posted
My 3yo son has been on abx for 2 months. He got a positive lyme test about 1 months ago. He had bloodwork done again on Wednesday, but it isn't back yet.
He had a great weekend last week. Fri, Sat, Sun, I thought he may be on the road to recovery. Each day of the week he seemed progresssively worse again.
Back ache, eyes hurt, fatigued, getting up in the middle of the night, not napping, low grade fever the last few days, and on and off appetite are the symptoms of the last two days.
I spoke to the NP at the LLMD office today, because she said on Tuesday that it appeared the oral may not be working so we may need to do IV next. The bloodwork wasn't back, so I asked about what to do with the symptoms returning as far as the weekend and IV.
I completely forgot to mention we would be out of abx tomorrow after the morning dose. He is taking two right now. We left the conversation that I should probably go to an ER with his records today or tomorrow if he continued with the sypmtoms, and if not, make an appointment with a pedicatric ID doctor and pediatric neurologist first next week if not.
He seemed the best that he has this week the last hour he was up tonight, and now I'm worried if I don't go to the ER and get started on IV he will not have any meds until Monday.
I'm honestly dreading the IV. The NP said I could expect them to want to do a lumbar puncture to see if it was in his spine, and that with the IV would come regular blood work.
It is so hard holding him down for this stuff, I know he can't understand... I'd appreciate any thoughts on my next move regarding the abx. I'm so torn on what to do...
This evening I was able to get him outside for the first time this week, and coaxed him into running and playing a little while so that makes it tempting to wait it out over the weekend.
I'm also afraid of what doctor I could get in an ER. The last one I saw, told me "lyme was up north" and my son probably had a virus.
I'm sorry if this post is all over the place. That's about where my head is now.
-------------------- Mom of Five - two had lyme and coinfections - one had RMSF - Still hoping for broader awareness of tick junk in general medical practitioners. Posts: 79 | From Virginia | Registered: Jun 2008
| IP: Logged |
posted
Please find a real LLMD!!! Your son can continue on oral abx for now. No need to go to the ER for an IV, as they are VERY unlikely to give him treatment by IV!!! VERY!!!
Can you call the NP and get more oral abx until you can see the dr later??
There are many good LLMDs in VA.
I would not allow them to do a spinal tap. They are very invasive and unlikely to show Lyme.
posted
We just saw the NP on Tuesday again, because the LLMD isn't taking new patients. She (the NP) spoke with the LLMD tonight while we were on the phone) I guess I can try to get someone on the phone and get a script called in.
This is all making me sick.
Thanks for the hugs. I feel so badly for him. When it is time to "give up" on the oral abx?
-------------------- Mom of Five - two had lyme and coinfections - one had RMSF - Still hoping for broader awareness of tick junk in general medical practitioners. Posts: 79 | From Virginia | Registered: Jun 2008
| IP: Logged |
posted
I got completely well on 4 yrs of oral abx. I'd had undiagnosed Lyme for more than 40 yrs. There's no rush to IV unless he is VERY ill and not improving.
How is he doing right now??
Sorry if I panicked you about your dr. It sounded like they didn't know what they were doing.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Today was actually his worst day this week. He was actually really good last Fri, Sat, Sun, but progressively got more fatigued and more symptomaitic as this week went on.
Today, he got up at 5am (used to sleep until 8 or 9, 12 weeks ago) tired and fussy, not much appetite. When I decided he/we had to have a nap, he layed down and started about his back, and knees hurting and then began carrying on about "dots" hurting his eyes when he shut them. He also was running about 99.7 today and yesterday.
I finally got him out of the house on his own two feet at about 7:30pm. He didn't want to move all day, (just sucked on his thumb and held his blanket, which used to stay in bed during the day, pre-lyme) and then wanted to be carried outside.
Any other child this may be normal, but he was thrilled when the new baby arrived 6 months ago, so he could be a "big" boy like his 4 yo brother.
Any reference to being "little" is offensive to him and he is ordinarily very independent and doesn't want to be treated as anything other than a "big" guy.
I got him to drink a good bit of water this evening and he seemed ok after I had him outside for a bit.
I stepped away from this all for a bit, and am planning to call the oncall dr. in the a.m. and get a phoned in script to hold us at least until the bloodwork from Wednesday comes back.
I'm kind of thinking that what I've read on the babs sounds like him too, even though his first test for that was negative.
I was inclined to say no to the lumbar puncture based on what I'd read too, so I appreciate the confirmation. I don't want him stuck one more time than he really needs to be, and if we do end up going an iv route, I highly doubt going in through an ER is the best way to get there.
Thank you for walking me through this, I'll hopefully get more meds in the morning without a problem.
-------------------- Mom of Five - two had lyme and coinfections - one had RMSF - Still hoping for broader awareness of tick junk in general medical practitioners. Posts: 79 | From Virginia | Registered: Jun 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Blood work won't be very helpful. Lyme is like no other in that regard. As per Dr. Burrascano in a seminar that I saw on video, it may be helpful but you can't count on blood work along the way as in other infections.
Blood work can show if the liver is doing okay, or other things, but it won't be so great in showing if lyme is still there or not.
--
Ditto on the "NO" to lumbar puncture. It's not been shown to be of very much value in lyme. And very painful and if the patient does not lie still for a long time afterward, severe headaches can last for days or over a week.
A 3 yo would have problems with that.
Seriously, if your LLMD / NP wants to do a lumbar puncture to "see if it's in his spine" is this really a LLMD ?
According to most ILADS' researchers, lumbar puncture is a waste of time and I know no doctor who would put a 3 yo through that.
I am so sorry and do hope you can find the help you need.
I was kind of shocked that she said I could probably expect that if I went the er route. I also thought it wouldn't be needed since we already have a positive dx.
With the bloodwork, I got the impression that the IGM or IGG (not sure which) could indicate if the infection was still being recognized by the body as new, or if it was beginning to make antibodies to it as an older infection?
Didn't make alot of sense to me, but was something they wanted to see and use as a possible indicator of whether or not the orals were working. ???
-------------------- Mom of Five - two had lyme and coinfections - one had RMSF - Still hoping for broader awareness of tick junk in general medical practitioners. Posts: 79 | From Virginia | Registered: Jun 2008
| IP: Logged |
bettyg
Unregistered
posted
check my profile for 2 kids llmds in your area!!
my heart goes out to you and your little one!! xox
posted
My three year old daughter (now 5) was put on oral antibiotics and antimalarials and we had some periods of time like you where we thought she was getting worse. It was likely a monthly herx when new spirochetes were "born" and "died".
She did not need IV (I did). And she's SO SO SO SO MUCH BETTER now. I would not let a little set back push you to something like an IV under someone who is not lyme literate. Instead a very long course of orals may be in order.
Also, we regard to taking him off or missing doses- In my lay opinion-- I would rather him miss a few than be traumatized by a spinal/iv esperience which could set him up for a lifetime of fear of doctors/etc.
Go with your gut, mom.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
| IP: Logged |
posted
Thank you Betty and Cats. Betty I emailed Dr. G regarding an appointment. Cats, how long was your daughter on the orals before you were sure she was improving?
I thought about the herx and totally agree about avoiding trauma if possible. I just want him well...
-------------------- Mom of Five - two had lyme and coinfections - one had RMSF - Still hoping for broader awareness of tick junk in general medical practitioners. Posts: 79 | From Virginia | Registered: Jun 2008
| IP: Logged |
posted
It's really not making sense to me that an LLMD would refer you to an ID doc or a neurologist. LLMD's know that the conventional doctors will not treat Lyme properly.
It also does not make sense that an LLMD would send you to the ER for IV meds.
I agree with the NO's to the lumbar puncture.
I have had Lyme for 35 years and am getting bette with orals. We were talking about IV when I had severe cognitive involvement. When it's in the central nervous system like that, many times IV is best, but in my case, we treated bart first and those symptoms went away.
I wouldn't jump in with IV with a three year old. I'd go see Dr J in CT.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
![[shake]](graemlins/shake.gif)
![[Eek!]](eek.gif)
Please find a real LLMD!!! Your son can continue on oral abx for now. No need to go to the ER for an IV, as they are VERY unlikely to give him treatment by IV!!! VERY!!!![[group hug]](graemlins/grouphug.gif)
for your son!!!
![[Smile]](smile.gif)
Printer-friendly view of this topic