radiation of a chest x-ray and children's brains are so much more vulnerable with still developing). With an MRI - our son would need to be under general anesthesia because he is so young and would need to stay still.

History - Our 5 year old son suffered a concussion a month ago and has been experiencing post-concussion syndrome symptoms. We think he fell off a large trampoline and either hit his head on the concrete or on the metal frame (we didn't see it and he doesn't remember what happened or where he was at the time). We feel terrible as it was irresponsible on our part to be letting him play in this unsafe setting at a friend's house.

His symptoms since the the concussion were headaches the first week and then he was symptom free for several days. Ten days later, he fell off a bench and hit his head on a tile floor. He was scared and said it hurt, but 10 minutes later he said he was fine. However, the next morning he woke up with severe pain in his forehead and continues to have intermittent forehead pain and a bunch of other symptoms started that he didn't have before - disrupted sleep patterns (not sleeping as much as he used to and tired), behavioral changes (more irritable, anxious, mood swings, low tolerance for stress), zoned out, and cognitive changes (stuttering, problems with memory, delayed processing, problems with paying attention, confusion etc.).

He is getting rest (as much as we can possibly get a 5 year old boy to rest!) and very low stimulation, and has a very healthy diet with many of the recommended supplements mentioned for brain healing.

Any feedback would be helpful.

Thanks!
Joshie's parents

[Mark in Idaho]

Joshie's parents,

Welcome to NeuroTalk. I am sorry to hear of you son's two injuries. I can understand the anguish you are going through.

You are correct about the value of CT's and MRI's. Hopefully, a doctor has told you how to watch him for new and possibly dangerous symptoms. If he is a busy little guy, you will be hard pressed to slow him down.

He needs quiet rest as much as he can get. More importantly, he needs to be protected from another head impact. If he is going to be out and about with you unable to constantly watch him and keep him corralled, you may want to find him a full coverage helmet, the Styrofoam kind. It should cover his ears and forehead so that it stays in place. Most bike helmets easily slip out of position and leave the forehead exposed. Skateboard and ski helmets tend to have better protection.

It will also help him and his friends remember that his brain is injured.

All of his symptoms are normal. Try to help him understand that they are caused by his injury and will take a while to get better. He is not going crazy or getting stupid. Don't let his friends tease him about this. he does not need the stress. In fact, if you can help him learn to laugh at his broken brain, it may help him. Many of us call the speech and other obvious symptoms 'brain farts.' You can come up with the appropriate terms so he can tolerate his goof ups.

His personality issues are likely where he will need the most help. If his friends react negatively, it can become very confusing. Anything you can do to help his friends understand why he may be acting different will help. 5 year olds will not necessarily understand but their parents should be able to be supportive.

When I was 10, my personality changed from a bike accident concussion. I did not understand why most of my friends turned away from me.

If you can get him to sit down and play simple games or with quiet toys/blocks/Legos/ etc., The slower pace will help his brain. If you can, try to institute a few times during the day when he has quiet play time for a hour or so.

Keep him away from video games, loud noise, too many voices, visual stimulation, etc. Limit his high sugar content foods, especially high fructose corn syrup. Research shows that HFCS is the worst for an injured brain.

If he feels sore on his head or neck, use some ice to help him feel better. You can make a soft/moldable icepack with isopropyl alcohol and water in a 1 part alcohol to 3 parts water frozen in zip lock bag. It is not uncommon for a concussion to include upper neck trauma that goes undiagnosed.

And, let us know how you all are doing. We know the recovery can be slow and frustrating.

My best to you.

[joshie's parents]

Hi Mark,

Thank you for all your suggestions. We will have to look into the styrofoam helmet you are mentioning - where would they sell those? We have tried the bike helmet but it is not comfortable for him to wear all day long with the back strap.

We have taken a very serious approach with his rest after his second fall 10 days after his concussion (that is when the second layer of symptoms developed and we realized he was in a more fragile place). For the most part he stays at home (he says that riding in a car shakes his brain and anywhere we would go would have more stimulation than home, so we are staying at home).

He rotates between resting in his bed in his room (dark/quiet environment) and playing with soft toys (stuffed animals, silly putty, hand puppets) while laying on his pillow and then getting up to play low stimulation activities like painting, legos, playdoh etc. We try to let him play by himself as much possible so he has less interaction but when he wants the company we will play with him or let his sister play with him.

We have noticed that increased stimulation (when a friend comes over to visit him or the few times he has tried to return to school for only 1 1/2 hours) causes his symptoms to surface more strongly that day or the next day. So we are being very conservative.

One of the reasons we have not pursued the CT scan or MRI is because it seems like his symptoms of PCS worsen when he is too stimulated but improve when he is more restful - which makes us think that there is not a more dangerous concern. Not sure if that is accurate or not. We are waiting to see a pediatric neurologist and our children's hospital for getting their opinion.

Any thoughts are appreciated.
Joshie's parents

[Mark in Idaho]

joshie's parents,

You are doing everything just right. I know the problem with getting jarred in the car. My trick for tolerating car rides if the road has bumps is to sit with my shoulders forward and off the back of the seat. The curved back has much more ability to absorb road bumps. Just a single manhole cover used to be a problem for me. Stopping too fast would risk whiplash.

I doubt the pediatric neurologist will make much difference. You are already doing everything possible. His neck is probably in need of the most attention. You should check on his neck posture when he is trying to relax in bed. Too much neck angle can be counter to recovery. It would be better for him to be sitting up with his shoulders supported than just his head and neck if he is not sleeping flat on his back. You'll have to watch to figure out how to help him with neck position. I know it makes a huge difference to me and my injury was 11 years ago.

If he sleeps on his side, try to help him keep his neck straight. Maybe an extra pillow or thicker pillow will help when he is on his side. It may help to watch him sleep to make sure he is breathing consistently. Upper neck inflammation can cause breathing interruptions. This can make PCS symptoms much worse. I doubt it is an issue at his age but it is worth watching him sleep to see.

My best to you and Joshie.

[pretdou]

Joshies parents,

I'm so sorry for what you and Joshie are going through. It is agonizing to see your child injured in this way. My daughter, who is now 13 y/o has sadly had several concussions. When she was 10 she sustained a very serious concussion in a gymnastics class, which resulted in prolonged sx of concussion that eventually resolved after two months. It was at that time that we realized that she had had for certain 2 prior concussions. It seems she is again experiencing PCS from having run a 10k one month ago. To say I feel badly about it is quite an understatement.

As Mark said, you are doing everything right! I think protecting Joshie from the radiation of the CT scan, as well as the general anesthesia needed for an MRI, is a conservative and protective course of action. We have done the same. Of course if there is sudden/dramatic change you would re-evaluate. I will say that the first time around we were not told to protect our daughter by keeping her home and it took me about a week to get my bearings and realize that she had to be protected from further physical/cognitive/emotional impact to her vulnerable brain. I feel lots of hope for Joshi to do very well--my daughter did very well and she had previous concussions that undoubtably made her more vulnerable. The thing I wish I had known is that with this sort of hx someone does get much, much better but they will always be more vulnerable. I wish that after she had come through the worst of it that I had continued to read and learn so that I could offer her the best guidance possible. The aftercare we recieved consisted of the neurologist telling me that a hit to my daughter's head would not be the same as a hit to someone else's head. That is not enough information to help a parent guide a child who has had PCS/multiple concussion. Keep us informed of how Joshie is doing. Your doing an amazing job with him on the home front.

[PCSMother]

Hi,

I am so sorry for your son's injuries. My 16 year old has had several concussions, we have now logged 8 major ones, but the first few didn't seem too bad at the time. I have learned that each injury can require more time to heal and make her more vulnerable.

As far as the MRI goes, after the car accident in Feb. 2011 where she had a whiplash and couldn't seem to shake the PCS, the neurologist said not to have an MRI for a few months as it is likely to cause her symptoms to worsen due to the very loud banging and sound vibrations.

After about 5 months of very slow recovery, she was kicked in the head and received another concussion. This time the doctors ordered an MRI after 8 weeks. She did have quite a setback with symptoms. Also, she had another MRI 8 months later (recent tremors starting,) and is now still flat out 6 weeks later with symptoms as if she is almost back to square one.

My point is that an MRI can be very useful, but they say it isn't usually necessary unless certain symptoms are present. Since it can make sensitive individuals have worsened symptoms, I say you may want to wait and let him heal unless the doctors really think he needs the scan.

It doesn't bother everyone though. But my daughter is very low threshold and the MRI does really affect her, and they can't find anything abnormal since they only really see very obvious damage. Usually concussions do not cause that kind of damage that shows up on scans.

Hang in there. I wish you son a fast recovery.