sometimesdilly
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posted
his school called me earlier to say he was not OK, so i brought him, gave him aspirin and put him to bed.
he said he had a horrible headache all morning long, and that he couldn't bend his knees- not sure if that is because of the pain he says he feels when he does, or because they just won't bend?
he also has a fever- i don't know if pains and fever are related. what he is feeling with his knees is ongoing, though not constant, and he does get headaches sometimes, but none as severe as today.
Is best guess that this pain = herxing? For those with Lyme kids who have been in tx for awhile, , did you see any predicable worsening of symptoms at set months into tx?
thanks for any input-
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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AliG
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posted
I am SO sorry for you & that poor little guy!
I read the prescribing info for azithromycin & I can find headaches as an adverse reaction, but I can't find anything that I think would result in knee pain.
Have you been able to keep track of his Herx cycles at all? I believe we just passed a new moon, if that helps at all.
I'm thinking maybe herx or build up of toxins? Maybe needing magnesium?
Try putting him in a nice warm Epsom Salt bath and give him some lemonade (use stevia if you can) and see if that helps him at all.
hugs & prayers for both of you, Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Beverly
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posted
Hi Dilly,
I'm so sorry he is in pain, that is very hard to deal with.
Thomas was in a lot of pain before he started abx, but then after the abx he did spend 2-3 years suffering with bad headaches, fever and vomiting spells which I believe was herxing.
I know how hard it is to watch another suffer. At one point I remember thinking..*is it ever gonna end??* and then it finally got better, but it took a while.
Hang in there, I hope he feels better soon.
Posts: 6641 | From Michigan | Registered: Jun 2001
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sometimesdilly
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posted
thanks for the input, Beverly, and as always, for your support.
ali- i don't think he has flu-like symptoms, but in any case, he needed pain relief ASAP-- his face was chaulk white, he was wincing from the pain, and he curled up in a fetal position the second i put him on the bed.
thanks for the suggestions- i'm waiting to see how he feels when he wakes up.
my DH and I agree that we'll take him to the ER if he is still feeling so much pain when he wakes up. i doubt the odds, but who knows, maybe the pain is not related to Lyme.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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posted
ali- duh me. i always use "aspirin" generically, for all those kinds of meds, because i can never remember how to pronounce any of them or which one does what differently, etc.
but yes, we only give him kid's tylenol- that's NOT aspirin, right?
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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AliG
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posted
Phewwww! I'll just delete that.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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bettyg
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posted
dilly, best wishes on your son and you/hubby!
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sometimesdilly
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posted
thanks Betty
actually, he just woke up from a 2 1/2 hour nap (that's a word he almost never recognizes).
his pain is gone. he seems just regular sick. that we can deal with...
thanks, guys.. dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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heiwalove
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posted
dilly, i really hope he continues to feel better. hugs to him & to you.
sometimesdilly
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posted
thanks, Heiwa Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Geneal
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Member # 10375
posted
Actually Dilly,
My son had a herx last month (notable one with headache/bodyaches-no fever).
That is 7 months into treatment.
I try to give ibuprofen instead of tylenol.
It lasts longer and is metabolized via the kidneys and not the liver.
I try to minimize that unless it is a high fever and I rotate tylenol and ibuprofen.
Hope your little guy feels better soon.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Dilly,
I first started having pain when I was 14. The doctors gave me prescription strength ibuprofen, which did very little for me.
When I first took mediation 14 years later that actually helped control the pain (at that point it was vicodin and flexeril) I started to cry because I realized I didn't need to be in such severe pain when I was a child.
If this pain is something that continues and is not just a short herx, I implore you to find a pain specialist who works with children who can help your son find a way to control his pain.
Also, I don't know how old he is, but you should be careful giving aspirin to a child because of the connection to Reye's Syndrome. There was a girl on my little league team who passed away from Reye's Syndrome after taking aspirin when I was a child.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Poor baby. I feel so sorry for them.. .. My 5 yr old Granddaughter just spiked her ongoing fever today and is not jumping around like the normal happy little girl she usually is.
I just took temp after tylenol and it is 101.2. she has been on zithromax 5 weeks this time. So, is it a herx, or her "normal" fever/vomiting that happens frequently?
She says she can't walk when this happens, so we assume it is pain in her legs. We give her Feverall/suppositories/tylenol when this happens as she usually vomits and hates the taste of tylenol and won't take it anyway, and 2 hours later childrens motrin. This way she gets something every 2 hours to keep that fever below 104.
Praying this goes away soon.........which it usually does as long as we can get the vomiting to stop. Will pray for your little one to feel better soon also.
Don't know if this helps any, but this is the drill for our little one. We have taken her to the hospital twice in her life and they never do anything we don't do at home. If he gets too hot, put him in a tepid bath.
Maybe a body massage with some nice organic lotion? Our little one likes that. Alternating the Motrin and Tylenol every 2 hours helps the pain and fever. If he is vomiting go to walgreens or Rite Aid and get Feveral suppositories.
Hugs,
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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AliG
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posted
I was told that when giving alternating Tylenol & Motrin, you need to follow the independent dosing schedules for each. I do not believe that Motrin can be given as often as Tylenol, I may be mistaken.???
I was also told that if vomiting becomes an issue, it may be best to hold off on the Motrin until the stomach settles down, as it is VERY harsh. It is also good to give some food with the Motrin.
How's he feeling today? Better, I hope!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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sometimesdilly
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Member # 9982
posted
hi-
sorry, had to skim really quickly through your replies and suggestions, as DS is home and awake, i'm one floor down, and i don't want to be away for long.
his terrible headache returned shortly after waking up yesterday, but not the knee pain. he has also been running a constant fever that is his usual temp plus 2 degrees. miserable night last night, he woke up many times, once crying, help me help me..
i think i hear to go with ibu-whatever, not tylenol? or at least not tylenol non-stop. will read these msgs carefully when he takes a nap later on.
aniek- trust me, i wouldn't dream of letting my precious son stay in pain.
thanks= dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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AliG
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posted
Start Tylenol
Two hours later give Motrin (Ibuprofen)
Tylenol again at next Tylenol allowed time (by package directions)
Motrin again at next Motrin allowed time (by package directions)
and so on......
Make a chart on paper to keep track of the times you are giving & don't exceed the max dose/day for either.
See how that works.
trying more prayers, Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
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posted
You can also try letting him put something warm or cool on his head depending on what feels better.
For warm a tube sock filled with rice & tied in a knot works well. Microwave for 1 minute at a time until you figure out how long your microwave takes.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
ok, Ali, that does it.
check out off topic for my response to your always and never failing sweetness.
as for my DS. I a concentrating 100% on maling him feel better. went out and bought advil to repalce tylenol - he HATED the taste, but took it.
i just can't help myself from ranting about how unfair it is to my child who has literally never harmed a fly in his 5 years that we have to fight for access to a doctor who will be consent to be his pediatrician now that that he is beign treated for Lyme.
It makes me FURIOUS that i can't count on something as simple as that, especially since we HAVE health insurance and it is costing us up the wazoo.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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AliG
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posted
I'm so sorry you & DS have to go through this. I would take it all away, if I only knew how.
As for the off-topic thing, you're too much, my silly dilly!!
I'm boosting this up for the weekend crowd. Hopefully you can get some input from others who have been through this and have more experience than I do.
I hope DS is feeling better today!!
hugs & more prayers, Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
So sad. Zithro gave me horrible headaches for the first week or two but htey went away. I hope it's the same for him too (though I'm not sure what he's on). Good luck.
I'm no MD but I don't see why children shoul not be given low dose narcotics. Have you considered asking your LLMD about this (maybe you already have), or going to a pain specialist??
My pain specialist helped me so much. It's all about the right drug and the right dosage for each body.
It's terrible to imagine a child in pain. So unjust. I pray for you guys.
Posts: 390 | From Oakland, CA | Registered: May 2007
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map1131
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posted
dilly, I'm so sorry your son is feeling so bad. I have found ibuprofen to the best for treating my headaches that are actually inflammation related.
These headaches remind me of swelling and pressure all over the scalp. Thank goodness it's not an every day occurance with me. But I take 400 mg of ibuprofen every three hours on the days it's going to be a problem day.
Can your son take ibuprofen in higher doses? I can't wait until it's full force, or it takes the second dosing to help. Maybe starting his day off with a child recommended dose would help control it.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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Michelle M
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posted
Dilly, does he have babesia? The headaches are worrisome for that. Throughout treatment my daughter's knees would be really horrible for a while, then better, then horrible. What treatment is he presently on, if any? I'm so sorry for one so young to have to cope with this.
Hugs,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
dilly, we've seen a worsening of symptoms every 4 weeks with our son (it always happens the week before his llmd appt.)
The frequency of him experiencing the 'legs too tired to walk' symptom has decreased to once every few weeks, as compared to 3 to 5 times a week in November.
CNS/behavioral symptoms continue, on an almost daily basis, but, BIG BIG NEWS HERE, my son for the first time in over a year, has started to feel when BM's are coming.
He is in his 8th month of treatment. His symptoms for a long time moved around his body, but seem to have settled into the CNS.
As to pain management, I agree with the piggyback method of alternating tylenol and motrin.
Our pediatrician recommended it when my son ran high fevers for 9 days straight, followed by em rashes. It kept his fever at 102, which is better than the 104/105 that he was spiking when the medicine wore off.
If his leg pain and fevers persist, call your LLMD. I can only speak for my son, but his herxing only occured shortly after med changes, and did not exceed 24 hours.
Best of luck to you. kp.
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Aniek
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Member # 5374
posted
Dilly, I was just saying what I said because a lot of doctors seem overly conservative in treating children's pain.
As a child, I know I was scared of asking for something stronger because my cousin had had addiction problems as a teenager. So I was scared of real pain killers. But over the counter, and even prescription anti-inflammatories, never touched my Lyme pain.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Vermont_Lymie
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Member # 9780
posted
Dilly my friend, so sorry your son was not well. I hope he is feeling much better now and will make a good quick recovery under Dr. J's great care. Thinking of you. Posts: 2557 | From home | Registered: Aug 2006
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AliG
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posted
How's he doing today?
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
OH no....
I just saw this post! So sorry to hear the little one is hurting. It isn't fair. You are right!
&*%^$*(@ the IDSA.
I wish I had answers for you... but I don't. None that will instantly take away his pain anyhow... bless his heart.
I would run this past Dr. Jones office though. They want to know if there is a worsening.. and may want to prescribe or un-prescribe something temporarily.
Please let us know how he is doing..
AND how YOU are holding up! It is VERY emotional to have this happening... so take care of YOU.
AliG
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Member # 9734
posted
any news? any better?
still praying,
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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