4yo DD has Lymes... (a little long)

[PrincessNoelle'sMom]

We just found out yesterday that my 4yo dd has Lymes disease. Let me preface this by saying that she was a completely atypical case. Never had a bulls-eye, spent most of the summer at the beach where there were no trees, deer, etc.

About 2 weeks ago, she had a "sunburn" look on her face, just below her eyes and began running a low-grade fever. After about a week or so the rash went away and the fever broke with a half-dose of Ibuprophen. Monday she woke up with the "sunburn" rash again and had a low-grade fever. During this time she was complaining that her legs hurt and she would rock from one foot to the other and then sit down every few minutes. I thought it was growing pains, very typical at her age. I immediately took her to the pediatrician who ran a series of blood tests and yesterday we got the results that she was positive for Lymes.

I am so upset - I know that I am fortunate that she was diagnosed and can be treated for this. But my dd has been through so much medically since her birth and she is a happy, fun, good natured little girl.

We are leaving for Disney in less than 4 weeks and I am concerned that she will have a tough time standing in lines. We took insurance this trip and I will cancel if I need to, but I think being the kind of kid she is, she'll do her best to get through it. I just don't want to push her and ruin her vacation.

I always bring a stroller for her, so getting around the parks won't be too bad, but it is the long lines when strollers are not allowed that I am concerned about. Guest services said that they will "evaluate" her condition to see if there is anything they can do. I have already requested and offered to pay for a preferred room to ease the walking to the main building and pools, etc.

Just wanted some feedback and a little moral support from my fellow DISser's. Would also love to hear if anyone has a child with this condition and the outcome of their situation.

Thank you SOOO much for taking the time to read this.

 

[PEANUT1]

Giving you some hugs I think she'll be ok to go. It could be a really great distraction too. Is she on oral or intravenous antibiotics? My husband had it about 12 years ago and had a course of antibiotics for a month and has had no problems after.

You will know what to do. Trust your instincts as a mom. As a nurse I can tell you that you won't harm her by going. Just listen to her and go at a slow pace and you will have a wonderful time.

 

[PrincessNoelle'sMom]

Giving you some hugs I think she'll be ok to go. It could be a really great distraction too. Is she on oral or intravenous antibiotics? My husband had it about 12 years ago and had a course of antibiotics for a month and has had no problems after.

You will know what to do. Trust your instincts as a mom. As a nurse I can tell you that you won't harm her by going. Just listen to her and go at a slow pace and you will have a wonderful time.

Thanks so much - it is wonderful to know that you are a nurse can can offer such a valid opinion as well as personal experience. I appreciate the hugs as well.

She has just started oral antibiotics for 4 weeks. She has to see an infectious disease doctor on Wednesday and we will know more then.

Thanks again for your support

 

[Ellester]

My DH also had Lyme about 9 years ago. He also never had the bullseye rash, we have since read that the rash is not as common as people think. Thankfully, he was diagnosed early. We knew he had gotten a tick bite and when he started feeling so achy and bad asked specifically for the test. We didn't live in a Lyme area (NC), but he was bitten in Virginia. Anyway, he was on doxycycline (sp?) for several months but was totally cured. He did get a nasty yeast infection in his mouth from the antibiotics killing all the good bacteria in his system as well. That was pretty gross.

You may want to get a note from your doctor if she is feeling weak before you go. You may be able to get a Guest Assistance Card, kind of like a handicapped permit. Kids are pretty resilient though, so hopefully with the stroller she'll get enough rest. I'm sure you'll have a great time. It's great she was diagnosed so early, it is so nasty when Lyme becomes chronic. Good luck!

 

[ntink]

I agree with the advice of the previous posters but wanted to add that your DD will probably be much more sensitive to the sun if she is still on the antibiotics so you may want to apply sunscreen every couple of hours.

My DH had Lyme's (which he got from a tick bite while installing our daughters' swingset) and fully recovered after the course of antibiotics.

I hope your daughter has a speedy recovery.

 

[oldbay]

Sorry to hear about your DD. I got Lymes a few years ago and had to go on antibiotics for 3 weeks. One thing I do remember is the doctor emphasizing that I had to take my dosage twice a day at the same time and not to miss a dose. He told me this was very important with Lymes or it may not go away. It may help to set your cell phone alarm or something as you may lose track of time, so to speak, and will not want to miss a dosage. Especially, if your DD is still taking medication on vacation.

I know I felt better pretty quickly with the antibiotics, a couple of days was all it took. I did have the bullseye, high fever, thought I had the flu until I found the tick bite!

I hope your daughter is better soon!

 

[jessica52877]

Definately use fastpass and try to ride the favorites at non peak times. I agree, listen to her and don't try to over do it! I think you'll be fine, she enjoy the trip!

 

[mickeymaker2003]

OP--I just sent you a PM.

 

[PrincessNoelle'sMom]

Thank you all so much for your kind words, ideas and support. It really means alot to me and one of the reasons that I love these boards so much.

Thank you also for sharing your own personal experiences with this disease. I am still very curious if anyone else has a child that has been diagnosed with Lymes and how they have handled the situation.

 

[bellebud]

many to you!! It's probably harder on you than on your dd. I see you've been to disney before, and I'm assuming you'll go back again, so just plan to take it really easy this trip if you need to. Do all the things first that are a top priority for your dd each day, this way if she poops out, she'll still have really enjoyed herself each day.

Really try to hit the parks at opening, use extra magic hours and fast pass. If you do that, you won't be waiting on very long lines. Maybe even try Tour Guide Mike or something for this trip, since standing in lines might be an issue. I've never used him (well, I signed up once, but didn't end up *using* the touring plans), but I've read great things.

Good luck and so glad you found it early!

 

[okeydokey]

My son had Lyme's when he was five. Like you, we caught it early. He didn't have the bullseye either. His manifested itself as Belly Palsy. The right side of his face was paralyzed. Talk about panic. Anyway, at the ER they gave him a shot of antibiotics and then a three week course to take at home. He felt better right away. Good luck to you, I'm sure she will do just fine.

 

[keetmommy]

You should be able to get a stroller as a wheel chair if you don't believe she can stand for long periods of time. Our DD is going through Chemo for a benign brain tumor and we knew she couldn't stand for real long periods of time and we did that so it helped a lot!!! Good luck and hope she feels better soon..

 

[PrincessNoelle'sMom]

My son had Lyme's when he was five. Like you, we caught it early. He didn't have the bullseye either. His manifested itself as Belly Palsy. The right side of his face was paralyzed. Talk about panic. Anyway, at the ER they gave him a shot of antibiotics and then a three week course to take at home. He felt better right away. Good luck to you, I'm sure she will do just fine.

Thank you for sharing. I am sure you were very scared! I'm so glad your ds is doing OK. Makes me feel very lucky.

 

[PrincessNoelle'sMom]

You should be able to get a stroller as a wheel chair if you don't believe she can stand for long periods of time. Our DD is going through Chemo for a benign brain tumor and we knew she couldn't stand for real long periods of time and we did that so it helped a lot!!! Good luck and hope she feels better soon..

I'm so sorry to hear what your dd and family are going through - my thoughts and prayers are with you. Not that it makes it any easier, but good thing the tumor is benign. Thanks for sharing and offering this suggestion. After reading your post, I'm sure she will be fine and I have much to be thankful for.

 

[Principessa1284]

If you bring your own stroller, you shouldn't have a problem bringing it even where stroller's aren't allowed. When you go to guest relations, explain that she can't stand up for long periods of time due to her lymes disease (a doctor's note really isn't necessary), and she is too small for a wheelchair. Ask them for a "stroller as a wheelchair" pass. This is twofold - it is a GAC to show when necessary, as well as a sticker that goes right on your stroller. This way, you won't have any trouble taking her right up to any of the rides, and she can even sit right in her stroller at the shows.

I hope that's helpful!

 

[Schmeck]

My son had Lyme's when he was five. Like you, we caught it early. He didn't have the bullseye either. His manifested itself as Belly Palsy. The right side of his face was paralyzed. Talk about panic. Anyway, at the ER they gave him a shot of antibiotics and then a three week course to take at home. He felt better right away. Good luck to you, I'm sure she will do just fine.

I think it's just a typo, but isn't it called Bell's Palsy? I'm glad your son got better, that must have been so scary!

 

[luvwdwfla2]

My DS5 had lyme when he was 3. We did know he had been bitten by a tick. He never got the rash either. About 3 months later he woke up during the night complaing his arms hurt. First thought he slept on them funnny. Later that day his arms still hurt and he complained about his head hurting. Was fine with some motrin. But after the weekend we went for bloodwork and it was lyme. It came back kinda strange, Something about not really an active case ( we think because he was on antibiotics some time in between for ear infection) It was not long enough to really get rid of lyme. So he did the 3-4 weeks of antibiotics. He was fine after that. But now he is very aware that ticks make you sick so he reminds us to do tick checks. He must remember not feeling well.
The other thing to remember is if she gets tested again,( if you have another lyme scare) I guess they test that they still have the antibodies. So I guess some numbers the doctors have in the last results they compare to see if it is active lyme. I'm not a doctor and it hs been a while so check to clarify this info.
Hope she feels better soon

 

[snickerboo]

It hope your dd is feeling better soon. I didn't know sometimes the rash doesn't develop (I was bit by a tick this summer and kept looking for the rash! I guess I know better now). I would get a doctor's note and head straight to guest services so that, hopefully, you willl get understanding form the CMs about her condition.

Hope you have a good appt with the specialist. It is sooo hard on Moms when the kiddos get sick.

 

[bookwormde]

One simple thing which is overlooked by many doctors is to make sure that your child taking a top quality vitamin during and after the treatment as it will help with her natural immune system which seams to be a big help with fighting it off and keeping away reoccurrences.

bookwormde

 

[PrincessNoelle'sMom]

Once again - thank you all for sharing your stories and kind words and support. My dd has been on antibiotics for two full days and does seem a little better - although she is still tired. I am anticipating that it will take a while to get her system back in order. I am awaiting the appointment with the specialist on Wednesday and am very hopeful for our upcoming trip.

I couldn't have gotten through these first few days without all of you!

I will update again after our appointment with the infectious disease specialist - in the mean time please keep the ideas and stories coming - I really look forward to them.

Thanks again!