Tired-Tired-Tired

[HopeinHIM]

 

They walk through most days on a pile of unstable barrels and at any moment (like the cookie was eaten) the barrels go tumbling down and all ###### breaks lose.

 

My son will also flip out if someone eats his ice cream. Entire nites are ruined because no pizza is left.

 

You can't allow your children to eat pesticide laden crap and expect their gut microbiome (and thus immune response) to function.

 

Environmental toxins (and that includes vaccinations) are slowly killing our children and producing improper immune response. We all need to WAKE UP to this fact.

 

http://people.csail.mit.edu/seneff/

 

We need to detoxify them (see Gerson in the video) and support proper immune response using nutritionally dense diet (see Terry Wahls). The problem is not the infections.

 

Thanks for the video sf_mom. I have been contemplating prophylactic Sota for a while, even though DD14 is now totally asymptomatic.

 

Yes..... NO argument here on that! While I have been able to change our home over to organic/clean veggies and meats plus Gfree as well, the battlesssss continue! Much of my son's issues revolve around food. His OCD food focus is up there at the top. Many times the only way to get order is to reward good behavior with an ice-cream cup. Took me a year to get it to be mostly coconut milk ice cream . So the home is most definitely cleaner but I am unable to completely clean everything up plus add the myriad of live foods, grass fed meats, mercury free fish, Kombuchai and Kefir. I am amazed at how some parents are able to do so much more and that the ill children comply. Our son would rather NOT eat!! And food refusal has happened. My husband and I have removed much from the home but the more we focus on super clean eating the more it wraps into his mental struggles. Plus....none of the docs and herbalists we see seem to think that tightening up much more will change things more than they are. That weakens my resolve when things get real tough (and they do) So we are somewhere in the middle. The battle is not only with our children, its with the pocketbook. Feeding a family of five (four of which are hungry males) is expensive no matter what. There are just so many variables. Don't want to whine!! Bottom line for all of us is we want our families healed. If there were resources (like clinics or live counselors) to encourage and walk families through this maze, it might make things a bit more possible. My son in particular, might be inclined to take ownership of his condition more if we weren't so cloistered. The nature of this world that we are forced to live in is so complex and complicated. I need to just focus on what I can feasible focus on and move forward when possible. I can confidently say that there is so much more good info out there than three years ago when we started this. Thanks for so many great responses. This forum is a huge encouragement and resource for sure.

[Ladymavs]

Hi ladies- you definitely are not alone. The good news, from where I stand, seven years from onset and diagnosis, is that even though my kids still flare, they are getting milder. We are going through an especially rough patch right now because both girls, ages 12 and 15 are flaring, and out of school due to ocd. That being said- the ocd is not impacting every minor area of their life. Seven years ago, when I brought my younger daughter to the doctor it was- wearing footed pajamas, no underwear and rubber boots (that is all she could wear), carried by myself or husband (most likely screaming, after attempts at escaping moving car), not eating, not looking at people, unbathed, just total "crazy" is the only way to describe it. There was no mistaking, we walked in and the doc knew pandas. Fast forward seven years, many flare-free years, many difficult flares, many types of treatment, to todays doctor trip. No one would ever know she has anything wrong with her. Bathed, dressed nicely, poised, impeccably behaved, cute, happy, out for lunch after, etc. She is having debilitating ocd, but it is restricted to a few areas of her life. So there is hope, if my girls continue down this path, their flares will be hardly noticeable in a few years. So hang in there and do your best- just love them- that is it.

 

That being said- I am tired too. It is SO hard to see your kids suffer. I worry about their self esteem. I worry about their future. I cannot work- had to quit a job that I loved- because with two, it seems that one is always either not in school or on the edge. I have gained weight. I am angry at my husband much of the time because he has the luxury of not "getting it" when he doesn't feel like it. (some days he blames them and me, mostly if he is stressed I think. He yells sometimes, even if it is ocd and not behavior- sometimes it makes me think HE has pandas too). I ALWAYS, every minute have to be the level head in the house. I have to do ALL research, go to all doctor appts (mostly alone), make all decisions. We have spent an unimaginable amount of money that we do not have. So I feel not only do my kids suffer with this illness and all it brings- but also we cannot DO vacations, broadway shows, pony leases, etc.- because the money for that is spent on treatment. We probably have averaged 5-10K per year for 7 years. In 2015 it was probably $25-30K, plus $10k for an attorney to deal with the school. And believe me, I am thankful we were able to spend all of this- but we are barely making it.

 

Therapy has been SO helpful- but to be honest I would probably not waste money on it unless you are going to the Rothman Center or Rogers. We have gone to Rothman several times, and now realize what a waste and money suck local therapists are. By us, there are NONE that you would want to see that take insurance. We have been trying someone now, but the way I see it, local therapists (not in an intensive program setting), have no fire under them. They figure they will work on issues over the next six months to year, while charging $165 per week. They will spend several appointments "getting to know the child", making lists, getting updates. All the while, in between weekly appts, the child is NOT FUNCTIONING. Don't see me for a pleasant 45 min and then give me a smile and say see you next week. It doesn't work. I really think our kids need QUALITY ERP done quickly- and that seems to be mostly only available in these intense programs. Our doc at Rothman knows he has the kid for 3 weeks, only, and he wants to just get in there and FIX it.

 

My kids were on daily antibiotics for many years, and off for many years. Being on or off has not really changed the course of their illness. I am happy that they are off, as I do worry about unintended consequences, but believe me, if they helped- they would be on them.

 

Both of my kids are on prozac. They have been for almost two years. We have had NO negative effects, and I potentially credit the prozac for really CALMING down the flare ups- as that did coincide. My younger daughter always had a baseline of being very shy, and somewhat anxious- the prozac made that go away (mostly). We are in the process of raising the dosage for both of them, in hopes it will touch the ocd.

 

It is so helpful to hear and share stories with everyone- it is hard to find others who really get it. If you are on FB- many pandas parents just shared photos of their pandas kids- and it really was beautiful and touching.

 

Take care!

I totally am with you on the local therapists wanting to take several sessions "gettting to know you" and yet charging their normal $125-165+ rates each week. I am very interested in learning about the Rogers and Rothman programs. I just want to give my son some relief from the non-stop intrusive thoughts and give him the tools to be equipped to handle them better when they come on as they will even when the PANS underlying stuff is calmed. Does anyone have any feedback from the other locations? We would most likely look at doing a one week intensive and I like the fact that we may have a chance to meet other families and gain some support from them as well. Sounds like the programs have been highly effective and really provide a good foundation to help the kids/teens deal with the OCD stuff. Does anyone have any feedback on any of the other locations, even though it seems that Tampa is the main site and where most have gone? I am definitely interested in more and would rather spend some money and get some intensive help that may be more beneficial than weekly sessions that go on and go and may not even tough the surface for 4-6 visits or more.

[PowPow]

I have "older" experience at both rogers in wisconsin and usf Rothman , from 2012. One daughter was 13/14 at rogers in wisconsin for over three months and the other was 12 while at USF daily one-two hour intensive therapy for three weeks.

Both very different but very helpful.

Feel free to pm or ask here specifics

[Ginah]

Can I ask your experience at both? I'm considering an intensive at Rothman for my son for this summer.

[PowPow]

Both were very good for CBT/ERP. Your child must be willing to work and try to get better. If they are so entrenched in OCD that they refuse help, it will not do anything & the child will probably be sent home ( I know because they almost sent us home from Rothman!)

I highly recommend both programs~ though my recommendation is from several years ago. I would send another child there, if they needed it. Leaving a child far away for weeks on end at Rogers (or anywhere) was very difficult, so I would think Rothman would be preferable for most people.

If you have specific questions, ask away !

[demeter]

You might want call to Rogers in Tampa also as they also offer an IOP, intensive outpatient programs, both in the morning or afternoon. We did their PHP, partial hospitalization program with amazing results! You can read my post about our experience at Rogers, "100% Ritual Free in Six Weeks"

[Ladymavs]

I did reach out to Rogers this week and found that their IOP for adolescents typically runs 6-8 weeks. From what I am reading on the previous posts, Rothman offers a 3 week intensive. For those with experience or knowledge of either program, is one more superior in hitting the OCD than the other. Sounds like they are both very solid programs, just structured a bit differently. We are in the Dallas area and was hoping that I could find an IOP in this area, but looks like Houston is the closest. There program typically goes 4-6 weeks according the the website. The OCD has heightened a great deal over the past couple of weeks and we are hoping that the new abx will knock down a bit. Is it best to get some of this lowered to have better results with therapy? In a recent visit to a therapist who works with PANS/PANDAS kids, he was also in somewhat of a heightened state and he left the office not wanting to ever do that again.....although I know this therapy is difficult and you have to go through some struggle to get better. It's a fine line as you want them to push themselves, but you don't want the therapy to backfire either. Guess this comes in finding the right therapist and it sounds like both Rothman and Rogers have this in place. Any other places to consider?