Need the power of peas.... suffering little boy

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Posted 1/29/2013 by PEAcan pie in NSBR Board
 

PEAcan pie
Ancient Ancestor of Pea

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Posted: 1/29/2013 5:49:32 PM
A friend of mine has a little guy who has been suffering. I am hoping maybe the peas could give any insight on what to try next to relieve his pain. Here is the latest facebook post

Logan will be 13 on February 15th. He has had severe head pain for 16 months. In those 16 months his pain has gotten increasingly worse and no one has been able to find anything to help him. He started out still being able to attend school and somewhat function. As the year progressed the pain continued to get worse and nothing we do helps with the pain. He now wakes up at an eight on the pain scale, he can't handle sound or smell and now cannot attend school. We have been told that it presents like a migraine, yet does not respond like one. We were then told that it could be chronic daily headache. He wears an icepack on his forehead from the time he wakes up till he goes to bed. Physical Therapy has been the only source of relief for him. PT would put Logan in traction with his hands, chin tucked in pulling up and forward on the head and could make the pain disappear completely. When he would let go the pain would come right back at the same intensity. We also ice his jaw and head which also brings the pain down a few notches. We keep his head shaved so the ice can reach the pain better. The last thing we found that helps is swimming, somehow in the pool his pain drops tremendously.

He has TMJ and we were told that they do not believe that is what is causing all the pain. he has been on numerous meds and had been admitted on two different ocassions. Plus many trips to the ER. I don't understand how they can send him home in the same pain he came in with. He is physically and mentally struggling. He is losing weight and at times needs help to walk. I can't sit back and watch my son continue to deteriorate. I really feel and believe something is being missed. They keep treating it like a migraine so they have stopped searching for different causes.

We have been to neurologists, a neurosurgeon, TMJ specialists, maxiofacial surgeon, physical therapy, massage therapy, orthopedic spine doctor, Chiropractor, acupuncture and a pain psychologist to name a few. He has an appt. Tuesday with a pain doctor. He has been admitted twice to U of M, Mott Children's Hospital for DHE protocol. He has had one MRI of is head one month into his pain.

Thank your for reading this and for your prayers and helping us share Logan's story so that we can stop his suffering.


Any ideas or hope would be greatly welcomed!
thanks



scrappinghappy
Ancient Ancestor of Pea

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Posted: 1/29/2013 5:54:08 PM
Ouch! Poor baby. Have they tried Cranio-sacral therapy? Could it be diet related? (MSG gives me horrible migraines.) I'd explore that TMJ diagnosis further too.


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kahlan20
BucketHead

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Posted: 1/29/2013 6:00:02 PM
Have they checked for Chiari Malformation? I had a friend that had debilitating migranes (although nowhere near that level) since she was young and a couple years ago found out this was her problem. She had decompression surgery and is doing much better.

caroscraps
7 Sweetpeas for me

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Posted: 1/29/2013 6:09:16 PM
My first thought was Chiari Malformation. I have a friend who had it and suffered severe headaches.


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scrappintoee
luv my bulldoggies

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Posted: 1/29/2013 6:11:10 PM
Wow, that poor boy!!! I am sending up prayers for him!!!

PEAcan pie
Ancient Ancestor of Pea

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Posted: 1/29/2013 6:22:21 PM
Thanks everyone... I will mention Chiari Malformation and Cranio-sacral therapy to her right now..

Be back trying to cook dinner and chase my 11 month old.



frugalchick
PeaNut

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Posted: 1/29/2013 6:24:45 PM
Offering many many prayers...may he find some comfort.....




~frugalchick~

Ms. Liz
Practically Perfect in Every Way

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Posted: 1/29/2013 6:42:41 PM
Allergy testing. The works.

Also, ask for an IgG panel for food sensitivities. This test is not included with the standard allergy tests. Often insurance won't cover it but it will only set you back about $150. You'll have to go to a lab for a blood draw and they'll mail it in with the kit you get from your allergist.





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luvmythree
StuckOnPeas

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Posted: 1/29/2013 6:50:31 PM
Poor kid! If they haven't already, tell then to ask the Neuro if they can try neurontin not sayin thy would work but it's helped my kid. I hope and pray they get some answers and he gets relief.


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PEAcan pie
Ancient Ancestor of Pea

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Posted: 1/29/2013 7:08:07 PM
I am making a list of all the ideas and I am emailing them to her.

Thanks so much peas. He is the cutest little guy and hoping they find relief for him soon.



Judie in Oz
PEAing Upside Down

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Posted: 1/29/2013 7:37:03 PM
It really does sound similar to Chiari Malformation. Poor kid. I hope they find some way to alleviate his pain.

Judie

cbjenks
PeaFixture

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Posted: 1/29/2013 7:39:35 PM
I'm so sorry, just reading this breaks my heart. I hope they are able to alleviate his pain in some way. What a great friend you are, trying to help her get some answers.



Grom Pea
StuckOnPeas

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Posted: 1/29/2013 7:53:01 PM
cluster headaches ?
I sure hope not because they are unexplainable and there is no known cure. My dh suffered from a spell of them and he couldn't even move when he had them.


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KatieBPea
AncestralPea

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Posted: 1/29/2013 8:15:44 PM
A friend's son started suffering from intercranial hypertension when he was 11, which caused him to suffer such debilitating headaches that he missed huge chunks of the school year.

I'm not sure of the details, but he received treatment at a children's hospital that successfully managed this and has returned things to as normal as possible.

I hope your friend is able to get some answers and relief for her son.

ETA: My friend is very passionate about and active in pediatric health issues as a result of her son's experience. If you think your friend would like to talk to her, peamail me and I will see if we can put them in touch with one another.

*edited




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PEAcan pie
Ancient Ancestor of Pea

PeaNut 184,360
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Posted: 1/29/2013 9:19:22 PM

A friend's son started suffering from intercranial hypertension when he was 11, which caused him to suffer such debilitating headaches that he missed huge chunks of the school year.

I'm not sure of the details, but he received treatment at the Children's Hospital of Philadelphia that successfully managed this and has returned things to as normal as possible.

I hope your friend is able to get some answers and relief for her son.

ETA: My friend is very passionate about and active in pediatric health issues as a result of her son's experience. If you think your friend would like to talk to her, peamail me and I will see if we can put them in touch with one another.


Sending a pea mail. I am sure she would love to talk with her. I am going to post this on her facebook so she can read this too. Thanks!



PEAcan pie
Ancient Ancestor of Pea

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Posted: 1/29/2013 9:24:54 PM

I'm so sorry, just reading this breaks my heart. I hope they are able to alleviate his pain in some way. What a great friend you are, trying to help her get some answers.


My heart breaks for them. He looks so fragile on my friends facebook page, I just cannot imagine what they are going through. I just know there is something that can be done we just have to find it. I know the peas can be a very valuable resource!



Alissa103
prepPEA

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Posted: 1/29/2013 9:26:44 PM
Great ideas here - I'd also make sure he's not consuming any artificial sweeteners (diet soda, especially). They can give some people debilitating headaches.

Poor guy. Praying for him.


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*Delphinium Twinkle*
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Posted: 1/29/2013 9:33:12 PM
Have they removed artificial colors and artificial sweeteners from his diet?
I also though Chiari malformation although that would have pylons oh shorn up on the MRI

Why won't the TMJ doc do anything? Of he's been diagnosed with it, something should be done. I have heard about surgery to correct that. Is that not an option?


Bethie
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PEAcan pie
Ancient Ancestor of Pea

PeaNut 184,360
January 2005
Posts: 5,788
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Loc: On a lake listening to Bob marley

Posted: 1/29/2013 10:26:55 PM

Have they removed artificial colors and artificial sweeteners from his diet?
I also though Chiari malformation although that would have pylons oh shorn up on the MRI

Why won't the TMJ doc do anything? Of he's been diagnosed with it, something should be done. I have heard about surgery to correct that. Is that not an option?


I believe they have omitted this from his diet. Not sure why they are not treating the TMJ.



mvavw
PeaAddict

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Posted: 1/29/2013 10:40:08 PM
I'm also going to suggest looking into food sensitivities/allergies. Two of my kids get severe headaches from corn (which is in a LOT of products) and nitrates.

Figuring out if food is an issue can take a lot of detective work, but is possible. The bloodwork mentioned above is a great start. Also, eating only unprocessed foods will cut out a lot of potential allergens. Other potential triggers are natural and artificial flavors, sulfates, caffeine, artificial (and "natural" sweeteners, and anything that a person craves frequently.

Look at the most common foods in his diet and try to avoid them for a week or two and see if there is any improvement.

Logan will be in my thoughts and prayers. Please keep us updated.

Maria

PEAcan pie
Ancient Ancestor of Pea

PeaNut 184,360
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Loc: On a lake listening to Bob marley

Posted: 1/29/2013 10:54:25 PM
I just sent this link to my friend so she will be reading this too.
Thanks everyone for all the advice and prayers! Will keep you updated and hopefully good news very soon.



kryssy
ShakesPEArean Pea

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Posted: 1/29/2013 11:11:57 PM
Is his vision affected? I had what I thought were migraines for three years -- they presented as migraines but never really responded to pain medication. Turns out I had acute angle-closure glaucoma -- the pain is from crazy-high eye pressure.

If his vision is affected at all, he should be evaluated by an ophthalmologist, and specifically tested for this type of glaucoma. A simple laser procedure can get rid of all symptoms...


Kryssy


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wardjmjk
StuckOnPeas

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Posted: 1/29/2013 11:38:26 PM
Look into Upper Cervical Care! I just recommended it another pea. I have a friend who suffered severe migraines that didn't respond to treatment. Skeptical, he was treated by an Upper Cervical Care Chiropractor. It worked! He hasn't had migraines since. In fact, he went back to school and he specializes in this now. Pea mail me if you want more info and can't find it online.


Mari

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UkSue
Ancient Ancestor of Pea

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Posted: 1/30/2013 4:25:01 AM
Would they consider faith healing or complimentary therapy?

I received great benefit from faith healing 30 ears ago- got me off long term steroid therapy and cured chronic pain. Obviously you have to be VERY careful who you see.

I am a qualified reflexologist and have successfully treated 2 adults and one child with chronic pain. Cranial osteopathy, homeopathy and acupuncture may also help.

I will pray for this poor kid.


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identicaltriplets
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Posted: 1/30/2013 4:47:30 AM

Have they checked for Chiari Malformation? I had a friend that had debilitating migranes (although nowhere near that level) since she was young and a couple years ago found out this was her problem. She had decompression surgery and is doing much better.


This was my EXACT thought! My dd was just diagnosed with Chiari Malformation (CM) two days ago. She was diagnosed via MRI. We see a neurologist today and then a neurosurgeon for surgery. She has suffered for more than a year before finally getting this diagnosis. I pray they can figure his out soon but please definitely get him checked for a CM!


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mvavw
PeaAddict

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Posted: 1/31/2013 9:00:32 AM
I thought of another possible trigger- scented laundry detergent and fabric softener. That's something that is a big headache trigger for me and it's something that you don't even notice when you're exposed to it every day.

Maria

MDscrappy
PeaNut

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Posted: 2/1/2013 5:40:37 PM
Does he wear a mouthguard at night for the TMJ? My daughter was having horrible headaches that seemed like migranes. Some days she could not get out of bed. She has TMJ and the dentist said she should start wearing a mouthguard at night. Not only did the TMJ improve, but her headaches were about 90 percent improved.


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apieceofheart
PeaNut

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Posted: 2/1/2013 8:05:27 PM
I'm so sorry your friend's son is in so much pain. How crazy would it be that it would be the Peas rather than a specialist to diagnose this young boy. It certainly does sound like Chiari Malformation. I can't understand why a doctor wouldn't even consider that. I hope your friend's son finds some relief very soon.

EDITED TO ADD:

I was curious about this and did a little googling and found something called hemicrania continua. Basically it's a severe headache that never goes away. It's not very well understood by doctors but there is relief. This might be worth taking a look at. Here are two links you might find of interest...

http://www.foxnews.com/health/2012/10/08/misdiagnosed-headaches-may-lead-to-lack-treatment/

http://www.hemicraniacontinua.com/


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