Rages

[sf_mom]

O.K. for any of you the have children that rage...... HELP.

 

As you know, our younger 3 year old son has Babesia and Bartonella... and suspect Lyme due to co-infections. 7 days ago we started with a third antibiotic to address the babesia/bartonella and our Dr. said expect him to get worse. When our son started on Azithromycin last year November the rages and OCD stopped around Feb (2 1/2 at the time). We started him on Alinia/Azith combo in Sept. and the rages returned but were infrequent and 'some what manageable'. Since starting the new combo we've had two rages that are off the charts and last nights rage was down right scary. I was fearful for his own physical safety as he was throwing his weight around and banging his head into the bed. It was literally impossible to get Motrin into him as he went from 0 to 9 in seconds. So the intensity, length and frequency has picked up and I suspect things to get worse since we are only on day 7. He tends to hit and throw things... I'm sure you all understand and grateful he is only 3. He is a big guy at 42 pounds and makes it difficult for me to lift him kicking, screaming and biting.

 

Any and all suggestions with regard to rages are welcomed to get us through the herxing storm.

Edited November 4, 2010 by SF Mom

[philamom]

SF mom-

I wish I had some advice to give you, as you have given me much encouragement! I can say someone recommended to us Nutramedix "Parsley" for detox--I have yet to order it though, so don't have any personal experience. Hang in there!!!!

[cobbiemommy]

I am so sorry that you are going through this. The only thing I can think of is calling the doc and asking if you can decrease the amount of antibiotic for a short time to give his body more time to detox. Also, water, water, water. This is something I am very scared about when we get to this stage for DS. My prayers are with you.

Cobbie

[SearchingMom]

Dear SF Mom,

 

I got your PM. Thank you so much! I'll send you a separate PM because I have a question.

 

We've seen some good results with 5-HTP (precursor to serotonin), but he's having one really good day and then one really bad day for 6 days now. Since taking the 5-HTP ds11 (who is a very big kid - takes 3 of us to handle a bad rage) has had "calmer" rages. On a scale of 1-10 a bad day used to be a 10. Now his bad days are more like a 7-8. He tries to fight but doesn't have the same energy to sustain it. Instead of high anger he starts crying. On the good days he's a 1-2.

 

Niacin is supposed to be a natural-type sedative. I read in a study from the 80s that it was used successfully with schizophrenics, even to the point of curing some of them. DS11 has some niacin in his B-vitamin, but I haven't tried niacin on its own to see its effects.

 

We've seen more consistent results using magnesium in a orange-flavored powder mixed with natural "kool-aid." DS11 just thinks it's kool-aid without dyes. If he gets argumentative or grumpy, we offer him a glass. Basic magnesium supplements worked, too, but he detected a bitter flavor when mixed with drinks, so we switched to the orange powder purchased at Whole Foods.

 

One other mom recommended to me maybe using peanut butter or a handful of peanuts to help with rages. Haven't tried it yet. Don't know if it works or not.

 

Hope this helps somewhat. I'm so grateful for your PM, especially now seeing what you're dealing with on your own front!

 

Sorry you're dealing with this, keeping you in my thoughts and prayers.

 

SearchingMom

[sf_mom]

Thanks guys... I see our Dr. on Wednesday and will ask about our son if it keeps up. It was by far the worst we have seen but this morning he is a different kid, happy. Geez, I never want to wish time away but I want some of this herxing behind us.

[sf_mom]

Wow, some great suggestions, Thanks. I will check into all of them. I've got some 'kids calm' and will try that in a sippy cup before bed tonight.

Edited November 5, 2010 by SF Mom

[tpotter]

We have found incredible results with peanuts/peanut butter. It took me several years to find out that they are full of tryptophan (precursor to seratonin, which is what 5 HTP is all about.) But, the even better thing about peanuts is that they are also very full of fat, which takes it straight to the brain (my theory). All I know is that it works on my son within 1 -3 minutes, and he is typically back to normal within 5 minutes. Incidentally, after PEX last year, he had an episode that was just as violent, but did not appear to be the same. Afterwards, he said that it wasn't the same, and that he had more control. The peanuts did NOT work on that episode.

 

Now...of course that also involves getting him to eat the stuff when in a full blown rage, because they do happen so quickly (I frequently found that the rage attacks would have tiny lulls, and I would force him...I would threaten to take away something important.) I know that it isn't a placebo with my son, because he HATES peanuts, and it is also the ONLY thing that I have truly found to work. We even managed to get him to go to his room several times without the peanuts...to save everyone and everything, and even after 2 hours, his rages were not calmed down. Then we would finally force him to take the peanuts, and voila...he was better, and literally back to normal...laughing, etc.

 

Now that he is older (he'll be 15 tomorrow), he is able to tell us that he's getting ready to have an adrenaline rush, which we always suspected, because when in full blown rage, he was insanely strong (he would pick up both my husband and myself with his legs simultaneously.) He would not remember anything afterwards that had happened (we suspected seizures, and after eeg testing, we did find seizure activity in the fronto-temporal lobes (we repeated the testing 7 times over several years, and it was always the same...but the rages did not occur at the same time.) But, he is now on anticonvulscents, and they have made the rages easier to recognize...instead of being and instantaneous change in behavior, we would actually have about a 1/2 minute warning, which meant we could get the peanuts and/or he can now be cued to run to his room.

 

But, yes...peanuts/peanut butter...1 - 2 T straight. It works better than 5-HTP pills. When having multiple rages in a day, I give him "preventative" peanuts...I give them a lot during the day. Otherwise, I just give them to him when he is about to have an attack.

 

If anyone tries the peanuts, and it works, please let me know. I am trying to gather other people's experience with this.

[sf_mom]

I will give it a try!!!!!!!!!!!!!! He is sleeping right now and suspect he'll go straight through the night. He has been fine all day but I can tell his body is now fatigue. We don't dare wake him as its when he typically rages... after a nap or late in day.

 

THANK YOU.

[sptcmom]

Well, he sounds just like ME but at age 7 though which has continued untreated and undiagnosed for 30 plus years. I have majorly mellowed thru the years but when Im sensory overloaded thats how I explode still. My rages have been notorious with all my family and friends. Just found out I have congenital Bartonella. oh well.....

I digress

Our LLMD told us high B12 and zinc can even calm down adult schizophrenics as per a Princeton research study. Rages deplete zinc, B12, chromium and manganese. For DS we use B12 spray, and Biopure The Core which has all the essential/trace elements. Valerian liquid from Herbs for Kids is also tremendously helpful. I use Calmes Forte for kids about (5-7 tablets) too just for good measure!We recetly added Ashwagandha, Tulsi tea (original non caffeine) and Chyawanprash from organic India to help calm down and take away stress from the inside out. Our new LLMD ART tested DS for those and gave us two thumbs up and will start stocking them in her clinic too. Lastly the detox baths we do with dead sea salt+baking soda+ginger essential oil+lavender essential oil+whatever other essential oil you want to add ( we vary with eucalyptus for colds etc)+ lots of bubbles for fun. The bath has a serene calming effect on everything including mood and motor tics.

YES, it does take all those things to calm down DS but he's getting those regularly for a while so the rages are not too bad.

 

Another thing out LLMD was happy about was adding the EarthCalm to our house.After the initial adjustment peroid it has helped calm us all wonderously. My husband wears the Earthcalm pendant to work since he works in a high tech Wallstreet office in the IT section so TONS of EMF. The pendant keeps him grounded and calm and he feels great overall. We're trying it out on DH so we can give it to DS for school which has a huge wireless lab and is high tech too.Luckily we don't live close to any power lines or cell towers.

 

She also Strongly recommended mold testing even if there was just a mere suspicion of a weird smell in any area or a tiny one time leak from anywhere. That impacts rages too. I do need to say that both DS and I have genes for susceptibility to mold and Lyme (several of the HLA types).

Jodie

[sf_mom]

Quick update: So, we've had two rages since adding the third antibiotic to our 3 year old's protocol. First rage within 48 hours of starting antibiotics, the second rage one week into treatment and since then we've not had a problem. Although we expect more on the horizon. We are now doing Kids Calm in his sippy cup at night and have peanuts on hand. They actually love the peanuts so much I'm worried they will be gone by the time they are needed. Thanks everyone for the suggestions.

 

I also wanted to add.... we had our first complaint of joint pain from him ever. He woke up this morning running around and he said his leg hurt and I of course asked where and he pointed to his right knee. Something I have noticed with both boys is that the amount of joint complaints increased or started when we treated for Lyme. We are now on day 10 of treatment and those complaints are consistent with his co-infections Bartonella (shortest growth cycle), Babesia (2 - 3 week growth cycle), Lyme (3 to 4 week growth cycle). Also I've noticed he has wanted to sleep a lot more... now he wants a good healthy nap of 2 plus hours and 12 hours at night.

 

-Wendy

Edited November 7, 2010 by SF Mom

[sf_mom]

I just wanted to say.... The peanuts helped this morning and completely side stepped a rage attack. I could tell he was ramping up, I asked if I could give him something to help make him feel better... got the peanuts out and then followed with Motrin and we had no RAGE!!

 

THANKS!