socalmom

Yes...that is a big dilema. My PANDAS dd's tonsils LOOK normal. I don't think anyone will take them out for us (in CA). But, I keep hearing about kids with normal looking tonsils that end up being quite diseased once removed. BTW. Dr. Latimer is generally pro-tonsilectomy (even before doing IVIG). She says she cultures out a lot of drug resistant staph. Dr. Murphy goes the other way, doesn't think T/A is generally helpful (but maybe she has some selection bias, the kids who are helped immensely with T/A never get referred to her in the first place?) I have a friend from High School with a PANDAS kid...it seems that T/A really helped him. He's quite normal now (same age as my PANDAS dd). No IVIG/no long term abs. I don't think he was as severe as my dd is, but he definitely had PANDAS. He probably didn't have as many untreated strep infections as my dd did either. My dd still has her tonsils. I wish I knew what to do! NOBODY has even suggested it to us (but we are not in the East with the PANDAS docs). *************************** EAmom, We are in California (Southern) I know Dr's that WILL do T/A I can provide names if you are close to Los Angeles.

HI Julia, Vitual academy is specific to your state or all states? I am opting for homeschool since Kinder is such a breeze and healing is most important at this time.

Thank you so much, I am so exhausted I don't know how homeschooling works in terms of making sure this is reported on his school record. My lyme brain has organization issues. He would be starting Kindergarten but has 1 st grade abilities. Perhaps I don't need to send him, but since he's NEVER been in school- I am not sure how this works. ifran I will PM you.

I have looked at these boards for the past 7 months, first when my son was diagnosed with PANS, and now that we know he is congenital Lyme. I have found this place to be a valuable source of info with smart and strong parents sharing stories and experience. My question: My 5 1/2 yr old son is supposed to start public school for the first time, problem is that we have just started Lyme treatment in the last 5 months and our LLMD doesn't recommend he attend so early in treatment as he really needs to heal more first. I agree. I do however need to know what to with a CHARTER School that has told me he doesn't qualify for home tutoring as he's "never been in attendance at this school" said he MUST attend the first day in order to be assessed. Can they turn us away like this? I feel bullied and like i am being forced to alter my sons treatment just to get him into a school. I am ashamed to admit I really don't know how the school system works as it's different than when I went to school and my son was in private Pre K. Any ideas would be much appreciated. I know we all struggle with the school issue. I can't seem to get my son into the system to get what i neeed that's my problem. TIA

Hi philamom, I did Metamatrix kit for my son while he was on Nystatin, the only thing it interfered with was a fungal/yeast reading. it said on the report that no values could be obtained due to inability to get a reading. I would wait if you can. Nystatin leaves the body pretty fast as it's only in the gut, where Diflucan is systemic. This info was obtained via an autism Dr's web site.

Hi mdmom, My son is congenital Lyme and has low muscle tone. I saw it diminish with abx, meaning I saw his abilities improve such as being able to do the monkey bars all the way where before he was only able to hang and do maybe 1 "swing" on the bars.

Hi Ifran, is it Anthem Blue cross you are dealing with? They are hard to pin down. I suppose you could throw a number at them. so if CBT is 150.00 a session it's 70% that they would pay, am I correct?

My 5 yr old also took Alinia, he has Bart and Babs, it's a multi tasking treatment as Julia mentioned. I think the foot pain is a herx, as my son had this as well. His symptoms increased a bit and then he leveled out. Alinia crosses the blood brain barrier I read, good for Neuro lyme. We just did lots of detox and epsom salt baths. Hope this helps.

Pierre Fontaine is classically trained Homeopath, can communicate via skype too. http://www.homeopathicservices.com/

I have a letter drafted out but I made it geared towards PANDAS when i thought that's all we had. So, my question is if I list both, isn't this going to overwhelm a new school and teacher? I feel like it all seems too much ( i know it is for me, and it's my kid!) Anyone have a good 504 letter w/ LYME AND PANDAS listed that they would to share?

Thanks Julia, Romark is a French Company that just moved it's operations here to the US from Belgium where it was made. I will call the rep who's number I have and ask.

Julia so glad your son is ok, what a scare, you are so lucky to have a great doc. What's this about Alinia about to disappear off the market? My son is taking this and it's the only thing working right now for him! His Naturopath didn't mention this! How do you guys know this?

But there may be chiropractors who practice AK (Applied Kinesiology.) We were using a fantastic one in NY, but then moved. We still travelled back and forth regularly, and I finally looked online, and found one locally (even takes insurance!). Both chiropractors in his office have been trained in AK, and both have been very good. I would suggest googling,and then making lots of phone calls to ask if they do AK. Thanks tpotter, that's a good idea, AK is the same as ART? I thought they we're different.

as usual there are none in Southern California.....so frustrating. This is why I had to do "long distance ART through Dr Derksens office.

wow, that's a HUGE increase. Thanks philamom. good info.

oh Lilly, I feel your mama pain. I haven't even been able to wrap my head around the impulsivity and how to best handle it. Wish we could have a big Lyme/PANDAS playdate for the little ones so they could play without judgement.

Thank you, I have considered home schooling, The stress is horrible, for him and me and our public school is Charter and my first contact with them was AWFUL. I am unable to get rid of all the PANDAS/PANS/PITANDS issues, IVIG knocked the OCD down, and maybe out, but the fears/intrusive thoughts and tics are still there. we have Lyme, babesia,bartonella and I do worry about the exposure to more stuff especially strep at school. I really worry about the isolation though. I am really sick and my husband may be too, so home schooling might ok, If I could hire someone to do it. I have to request an assessment- when they are back in school in July. I did one in writing sent to the Assistant Principal and she was less than kind with her words, even saying that I.E.P'S are for kids in wheelchairs!

Hi, My son who is congenital Lyme/PANS is supposed to start Kindergarten this fall, only problem is we are over whelmed with how or if to do this! He was dx'd in March with Lyme after we chased PANS for a brief bit. I keep getting feedback that I shouldn't send him and that he will not be able to do a full day anyways(I agree) but I can't homeschool and I am already exhausted as it it. Question is: How do I proceed? I requested an assessment but was met with very sour tone and borderline rude response from assistant principal. I feel so stupid, I have never navigated public school before,and a lot has changed since i was a kid.

Hi Julia, my son also tested well for LifeMax MILA, but do you know what the other brand was that tested well? at $55 dollars a bag, MILA is pricey, especially considering it's 10 dollars or so for the same amount of Chia seed from other brands.

Thanks Philamom! I just felt compelled to write this as it seems that other boards are either depressing(not good for a newbie) or a bunch of people comparing symptoms all the time. I feel this board helps in ways needed when this "invisible'" disease is so overwhelming, i have gotten the reassurance and sage advice for things like Dr's or school info here that i consider priceless as I feel a bit lost as to what to do next for my son, to help him. Not many resources where I live and this board helps. Thank you.

I hear ya on the paper plates, my husband wasn't crazy about this at first but he see's I am up to my eyeballs in "lyme stuff" and tying to figure this all out. I have ocd from either lyme or coinfection so it come in handy for housework.

It is definitely tough and the one thing that has gone by the wayside for me (besides cooking and cleaning) is getting on the forum. I miss it though. Thankfully, we are in a place now that I don't feel like I have to read it all the time. One thing I wanted to mention after reading your post is that my llmd is great about adding meds in slowly and backing off if I can't handle the herxing. She realizes I have a lot on my plate and that I have to be able to function to some degree. There are alternative drugs if some are not working or causing too big of a herx. ---------------------------------------------------------------- MOMAINE, I can't imagine having so much on my plate, when I am having a pity party I realize it isn;t the end, just a new and different path. I think the LLMD you have sounds smart.Yeah, I really beat my self up about the cooking, I hear so many different ideas on the perfect Lyme diet, it gets stressful.

I just wanted to write to say that the mom's/dad's on here are such an inspiration, fighting lyme and also serving as caretaker to a child with lyme is rough! I have been diagnosed as well and my son is in treatment since march. I wish I was as strong and organized as you women seem to be. I am struggling and will be starting treatment soon. I tried briefly but was knocked on my butt and couldn't take care of my son. I will endure this time and stay the course. You guys are great source of info. Thank you.

My son has this and he doesn't take Milk thistle. Herbs don't do this, antibiotics do. Some antibiotics can ruin a kids teeth.

I thought steroids are a no no for Lyme? We did a steroid burst before DS was dxd w/ Lyme.