New & desperate for help

[makingitpossible]

I am new to PANDAS. She got it about 1 year ago and it comes and goes but it is flaring right now. I am thinking I may have also had this as a child as I had severe OCD and don't anymore. I never had treatment or counseling.

Right now we are doing basic biomed. Methyl B12 shots, methyl folate, follinic, niacin, other b vitamins, minerals, chelation, etc. I recently started monolaurin and she is on 1/4 cup a day of camel milk. I would like to skip the antibiotic and prescription yeast song and dance as we have had the worst behavior I have ever seen with this combo.

It has to be something natural or possible IVIG. I will take any advice and appreciate it.

I am also wondering do kids just grow out of this? I mean I have a 5 1/2 year old and I do not want to wait to see obviously but my OCD started at 7 and pretty much ended in my late teens and early 20s though I do have some lingering effects.

Thank you!

[tpotter]

What about trying ART? If you're interested, PM me, and I can give you some additional information

[Missmom]

What are your daughters symptoms? Do you feel like your daughter is dealing with more than what you went through as a child or a lot the same. I do think that some children do out grow this as puberty sets in, but I also think all infections/ immune deficiencies must be taken care of first before any healing can begin. I fear that things can get really out of control if any/all infections are left and for this antibiotics are often necessary. I feel ivig and supplements are great as long as all infections have cleared. Biofilms and such can often hide things and make them almost impossible to detect. I know it is so frusterating..... Welcome to the forum and hope you find as much support here as I did. When I first learned of pandas, I had lots of questions but everybody here was so helpful and never made me feel stupid for asking a lot of questions.

[makingitpossible]

Thanks for your help so far. Her symptoms are worse in regards that she wants us to do a lot of her compulsions. But otherwise mine were probably worse. I was severe....roughly 6-7 hours a day at least on my compulsions. Now I just have constant worry basically and still pull out my eyelashes.

I will PM tpotter thanks! I haven't heard of this.

I recently read this on another forum: http://health.groups.yahoo.com/group/Au ... age/277556
It is kind of like treating PANDAS with a lyme protocol. ANy thoughts? I have wanted to try the cumanda for awhile now.

We haven't addressed the biofilms yet because the metals are still high but yes I think this is something we need to address.

[makingitpossible]

How do you PM?

[airial95]

I also likley had PANDAS as a child, and while I have outgrown the "PANDAS" part of it (no longer react to infection), I have permanent, long lasting OCD as an adult. So while the kids may outgrow the immune response - the effects can be lingering beyond that.

 

We have used only abx/probitics with no yeast issues or other problems, but are heading for our first IVIG with my son next week. So I can't offer any advice there - but as someone newer to this, I would suggest keeping a log/journal of symptoms/treatments. Sometimes it can help you objectively see progress, even when you're exhausted and emotional!

[cobbiemommy]

I would highly recommended IVIg. Frankly, if strep is your issue, I don't see how you can avoid treating an active infection with antibiotics. Not trying to be confrontational, but trying to be direct on your options in treating an actual strep infection. Probiotics are wonderful, whether your child takes antibiotics or not.

 

ERP therapy can be very helpful if your child is well enough to fully participate. The therapist may give you some good ideas on how to not play into your child's obsessions. I wish I had known a lot of those strategies several years ago.

 

I developed some anxiety as a teenager after having Scarlatina (which I now know is Scarlet Fever). I would not want any young person to have to go through that unneccessarily.

Edited March 29, 2013 by cobbiemommy

[Hopeny]

Fwiw I had an acupuncturist who used mostly natural medicine for her kids, she even used a Shaman. She told me though for strep she always used antibiotics, she said alternatives did not work for strep.