We are patients living with Trigeminal Neuralgia, here for your support.

Lily's Mommy Female Wenatchee, WA United States: Share on Facebook

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GLOSSOPHARYNGEAL NEURALG…

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Children with Trigeminal…

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MVD's

128 members
Bilateral TN

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Lily's Mommy's Page

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tp416 and Lily's Mommy are now friends Oct 13, 2011

Old Man Winter is rolling starting to roll in. Old fears of freezing cold weather & wind setting off TN attacks still haunt my memories.

Status posted by Lily's Mommy Oct 13, 2011

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Lily's Mommy replied to VMarch's discussion 'MVD Surgery' in the group MVD's

Call your neurosurgeon that did your MVD. My daughter was still taking pain narcotics when she left the hospital. But, she didn't have to take them very long. I think it was just under a week. We piggy-backed Tylenol and Motrin (after a…

Oct 12, 2011

Lily's Mommy replied to Kc Dancer Kc's discussion 'Taking a Poll: Terrified' in the group MVD's

After 4 major surgeries for our daughter by the age of 4 years old, it never really gets easier. I have learned to keep myself busy with projects or deep cleaning the house. It keeps me from thinking about it so much. We had to…

Sep 6, 2011

Lily's Mommy commented on Kimberly Armour's group 'Children with Trigeminal Neuralgia'

There is going to be a study released sometime soon, I hope. Dr. Ben Carson did a study with my daughter and other children in it. Lily is the youngest dianosed and treated. I looked into the chiropractic care as well. Knowing what I know now, I…

Sep 5, 2011

Lily's Mommy updated their profile Sep 5, 2011

Lily's Mommy updated their profile photo Sep 5, 2011

Lily is officially a Kindergartener now! It is amazing to see her enjoy going to school and not worry about if she is going to be in pain. S

Status posted by Lily's Mommy Sep 5, 2011

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painsmom left a comment for Lily's Mommy

I'm so sorry to hear about your daughter's TN. Heating/cold packs don't work for my son. He can't stand anything touching his left side of his face; can't even shower (and we don't have a bathtub) b/c he cries and…

Sep 5, 2011

Lily's Mommy commented on Kimberly Armour's group 'Children with Trigeminal Neuralgia'

The support is here! We completely get where you are coming from. Overwhelming felt like a small word to describe what we feel as parents. You are not alone, though it may feel like it at times. We are here. Don't hesitate to send Kim or I a…

Jun 12, 2011

Lily's Mommy is now friends with jamie leigh and Sheila May 24, 2011

Gloria E. left a comment for Lily's Mommy

Happy 5th Birthday to your little Angel!!! Tell her there are so many people here that care about her. Gloria

May 23, 2011

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Lily's Mommy received a gift from Gloria E. May 23, 2011

Sheila left a comment for Lily's Mommy

HAPPY BIRTHDAY TO LILY!! I am SO happy that the 2 MNDs worked for her! There was a documentary about a little girl who was born with TN, por little gorl couldm't even express where her pain was. The parents startedvideotaping her screaming…

May 23, 2011

Lily's Mommy commented on Kerry's group 'MVD's'

Our little Lily is celebrating her 5th Birthday today!!! I never thought we could all be so carefree about her wellbeing. She has had Bilateral TN since the age of 18 months. July 13th will be the one year anniversary of her 2nd MVD. The 1st was…

May 23, 2011

Lily's Mommy is now friends with Stef and Gloria E. May 22, 2011

Profile Information

Please indicate your membership type: Patient

What type of facial pain do you have?: Type II (Atypical)

What treatments have you undergone (or will undergo)? With what success?: MVD on the right on March 9, 2010 & MVD in July 2010 on the left

Please share your TN story with us...(How did your pain first emerge and then change over time? Were you ever misdiagnosed? Do you believe your pain was caused by dental work? Have you had unsuccessful surgeries or medications?): Lily was delivered into our lives May 23rd, 2006. She was perfect and beautiful in every way. At 6 weeks old she was diagnosed with severe Metopic Craniosynostosis and intracranial pressure. The metopic suture begins at the nose and runs up to the open soft spot. Premature fusion of the metopic suture compromises the growth of the forehead and causes they eyes to appear closer together. When viewed from above the forehead has a triangular shape. It tortured her on a daily basis. Nothing relieved her pain. She didn't sleep more than 2 hours at a time.February 27, 2007,at 9 mos old, surgery finally happened. A craniovault reconstruction, orbital advancement and eye muscle repair was performed. She had learned to crawl in the hotel room the day before surgery. It was the most heart wrenching and longest 9 days in our lives. At 2 weeks post-op, she began to sleep through the night. It was heaven sent! Things went well for a while.At about the 18 mos mark, she started to have sleeping issues. A sleep study was conducted at Children's Sleep Center. There were 75 sleep disturbances recorded. Obstructive sleep apnea was ruled out. A complete blood count was done. Her ferritin levels were low. This can cause sleep problems. Lily took prescribed iron for 6 months. She seemed to be doing well. The only thing we noticed was she was rubbing her eye region a lot. As time went by the rubbing, extreme clinginess, crabbiness and sleep issues were beginning to surface again. By the time she was 18 months old her cranio pediatrician was well aware of some type of discomfort in her facial region. Once the cool air and winds began, the pain intensified and the attacks became much more frequent. Heat was the ONLY thing that really seemed to work for her. Children's had me document everything from what she ate, drank, temperatures, meds, activities, lighting, etc. Then there was a segment on The Doctor's, a tv show, about Trigeminal Neuralgia. A good friend told me about it. I must have watched it a dozen times on their website. EVERYTHING fit! I tried to find whatever information that I possibly could. At Lily's neuro appointment in November 2009, I presented my findings. He thinks I am right! It is an amazing feeling to diagnose your own child. The POWER of knowledge! This would be the 1ST CASE of Trigeminal Neuralgia in a 3 year old, which began at 18 mos, at Seattle Children's. She also saw the Ear Nose and Throat Specialist. Lily has abnormally tiny airways due to her craniosynostosis. They removed her tonsils and adenoids to create up to 50% more room to breathe in Feb 2009. With the MR images completed and reviewed, we were told that there was nothing there. She has been on 4 different anti-seizure medications. Two very dear friends highly recommended Dr Ben Carson at John's Hopkins. His youngest case to date has been of a 12 year old, My friend's daughter is now 13 years old. I requested a copy of her MR images on CD to be sent to Dr Carson. They were received December 16th. We received a phone call December 17th at 4 pm from Dr Carson's Lead Physician Assistant.She said she had to call us before Christmas to give us the ultimate Christmas present. She explained in full detail of what they look for in the MR images and tons of other information. My brain was over flowing with all she had said. Lily does have TN!!! Finally she said, "We would like to invite Lily to Baltimore!" and "We think we can help her!". I bawled like a baby. They were not tears of sadness, but tears of happiness and a sense of relief. WOW!!! Now it seems like there is a pot of gold at the end of the rainbow. God is definitely good!

Would you like to recommend a doctor, therapist or a hospital?: Dr. Ben Carson at Johns Hopkins

Why did you decide to join (multiple answers okay)?: Support: I want to help support others dealing with this

Comment Wall (10 comments)

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At 12:12pm on September 5, 2011, painsmom said…: I'm so sorry to hear about your daughter's TN.

Heating/cold packs don't work for my son. He can't stand anything touching his left side of his face; can't even shower (and we don't have a bathtub) b/c he cries and throws up the whole time. He can't stand breezes. Anything.

Does your daughter have periods of remission between pain attacks? Braden doesn't. They're saying it's atypical and the most severe case they've seen b/c he hasn't had an instant of relief in 16 months now.

Such a horrible, horrible disease.

Thanks very much for the add.

Debbie.

At 4:42pm on May 23, 2011, Gloria E. said…: Happy 5th Birthday to your little Angel!!! Tell her there are so many people here that care about her.

Gloria

At 4:41pm on May 23, 2011, Gloria E. gave Lily's Mommy a gift…: Red Ribbon
Happy Birthday to Lily!!! From all her friends on Living with TN.
From the Gift Store

At 3:51pm on May 23, 2011, Sheila said…: HAPPY BIRTHDAY TO LILY!! I am SO happy that the 2 MNDs worked for her! There was a documentary about a little girl who was born with TN, por little gorl couldm't even express where her pain was. The parents startedvideotaping her screaming sessions, the later, sessions herer she would freeze whatever position she was in, afraid to move due to the pain. Then at 2 and a half she would just become silent and stare at the TV and didn't respond or turn her head when people called. I don't know who was inspired to test for TN, but the got her on meds and she was better. I can't imagine a little girl dealing with the side affects of neurontin though. TLC does stories on unusual medical problems, and pays the participants really well. Its an option to think about.

    So did she have any long lasting effects or complications from the MVD? They seem quite common. There is a new less invasive MVD procedure done witgh a scope, that I hope will become mainstream soon. It lets the patient heal so much faster, fewer complications.

     If there is not already a group here for parents of children with TN here, I hope one of the parents starts one. With 1200 members here, I'm sure there are other parents here. I have seen at least 2 others.

Blessings, Sheila

    Bless you!

At 10:39pm on November 2, 2010, Bob Snodgrass said…: You are truly special!!!!!
With my greatest admiration, I read your words and cry tears of joy..."WOW!!!"
I most humbly sign, bob

At 10:58am on July 4, 2010, jamie leigh said…: Good luck and best wishes to you and Lily. Prayers:)

At 1:09am on May 3, 2010, Scott Orn said…: that's a really cool thought. thanks for sharing with me. that's kind of why I helped start the network. if Ben could be so strong while going through AVM, I could help a little build the networks. :)

At 11:39pm on April 29, 2010, Julie said…: Welcome Lily's Mom & family!
You're such good parents, & I hope Lily has immediate relief from the treatment that she'll get. God bless you all.

At 8:20pm on April 29, 2010, Kimberly Armour said…: Hi, I am so glad you found this site also. I hope that more mother's will join!
Sending you a BIG HUG!

At 12:52am on April 29, 2010, Scott Orn said…: Welcome lilys mom! Lily hAs an incredible story. I'm glad she is hanging in there. Once she gets through treatment, she's going to be such an inspiration to other kids with TN.