My daughter has been pretty sick with lyme this is something I wrote about it....at the end I have a few things I would love someone to answer
A word of warning about lime disease...
Just thought I would stick a note in here about lime disease. I always thought that if my kids got it they would have this big rash and I would know they had it. Guess again. My 7 year old daughter never had any of the normal symptoms yet has an extreme case of it. I always check my kids and make sure they use bug spray. Well 2 weeks ago I looked at my daughter and noticed her left side of her face was sagging. I took her to the doctors who said....oh I think its from her allergies. I said you don't think its bells palsy ....Bell's palsy is a form of temporary facial paralysis resulting from damage or trauma to one of the two facial nerves. It is the most common cause of facial paralysis... I thought this because my mother had it years ago.
The doctor said no. I believed the doctor to be correct took my daughters allergy meds and left. Well 2 days later, Friday it was worse and I went to the ER with her. The doctor there right away said yes it is Bells palsy. She then called Maine Medical the largest hospital here in Maine and they suggest they test her for lime disease. The doctor asked if she had any of the signs. I said no way I watch for them because my older daughter had it as a child. They tested her blood and yes she had lime. I went home with 3 meds that she had to take in total 9 times a day. Remember sheís only 7! I was told to make a follow up with my normal doctor. I did. We saw him on Monday morning. He right away made appointments for her at an eye doctor, because the bells palsy makes it so she canít close her left eye and they worry about eye ulcers, and to see a neurologist. We saw the eye doctor that day. The good news her eye was great he told me the things to do to keep it that way and said see you in 2 weeks.
On Wednesday we saw the neurologist. He said he wanted to consult with an infectious disease specialist and he would get back to us in a few days. Well by the time we got home our phone was ringing. The doctors wanted us at Maine Medical in the AM to have a spinal tap done on my little 7 year old daughter. We showed up at the hospital at 830 am all ready to get this done and go home. I was petrified and my daughter was calm. GO FIGURE! We were brought up to the Barbara Bush Children's Hospital at Maine Medical Center where they gave her a *cocktail* that they told her not to tell mom about or I might be mad sheís having one! This made Bre, my 7 year old, a little silly. They then brought her to the procedure room and told us about what would happen.
They also brought in a person from Child Life, a group in the hospital that help explain things to children when they are sick and keep them occupied through games etc. The Child Life woman played the game 20 questions with Bre while the procedure was done. Bre got up on the table and had to bend totally forward with her head between her knees. Not a very fun position I can assure you. This little girl was amazing though. She was a little scared but more brave then I have ever been in my entire life. She jumped slightly when they stuck in needles to number her back then just like the trooper she was played the game with the Child Life women not crying or complaining once. I am not sure the exact pain of this procedure but I know I wouldn't want my back tapped like a maple tree. They stuck a large hollow needle into her back and took out spinal fluid into 4 tubes. The fluid for some reason I thought would be creamy colored was clear white just like water. They then sent it to the lab and we waited impatiently about 4 hours for the results. Bad news the lime disease was in her spinal fluid. Meaning it was also probably in her nervous system and fluid around her brain. They then decided how to treat it.
They would give her an antibiotic called Ceftriaxone; this was the drug of choice for this strong case of lime disease. They said that what would happen is they would put a PICC line, A PICC is a long, flexible tube that is put into a vein in your arm and threaded up into a large vein just above your heart. It is used for giving fluids or drug treatment into your bloodstream. PICC stands for "Peripherally Inserted Central Catheter". They would do this Friday morning but for now they wanted to give her a regular IV so that they could start her treatment right away. So back to the procedure room we go. AGAIN my 7 year old daughter is the bravest soul alive sat there like a trooper never complaining. We then go back to her room where her treatment will be started.
They hook her up to her meds and my ex and I decide to run to Wal-mart to get her some cute jammies. My 16 and 14 year old daughters stayed to keep her company. When we return we find out that Bre has an allergic reaction to the drug and they had to give her benadryl to stop it. It was just minor 3 hive blotches but the teams of doctors treating her are worried about a more severe reaction the next time the drug is used. They come in and tell us that this is the best drug other alternative would be a constant IV infusion of penicillin and she would have to carry around a pump for 30 days to get it. Not a great idea for a 7 year old. They also called an allergy specialist, by now she has like 10 doctors on her case, and he suggest that they do a desensitization procedure where they give her small amounts then larger then larger over a 5 hour period to adjust her body tot he meds. We agree to it and go to ICU to have it done where she can have her own nurse watching her to make sure no allergic reaction. Bre was fine about the procedure but scared by the entire ICU idea and had a panic attack.
Once they started the drug though she realized it wasn't that big of a deal and relaxed and fell asleep. They then proceeded to give her 12 syringes of meds starting with a very small dose and getting higher each time. This took 20-25 minutes per vial and kept us in ICU till 1 am. The good news she had no reaction this time and we returned to her room for bed. BED a place she insisted mom sleep with her the entire 5 nights she stayed at the hospital! We were told they would proceed with this medication and watch her carefully for the weekend because her PICC line could not be put in till Monday. OK great stuck in the hospital. We actually found out it wasn't that bad! We were in the Barabra Bush children Hospital in Maine Medical and they really work on keeping the sick kids happy and busy. They have a play room, TONS of arts and crafts movies you can sign out and alit of volunteers to keep kids busy. I must say itís the greatest hospital I have been in.
Monday morning rolls around and Bre is a little nervous because they tell her we can not go in for the procedure and she will be put to sleep for it. We get down to radiology and the doctor there gives Bre another *cocktail* and she starts to lean back all out of it. We tell her we love and go wait in the waiting room. The procedure was to take just about 30 minutes. The longest 30 minutes of my life. When she was done she went to recovery and we were allowed to see her. I must say I was so worried and so entertained. When we got to her she was shivering, a side affect of anesthesia and just coming out of the sleep. She looked at us and the first thing she said was Can I play twister now?, the night before she had played and caused some blood to go into her iv line and it freaked her out but wasn't a big deal, so she was very excited because the picc line was higher on her arm so she could play! She then repeated that question oh 20 times while she was still out of it and stated this goes all the way to my heart? Another 20 times.
When she was totally out of the anesthesia she was allowed to return to her room. Today she would stay till her medication time; take it then go home. HOME a place we dearly missed. They decided to give her benadryl and pepcid to ward off any reactions to the medication because she had one more slight reaction to it over the weekend. We left the hospital and headed home around 730. The next day a visiting nurse would come to my house and teach me how to give my daughter her IV meds daily. I was terrified. This is my child and what if I mess up? The visiting nurse came 2 days and I was all trained. Every day at 4 she sits on the couch for an hour and takes her meds. The hope is that the medication will take care of the lime disease and in turn cure the Bells Palsy but like most medicines itís a wait and see thing. She will be on the medication for 30 days total and see more doctors and specialist and have more blood drawn along the way. She is doing great and I will keep you all posted. Just remember, lime disease doesn't always show up with rash!
Wondering if anyone knows the chances of this being cured all the way and maybe how long the bells palsy lasts. I get from the doctors wait n see type answers! thanks Melissa