HealingWell
Search Close Search
☰

Child with Lyme

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/17/2015 3:37 PM (GMT 0)
Hi all,

I posted a few months back inquiring about my daughter's issues and my LLND's recommendation that she be tested. She exhibits ADHD-type symptoms: frenetic energy, hyperactivity, trouble sleeping, highly emotional, defiant, little to no impulse control, very forgetful, very loud, etc,. My house is always in a state of chaos whenever she's not in school and it's very draining, especially because my Lyme causes me to avoid stimulation (it's like nails on a chalkboard) and she's seems to need as much stimulation as possible all the time.

Anyway, you gave me a lot of helpful suggestions and advice, and as I was trying to post an update last night to my post, I managed instead to delete it.

We finally got her tested - I waited because I just wasn't ready to face the results if they were positive. Her test, of course, was positive. We believe I passed it to her while I was pregnant, although she did get a tick bite when she was 5. However, she has exhibited the symptoms that were a red flag to my LLND since infancy (or to be more specific, each symptom appeared when she was developmentally able to exhibit it).

My LLND treats children, so we'll be seeing her next week to start treatment, but in the meantime, I was hoping I could get some questions answered and advice by other folks with kids with Lyme.

- I imagine it's a good idea to change her diet, but she's only 8. How strict does it need to be? I'm gluten, dairy, soy, corn, refined sugar and seed oil free. My LLND wants me to be Paleo, but it seems like such a commitment to me. I'm tired a lot and I can't seem to have a lot of "I'm too tired to cook" days when eating Paleo. Now, I can smear some almond butter on a rice cake and cut up some banana and call it dinner. Anyway, what are your kids' diets like?

- If I did give it to my daughter while I was pregnant (and it wasn't the tick bite she got at 5), does that mean with 100% certainty that I gave it to my other two children (younger than my daughter)? Or is there a chance I didn't?

- Most of her symptoms are behavioral (except for the odd complaint of dizziness and numbness in her legs), do any of you know of any strategies to deal with it? If it's the Lyme that's causing her to behave the way she does, then it's beyond her control. So punishing her does no good (which I already knew), but how do convey the message it's unacceptable, especially because I don't want my 4 year olds to learn that it's ok to do what she does?

- How do you tell your child about this? Especially if you have it yourself and they've how sick you are? She has commented multiple times that she never wants to get this disease. How do I tell her she has it? I'll be emotional, I'm sure, and I imagine that won't help the situation.

- Is it odd that if I've had it long enough to give to my 8 year old that my husband hasn't gotten it (we had him tested as well)?

Any other advice to offer?

Post Edited (Jasperilla) : 9/17/2015 9:59:56 AM (GMT-6)

Posted 9/17/2015 6:27 PM (GMT 0)
I'm so glad you got clear test results, and that you have a LLND to treat your daughter!

Diet is such an individual thing. I thought I was doing the right thing by getting my son off gluten and switching from dairy to almond milk. Well, later he still seemed to have some symptoms of food intolerances, so we had him tested. It was a blood test, and I believe the lab was Genova. Anyway, it turned out that gluten and dairy weren't problems, but almonds, walnuts, peanuts, eggs, green beans, basil, pineapple, and a few others were. Some of these were things that we would have never caught with an elimination diet. He has been off these things for long enough that it was time to try re-introducing some of them. I let him have some basil a couple of days ago, and it messed with his behavior, energy, and BMs. So we won't try that again for a while.

When it comes to talking with her about it, keep the conversation optimistic. Point out some of the symptoms that are most troubling to *her* and tell her that the doctor found a reason for those symptoms. Let her know that with treatment, those symptoms will get better. Be honest, too, that she won't feel better overnight. Help her to know what to expect.

Behavior issues are a tough thing. I think the key is to provide structure, not punishment. The main behavior issue my son has is rage. When it happens, I send him to his room to just let it out. I close the door and let him scream and scold me as much as he needs to, just to let it out. Once he's through with it, he know's it's okay to come back out, and then it's fine. I know your daughter's issues are different, so it's hard for me to say what would work best for you.

I'll be praying for you. This is a hard thing to go through, but it will get better.

P.S. I'm sure you know this already, but please do everything you can to help her detox.
Posted 9/17/2015 6:40 PM (GMT 0)
I wanted to comment on your question about passing it on to your other children. No, it isn't certain that your other two children got it from you during pregnancy.
It's not 100% passed on.
Posted 9/17/2015 7:27 PM (GMT 0)
At least you found out she has Lyme before too much more time passed. My daughter started showing signs that something was up, but nothing serious looking. I figured it was just age related things and as she got older, I thought it was hormonal things. As she got older, more symptoms showed up, but nothing that seemed too serious. Some of our alternative treatments slowed it down at least.

She got diagnosed 3 or 4 years ago since we just happened to go to a doctor that was Lyme literate. We live in an area where it's not widely known and I didn't know a thing about it until we were tested. A naturopath actually diagnosed her through a dark microscope, but I didn't trust it and I didn't know how serious Lyme was.

I may have given it to her for all I know. My husband seems fine, but has never been tested. I don't think he'd be doing all he is if he did have it, plus it's a stress on him with 1/2 the family sick. Our other daughter seems fine and just graduated from college this year, so the tough program she chose, and the college diet and lost sleep, etc. would've been enough to take her down

I think you should just tell her without mentioning you might have passed it on to her, since you don't know for sure and there's no reason to get her upset with you for something that might have happened. You don't need that. She might ask you if that's what happened, so you can just tell her you don't know and leave it at that if she will let you. It can be a hard age if hormones are involved. Good luck. Let us know how things go and what we can do to help.
Posted 9/17/2015 7:29 PM (GMT 0)
Thank you both! It's such a relief to know that my twins might be free of Lyme. I do wonder though, if one of them has it, I imagine both would...

That's very interesting about the diet, Nosila. I also wouldn't have thought of some of those foods as potential allergens. I'm glad you were able to find out what foods trigger him and avoid them. Basil must be a toughie, it must be in so many things!

Yes, the detox thing. I have methylation issues and don't detox very well, so I'm not exactly sure what to expect with her. I'm pretty nervous, to be honest, that treatment is going to make her worse than she already is. :-(
Posted 9/17/2015 8:11 PM (GMT 0)
My son and I both have had a lot of neuro issues and methylation issues, and detox has been tough for us as well. Epsom salt and peroxide baths really didn't seem to make a difference for my son. The thing that helped us both the most is a Beyond Balance product called Cognease Detox. I imagine the Jernigan detox formulas would work just as well. We use the Cognease because that's what our LLMD carries. But, really, it has helped us both immensely. My brain fog has cleared up, and his behavior has improved. He's better at paying attention and focusing, and he has had improved energy.
Posted 9/17/2015 8:16 PM (GMT 0)
That's great, Nosila! I take some BB products; I'm surprised my LLND hasn't mentioned it. I'm on Itires, which I *think* is also for detox, but I could be remembering wrong. I'll have to ask her about it.
Posted 9/17/2015 8:19 PM (GMT 0)
Good, I hope it helps!
Posted 9/18/2015 4:11 PM (GMT 0)
I'm sorry for what you are dealing with and I can completely relate. Both my kids tested positive (ages 8 and 11) and what I once thought was asymptomatic I now see as symptoms. I've yet to start treatment for them but am most likely going with Cowden protocol since that is what I am on. I too believe I passed it to them in utero.

When I asked my LLMD about diet (because I'm quasi-Paleo) he said you have to balance the stress/fighting with your child and the benefits of the diet. Food has always been a battle with my kids. I tested as gluten sensitive on genetic test and also intolerant of dairy, eggs and soy (based on stool test from Enterolabs). Also C677 heterozygous for MTHFR. Since I'm in the midst of treatment, I don't have the energy to battle my family about diet. My strategy will be to remove gluten first rather than go cold turkey with everything. Anything to get inflammation down will be a help. Not sure I can get rid of sugar though. I also plan to be more conscious of real food vs processed stuff...I'm in the process of clearing that crap out of the pantry now! Non GMO, Organic, nothing fortified with folic acid, etc

I've been giving my kids a multivitamin with 5-L-methylfolate (Dr. ben lynch says its good for all kids even without gene mutation). I've not tested my kids but I suspect they have it too so I figure a multivitamin with the correct form of folate will help their methylation pathways therefore helping detox once treatment starts.

As far as talking to your daughter, I think there is some good advise here. Be honest but don't go into too much detail (until it is necessary). My kids hear everything I say so last week when my son said he didn't feel good, he started asking me about the moon (it wasn't a full moon...but it was a new moon...who knows if its related). I just don't want them to use this diagnosis as a crutch to make excuses for themselves therefore making it harder for me as parent to know what symptom is real and what is an excuse to get out of doing something I ask them to :)

Praying for your family.
Posted 9/18/2015 4:51 PM (GMT 0)
Ha ha ha, Nosila - if you had gone through the elimination diet I did, those things would have been caught!! That's how I found out that I was allergic to soy and MSG and a few of it's derivatives!

I did want to say CONGRATS!! And agree with what Girlie that it's not 100% that any of your other children have these infections. So much of this has to do with the individual's immune health, gene mutations that can prevent proper detoxing and other things.

As for how to explain to the other kids that her behavior is not what will be allowed by them - just tell them that they aren't the same as she is. They aren't sick like she is and that once she's well again, that won't be allowed by her as well (if it applies).

Kids understand a LOT more than most people give them credit for. Encourage them to ask questions!!! The better they understand these things, the easier it will be to protect them from getting these infections as well!
Posted 9/18/2015 5:11 PM (GMT 0)
Traveler, thank goodness for testing! I probably could have handled a diet like that myself (for a while), but I'm soooo glad I didn't have to do that with my pre-schooler!
Posted 9/18/2015 5:37 PM (GMT 0)
It was pretty intensive, but it worked well. And no, I surely would not have wanted to do that with a small child!! smhair I'm not up for that many food fights - actually it's the cleaning afterwards that food fights require!
✚ New Topic ✚ Reply