10 year old with PCS, day 23
 

My 10 year old slid into the boards during a hockey game and has now been diagnosed with PCS. We've gone from a regional ER to a neurologist at Children's Hospital in Boston, consulting with our pediatrician in between. Everything I'm reading is quite scary. We've been assured he'll make a 100% recovery both cognitively and physically, but now I'm wondering how they can know that. Nancy, you mentioned a great physician out of Concord, MA. We have been quite dissatisfied with the lack of support offered, even upon repeated requests, for help with integrating back to school (which is the #1 recommendation) as well as managing the daily headaches. The phone number to the Children's Hospital Neurologist on-call is really only helpful in a crisis situation. We've been told that our son is not a candidate for the Neuro-clinic at CH. I'm thinking now that I need to get on the phone tomorrow and find a neurologist who specializes in concussions. I wonder what your experience has been. Both my husband and I are starting to feel desperate. Today was just day 2 back at school, which ended with the worst headache thus far. We too have talked with the teachers and he's basically doing "what he can" for now. Best of luck to your son.

sbosco,
Sorry for slow reply. sometimes i go a few days before touching base with this site. Yes, i can understand how frightening this situation is for you. Your son will get better!! When my son started school again he had a terrible headache after his first day and really looked exhausted. The terrible fatigue is also a symptom for awhile. He is doing his best and do not push him too hard because it will slow down recovery and bring on symptoms. Let me start by telling you my son is doing extremely well now and completely back to where he was before. It took about 6 months or so! His symptoms gradually faded away. It is 2 steps forward, 3 steps back. We went to see Dr, Cantu out of Emerson hosp. in Concord MA. We saw him every 2 to 3 weeks and then much less often and now we do not see him at all. Our last appt. was in October. This helped because he saw a large volume of PCS kids and adults and does research in this area. It is a long drive and no treatment was given other than reccomending notes to teachers about not doing homework or taking exams for months at a time. We also saw Dr. Neil McGrath out of Brookline MA, this was a great help because he mapped out a plan for rest and also was very experienced with the PCS recovery process. Initially my insurance company did not cover this but then they did. He spent hours with us initially. It was the most valuble appt!!! He is a neuropsychologist and Dr Cantu is a neurosurgeon. I would see Dr. McGrath for sure or at least call him. He has a website www. sportsconcussion.net. I will not overwhelm you with more information. Time and rest will heal your son, the doctors will help support you with school notes to teachers. Mostly listen to symptoms back off if he gets headaches, he is young have him get exempt from homework and if he can start with half days that is great. My son was a Sophmore in high school. He did not do homework or exams for the rest of the year and made up his work over the summer and started as a Junior. The school supported him all the way and he is now doing better in school than he did prior to his injury. We are just trying to keep him from reinjuring himself with no live wrestling this year. GOOD LUCK, you will be O.K.
Nancy

Nancy,
I'm still trying to figure out this whole Chat room thing, so I'm sorry I missed your response earlier. Thank you for that information. I've heard of Dr. Cantu somewhere along the way and will follow-up with your suggestions. Since this started I have been left with a guessing game about how to practically manage this condition hour to hour and day to day with little or no resources provided by the doctors. Sounds like you find just what I'm looking for.

We sort of hit a bump in the road this week with our Neurologist being worried about rebound headaches and taking my son off all pain meds. This has resulted in nearly constant headache pain of 8+ and little sleep....not good for recovery, I know. We finally have a consult at the neuro clinic at Children's tommorrow, so I'm happy to have your information to bring to the table. One of our biggest questions is Are we in the right place? We know the process will be slow and maybe even painful, but we can't afford misinformation to curtail us along the way!

I'm so encouraged by your son's story. I hate to think it might take us that long, but knowing (having been told by dr's) that he will make a full recovery is a blessing I thank God for many times a day.

One other question, if you have time. Did you have any experience with Amitriptyline? This antidepressant (used to prevent headaches) is the number one treatment my doctor is banking on, and I'm worried we are spending too much time waiting for this to get into his system and then tinker with dosages only to find out it won't be effective.

Thanks again for taking the time to help me! :)

Hi sbosco, I am so sorry that your son has to go through this. I was in an accident last May and have been dealing with PCS since. I wanted to respond to your question about amitriptyline. I started taking it in early Dec. and it has helped my headaches a lot. I started on 10 mg. and went up to 20 mg. after Christmas and the main side effect was drowsiness, but it went away after about three week. Dry mouth is also a side effect - but not as bad as all the headaches. I am 51 years old and it probably takes longer to heal when you are older. Hope this helps and best wishes for your son.

PS. It took about 2 1/2 weeks before I noticed any improvement.

Sissy,
Thanks for your reply, I do not have experience with Amitriptyline for PCS so i am glad for your advice.

sbosco,
My son had headaches but did not need to take anything else besides Ibuprofen, his symptoms were mostly dizziness, fatigue, and "being in a fog" as he kept describing it. I am sorry that you have to problem solve the headaches, because I am sure that is now the primary symtom and until that resolves, nothing else matters. I am sure it is also very difficult to get your son to describe his symtoms. this is part of the trouble, they cannot articulate for themselves how they are feeling. You start to have PCS yourself trying to get information from them. Bad headaches are however clearly obvious and so hard to have to watch your son suffer with. I hope the amitriptyline helps. Hopefully in time you can wean off of the meds and he will not have the headaches. Take care and take one day at a time.

Sissy, glad to hear something positive about Amitriptyline instead of the groan I usually get in response. Today was dosage #13 and we're going up to 20 mg starting tomorrow. I hope it proves effective for my son too.

I spoke with Dr. McGrath today who was wonderful. He is the first medical person I have encountered who has been able to offer more than "take it slow." We also contacted Dr. Cantu's office and will likely follow up with him next week. We have an appt. with a neurologist at Children's tomorrow and for me, this will be my last effort to confirm whether or not they can offer what we need.

Sissy, what do the headaches feel like? As Nancy suggested, it is very hard for my son to articulate what he's feeling. He has resorted to moaning, sometimes crying out, and sometimes fully crying with tears. Also, did yours get worse at night? I'm hearing about fatigue headaches at the end of the day. This week's pattern seems to be headaches ranging from 4-7 during the day (managable for him with distractions) and then whammies at night, one he described at 100.

Any experience with Chiropractors (laser therapy to the top of the spine and massage) and Cranial Psychotherapists (zero balancing and pressure points)? My son is undergoing both treatments. I don't know if we will ever know if they're working or not, but he wants to go and feels good being there and being treated. The Psychotherapist told me today that she could feel more "space" in Christopher's head and he was much looser than 3 days ago. I do know he was smiling and relaxed there. Just wondered if you ever tried that?

Thanks for all your advice. It's really helpful to get input from people who have been there!

The headaches
 

HI I am not Sissy however I can tell you what my headaches are like.

I get headaches when I am tired. I feel the fog closing in and my brain feeling squeezed, my skull then feels like it is not attached to my spine properly. Also the total lack of energy like you are dragging around 10 ton and thinking causes more pain in your brain. And when you are like this it is very hard to go too sleep - which makes it all worse and then the tears come.

I think if your son rested during the day i.e. tried to have a sleep the headaches may not be as bad. I have had this for 6 and half years now (I am 51) and have now managed to get into a routine - 11.30 -12 pm shut my eyes for half an hour in quiet room - if I am out I have to go and do that in my car. 3-4 p.m. I actually go to bed and hopefully sleep for part of that time. I set the alarm and will not leave the bed until my hour is up. I think this helps the over stimulation of your brain and does help the headaches. On the days that I manage to actually go to sleep in the aftn I sleep better at night as I am not overtired.

If your son has bad headaches l don't think that he should be at school all day.

I have also learnt that the professionals do not know much at all and if your instincts are contradicting the advice you are given go with your instincts.

Lynlee

Hi sbosco, my headaches are usually worse in the morning. In the early weeks after my accident I thought my head was going to explode and I spent a lot of time on the sofa. I am a homemaker and my only son is grown and out of the house, so I had the luxury to rest a lot. There is a thread on headaches, which was started by e-head, on page 4 of this forum - you might want to read some of the posts. I also recomment www.tbiguide.com, it has some really good information. I hope your son is getting better.

sbosco, I have been following your thread from the start about your Son. Have not replied due to not being able to help.

Do need to tell you, I am sorry he is having to suffer so much, for such a "little man". Hope he heals quickly, God bless, Gaye

Amitriptyline
 

My daughter was on Amitriptyline for several weeks and then another doc recommended Effexor XR, which she now uses. Fewer side effects and more precise dosing. These are classified as antidepressants, but the way it was explained to us, they're used in TBI to help re-establish nerve pathways in the brain. Fortunately, her attitude has always been positive. (More than I can say for myself, at times!) Also found help with acupuncture, and now osteopathic manipulation and homeopathy. Hang in there!