Behavior problems with 5 year old son - Herx?/Alinia -

Hi! New here! My son has some major behavior/regulation problems (constantly hitting my husband and I, cannot concentrate [diagnosed with adhd], etc.). Many people believe he has Aspbergers, however no one has diagnosed him. Now, the Lyme doctor (also a well known integrative medicine doctor who also specializes in autism, ADHD, etc.) thinks his behaviors may stem from Lyme.

Why?

4 tick bites in the last year and has tested positive for Lyme. He was put on zythromax the first two times and ceftin and zythro the last two times once we found a lyme doctor. As soon as we took him off his 6 week ceftin/4 week zythro treatment we noticed an immediate shift. Whenever he was on ceftin he was a totally calm, loving kid, and able to concentrate so well. He did what he was told (without arguing!) the first time not the tenth! Within a day or two after ceftin ended we saw his concentration evaporate, explosive behavior return, and his overall lack of regulation sky rocket. Help!

Lyme doctor is sure it's Lyme still and thinks there are lyme cysts. My son is now on Alinia and has been for 1.5 weeks along with the Ceftin. He's also on strong probiotics along with other gut and detox supplements. It took him 1.5-2 weeks the last two times from the start of Ceftin to exhibit good behavior, but now we aren't seeing it yet. Slightly better concentration, but he's still so explosive and can't regulate. Is this a good sign that his poor behavior could be a Herx reaction? Hopefully we will see improvement soon, but I'm wondering if the Alinia-new medicine (cyst buster I'm told) can have a longer worse Herx reaction? Is what we are seeing more severe herxing? It's so hard seeing a child be completely amazing on medication, then take such a negative turn, especially when he has such a hard time communicating what his body is feeling like. Is anyone else in this boat? Help, help, help! I'm so overwhelmed!!

Hi Mommaonamission- you are in good hands here. There are some incredibly knowledgable people on here and a number of them are also treating their children. My son is 4 and we are treating Lyme-Bart and suspected Babesia. He is currently on Azithromycin/Cefdinir and we're doing a modified Cowden protocol with Banderol, Samento, Houttunyia, Burbur and Parsley. We also have done some "pulses" of Alinia this fall. Whenever my son seemed out of control or started night waking - one of his herx symptoms - we would focus more on detox stuff. Epsom salt baths, Biomat and "green" juice. Can you up the detox routines and see if that helps alleviate some of the behaviors? Hang in there and know you are not alone. Hugs to you. -GB

I would think pulsing the antibiotics 4 or 5 days on and then off for a couple of months would help. That kills the bacteria that are easy to kill and then the days off allows the "cyst" forms to open up and repeating the treatment kills some of those. Talk to his LLMD about that.

Thank you for all the support! I got each tick tested except I realized after talking to my mother that my son had one on him around 1.5 or 2 that we did nothing about. (!!!!!) That is also the time he completely changed and I literally did not make the connection until now. I looked back at the testing we did on the ticks and they were only tested for borrelia (2), anaplasma and babesia. Until I started looking a little further and found this discussion group I had literally never heard of Bartonella. I'm assuming my son's doctor looked into all of the co-infections, including Bartonella. I know the ticks we had tested were positive for all of the co-infections (one or more of them), and I thought he was treated for all co-infections. Bartonella never came up. Would that have been tested on the Western Blot test? I will check this all out at our next appointment on 1/11. Is there anyway of truly determining that's what he has?

He is taking Ceftin for at least 3 months and also alinia for 3 days (twice a day) then start again every 2 weeks. Will he have Herx every time we start back on the alinia?

I have been reading much more on detoxing and have found that we are already doing some. Doc has him on lots of detoxing supplements, but I've learned more now: thank you!! Is detoxing something I should do all along (like as much as possible every day)? Or should I increase during re intro to Alinia or Herx reactions?

My son is gluten free, grain free, dairy free....should we also try an alkaline diet? Any luck with that? Rowingmom, I think the link you sent me mentioned an alkaline diet could help with Bartonella.

Our doctor mentioned herbs, but really wants to start with antibiotics, then transition to herbs. Is this common, or should I ask about starting those sooner while still on Abx?

I have read so much about autism, leaky gut, ADHD, etc., because that's what I always thought was wrong with my son! What a twist in the road this has been. I feel completely Lyme illiterate so thank you for answering my silly questions. No one seems to understand what the day in the life of a mom seeing her son struggle so much. I am so grateful I have found this resource!

mommaonamission said...
Is there anyway of truly determining that's what he has?

Testing for these infections is notoriously unreliable. Even more so, there aren't tests available for all the various strains of Lyme, Babesia and Bartonella and new strains are being discovered every few months.

Lyme and Co's are diagnosed clinically - based upon symptoms.

Sometimes, a diagnosis will be made during treatment because the patient herxes with symptoms that are common in particular infections.

mommaonamission said...
He is taking Ceftin for at least 3 months and also alinia for 3 days (twice a day) then start again every 2 weeks. Will he have Herx every time we start back on the alinia?

He might herx when he goes back on Alinia but each herx will hopefully be less "dramatic" than previous ones.

mommaonamission said...
Is detoxing something I should do all along (like as much as possible every day)?

Yes

mommaonamission said...
Or should I increase during re intro to Alinia or Herx reactions?

Yes :)

I continued to add to my detox protocol throughout treatment. It's only now that I'm nearing the end of my treatment that I don't need to use as many detox methods as before.

It seems many of us become "backed up" a bit with toxins in the earlier part of treatment. An effective detoxing protocol will slowly lower the level of toxins....and eventually keep up with it.

We are constantly exposed to toxins in "regular life" so it really makes sense for everyone to do things for detoxing.

mommaonamission said...
Our doctor mentioned herbs, but really wants to start with antibiotics, then transition to herbs. Is this common, or should I ask about starting those sooner while still on Abx?

Your doctor is like my LLMD and my 20/20 hindsight very much regrets not taking a few herbs while I was on abx.

One of the most important herbs anyone fighting these infections can take is Japanese Knotweed. It is highly anti-inflammatory and can cross the blood brain barrier. It can "extend the reach" of antibiotics.

It certainly wouldn't hurt to talk to your doctor about what kinds of herbs he uses and how he transitions patients to them.

Please ask any questions that come to mind. There is so much to learn and we all understand the feeling of taking a crash course with these infections. We can help fill in blanks, refer you to reliable sites and let you know whether another site's information is accurate or not. We're here for you....we need to do something with all the research we've done. lol

More awesome info! Thank you! We do eat strictly organic foods/grassfed meats, lots of veggies, etc. I've been hyper vigilant about my son eats and try to model it for him too. I believe my doctor is on the ILADS list. He is also a specialist in autism, ADHD, allergies, etc. I read his hit book and realized he wasn't too far away so I knew we needed to see him.

I have a lot of questions for him, including incorporating herbs in his protocol! I am finding over and over again from my online reading just what you said here: herbs with Abx. Looking at his supplements I think we are including some: milk thistle comes to mind. I came across cistus tea. Is this something I should look into? I'm also adding other things to his diet, like cholera, turmeric, dandelion greens (or is the root really what's best?), lemon and anything else I can add without having him add to all the supplements he is taking. Any specific foods I can add to his diet that will help with Bart? It's so weird to me that he could have this but there's no way to know for sure. How do I know he's not autistic? I guess because he has responded well to Abx? Is it enough to be on Abx for 2 months after symptoms disappear? I see lots of people on them for so long?

One other thing I am dying to know - when he eventually is off of abx, will his behavior continue to be good (assuming it eventually gets there) or will the Abx cause leaky gut and we'll see behavior problems? That's what we saw this past round so I wish there was a way to know for sure if it's Lyme (etc) or just leaky gut from coming off of abx? Assuming the doctor was correct, is there anything I need to do when that time comes to stop abx or will a herb protocol take care of that and help the gut heal so we don't see the behavior issues?

Thank you for the heads up with the full moon! He's already bonkers because Christmas! Honestly though, I did cranio sacral therapy on him 3 nights ago and I could feel his body was just going crazy inside. Today I gave him another session and he felt much more at peace. I worked today so did not get to spend much time with him, but when I did see him, he seemed much calmer. Maybe the Herxs are finishing up.

We start Alinia back up on Christmas. Is there anything I can do to prepare myself, like beef up on a certain food/detox method?

Thanks again!

You are doing so many great things for your son. The diet and lifestyle pieces are huge for us. Our experience with my son was antibiotics for 5+ months. We had symptoms resolution after about 3 months and continued another couple months. We then stopped antibiotics and started titrating up on herbals. After 2-3 months we had a relapse - we think of Bart symptoms mostly. So we went back on antibiotics (continued herbs) and that's where we've been for 4 months. We have again had complete resolution of symptoms. We're hoping to come off antibiotics again early January. In the meantime, this last month his doctor has me building up his immune system and as soon as we finish antibiotics, we will be healing his gut (I'm pretty sure he has yeast at this point). I'm hoping that by continuing to boost immune system, healing his gut and continuing periodic detox, he can maintain/completely and permanently overcome. Many people these boards have said its a marathon not a sprint. I realize that now - I had hoped my sons recovery would be a sprint. A couple specific things that have helped us with detox has been lemon water (thru a stainless steel straw) and Tradtional Medicinals Dandelion root tea. We are also very big on bone broth in our house. (Organic) Chicken, turkey, grass fed beef bones. We drink it like tea almost every day. Also probiotic / fermented foods (sauerkraut, pickles, beet kvass). It sounds like you are so in tune with your son so you are already a big step ahead. I had to learn to really trust my "gut" and develop my Momma instinct after having so many regular doctors telling me I was just a nervous mother and that my son was fine(ugh don't even get me started). That has also been an important part of helping my son heal - to understand what his body needs and when - I'm still working on that but it's getting better. :) Hugs to you.

mommaonamission said...
I believe my doctor is on the ILADS list. He is also a specialist in autism, ADHD, allergies, etc. I read his hit book and realized he wasn't too far away so I knew we needed to see him.

How do I know he's not autistic? I guess because he has responded well to Abx? Is it enough to be on Abx for 2 months after symptoms disappear? I see lots of people on them for so long?

One other thing I am dying to know - when he eventually is off of abx, will his behavior continue to be good (assuming it eventually gets there) or will the Abx cause leaky gut and we'll see behavior problems?

Honestly though, I did cranio sacral therapy on him 3 nights ago and I could feel his body was just going crazy inside.

Glad you have a good doctor - it generally takes so long to find someone who will believe and work with you.

As a mother you will know whether or not your child is truly autistic. You have those glimpses that others don't; you see the child inside that is waiting for you to help them to emerge.

K's bartonella symptoms had only resolved to 80% when our LLMD decided to stop abx treatment. She had used so many different abx (Bactrim, biaxin, rifampin, azithromycin, minocycline, plaquinel, malarone, tindamax), and so many combinations over 2 years with no getting past the plateau, so the LLMD essentially gave up. It was then I initiated herbs, found the asymptomatic babesia, and got K to the place she now enjoys (99%).

We have used gelatin, bone stock and fermented vegetable to help her gut as well as copious probiotics while she was taking antibiotics. K never relapsed from leaky gut that I have noticed and has been off abx treatment since Apr 2013.

You mention your son's body "going crazy inside". K was always like this. Constantly moving, wanting to be upside down, never still - I had the feeling that she was uncomfortable in her body, like you sometimes feel when you have the flu; like no matter how you position yourself you are not comfortable and you keep searching and searching for that position.

Twice during treatment I saw her become still and comfortable. The first was 25 minutes after her first dose of malarone (1.5 yrs into abx treatment). I dosed her and we set out for dance class. about half way there I looked into the back seat and there she was, just sitting in the back seat with her hands in her lap looking out the window. I was amazed; I had never seen her just sit and observe. I should have made the connection to babesia/protozoa at that point but I didn't. I didn't see any other improvements with malarone however and the uncomfortable movement resumed when malarone was discontinued.

The second time I saw the stillness was when I started using Buhner's babesia combination tincture CSA. Amazingly, again the same result I saw with malarone, but this time with a big improvment in executive and cognitive function as well. Within a week her teacher called saying that she was now suddenly grasping math concepts that she had not earlier, and in fact, more quickly than her peers. He was amazed.

K has never re-experienced her previous bartonella/PANS symptoms, however she (and I) remain on low maintanence doses of the herbal bartonella/babesia protocols.

I understood it to be a minimum two hours (I've also read 3 hours...but that's difficult) - on either side of anything that you want to be absorbed...ie food, supplements, medications.

I take mine at night. Is it possible right before your son goes to bed to give the charcoal to him? For instance, if he eats dinner at 5:00. And bedtime is 8:00 you could give it to him right before bed.

If he has meds to take in the evening...try to get them in right after dinner...would that work?

The other supplement that needs to be taken on an empty stomach - maybe an hour before dinner? If he eats at 5:00, give him the supplement at 4:00. (Most supplements/meds - an hour before eating is fine...)

If he needs a snack between lunch and dinner...try and give it to him around 3:00.

It is difficult planning it all...but if you make a schedule up...it will be easier.

No, the detoxing baths do not have to be done away from the supplements/meds.

Update - we are now three months+ into ABX treatment and we have seen up and down behavior. It seems cyclical, but most recently lots of spinning, noise making (airplane sounds, rattle snake spitting sounds in other peoples faces, etc.). I just got a note from school letting me know that they have seen a shift in my son since around Christmas with increase noise, and physical aggression towards other kids in his kindergarten class. Again, constant spitting sounds, and unable to control himself during transition times (lining up in the hall). Gack!

We've been seeing a child psychologist all along and he is insisting that we be consistent with discipline and send him to time out every time he becomes physical. We've been doing this for months now and it really hasn't seemed to make an impact. I really don't know how to handle the behavior problems. It just doesn't seem like being strict is working. I feel in my heart that he is just crying out inside, needing love instead of coming down hard on him. Any advice? He is so filled with hurt inside. I know there's this gentle caring boy inside. We saw it for three weeks this fall!!!

For a few days or even up to a week and a half we see a sort of "shift" in his behavior. Hitting and physical behavior at home seems to decrease, he is more gentle, focused and kind. Then bam! The reverse happens and we see outbursts of rude behavior, unable to concentrate, repetitive sounds, spinning, and physical behavior along with anxiety. I am so overwhelmed, wondering if we are treating the right problem. And if we are, since this has probably been in him for 3-4 years, does he need a more drastic approach like IV? What happens when you just don't see consistent improvement, or you you get your hopes up after a good week thinking you turned the corner and then realize you are really back to square one in this what seems like cyclical behavior. Help!

And one more thought - why, WHY can't we get back to where we were in the fall? I am telling you, he was a completely different kid when he was on ABX in the fall. Loving, focused, patient and kind. He didn't explode. He listened and did what he was told. How can we get back there and why did it happen that time and not now? So, so upset!! I want my boy back!!!

Gosh, I am so sorry he is still having difficulties. It seems to take forever to see progress sometimes. I'm pretty new to Lyme so I don't have the knowledge of others on this board.

Our 14yo has had it a few years but was just diagnosed this fall. He definitely had some neuro signs last spring and had just started upper body tics this fall just before he had a + test. The doxy cleared those out the first week he was on it - 200mg a day/30 days. Another parent on a Yahoo group is going to be trying what her LLMD recommended which is also daily doxy for her DS who has serious neuro issues too. Our DS is now seen by an LLMD and they recommended Pinella (Nutramedix) for nerve stuff. Have you tried that yet?

I know that this healing process and the resulting Herxing has meant more symptoms coming out in our DS. We are doing as much detox as we can.

I hope you and your family can get some ideas to try here. I have tried many suggestions given to me here for DS's various issues and DS has always found one that works. I wish the same for you.

Rowingmom - can you give me a link to your story and how you helped K? Is your child better? I'm desperate to read parents experiences and the journey their kids went on (and also how you kept your strength and patience throughout). What did you do for discipline when K was out of control or acting crazy silly (if you experienced any of this). Were you tough on him or did you give him support?

It's really hard for me to tell what is a Herx reaction and what isn't. Nothing really changed this past week in our routine (including medication/supplements), but for some reason W has been off the wall for about a week. Blabbering, making noise, etc. Should I be giving him charcoal, Epsom salt baths, etc. daily, even during good days, or only when he is off?

I mentioned Bartonella to our doc at our last visit, and he added in Zythro (since that was part of what seemed to work so well in the fall) along with the omnicef that he's been on for two months. He was on ceftin and pulses of alinia in December, but that was a dister too.

So yeah, I would love to hear your story. Can you provide a link? Thank you so much!

yancync said...
his LLMD does treat for all major co-infections whether they show positive or not.

Good. K went through 2 years of antibiotic treatment for bartonella with various combinations of biaxin, rifampin, plaquinel, minocycline, azithromycin, malarone and tindamax, only to make it to 80% improvement because she had an underlying, asymptomatic, negatively testing (through Igenex) babesia sp. infection that was not being properly addressed.

Once we hit the babesia (species unknown) with herbs she improved significantly within a week. Her teacher even called me to ask what I had done because her ADHD had resolved and she was grasping math concepts that had previously been difficult for her.