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Help - my son is showing symptoms

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Lyme Disease
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Posted 7/23/2015 3:40 PM (GMT 0)
sad

My worst nightmare is my kids suffering with this horrible disease. I was only diagnosed 2 weeks ago, so this is still new to me and Im really just coming to terms with it. But what has gotten me though has been "at least its me and not my babies. I can handle this, but I cant handle watching them suffer."

Well. My 7 year old is now having such severe pain in his joints he is in tears, he has a headache, his neck hurts, fever of 99 and EXHAUSTED.

I know that could be 100 different things and those are all the things I would think first EXCEPT I was just diagnosed with Lyme, I have not been somewhere he isn't (its summer so they are out of school and with me all day), my only symptoms were exhaustion and that god send of a bulls eye rash (I am only thankful for it because without it i would NEVER have even considered Lyme and I truly believe this would have been the beginning of YEARS of misdiagnosis).

I have calls into my LLMD but she has not called me back. What do I do? Am I overreacting to this? If it is lyme what is the prognosis for kids? Does it always come back years down the road? I was an idiot for feeling sorry for myself and my stupid diagnosis. Its really nothing compared to watching my little boy in pain.
Posted 7/23/2015 4:52 PM (GMT 0)
First of all, I'm so sorry, JLM!! I was very lucky in that my kids didn't have to go through these infections, although they did have other issues, so I know how hard it is when your child in quite ill.

And no, you are not over reacting - you should be suspicious of Lyme since you have been diagnosed. And we all know the dangers of not treating when we have an infection. Just don't panic.

Children actually generally heal better and a lot of time, faster than adults. The last time I spent any time reading about this, it was thought this was because they have had less time to accumulate toxins and other infections, viruses and conditions - so there is actually less to overcome for them.

Of course, no matter if the person is young or old, the possibility of a relapse, or reinfection, it ever present. The good news is that because your son is young, he can be taught by you good eating habits, how to detox, and how to treat these conditions so that he will be armed with the information that he needs to stay as healthy as possible - giving these pathogens less of a chance to rule his life.

And you aren't an idiot - you were mourning the loss of your your own health. That's actually a very common and normal thing.

I would say get an appt with your LLMD. Remember that the testing may not work, and get him started on a protocol. If his symptoms reduce or he herxes, then you have your answers and need to keep him in treatment until 2 months past the resolution of all symptoms.
Posted 7/23/2015 5:22 PM (GMT 0)
I'm sorry to hear that JLM. I know how it is to have a sick child. My 27 year old has been sick most of her life and we didn't find out what was wrong until 3 or so years ago. I was diagnosed about a year later and I felt good about the fact that she wasn't going through it alone. Crazy, but I'm able to understand what she's going through.

Youth is on your son's side like Trav said. I wish you both the best! Let us know how things go.
Posted 7/23/2015 5:58 PM (GMT 0)
There are several of us here whose children also have Lyme disease. I often feel like it is harder to watch my son go through this than it is to go through it myself, but he's really doing great with it. When I first talked to my LLMD about my son, he told me how resilient kids are and how well they respond to treatment. I have found that to be true with my son. And I agree with what Garden Peace said about going through it with your child. It is as if we're a team fighting the bugs together. We always take our tinctures at the same time, and I think it makes him feel like he's not going through it alone. The other positive thing I can see is that this is making him a stronger person. He's learning to deal with his anger in a positive way, and he is learning that it's okay to be different than his peers sometimes.
Posted 7/23/2015 6:32 PM (GMT 0)
My daughter and I are both taking the same herbal protocols for bartonella/babesia. Nosila is right. It will help him realize that he is not alone and that you are both working towards healing.

He is fortunate to have a mom who is forging the way. So many kids are dismissed with "growing pains" or as not wanting to go school, and how many of them simply have to suffer along on their own because their parents don't have a clue.
Posted 7/23/2015 6:45 PM (GMT 0)

rowingmom said...

He is fortunate to have a mom who is forging the way. So many kids are dismissed with "growing pains" or as not wanting to go school, and how many of them simply have to suffer along on their own because their parents don't have a clue.

This is exactly what happened to me!
Posted 7/24/2015 12:08 AM (GMT 0)
Thank you so much everyone. What amazing support you all are! Thank you for letting me lean on you.

We were able to get an appointment with my LLMD but not until early August. We decided, while we were waiting to hear back from her, to take him to our pediatrician just to see what would happen. OMG! Now I fell your pain in such a real way! My husband and I were both in the appointment with him, and we mentioned that I was recently diagnosed with lyme and wanted to be proactive about getting our son treatment if he has the early signs of the disease. This doctor looked me in the eye and told me "Well I mean theres a debate as to whether 'lyme' (in air quotes) even exists. I mean most of these people just have fibromyalgia." When we said I had seen a lyme specialist he rolled his eyes and did a raspberry!! WHAT?

My husband and I both just looked at each other thinking #1 I cant believe this is really happening and #2 good thing we know a LLMD we can take him to.

The Dr then told us our son has strep, took the swabs and said in 5 mins we will know. When he came back with a NEGATIVE strep test he also handed us a prescription for amoxicillin 3x/day for 14 days and said to us "I dont want him coming back in 20 years with chronic fatigue and arthritis because we didn't treat it now when we had the chance.". WHAT?! He went from telling me it doesnt exist to telling me it could cause arthritis in 20yrs?! What is WRONG with people?!
Posted 7/24/2015 12:12 AM (GMT 0)
Oh and that dr also told me "we have NO lyme in our area and we dont even have ticks". He needs to talk to our vet, who told me she has seen BOTH in our area. She is much more informed!
Posted 7/24/2015 12:56 AM (GMT 0)
I love our vet. She is the only one I can talk to about K's bartonella, other than the LLMD. Amazing. I was completely dismissed by all other doctors.

Fortunately you know better and your son will heal.
Posted 7/24/2015 1:02 AM (GMT 0)
RONFLBO!!!! You don't even have ticks there? Wanna bet? Oh my!!! I'm so sorry, but that was so ridiculous I busted up laughing when I read that!! Sheesh!! And they say doctors are smart??? shakehead

I'm so very glad you knew what the real truth was when you went it there!!

Your son has wonderful parents that are really watching over him. Keep on doing what you know to be right!! We are here to help the best we can! :-)
Posted 7/24/2015 2:11 AM (GMT 0)
Do you guys know anything about the dosage for kids? He gave us 50mg/kg 3x/day for 14 days. My LLMD's nurse hinted that that is not the treatment they give for kids lyme but didn't want to give details over the phone before we saw the Dr and said it was still good that he was on antibiotics. Just wondering if the dose is usually much higher? Obviously from my interaction with the pediatrician I trust that man as far as I can throw him (with my sore lyme joints isn't very far!) LOL
Posted 7/24/2015 11:50 PM (GMT 0)
So we had an appointment for my LLMD for early next month, but her nurse just called and said we need to come in FIRST (on Monday) to her blood drawn and sent for the Igenex test. And when I said "if he is JUST showing symptoms and probably exposed when I was which is like 2 1/2 weeks ago, wont the test show a negative no matter what right now?". And he said "No, we wont get the results for like 4 weeks so by then it will be 6 weeks". Whoch makes zero sense to me. Who cares gow long they HAVE the blood, I thought the issue with false negatives was that your body wont have time to make any detectable antibodies for at least 6 weeks. We arent doing that new test that looks for the bacteria so its not like his blood is going to be making NEW antibodies in the vial sitting on Igenexs counter for 4 weeks, right?

Im confused. Am I missing something?
Posted 7/25/2015 2:02 AM (GMT 0)
14 days is not enough i would go at least 28 days to try and make sure the bacteria is dead. I was told for 7 years i was stressed and depresssed by 2 doctors till 1 finally diagnosed lyme. Unfortanetly it was late and the infection was heard to cure. My best experience was amicillin sulbactam IV for 2 months. I was almost there when he stopped it otherwise i might not be on this site.
Posted 7/25/2015 2:47 AM (GMT 0)
JLM287 - I haven't finished reading all the posts...but when I read the dose of Amox - I wanted to respond.

The dose of Amoxicillin for children is 50 mg/kg a day - divided into three doses..... NOT 50 mg/kg a day - three times a day.


From Dr. Burrascano treatment guidelines:

Treatment for tick bite only - no rash or other symptoms - 28 days.
Treatment for bulls eye rash and no other symptoms - 6+ weeks.
Treatment for early disseminated - duration based on clinical response.
Posted 7/25/2015 2:59 PM (GMT 0)
Oh no!!! I busted out laughing at what that nurse said!!! shakehead That's terrible.

I would insist on talking to the doctor myself and asking. If the doctor holds this same idea, I would surely question their ability to effectively treat a Lyme infection.
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