Lyme's Meningitis ~ Our Story

A tick the size of a fleck of pepper...a poppy seed... gave us a rough time these days I've been absent from the blog.


Lyme's Meningitis!

A total of 6 days spent in the hospital for my sweet, brave, baby girl. She was diagnosed on Monday the 2nd of July along with a half dozen other kids that came into the A.I. DuPont Children's Hospital.

A week and a day later a friend called me from the car to say the is taking her teen son for a spinal tap as well and it turns out he has it, too! She also tells me that a friend of hers at another hospital says their emergency room is brimming with this diagnosis as well!

Has the mild winter made for a worse tick season?

We never saw the tick, nor did we see the red bulls-eye on her skin. We've learned that many cases are not blessed with that indicator.

Our 7 year old complained about some on and off headaches, but it wasn't until a week past those incidences that multiple symptoms converged. Along with the head pain she also became weak, lethargic not wanting to get off the couch. She ran a slight fever and her appetite decreased, concerning us greatly was the stiffness of her neck. Advil did improve these symptoms but we knew she needed bloodwork done. The local lab took 7 vials, testing for a variety of things. She thought that was the worst thing she'd ever been through....

I hated that I had to ask for the bloodwork to be rushed and was in limbo from a Friday to Monday. The end of the normal range for Lyme's titers would be .9 and she tested at a 5 and so we were sent to the Children's Hospital knowing she had Lymes. There they wanted to confirm the Meningitis, as well, and that is done via spinal tap. The IV was upsetting enough and she was hooked up to heart monitors for an EKG and a blood pressure cuff and a pulsox reader on her finger....but at least her gown was purple! She smiled for the photo to send to her family showing all her gadgets, to impress her brothers.


The Doctors gave her Propofol, "Michael Jackson's drug of choice" the nurse joked, for the best sleep of her life. They allowed my mother and I to stay in the room during the spinal tap. I never wanted to leave her side.

It was hard to watch.

Things I remember...their tenderness. How serious and quiet and respectful the doctors were....How the head doctor positioned her into a ball, a fetal curl towards him and held her sleeping body, encircling her in his arms as the other doctor captured the drips of spinal fluid....my mother, praying the rosary nonstop...jumping to my feet at any perceived motion from her....

...how beautiful she looked sleeping, wrapped in her scapular, Our Lady's image close to her heart, as I waited just a breath away from her for her to wake up after the spinal tap....wondering if she'd feel pain in her back....

The spinal fluid showed elevated white cells, confirming Meningitis and as she awoke it was a blessing to hear she didn't remember a thing. Then it was time to give her the medicine that best treats Lyme's Meningitis. Ceftriaxone goes deepest into the central nervous system. As it went into her IV, they said it might sting a little...at first...going in. Considering her anxiety, with just the concept of the IV and that mention of sting, it seemed all right that she was upset as the medicine continued in. A doctor tried to ask her questions, assuring her she could do this but I watched my daughter begin to panic instead. She writhed, she pleaded that something was wrong. As soon as the hives started showing on her forehead I knew this wasn't dramatics and that I should have trusted her.

She was allergic to the medicine!

Benadryl administered, the hives and upset went away, thank God.  What stayed with me was a feeling that I know my daughter best. In fact, the Doctors agreed and said that's why they like parents there. Before the next treatment, they would confer with the CDC as to whether there was a comparable drug they could use instead. Long story shortened, a bit, they felt this was the best medicine and that the allergy team could desensitize her to the medicine for this course of treatment alone. In a 10 hour procedure they gave her the meds under the watchful eye of the PICU. A little every 15 minutes then a 15 minute break all aimed at building her body up to it and, importantly, pre-treating with Benadryl.

As soon as she received the very first treatment she was able to move her neck and her head pain was gone! The usual course of 3 weeks of IV meds was diminished to 2 weeks in light of her response. But an IV in the hand was not the best transport for that length of time. They had to insert a PICC line to her aorta.

This had to be done in the Operating Room...without me.

Like a scene out of a movie, so surreal, I walked beside her gurney...kissed her...and watched her wheeled away behind swinging doors.

And I cried. I couldn't speak.

I went to a window, looked up into the blue sky and prayed a Rosary and then a Divine Mercy Chaplet. I could pray. I told her I'd be the first face she saw when she woke up. In the space of a day or two, here I was again beside my only daughter waiting for her eyes to open and come back to me.

Despite how hard this was on my daughter...how adultifying it all was....how stressful it was for all who loved her...I thanked God. Over and over. She had something treatable. In a hospital of seriously sick children, she would eventually come home with me. There were examples everywhere that it could have been worse. I knew this was an opportunity to pray more...to trust Him more....

The PICC line gave her freedom to use her hands more easily. As the hospital caters to making this as pleasant an experience as possible for children, they brought her crafts, board games and toys to her room, gazillions of movies and their playroom was a bright spot visit in her day.


She had drawing competitions with her Daddy. She and my mother made rosaries and necklaces from their bead crafts. She beat me in air hockey.

More to remember...the overwhelming support of friends and family...messages on Facebook and email with promises of prayers and words of encouragement that kept me going during sleepless nights. I read them in the glow of my phone...Our Pastor who came carrying Christ on the morning of the 4th of July and blessed her...My mother, often by my side....the friend who came with a St. Philomena relic and blessed my dear girl. (In a surreal turn of events it is her son who now lays in a hospital bed with this same illness, please pray for him.) The friend and her young son who delighted my daughter with presents galore and flowers from their incredible garden...The cards and other presents and greetings at Sunday Mass from those God has blessed us with in our lives....so appreciated, so touching...


She squealed like Dorothy from the Wizard of Oz when her 3 brothers entered the room to visit. "Oh, I missed you the most of all!" (I'll leave you to guess who is the Scarecrow, the Tinman and the Cowardly Lion.)


Now, she is home and so improved. On the mend.

I am administering 4 items into her PICC line once a day and checking her site for infection. I'm gaining confidence with it, but it is nerve-wracking and I am grateful for the home healthcare nurse when she visits. The adrenaline I was running on has worn off...when I was washing the stuck on tape from her hands I felt the weight of it all....all she's been through and in the comfort of my home, I cried. And.... it is so good to be home....

There's no place like home.


The incredible staff at Alfred I. Dupont Nemours is a treasure. Thank God for modern medicine in the treatment of Lyme's disease today. Please join me in praying for the children and the parents still in the hospital.

*Please, also, watch for ticks!

30 comments:

Jennifer @ Crafolic said...

Wow! What a week! I'm sorry for your trials, but it's so wonderful that things are getting better. I've had two kids with lyme (we live in a woods) but we were blessed to have seen a rash. I've often worried that we may one day not be so blessed since tick are so common around our house. That is scary, but in God we trust.

I'm just overjoyed for your daughter and your family that things are looking up. Praying for continued betterment of health.

Suzie said...

So glad to hear your daughter is on the mend and that you are now home. What a trial you've been through, but thank you for sharing. I really had no idea how fast Lyme's could overtake children.

Laura said...

Allison, We've been praying for your daughter every day since we heard. We're so glad to hear that she is on the mend. I hate that when you second guess yourself because you think you should go with the doctors but you really know otherwise. I'm glad it turned out okay. God bless you and your family.

Arley said...

Oh my gosh, I am shaking just reading this. I had no idea that even existed. Living in Cali. we don't really see ticks. I am so grateful she is doing well and will keep you all in our daily prayers! God Bless

Laura O in AK said...

Allison,

I am so glad that your daughter is improving and able to be home for the rest of her treatment. It sounds like quite a 'rash' of this disease out there.

I can still remember having to check the boys for ticks when we lived out east. Thankfully, we don't have that particular issue.

Mary @ St. Anne's Helper said...

Oh, Allison.

Thank you for writing this excellent post. It's a great warning of the difficulties of Lyme disease, and it's a wonderful example of Faith in time of trouble. I, too, am elated that you and your family can now look forward to some rest. My sister had had a giant bout with this herself when her children were little. It was exhausting on her and the family.

I'm praying that you have no setbacks and that your friend's son does well.

Theresa said...

Holy cow! I can't even imagine what you have been through {thinking of my little 8 yr. old}. Thank you SO MUCH for sharing this information! Know you are lifted in prayer.

Our Lady of Mt. Carmel, pray for us.

Monique said...

I can understand your fears. I watched my daughter get a spinal tap when she was 2 weeks old and it was horrible. I was brave while the docotr's were there, but as soon as they left I cried. As a parent, we never want to see our children suffer.
I am glad she is doing better. We will continue to pray for her.

LuAnne said...

Allison,

I am so glad that your daughter is doing well..and so sorry for her that she had to endure such a difficult time!

Thank you for highlighting this most horrible disease, and thank you for sharing your story.

You - and your daughter - and your family - are in my prayers.

~Peace,

LuAnne

elena maria vidal said...

I feel like I have been at your side through this ordeal and I am fighting back the tears as I read this. Thank the Lord your baby is home safe and sound. May she feel better soon!!

Home School Mom: Denise said...

Allison, I worry so much about Tics here in rural Ohio! ...we removed one from Michael years ago, off he back of his neck, and while he didn't show symptoms of anything I always was SO nervous anticipating the possibility. God was really with your daughter every step of the way! Thank you for sharing your story and her life with us as it is so full of trust and encouragement. Many blessings! Denise

Kathy said...

Thank You for writing this post. We live in Georgia and have seen more ticks this year than ever. Just a few days ago I pulled two off my two year old. I'm so glad your daughter is on her way to recovery, Deo Gratias. I just have to mention that picture of your boys visiting your daughter in the hospital is beautiful! I grew up with four older brothers(no sisters).

Kimberlee said...

So sorry to hear your family has been through such trials, but so thankful you are home and your daughter is doing better! Deo Gratias, and I will keep you in my prayers!

Stephanie @ The Brunette Foodie said...

Oh my!! How scary. I can't even imagine. Thankfully she is on the mend.

I do think the mild winter has made for a worse tick season. We live in a wooded area just a few minutes outside of Atlanta, and we have to constantly check out dog. It is very scary.

I hope she continues to heal well!

Josie said...

Moved to tears, dear friend. I am so pained that I was on vacation the week this all happened and was clueless. Thanking God for your strength and your sharing and your beautiful girl. xoxo Jos

Mom2Seven said...

Wow... just wow! I am choked up reading this. May God bless you all and heartfelt prayers for continued improvement and good health! +JMJ+

scmom (Barbara) said...

How scary for all of you! I can't imagine...

Your story makes me want to check my kids every night, though I can't imagine being able to even see that tick! Their hair alone could hide hundreds!

Jamie Jo said...

OH, I'm so sorry you've had such a hard summer so far!!! I'll be praying for a continued recovery. Lyme's disease is soooo hard. We have deer ticks all over the place, always praying for the angels to protect the kiddos from them! Hopefully the heat has taken them away for this year.

so glad you shared and that she is on the mend.

The Little Way said...

So sorry Alison that your little one had to endure this but also very relieved it wasn't worse and that that the medicine has helped. I love the photos, especially the one with the boys surrounding her. Will keep everyone in my prayers. Not only was it wonderful that you captured the "ordeal" in photos, but you also have done a public service. I never knew Lyme's could cause meningitis! Thank God for a good outcome and for good mothers (and grandmothers) like the ones your daughter has!
Joyce

Sarah Oldham said...

Because I knew about this before going on holiday to the mainland (where deer ticks are plentiful, especially on this last leg of our trip - and we've seen them on us!) I've been a bit paranoid . . .but I'm praying about it. And, I'm continuing to pray for your girls healing and recovery. I know how hard it is to watch your child go through medical procedures (and have them gurneyed away from you for surgery - Christian was 3 when he went for surgery so I know). You have my deepest understanding and love!
God continue to bless and keep you, and Mary guide you. Amen.

Allison said...

Every day is getting a little more normal here. I saw my little girl run out and into the arms of the neighbor children who had made cards and posters for her. She missed playing with them so much and she quickly babbled about 100 details to them and kept telling them how happy she was to be herself again.

Brought tears to my eyes.

And it reminded to to get back her and thank you for your prayers. I can't thank you enough and God is so good!

Your kindness is His love in action.

Anonymous said...

I'm very glad to hear that they were able to correctly diagnose your daughter and treat her quickly. It sounds like she is doing well and seems to be experiencing the best possible outcome.
I am a Catholic mom of four young kids: two here, two in heaven that I lost in utero. I had several seemingly unrelated health issues in addition to my miscarriages including migraines starting in my twenties, joint pain especially knees and mind boogling fatigue. My Lyme wasn't caught for years and by the time it was, it was late stage and therefore harder to treat (impossible to cure it looks like) and I gave it to my kids. For some reason, many doctors say this is impossible but the Lyme bacteria is most closely related to syphilis which is known to be passed from mother to child and my daughter tested positive at such a point in her life that she would have had to have been infected with Lyme at 2 months or younger or she got it from me.
The is a lot of controversy about the treatment for Lyme Disease and especially the duration of the treatment. If you find your daughter develops any type of chronic, recurring and seemingly unrated symptoms within the next couple of years, consider seeing a LLMD. Meanwhile, if you want to learn more about the controversy, check out the book "Cure Unknown" by Pamela Weintraub.
Also, you may want to consider requesting the western blot for your sons (and/or you and your husband) because if your daughter and friend's son got cases that bad, any one of you may have a less serious case.
I hope I'm not scaring you. I am trying to give you information I would have wanted to know if I was in your shoes and also information that if you do notice something out of whack, you will be empowered by the information rather than scared as I know I was when I finally got correctly diagnosed.
Sometimes, the path back to health is straight and narrow--perhaps even the vast majority of the time....but if you find yourself feeling that any one of you is not quite 100%, then I pray and hope this post will be helpful. Also, you can check out www.ilads.org which is run by and for doctors who take the more aggressive treatment approach.
Thank you for allowing me to post. God bless you and your family!

Allison said...

Dear Anonymous,

I appreciate the heads-up and the time you took to share it. Thank you!

I will be on the look-out and I pray that in the future medicine can treat your fatigue, join pain and anything your children may also have...so sorry. May God use your suffering to bring great graces.

God bless!

Anonymous said...

Thank you! Your kindness is much appreciated!

Madison ray said...

Hi, I can't believe I am reading your story, my son had meningitis, then confirmed lyme meningitis at aidupont may 2012. just a short time before your daughter. I know exactly what you have gone through and how great Ai Dupont is. Here we are months later and Owen is still having symptoms along with his sister and myself. We are gaving the worst time getting help, as we are military and had to move from dover to Albuquerque new Mexico

Allison said...

Madison, I am soooo sorry to hear that this has never resolved for your family! Prayers!

We are over it here, thank the Lord. I wonder, did you read anonymous' post above? She wrote, " LLMD. Meanwhile, if you want to learn more about the controversy, check out the book "Cure Unknown" by Pamela Weintraub.
Also, you may want to consider requesting the western blot ..." And to check out a website called iliads.org.

I pray you all find relief.

JULIANASMOMMY217 said...

Allison,
I can't believe I saw this blog! My daughter Juliana was at AI Dupont with your daughter. We were in the child life center sitting at a table with your mother in law and your daughter, when your daughter said, "look she has what I have". Your mother in law said, "not everyone with a PICC line has Lymes Meningitis". Well your daughter was correct. Juliana too had Lymes Meningitis! Our stories were so similar amd I had a lovely conversation with your family about home schooling, our children, and just life in general. Your mother in law taught Juliana and I how to make a rosary out of beads, which still hangs on the headboard of Juliana's bed. I am so glad to hear your daughter is well now! Juliana is having a few small issues which I am attributing to the lymes and awaiting word from her Dr. on what he thinks.

Allison said...

Juliana's Mom, it is amazing to hear from you! I wish I could hear that Juliana was cured, too. So sorry to hear that there are some residual issues but glad they are small.

My mother did tell me about your meeting in the playroom. Still floors me how many kids had Lyme's Meningitis at the same time! She loved meeting you and thought you might be considering homeschooling? Please let me know if you have any questions that you think I might be able to answer.

Thank you so much for writing. I am touched that your daughter keeps the rosary by her bed. God bless your family and take care!

sharon-the-love.com said...

Thank you so much for sharing your story. I got bit at the end of February and after a month of being on oral Ceftin, I started to show symptoms again after a month and they put me on IV cefitroxone (sp?). I'm hopeful that this will help and that I don't move into the chronic stages of Lyme so I wanted to see if your daughter had reoccurring symptoms after IV treatment. I'm prayerful and hopeful that this will be cured, I just want to make sure that I am doing all the right things since I'm still fairly in the early stages. Thank you!

Allison said...

Sharon, sorry to hear you were bit!

My daughter has not had any reoccurences, thank the Lord. I truly hope that you are symptom free after the IV!

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