Jenna’s Journey with Lyme Disease

09/04/2021

***Update: this girl was suspended from school and charged with breach of peace in the 2nd degree and assault in the 3rd degree. And referred to the juvenile review board in town. They will contact me with a court date. ****

Hi all- your not going to believe this. Yesterday at school a previous friend of Jenna’s punched her in the head/face, the right side just above the eye, closed fist - and then full hand slap her on the left side of her head. She blacked out after the first and didn’t know she got hit a second time. Until the footage showed it. She didn’t fight back. This girl knew that another blow to the head could literally kill her!! So her progress went backwards -all the hard work she’s been doing these last 6 months since the last one are for nothing. We are back at square one. Her right eye vision is blurry right now, the swelling/bump has gone down, her back hurts, her neck hurts. We are so upset. And we are pressing charges, and maybe even a restraining order- this kid is nuts. One day at a time again. I have no more words for today.

03/04/2021

Hi all - quick update. I want to make some general statements - Jenna is 14 years old- yes she can be trying, cranky, doesn’t keep her room clean, is sometimes disrespectful, and frustrating at times. The normal teenager stuff- do I think that she may use her diagnosis as an excuse ? Yes probably so, occasionally. I have made a conscious decision to let her do her own thing with schooling. This may be hard to understand when I say this but - school is not the #1 most important thing in her life - it is her health - and that comes before school. That statement took me years to learn and understand and it was very difficult for me to get there. Very difficult. Along with that - I gave up my dreams of her becoming a dancer, a softball player and now yes - school. When a 14 year old had been in and out of hospitals, doctors, procedures, therapists etc than any child should ever have to go through. You will probably not understand it unless you’re in it. So when after 2 concussions, we finally get to the eye doctor and they say that basically she can not see straight - she struggles to focus, therefore making her eyes tired after only a couple of hours because they are working triple overtime to focus - it is confirmation that I’m doing the right thing and listening to her. She can’t read!!!! Let me say that again- she can’t read!!!! When the doctor told me this! I cried - I hugged her immediately. There is also no quick fix- months of physical therapy by a specialist! We have to wait for this specialist to do a full assessment/work up to even determine her glasses prescription.
Good news is that we finally got into the Community Health Resources of Manchester for a mental health assessment - for counseling and to take over her depression medication. This is closer than the Hartford’s institute of living. She also has another Botox injection coming up in 2 weeks - these have been helping her headache. This will be the 3rd one. And I’m letting her decide if she wants these. Our insurance will not approve any of the medicine her doctor has called in to the pharmacy for her headaches - so she’s just taking ibuprofen and Tylenol - which is just not working. **A child with a severe enough injury or disability may not be able to do school!** period!! Sorry about the ranting. 🙂

15/01/2021

So - we are in quarantine until 1/22- and I had to reschedule 4 of Jenna’s appointments. No physical therapy, no neurologist, no pain management team and no lower braces- pushed out. Neurologist is Monday 2/25. Pain team now end of February, braces 2/9. Jenna is not happy with this but what are you going to do!

11/01/2021

04/01/2021

We are at physical therapy trying to get some headache relief for this girl! This is dry needling to hit the specific muscles. Then they send a mild electrical pulse into the pain points.

Happy new year to everyone! Jenna is doing pretty good these days. Doing mostly teenager stuff- FaceTiming her friends like 24x7. She spent 10 days over her dads and a bunch of days over her friends during the holidays so she wasn’t bored. She made out for Christmas and her birthday is 7 days before Christmas - so she’s 14 years old now. We are in the process of redoing her bedroom which is taking a lot longer than I would like. But we are 1/2 way there. She is still not doing school at all. So we are looking at a repeat of 9th grade. She still had a headache all the time. We see the neurologist and pain team on the 18th. We are still on the waiting list for counseling at the institute of living. Hoping that it will be soon!!

22/10/2020

Ok - so it’s been a while - a lot has happened. Back in august and September, Jenna had some kind of mental breakdown. I can’t explain it because she never would tell me what was wrong. It began with her treating everyone very crappy - and I mean - just bad attitude, never anything nice to say. It was getting really bad to the point where we started to ignore her. What else do you do, just hoping it’s a phase - she’ll get over it quickly. During these months, her friends had called 211 or the police a total of 3 times because she was saying that she was going to harm herself. One night, she left the house around 2am, walked about half a mile to a boys house (meeting another girl there). We found out because the boys mother came over at 9am the next morning and chewed her out (turns out, the lady is a cop). She ran away a second time - walked for 5 hours and her friends mother drove her home at 4am- I found out much later about this one. The last time she left a run away note I found when I woke up. The police were called and a search for her began. They found her several hours later on her bike in the center of town- which is about 10 miles away. She cried, begged and pleaded with the cop to let her go over her friends house that she was headed too. We all agreed it seemed best for her mental health to let her go over her friends. Little did we know that she would refuse to come home - she stayed for 2 weeks and finally her dad went to pick her up. When she saw the car pull up, her and her friend took off out the back door into the woods without shoes. The police and dogs set out searching. They were found hours later. Jenna refused to go with her dad. So an ambulance was called and she was taken to the hospital and then later transferred to Natchaug hospital. There she stayed for 2 ½ weeks. During the time there - while playing outside - she got hit on side of the head with a ball. Was taken by ambulance to the hospital because of her symptoms of ears ringing, nausea, headache, dizziness. Yes diagnosed with mild concussion. And all her concussion symptoms came back again right back to the beginning of November when she got the first one. Headache all the time, sleep issues, dizziness, fatigue, sensitivity to bright lights and loud noises. So she is now totally struggling with online schooling. Totally struggling with getting up early in the morning. Struggling with focus, holding thoughts, remembering details, double vision, the list goes on. We are back seeing the neurologist and doing physical therapy every week. I think mentally she is stable at this point. She’s trying. It’s very hard for her to do the simplest of things, like clean her room!!!
But I think she knows that she’s on the road to recovering slowly but surely. That’s it for now.

08/07/2020

Botox today - hope it helps - won’t know for another couple of days. I should add that it was very difficult to watch all those needles go into her head! Not sure why people do this cosmetically. Seems so invasive.

02/07/2020

Hello everyone - it’s been a few months. And these were very hard months. Jenna started off home schooling very well for about 3 weeks- and then went straight downhill. Did not finish- but was passed on to the next grade anyways. I’m not sure how that even happened. During this past month she had developed a sleeping schedule of about 7am - 4pm, sometimes 8-5. But sleeping all day. She no longer sleeps at night. She Mostly watches tv and eats. She doesn’t have any electronics -unless she’s hiding something. Some of us in the house think she is and some are not sure. She doesn’t have a phone because she won’t clean her room and she doesn’t seem to care about getting one. But remains stubborn about not cleaning her room. We have not gotten along very well lately - normal teenager stuff - attitude, not minding her own business, not helping around the house, etc. We met with the psychiatrist about 8 times, who asked her to do some easy homework assignments that she did not do week after week. Several times I met with the doctor by myself because I couldn’t get her up. She missed her own promotional ceremony at school, she missed Angela’s graduation ceremony, Father’s Day and lots of other stuff - all because she couldn’t get up out of bed. Ok- onto health- she still has a headache all the time, still all over body aches. Got 2 teeth pulled. Getting braces in August. She is getting Botox injections on Wednesday- they do sedate and because of that we have to get COVID-19 tested tomorrow. I hope the Botox can provide some relief for her. We’ll let you know how it goes.

27/04/2020

Hello everyone- it’s been a while. I’ll start by saying a positive - the pandemic meant that Jenna has to have school from home. They start at 9:30am. She can do that. She has gone back to school full time now. Which is a blessing because she was In jeopardy of not going through to the next grade. We were almost positive that she wasn’t passing. This is actually the best thing that could have happened to her. The best situation for her. She wasn’t doing well going into school for about 3 hours a day. And I was getting tired of the rides every single day. She is still having issues with the concussion. Still headache everyday - all the time. And her concentration and focus is way off. I see it more now that she’s home all day. She needs a lot of help with simple homework. So I paid my oldest daughter to help her when she needs it- like a private tutor. Even though she has extra help at school- it’s not the same as having an actual live person. Jenna and I weren’t getting along very good for about a month now. It may just be normal teenager stuff but I see a change in her that is not good. So she doesn’t have a cell phone or tablet because of it. She was going on social media and not following rules etc. But then even with the schools chrome book - she just never put it down. I didn’t take kindly to not being appreciated when I’m the one who understands her the most and helps her the most. She’s struggles with not wanting to need her mom because she shouldn’t as much at her age but she does - If that makes any sense. So over the past month she had had a nasty sinus infection, a near broken finger and now an impacted molar, with a huge lymph node. Is back on antibiotics. Her braces were put on hold. And we are getting along better. With the amps - she has greater pain and the pain or injury sure does last a lot longer than you would ever expect. She feels her headaches are actually getting worse. Sleeping is still a very large problem. She falls asleep around 4 or 5 am on average sometimes later. We have tried about 6 different meds for pain and sleep at this point and none have helped. That’s it for now. We’ll keep you posted.

17/03/2020

Quick status. We went to the pain team/doctor yesterday. They have increased her sleep medicine. And have called in a prescription for nausea because she often feels like vomiting at night when she lies down. He also called in a nerve block procedure for the headache since she’s had it since November. This won’t be scheduled just yet due to the Coronavirus- no elective procedures are allow at this point in time. We had to go back to the P*P today because her ears hurt when she woke up. She is now prescribed a nasal medicine and an allergy medicine. With her ears - she has Eustachian Tube Dysfunction in both ears. She is still on the prednisone and the antibiotic for the sinus infection and she has not gotten any better since last Wednesday night. I have to say that these doctors appointments are making me nervous about the virus - but so far they have been necessary. At the same time -she is so susceptible -her immune system is terrible. But many of her other appointments have been cancelled. The good news is that she had plenty of time to catch up on her school work.

12/03/2020

This girl!!!! She has missed the past 2 weeks of school. All over body aches, sore throat, coughing, low grade fever, wheezing, bad sinus headache, not sleeping! Flu was negative, strep was negative. Has sinus infection, lungs sound terrible. Started on an antibiotic, prednisone, and inhaler. Oh yeah and still major headache from the concussion in February. Yup - never ends!

19/02/2020

Brief update on Jenna - concussion still the same. Her head hurts all the time. She has mentally taken a step back and spends a lot of time in her room. She may be approaching depression - so we are watching her carefully and have given her a plan of action when she needs to talk to someone. We have also signed her up to receive a mentor from our towns youth services (wonderful program). We have all the same things in place at school - arriving at app 1030am - and working with a tutor. She’s really struggling on focusing and most times can’t seem to get her homework done or take any tests. I’m pretty sure she will stay back this year. She just can’t do tests or homework. She had the flu and was out for 3 days already - and then one other day because she just couldn’t get up out of bed. We just finished physical therapy to help her with hearing and loud noises. I think she is sleeping better and says she wants to go back to full time school. However we tried that once and she couldn’t get up. But will keep at it. We go back to the pain team in March. She is now going to counseling at the pain team every other week. We are still seeing a neurologist, still seeing holistic doctor, still going to chiropractor as much as we can get there. She has set a goal for herself to try to get back to playing softball - but it’s baby steps to get there. This is how I know she has AMPS brought on by Lyme disease because it has been exactly 3 months since she fell at school and hit head. Her pain level is just about the same as it was in November. We’ll keep you posted.