Hopeny

I would also skip the ER unless there is an immediate risk of danger to your son or your family, hurting himself or someone else. Most ER docs are not PANDAS educated (though they are learning) and there is an unfortunate current situation where Boston Childrens Hospital got temporary court custody of a PANDAS child and put her on psych meds, took her off abx etc. On the Saving Sammy Facebook page there is a thread of PANDAS friendly hospitals if you want to have as a backup plan. I have been short twice of bringing my daughter to a hospital and fortunately both times antibiotics quickly brought her back. The waiting I have found to be one of the most frustrating parts of all this, waiting for doctors appts, bloodwork, abx to work etc but just try to hold on with the belief that everything will be ok. Personally I would stop the multi vitamins. In my daughters case I found they made things worse, not sure why. I think you posted on another post that the Lyme test came back negative. When things settle down it might be worth re-visiting this, most PANDAS docs and regular peds do not know how to read this test and it may be a factor, especially if you have a major flare after a steroid burst. Lyme is extremely complex. It causes immune havoc which is why there seem to be lots of kids with multiple infections. Many of the PANDAS treatments also treat Lyme so it's just something to keep on your radar. Good luck and it's almost tomorrow

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DD is about to turn 9 and currently on RIfampin/Zith and supplements. Integrative MD suggested Burbur to help with Bart die off, I ordered from Nutramedix and see that as it is a tincture it has 20% alcohol. I was going to give DD 4 drops/day - I realize that the amount of alcohol may not even be measureable but just am thinking for a minute about this because I know the abx combo she is on can be tough on the liver. Has anyone else given this to a child? any thoughts?

LLM I started with the MTHF a few days after the bloodwork was drawn, so at the time the mutation was totally untreated. Our daughters seem to have similar issues. Based on another post you put up my DD's dose of MTHF seems high, 5 MG. We started Bart treatment around the same time as the MTHF. DD has had some rages but its hard to know if its from Rifampin or the supplements. I need to sit down and read all of your posts and get my head around all of this. We have started seeing Dr O and really like her so far. DD also has yeast and mold, Dr. O said that could be a major factor in her psych issues. although I have to say, since I added back Vitamin D and started using smoothies for the supps she seems a lot better and the rages are almost gone. DD is supposed to take 3 NAC/day. I am going to start with 1 and go from there.

I avoided vitamin D because I had heard it can exacerbate Lyme, then another post I read on this board around the relationship between depression and low D prompted me to try it. DD had low Vit D, 29 I believe with a normal range starting at 70. I saw a huge mood improvement, I even gave it to her when she was having a sad episode and 30 minutes later she was back to normal. I upped the dose from 400iu to 800iu, 5 days a week. DD's levels tested recently went up to 59. In our case it really seems to help but DD was low. DD is just shy of 9 and around 64 pounds.

Thanks all. The NAC was prescribed for low homocysteine, low normal cysteine, DD has one copy of 677T and we are using MTHF for that. I am going to go low and slow here, and hope this works for her. Glad to know there are cheaper alternatives!

My daughter has joint pain, along with some muscle and bone pain from Lyme and co. Typically the joint pain is in mutiple places but not bi-lateral, eg left hip and right knee. The exception is the soles/heels of her feet which both hurt, we believe from a Lyme co-infection. My daughter also has nerve weakness from Lyme. Her legs frequently feel shaky. You may want to check all of your daughter's joints to see which ones tender, you can check by pressing around the joints, including the knuckles, and asking what hurts. The wrist problem you describe may not be pain but may be a nerve problem. Unfortunately sorry to tell you not much has helped, we have tried everything from epsom baths, heating pads, cold packs, aspercreme (I got a number of warnings on this but I was pretty desperate) and motrin - I say these are all worth a shot though. She did have some temporary resolution while on Biaxin, Biaxin has some anti-inflammatory activity, but the pain came back. At the worst she had to use a cane to walk, with treatment it has improved somewhat. I asked my orthopedist if he could prescribe Voltaren but as she is under 12 he could not. Voltaren is like a topical motrin which I have used and found to work extremely well, but you have to be careful with it as you can't use motrin at the same time. If my DD was older I would be using Voltaren. We have started her on the following supplements under the care of an integrative doc to address this problem: Quercetin, Fish Oil, Enhansa, Vitamin C (she has a phosphorus deficiency so this is supposed to help). The doctor also said we can try Bone Health by Nordic Naturals. Finally I bought some Arnica at CVS but chickened out using it, some people do though. I posted on the Lyme board in regards to joint pain, you may want to read some of the posts. LLM uses another supplement I cannot recall the name of but was helpful. It's extremely hard as a parent to see your child in pain and not be able to help, so I would say try everything. Good luck Edited to add: covering all the bases, I recently also bought DD a magentic bracelet that is supposed to help with pain and I will admit I bought a healing crystal that I have put under her bed. Admittedly I am totally desperate to help her.

T.Anna I don't want to complicate your life but do you have the exact results of the Lyme test? what lab did it and what if any bands were positive? Most of us that have dealt with Lyme have a view that the CDC guidelines are irrelevant, explained in extreme detail in a book called Cure Unknown by Pamela Weintraub, but an average phsycian and even many PANDAS docs do not have the experience and information to consider. So a negative test by CDC standards may not at all really mean negative. Essentialy bands 18,23, 30, 31, 34, 39, 83 and 93 are the primary bands considered relevant by most Lyme literate doctors, IGM, IGG or even Indeterminate. The other bands that the CDC counts, like 41, cross react so LLMD's don't consider them. The problem is that many labs do not report all of these bands, except for Stonybrook if you request "report all bands" and Igenex. There would be no harm in reqeusting a Stonybrook test report all bands, Stonybrook takes insurance too and is better accepted by mainstream docs. Even though antibiotics can cloud the results, it would seem worth it. Unless there is one of the bands I indicated about, and then I would consider pursuing an evaluation by a Lyme doc. I've had Mono myself and was just unable to move, I also had tonsils that were exploding so that was another mono symptom. Good luck!

thanks its PharmaNAC. 900MG capsules*3/day. It's $29 for 30 capsules. It's good to know you have seen good success with it and that there are cheaper alternatives! DD also has mild asthma, so cutting down on respitory issues is a pretty attractive proposition. i'll update as to what I see, she is just starting

DD8 is starting NAC (3 caps per day), wow its $90/month on top of everything else, (Lyme dr, integrative dr, other supplements, allergy drops , meds and psychologist, etc). if it works of course I will gladly pay, was wondering if people had good results with it?

In my daughter's case, Lyme was the cause of her severe lethargy. That symptom has gone away with treatment. She also has elevated ASO, Mycoplasma etc. Steroids can exacerbate Lyme, unknowingly taking steriods when you have Lyme seems to reactivate it. It may be something you want to explore if you have not already, for some reason a number of kids seem to have the PANS trifecta, Lyme, Strep and Mycoplasma. Other tests I would ask for would be Mono.

We've been at it for six weeks. I have seen some rages come into the picture, DD now gets pretty easily set off. Her leg/foot pain is as bad as it was when she started Rifampin/Zith for Bart. Have others seen rages like this from die off and how long did they last? When should I start seeing a reduction in pain? I should add her ASO and Myco remain high so we are trying to figure that out. She came back + for Mold and Yeast so working on that as well. I know it's all contributory but I had hoped we would see some reduction in pain by now. And the rages are worrying me, I can handle it for now but if they get worse/more frequent I am not sure how long I can keep going with this.

I don't want to jinx myself but the smoothie has been working like a dream, she drinks it all down no problem. I just wish I had thought of this months ago. I am afraid to put the abx in in case she doesn't finish but at least that's only 3 small battles a day instead of all of the below stuff. We got testing back from integrative and are adding to the program. Wow all these supplements are costing a fortune! Here is what she is on: Rifampin 15mg 2x daily Zithromax 200mg 1x daily Klaires Probiotic Therabiotic Detox, 50 BN CFU 1x daily Metabolic Maintenance MTHF 5 – L-Methylfolate 10MG ½ daily Quercetin 250 MG 1x daily Vitamin D3 800IU 1x daily Elcosamax EFA ½ tsp daily Adding: Burbur 5 drops up to every 4 hours VITAMIN C at 1000 mg 1x daily ENHANSA 1 pill (300 mg) 1x daily NAC (N ACETYL CYSTEINE (900MG) 1 pill/day FOOD DROPS and for MOLD DROPS

Unfortuantely the time I stopped to see what would happen symptoms came raging back, but my daughter also has Lyme so that complicates matters. In fact even when I would skip one dose of Biaxin I would see OCD stuff start to creep in. I would possibly consider stopping the multivitamin and iron unless anemic, I found this made my daughter worse, no idea why. I am adding in supplement by working with an integrative doctor and we have done extensive nutritional and metabolic testing. Good luck

Oh great, do you need Dr. B too?

Cobbie I have the same questions. What is really important IMO is to treat the whole child and get help. I have accepted the fact that life will always be different now and we just need to make it the best we can. It does seem that these children can get well, but it may be a different type of well than we envisioned. Some random thoughts: As Jag10 posted, sociopath (I'll call him a monster) is very different than a kid with ASD. In my reading about the shooter what has been published so far, he does not seem to have been in desperately needed counseling/special schools. Also, clearly it was entirely irresponsible for the shooter's mother to keep any/so many guns in the home with someone as troubled as he was. It seems there was a huge amount of denial about the situation. Four years ago I was at a 4 yo bday party and a troubeled kid in my daughter's preschool with no provcation took a very heavy wooden puzzle that had been given as a favor and whacked another kid on the head, the noise was so loud that everyone immediately fell silent. Instead of disciplining the attacker kid and taking him out, the father coddled him on his lap and stroked his hair. I was in disbelief. Again complete denial, inaction on the father's part. This kid, 8 now, is a large child and a major bully, and my daughter tells me he has a kid martial arts black belt. I doubt based on what I have seen that he is in counseling. It's very disturbing. I have a friend who made an incredibly difficult decision to send her 10 yo to a psychiatric school, specifically she told me she did not want him to turn in a Columbine case and wanted to give him the best chance at a normal life, as difficult (and expensive) as the decison was for her she faced the issue and took action. In my friend's case, nothing worked and she was not able to control him (not a PANDAS situation.) I have to admit sometimes I questioned her decision in my head, but on Friday I understood it completely.

I will PM you the number I use

Thanks, I give the 8 yo 50 BN per day in Klaire's probiotic, but wasn't sure how much to give my little one

Thanks all. She is on the 2 abx. How much probiotic should I give her? I am giving one culturelle 10 BN

Thank you, they were sent a bill for 500 and it was a portion of an hour. They must have made a mistake

My niece lives out of the country and has no U.S. insurance. Her mother had a phone consult, maybe 15 minutes, and was charged what I would consider to be exorbitant, the same amount as the initial non insurance office consult when she went in person. I am a big fan of Dr B but was very concerned by bill. Would like to hear what others pay for phone consult? Happy to share the amount by PM.

Thanks I am going to try all of these. On most days getting her to take the abx is ok, but the supps are proving too much for both of us. I know she really needs them so am resolved to make it work

My PANS/Lyme DD is on two antibiotics and supplements incl MTHFR 5, fish oil, quercetin, and D3. So incl the probiotic that is 7 different ingestions per day. We are waiting for bloodwork from integrative doc and I think we may add more supplenents. She complains and says it is too many things to take, and I understand where she is coming from. It also makes her feel like she is sick and not "normal" because she has to take so much stuff. I was thinking I could whip up a smoothie in the morning with all the supps in it (except probiotic) - with the risk being some would get left behind, but this would be better than dealing with her refusing to take etc. Does anyone do this or any other suggestions?

Thank you. We are ending up putting her on two antibiotics, zith and omnicef. I am a bit worried because she is so young but I am more worried about what could happen if we don't. It just goes to show you how misunderstood this illness is by the CDC and mainstream medicine. this is a new case with a very localized bullseye rash, treated with six weeks of antibiotics, more than the guidelines say, and still it persists.

DD8 has been battling chronic Lyme. DD3 had a picture perfect bullseye appear this summer. She started high dose amox that night for 6 weeks. She even did 3 days of Doxy because of a + RMSF IGG. As a precaution we bring her to Dr J, four weeks after finishing the amox so 10 weeks after the bullseye. He did an Igenex test and it came back CDC positive IGM bands 41 and 39 positive. I know 41 is not that relevant but per Dr J's sheet 39 is one of those bands that it if it shows up, you treat. She has recently been compaining of being tired, however she was very sick with croup and a respitory thing so I thought that was the reason. She has been fussy and I do feel her sensory issues are worse but other than that, no symptoms. To worsen things in the Lyme camp we just did an 8 day steroid taper because of croup and stridor (throat closing). I am waiting for a call back from Dr J but I feel lost. DD3 also has an immune problem that she is missing a protein that helps boost the initial immune response so everything gets her sick. What do people think? Treat her? Wait? If the six weeks didn't work, what will?