afsml reacted to airial95 in Four Years - A Reflection
Year 4 – a look back
Every year I have posted a list of reflections, things I have learned through the previous year’s fight and struggles. I have found that each year it has helped me to be able to reflect on how far we have come, as well as to revisit the previous year’s reflections to keep perspective on where we have been.
I have found it helpful to even look back at each year's post to see just how far we've come - Our First year: http://latitudes.org/forums/index.php?showtopic=12108&hl=
And here are my reflections for the 4th year of our journey:
I have often dreamed of “life after PANDAS”, I learned that there is no such thing. While my children are well on their road to full recovery, our lives have forever been altered by PANDAS, and there will never be a day where PANDAS does not cross our minds, or lips. While knowing that “life after PANDAS” is a fantasy, I learned that I can use the impact PANDAS has made on our family to help others by sharing our story, experiences and support to those who have come after us. Hopefully, they will not take 4 years to find the healing we have this year. I learned that fear may cause us to doubt our best instincts, but the support of kind strangers who have become “virtual” friends over the years, those fears can be conquered. I’ve also learned that the unwavering support and advice of those friends can only carry me so far. I am their mommy, and only I can decide what is best for my children, no matter what anyone else says, even with the best of intentions. Our instincts as parents – no mater how scary - are still the best weapon we have to help our children. I learned that even the most fierce mommy advocate can get it wrong sometimes too – IVIG has been a game changer for my kids, and I regret being too afraid to try it for my son sooner. I learned to never underestimate PANDAS – just when you think you have it “under control” – it pulls the rug out from under you. Again. I learned that as we travel farther down the path to recovery, the setbacks seem greater – even though they are comparatively minor compared to the through which we had previously passed. I learned that even after living with this for 4 years, even those seemingly minor setbacks will still break your heart all over again. I learned that I am not the same person I was 4 years ago when I started this journey. The hopes, dreams and goals I had for myself, and my family, back then are hardly recognizable to me anymore. I’ve learned to embrace the woman I am now, and realize the hopes, dreams and goals I have now, while different, do not represent a failure of what I envisioned for my life, but a growth that comes from naturally giving yourself over to your family, and God, in ways those who don’t face challenges may never understand.
afsml reacted to kimballot in Interesting perspective from Beth Maloney
I know I've not been posting much lately, but I feel a need to chime in here. My son is 16. Grant is 17. My son had a major exacerbation in 2011. So did Grant. My son had severe OCD that made it difficult for him to get to school. So did Grant. I struggled to find help for my son. So did Grant's Mom.
My son's exacerbation was so bad that he had to be hospitalized in a psychiatric ward. We had a file at the local police department so they would know what they were dealing with when I called them in the middle of the night to come and help me put my son to bed. My son never hurt another individual, but he posted horrible things on facebook that he SAID he did - though he never ACTUALLY did any of them. I don't know if it was hallucination, fantasy, or OCD. He listened to depressing, gruesome music and fought with me constantly to wear his hair and clothing in anti-social ways. It is hard for me to sort it out. I just know it was horrible ... fast. One police officer told me my son needed to go on PINS and that I needed to get the justice system involved. Thankfully, it never came to that.
I changed insurance so my son could get IVIG and be treated by experts all around the country. I was very fortunate to have that option. Slowly, with each doctor, we made modifications in his treatment. Slowly, slowly, slowly, he came back.
Today my son is a loving, kind, even-tempered and humerous young man. He still struggles with fatigue and brain fog, but overall he is a very likable kid with a big heart. When people hear who my son is the first thing they say is "what a nice kid". My son received treatment. Grant did not.
I do not know what would have happened to him if we could not get treatment. I have no doubt he would be in trouble with the law.
Can untreated PANDAS become antisocial behavior? I don't know.
I do find it interesting, though, that many people in the PANDAS community have gone to great lengths to support the families from LeRoy and the families at Boston Children's when the doctors have said "this is not PANDAS"... but we are so quick to turn away from a controversial case when it is not pretty. No, we do not want our children associated with antisocial behavior... but if this IS the result of untreated PANDAS then it is best that we find out soon!!
I am wondering why we are not screaming at the top of our lungs to find out if Grant has PANDAS and if immune treatments remove the antisocial behavior. Is it possible that a portion of the children in juvenile detention centers could be helped with antibiotics, steroids, and IVIG? Wouldn't that be amazing.
afsml reacted to rowingmom in What supplements work best for inflammation?
As I am sure everyone here knows, I am going to suggest Japanese knotweed for brain inflammation. Stephen Buhner also suggests kudzu, although we have not tried that one.
For an explaination on why and how it works, Buhner's book Treating the Lyme Coinfections: mycoplasma and bartonella has a good description of Japanese knotweed, as well as the other herbs used to treat myco/bartonella.
I have seen a double dose bring her out of a herx-induced flare in 20 minutes. We use it daily, and CBC/CMP tested monthly (now tri-monthly) have always been normal.
afsml reacted to BeeRae22 in template for tracking symptoms and response to treatment
If the chart doesn't work for you, what I did was try to keep it simple. I got a calendar, and each day I would make an arrow for morning and night (arrow up for good, and down for bad mornings and nights) so I had a visual of "ups and downs". I also marked any changes in treatment/meds so I could see the ups and downs after the change.
At one point I was trying to make notes each day about behaviors, etc. but it became convoluted to read, (and sometimes I didn't have time or was just too tired!) so now I just jot down anything significant, like a huge rage episode, or I'd just jot down ODD for odd behaviors that day...... I'd also jot down anything else significant, like a trip to the dentist, or doctor, anxiety provoking events like start of school, or a new teacher, death of a pet, etc.
It helps to have the visual to see if there's any pattern. I'm sure other people on this board have a more sophisticated way of charting this stuff, but keeping it simple worked best for me
afsml reacted to airial95 in template for tracking symptoms and response to treatment
We used an excel spreadsheet and visually graphed progress. It helped immensely to see how quickly patterns emerged based on different treatments, etc...
We went even more specific to our chile than the Yale OCD Scale, mainly because when we started our log our son was still a toddler (2 years old - he's almost 7 now) and the typical OCD scales were difficult to apply at that age. We listed every symptom/behavior we wanted to keep track of, and rated them daily on a scale of 0-9. 0-3: Normal age appropriate behavior (because many symptoms can be seen in a normal child as well, just not quite to the scale PANDAS parents see them) 4-6: A step up from normal age appropriate behavior, but no SO disruptive that they didn't recover; 7-9: Completely dysfunctional.
We used an numerical scale because it helped us keep the emotion/stress out of the log. For example, after a long day where everything goes wrong at work, a 15 minute tantrum at the end of the day over teeth brushing rituals seems terrible and worse than it actually may be. But when I had to actually grade it on a scale of 0-9, I realized that what totally felt like a 9 to me at the time, was probably more like a 6 or 7 because tantrums for the same thing earlier in the week lasted well over 90 minutes - so objectively speaking, 30 minutes was actually an improvement.
Then we would total the scores for the day and graph them. We had a "goal" score range that we were looking to hit with each treatment/therapy, etc...
Using this method, we were able to identify several patterns that were huge for us, for example:
- when my son is exposed to strep (but doesn't test + himself) we would see about a 20-30 point spike in behaviors for 3-5 days and then steady improvement for another week or so back to what it was prior to the exposure. (This helped us time when to see the doctor for strep checks - if things were still getting worse by day 3-4, we knew it was likely more than just an exposure).
- when my son wets the bed, he is + for strep. 100% of the time. Regardless of what/how much antibiotics he is on at the time. This has been HUGE for us in managing subsequent flares. If he wets the bed/has a potty accident - we are in the Dr. THAT DAY. No waiting to see if things get worse. This early intervention has helped us keep flares from spiraling out of control.
- napping can help improve his "daily scores" during flares by 10-15%. Continuing naps outside of flares has helped keep exposures to a 1-2 day spike with typically only 1 "major" meltdown.
If you're interested in our spreadsheet - PM me your email address and I'll be happy to share.
I'll also point out that our spreadsheets (or "crazy mom binder" as my husband called it), helped us convince more than one doctor who was on the fence about it being PANDAS that it couldn't be anything else. The data didn't lie!!