trintiybella

I know people give motrin for PANDAS inflammation and Lyme (I think) and I was wondering if there is inflammation with viruses too and does motrin help? Thanks!

My child takes 500mg at bedtime. No upset stomach with it. Lots of luck!

Sorry. She's 14. I called the company on dosing. Thanks powwow.

I am currently giving 5 teeny scoops of custom probiotic d-lactate free. Is this considered a large dose or do some of you give even more?

I want to add also that my REALLY SICK child is doing MUCH better since stopping antibiotics for Lyme/Bart. We are treating for viruses with lysine and she started to sleep and is not so agitated! Best we have ever seen her. We also have valtrex to try but I'm not messing with what I have right now. Have u dealt with viruses Anna?? Sorry about your appointment Anna. Don't think I'm going to see him!

My child was always like this with everyone. It was too much work for her. Much too hard. I do whatever is easiest on her. Puts me in tough situations at times, but the situation is MUCH harder for her, if I don't work to help her. Makes for a pretty lonely social life for me! Oh well!!! Good luck Anna!! Ophelia - your very helpful!

My child has horrible reactions when I start/stop things, but I want to move on to next step with her. Dr. T. wants us to treat for viruses. Is there a danger in just stopping bactrim and minocycline suddenly that you know of?

Where did you have spinal tap done Pandasphilly? Did they find anything else while testing?

http://upperroomwellness.com/custom_content/c_158963_restless_leg_syndrome.html

As you know, my child never sleeps. Up for days. I just read an article that really triggered something for me. I have always wondered it it were a parasite that was keeping her up, since I saw her sleep on black walnut oil once. It is not the whole picture, but could be piece of the puzzle. She also has low ferritin and RLS. Can you read this link and tell me if I may be onto something. Oh, and I forgot to mention that my girl had a fructose malapsorbtion test done and the GI doctor said he never saw the "fructose" travel so quickly through someone in his career. He thought bacterial problem. What do you think about this???? http://upperroomwellness.com/custom_content/c_158963_restless_leg_syndrome.html

I found this too. I think it is saying something different than what you described Norcalmom, but very interesting. http://upperroomwellness.com/custom_content/c_158963_restless_leg_syndrome.html

I found this:: "small intestine causes inflammatory cells to increase production of IL-6. This cytokine, in turn, is known to boost levels of hepcidin, a protein that decreases iron absorption and transport. Bacterial overgrowth in the gut could be causing the problems and natural, anti-parasitic therapy targeting the stomach and small intestine might be the solution. RLS behaves differently from other autoimmune diseases, as this condition will increase during pregnancy. RLS is seen commonly, in patients with Fibromyalgia and Irritable Bowel syndrome." DO YOU GET THE PART WHERE THEY SPEAK ABOUT BACTERIA IN THE GUT AND THEN THEY GO ON TO SAY DO ANTI-parasite treatment. Bacteria is not a parasite, right?

I found this:: "small intestine causes inflammatory cells to increase production of IL-6. This cytokine, in turn, is known to boost levels of hepcidin, a protein that decreases iron absorption and transport. Bacterial overgrowth in the gut could be causing the problems and natural, anti-parasitic therapy targeting the stomach and small intestine might be the solution. RLS behaves differently from other autoimmune diseases, as this condition will increase during pregnancy. RLS is seen commonly, in patients with Fibromyalgia and Irritable Bowel syndrome." DO YOU GET THE PART WHERE THEY SPEAK ABOUT BACTERIA IN THE GUT AND THEN THEY GO ON TO SAY DO ANTI-parasite treatment. Bacteria is not a parasite, right?

So that would be a hematologist you see to figure this iron thing out? My child number is 17 and lots of psych. Symptoms. Wonder how they figure out whether you should use or not???

Can you tell me at what point you had it done? and tell me about your experience please?

Very interesting. I am concerned about such low levels "11" but it certainly makes her insomnia much worse. It is not herxing cause it never goes away. I have stuck with it for a long time.

Sometimes it is exhausting repeating myself over and over about my child's condition, and explaining why screaming back at her when she is really psychotic does not help. I know this is not a venting board, and was wondering if we should start a group just for venting??? It is tough sometimes doing this alone and nobody understanding what we are going through. It's ok to get mad and vent, right?

yes, checked babesia, ehrlichia or anaplasma. negative. thanks and i will look for least constipating iron< since constipation BIG problem here! her iron has been low since i think 3, before we started down the meds> road. are the ones that you use constipating? i give her liquid right now and concerned about teeth staining since shes not able to brush teeth most of time.

Who did she try to pm?

Good suggestion. Thanks!

OMG. would this be a dream come true Pow Pow! Take vitamin C at same time? I guess its for absorption, right? I have something called floradix (spelling). I was going to finish bottle first. Did your doctor recommend the Mykids10?

Was also diagnosed with RLS. Starting iron. Any type better than other?

My child could not talk about her illness. She would be aggressive if I brought it up because she had so many intrusive thoughts, that it actually "hurt" to listen to me. The probiotics calmed her as did vitamin D. In the past a very low dose of seroquel really helped too. I feel for you. This is so hard when they close down. Good luck Anna!

It makes her super agitated when I give the amount that gets her to sleep. Her heart beats really fast, can't catch her breath and she bounces off the wall. If I go low on it, it does not put her to sleep.

LLM...I don't think that's my child's signature your looking at. She doesn't have autism and chiari. She did test possitve for lyme and bartonella. Are you looking at trinitybella? Also LLM, how you said "She clearly has active Coxsackies and HHV6 IgG seems to suggest this may be active as well" above. How do you know its an active virus. What do I look at for this? She is currently taking valtrex. Too soon to tell if it's helping. Thanks for your help.