I posted this on Medical, and when I was done, I had a good cry. So I decided to post it over here in general as well, as I know someone will come along and assure me that all will be okay...

Hi All,

Just when I thought Derek was doing so well, he has developed headaches, nausea and is falling all the time.

It started about 3 weeks ago. He was falling and I just figured he was a little clumsy like most kids..

Then he started complaining about headaches and feeling nauseous.

Last Thursday he fell at baseball practice and ended up with a bad sprain and a chip in his ankle bone. So he is in an air cast and crutches.

We went to his pediatrician today and he did some balance, and muscle tests and gave me a referral to have him see a neurologist on Thursday.

He tried to fit him in today, but Thursday is the earliest they can see him.

On the way to the doctors today, Derek again complained of a headache and ended up vomiting all over the car and himself...

You'd think after all I have been through with Derek and Mikayla that nothing would faze me, but I have to admit I am a little freaked out here.

The doctor said he had a few ideas about what it could be, but didn't want to say anything until he saw the neurologist and had an MRI...

Ant ideas about what is going on???

I can't believe this poor little guy has to go through even more!!!

Please keep my little boy in your thoughts and prayers...

Thanks everyone..

~Missy

I will also pray for Derek and the rest of your family.

You hang in there.

Will keep your son in my prayers and thoughts!

I know how much my son means to me, so as a mom, it really must tear at your heart.

Try to keep as positive as you can.

Lishka went through this, if you remember, and my son got the broken ankle bone...(mine were a 2 for one deal...why does Derek think he has to do it all himself? Why wont he share that broken ankle with someone else???)

Anyway, I honestly can say...been there done that...
I honestly can also say I have no answers. I do hope you call Dr. Jones right away, and do get a MRI done to be sure something else is not awry.

HUgzzz to you too. I know how difficult it is...hopefully as our experience was, you are in the last part of the dark, before you hit a good light in your tunnel.

Hi Lymebrat,

Will say a prayer for you and your family.
Wish you the best of outcomes.

We are praying, I feel your pain, see this happen to my wife now and then. Wish I could do
something to help take the pain away.

Asparkle in your eye, a smile on your face
when this time has passed.

I am feeling a little less overwhelmed now and am trying to be optimistic...

Trout, Cindy, Steve & Vic, Crimesoflyme, hwlatin, Jill and DQ

Thank you all for your thoughts and prayers. I truly appreciate them!!

I will give you an update when I can..

Thanks again...

~Missy

I was hoping you would reply. I am a nervous wreck...but as always I am trying to be positive and have an optimistic attitude for Derek..

I sure wish we lived closer so I could come over and chat and Derek could get some reassurances from his buddy Lishka.

He is so tired of being sick. It's hard trying to explain it to a 7 year old...

I wish he could meet some kids like Lishka who have been through this, so he'd know that he isn't the only one going through all this and that he'll be okay...

I have a call in to Dr.J, but I haven't heard back from him. I don't have his after hours phone number, so I'll have to try again tomorrow morning.

Waiting for the good light at the end of the tunnel

We're praying you find answers as quickly as possible.

I know what this feels like, and there's nothing more difficult than seeing our children this sick.

Doc J has an all night answering service at his regular phone number. You just leave message as to what's happening, and they will call you back. I would definately think he or his staff could offer immediate help and insight, and also the Lyme Literate neurologist Doc J works with is very good, and has been working with children for over a year.

He has helped us a great deal.

Big hugs, please know we're all here..and krrp trying to remember you will get through this.

Mo

I am so sorry to hear Derek is feeling down again.

I wanted to tell you Dominic was exactly like Derek in the beginning. He started with falling off a chair for no reason, tripping while walking in the mall, falling down 5 steps at school, tripping on the bus, even walking to walls/doors.

He also had very bad headaches and would go into vomiting fits where he needed shots from the Dr to stop. He was always having a "virus".

Does Derek have trouble breathing? Dominic had "asthma" so they said but once LD treatment started he never had "asthma" again.

Anyway the Quacks at Childrens said Dominic had lost his muscle tone and had MS and needed bone scans and a bunch other test.

I refused the test and we saw Dr C instead. He started Dominic on Clindymacin and Quine(sp) and Dominic has never had any of those symps. again. He was treateing babesis at the time.

Please tell Derek that Dominic says Hi! and he hopes he is feeling better soon.

Aaron falls down alot and gets confused/dizzy. kaitlin has headaches almost constantly - neurologist put her on amitryptline(sp?) and it has helped alot, both kids also get sick to their stomach alot (they can't vomit due to surgeries when they were little for GERD).

I know how scary this is, and I am sorry that one thing after the next keeps happening.

I'm so sorry to hear that Derek is going through such a rough time right now.

Hope you hear something soon from Dr. J.

I will keep you and Derek in my prayers.

I tried to post an update last night but for some reason I couldn't get into this forum. For those of you who are emailing me, I just wanted to let you know that I'm not ignoring you, I just can't open my email for some reason...

Okay on to the update,

Derek woke up at midnight crying that his head hurt. He said it hurts in the middle of his forehead and on the left side of his head.

He is also having trouble balancing. It took me about 2 hours to get him back to sleep..

I still haven't heard back from Dr.Jones. I talked to Tanya yesterday afternoon, and she said that he'd call me last night. I waited for the call until 9:30 and he never called.

No call today either. And I have tried both numbers I have for him and I can't get through.

Derek was suppose to have his neurologist appointment today, but they had to move it until tomorrow.

And of course they never informed me of this until we were in the car on our way to the appointment..grrr.

He also has an appointment for an MRI on Saturday.

He is doing okay today, he said his head hurts a little, but nothing like last night and he hasn't fallen today but has stumbled at least 10 times..

Thank you for the prayers, and please keep them coming..

So sorry you don't have any answers yet.
Waiting & wondering is so difficult!!

I'm so sorry for Derek and your night - I'm sure you both were scared.

Thanks for updating us, I was hoping he'd seen the neuro and there would be some answers (i'm sure you were too).

I know kaitlin has those same headaches and the llmd and neuro says they are migraines, she doesn't stumble, though aaron does alot - I know how scary it is.

I just want to add that Doc J's office is often busy with the care of so very many children that you have to keep trying..once you make contact, they give you full attention.

During the day, it takes pushing redial repeatedly till you get past the busy signals..

In the early PM, Doc J is usually still there..he works seven days, twelve hours a day, often with crisis..and the answering service gets messages to the staff in the evening in extreme circumstances.

I'm sure Doc J would want to know what's happening, and have input as to what could be happening..

Please take good care..

Mo

Please know you and derek are in our prayers.

I am so sorry you didn't hear from Dr. J yet. Hopefully the neuro can give you some answers.

Sure hope the little guy starts feeling better soon.

Derek is nauseous this evening and is still off balance. His head hurts in the middle of his forehead, close to the hair line.

He seldom gets headaches, so I worry...

Still no word from Dr.J. I left a message with one of the girls, and she assured me he'd call me last night, but I haven't heard from him.

I sat by the phone for 3 hours hitting redial this morning, and 2 hours this afternoon. I simply couldn't get through, and now my fingers hurt

Derek's pediatrician is on call tonight, so if anything happens I can take him right in. But I sure would like Dr.J's opinion on this..especially since Derek is having an emergency MRI on Saturday.

I have to take him to the Neuro tomorrow, so maybe I'll get some answers there, and I plan to have the neuro fax his report to Dr.J..

I hope he has a better night tonight...

Thanks for helping me get through this!!!

Goodness, I am so sorry to hear of this setback. Just know that I am keeping you and your precious one in my thoughts and prayers.

I also thought that possibly this link to migraine info from B. would be helpful somehow? Derek's symptoms are listed here:

Migraines: http://flash.lymenet.org/ubb/Forum3/HTML/009477.html

I pray that you will hear from the good doc VERY soon, and that you will find some concrete answers. I know how this must be taking a toll on you as well.

Much love as always,
Melanie

Just incase you read this, Derek wanted to let Lishka know that he is taking the bear she gave him with the baseball necklace she made him, to all his doctor visits...

He said it makes him feel less scared, like his buddy Lishka is with him.

Just wanted Lishka to know this..

Derek had his appointment with the neurologist today, unfortunately he wasn't able to give us any answers, and left me more confused and a little more scared.

He said it could be lyme, could be a mass, could be this and could be that.....

He did a series of tests on Derek and to me, it looked like his balance way off, and that his eyes weren't focusing well.

He also had a hard time getting him to respond to the reflex tests...

But I have no idea what any of that means..

The dr. did order a contrasting and non contrasting MRI, which Derek's pediatrician had already ordered yesterday..so nothing really new to report. It is scheduled for tomorrow morning..

Mikayla is having her very first dance recital tomorrow, and I will have to miss some of it to take Derek to his MRI appointment. But she understands, and my sisters and parents are going to stay and watch the whole show and take her home with them for a little dance party...

Derek felt badly that we will miss some of her show,and asked me if I would take him to the store so he could buy her some flowers to give her at the recital...even sick he is just the sweetest little boy..

now I'm all teary eyed again...

Anyway, he is a little stressed about the test tomorrow as he heard that they will have to give him a shot, and we all know how he feels about needles..so it should be an interesting day.

I am holding up pretty good considering....Thank you all for your continued thoughts and prayers, they really mean alot at a time like this..

Thanks again,
~Missy

I hope MiKayla has a great dance recital.

I also hope and been praying ya'll get some answers soon for Derek. Dominic had the reflex test done and had no reflexes either. This too also cleared up with treatment.

Hopefully not sounding terrible, but when you are faced with MS and other dx. I hope it is just a co-infection doing this to him.

I know how lost I was when the dr's were throwing all those dx at Dominic. Scared doesn't describe how you feel.

Ya'll are always in our prayers but will say some extra ones for ya'll tomorrow.

quote:

---

Originally posted by lymebrat:

Derek felt badly that we will miss some of her show,and asked me if I would take him to the store so he could buy her some flowers to give her at the recital...even sick he is just the sweetest little boy..

---

FRom what you have said here, it only reiterates what you have shown your child through this whole ordeal....

Self Preservation, and respect of others.

God Bless All of You....what a wonderful family you have.

I hope things are going as well as they can today..

I posted a reply on your thread on this in medical..

thought I'd link it here, in case you should miss anyone's responses..it seems you have your hands full as it is..
http://flash.lymenet.org/ubb/Forum1/HTML/025251.html

Mo

Thank you all for the replies.....your posts made me all teary eyed again...(Thanks Trout )

I truly appreciate all of you being there for me and praying for Derek...

When I'm here, I can break down and not worry that Derek will see me. It's nice to have a place where I can take my super mom crest off for a bit...

I wanted to stop by and give you an update...

Derek had a real hard time today with the MRI test and we had to stop the test 1/2 way through as he was crying.

he tried to be so brave, biting his lips and trying not to cry, but when the loud noises started up again, he started crying for real. The tears were running down his little face, and the MRI tech said it was time to call it a day.

He even told Derek how brave he was,and that he knew adults who weren't able to do the test as long as he did, so that cheered him up some.

Derek said he was scared and that the noise hurt his already hurting head, even more. The MRI tech was surprised and a little upset, that the doctors hadn't requested that Derek be sedated for the MRI.

He said most children his age need to be sedated in order to get through both the contrast and non contrast MRI...he never even made it through the first test..30 mins was all he could take.

So now we have to go when the anesthesiologist can sedate him and do the entire thing all over again...poor kid

I did finally get through to Dr.J. I called his office and got an urgent answering service and figured this was pretty urgent..so I left another message and he called me back about 7:00 tonight.

He said it could be a number of things and without seeing him, he couldn't guess...but that if Derek continued to have a headache tonight that I should take him to the emergency room for an emergency MRI..

He also agreed that a lumbar puncture might be necessary depending on the findings of the MRI.

So I am back to square one, Derek is still very unbalanced, has headaches, and is nauseous, and I am no closer to finding out what the cause is...this is so frustrating...

Okay, I just wanted to check in and let you all know how he made out today. Please continue to keep him in your thoughts and prayers...

Ohhh, I almost forgot, Mikayla did absolutely wonderful at her dance recital this morning. Se looked so adorable up on the stage with all the other little girls.

She was so scared this morning, but once the curtains were opened, she did wonderful. My favorite part was when she decided that she didn't like the way the other girls were doing the dance, and did a little solo...it was priceless.

It was a nice break from reality.

Things will get better, he sounds like a strong kid! You and sweet Derek are in my thoughts and prayers.

Not sure if its too late to help or if Derek can take benedryl but the MRI tech said that alot of docs have kids take benedryl for their MRI's.

I am so sorry ya'll had trouble with the MRI. Tell Derek he is so brave. So is mommy.

Glad MiKayla had a good recital. It is so wonderful with everything Derek has on his mind he is thinking of her. That is because he has a great mom that has taught him so well.

Sorry when you did get to speak to Dr. J you didn't get any answers. Hopefully you start getting answer soon.

Just got news about the MRI, please see thread I just posted title Derek's MRI results.
http://flash.lymenet.org/scripts/forumdisplay.cgi?action=topics&number=3&SUBMIT=Go