Posts posted by ssfkat
The first few days were basically us being shell-shocked and not knowing what was going on, before we got used to our "new normal". After about 3 days of that, we finally corralled her enough to get some clothes on her and put her in the car seat to get her to the ped. She was spewing every vile thing she could imagine at us the whole time. Totally not our child. We asked for a strep test and it came back negative. The ped wasn't very supportive anyway, and called PANDAS "controversial". He suggested zoloft (she was 3yo at the time) and I refused. Then he suggested that she was "testing" us and it was a discipline issue. Blah.
The only two things that have ever provided any relief were the Feingold Diet, and Brainchild Nutritionals supplements. Even those only provide temporary relief -- nothing has been consistent.Anyway, we have been at this for 5 years, and have tried every natural route possible. That's why we are turning to traditional medicine now.
Sensory issues were the first things that showed themselves. Literally overnight, one day she woke up and did not want to wear any clothes. Everything made her scream. We were housebound with her in the bare mininum clothes for those first few days.
The sensory things have morphed and mutated over the years, but they are always, always there... in various forms.....since that day.
Wow, the fact that multiple test sources can yield different results is news to me. Thanks for the heads up.
What herbal tx are you using?
I just discovered that DD's probiotic, KIaire Labs' Ther-Biotic Complete Powder, has streptococcus thermophilus which Klaire says does not affect PANDAS/PANS: http://www.klaire.com/images/PANDAS.pdf.
But I see that some practitioners advise against it.
I am curious about any recent thoughts about this?? DD has been on this supplement every single day for YEARS, as in I can't remember when I put her on it, and she's 9yo. It's the only supp I have never discontinued.
We have done the bloodwork, and are waiting for the dr. consult. We were given 2 different abx, as well as a Valtrex to take in the interim, but none of them seemed to do any good, at least for the 30 days each abx was taken.
However, ibuprofen works. 90% of the time, a dose calms her down, to the point where when she is flaring badly, we make a beeline for the bottle.
I get that it reduces inflammation. Does the infection in the brain cause the inflammation, or could theoretically anything cause inflammation in the brain -- like an infection or a virus.
Or let's say she tests negative for these major causes -- in that case, why would the ibuprofen work? What I'm getting at (I think) is: what EXACTLY does it tell me that the ibuprofen helps her behavior? Is it possible that it simply makes her feel better overall and has nothing to do with the brain?
So, along with the line of reasoning in this article, manganese in a supplement should possibly be avoided for someone who has Lyme?
This features Beth Malony, author of "Saving Sammy".
Great interviews with mothers of PANDAS kids.
My only concern is that the general medical community is just now scratching the surface of the strep connection, but it seems that strep is just the tip of the iceberg, and so many other things can cause neurological problems, hence PANS is more encompassing.
Still, it's a start.
So glad you had a positive experience. More doctors are coming around .
So did your daughter have Bartonella? I was just reading up on it and we have had dogs in the house since DD's birth.
Is it more prevalent in certain parts of the US? I just read an article on it from NC and we spend a lot of time there, visiting family.
She has also had several tick bites, and deer ticks are prevalent where we live. We have done prophylactic abx treatment for the ones that we have found, but there could have been others that we didn't see.
It's like finding a needle in a haystack!
That is great news. We just had bloodwork done (before insurance, $2,200+ worth! gulp).
I will call tomorrow.
Thanks for the heads up!
I was wondering -- for those with younger children, what do you tell them about their "issues"?
We have started the abx and often ibuprofen, and DD keeps asking what they are for. She is used to taking all kinds of supplements, and we have been telling her the abx are new supplements, but she knows what ibuprofen is. She is 8.
I told her that, just in case there is something in her body that hurts that she may not know about, and that may be causing her to feel bad/act out, we are trying the ibuprofen.
But like most kids in this category, she is pretty sharp, and eventually will start asking more questions.
I have never liked labels, as I feel they are too restricting, but at the same time, at some point (I guess after all the bloodwork is in), she will have to understand what we are doing.
How much do you reveal, and how much do you protect them, in order to preserve as much normalcy as you can?
Telling an 8yo that her brain is not functioning properly seems pretty heavy.
What's the balance?
Hello all and thanks for the replies.
As it turns out, others' schedules dictate that the overnight stay is not an option. So, it's now a day-trip which takes the pressure off, AND DH is now able to go since it will be a day before he leaves. So she will get the association and fun without the added stress.
dasu, the only definite triggers we have are food-related so far. For example, she was fine for about a week, and we let her have mustard, and within hours she was a pistol, and stayed that way for days. She absolutely loves mustard, and when we had her tested for food allergies, that one was high on the list. We had her off of it forever, but out of sympathy and stupidity, occasionally we will let her have it to see how she does. We also know that she responds negatively to salicylates, which is why the Feingold diet worked for so long. Dairy makes her physically ill. We are currently living out of the country, and are working with Dr. T via skype. This week I am hoping we can find a lab to do some of the bloodwork he has requested in order to see what else is going on. But somehow this food issue is involved. We are sure of it. Also, the move here has been hard on her, and her bh has gone downhill pretty bad since being here. I think her frustration and homesickness is manifest in that way.
maryaw, I agree with you -- the sea is very soothing, especially for me . Since it's a day trip, we will definitely go.
beerae22, That's the thing -- she used to only act out with us, and it was like everyone thought she was fine. But now she is getting bolder and bolder and not as affected by embarrassment, which really bothers us. We also used to take her privately and talk to her when she acted out in front of others, but she started to use that as a license to do things she knew she shouldn't do because we wouldn't say anything in front of people. But I've started speaking to her matter-of-factly and telling her that her bh is not acceptable, even in front of people. It makes everyone so uncomfortable, and it really doesn't help when she is flaring, but what else is there to do? You cannot just ignore some of this behavior.
(apologies to the Clash )
Ok, I wanted to get the opinion of those here since most parents don't understand this dilemma.
In a nutshell, we have the opportunity to go to the beach for a night with a group of friends, one of whom has a house at the beach.
DH cannot go because he will be out of town. I rely on him heavily to manage flares with DD.
She has been really really bad for a while now and we can't trace it. She is on abx and we sometimes give her ibuprofen which helps, but not always,.
We have to plan it 2 weeks in advance, and we both know that at any time, she could snap back and be her normal, happy self. She always wants to be around people, oddly even when she is flaring, but often I keep her away because I get tired of damage control.
Plus we of course both really want her to be able to be with friends and have fun experiences.
Right now the thought of being in a house with her the way she is makes me physically nauseous. However, often even when she is flaring, she will totally surprise us and do fine with a change of circumstances, and distractions.
DH is leaving it up to me since I will be on my own in managing her.
Should I do the "safe" thing and just not plan it? Should I roll the dice and go hope for the best? What if she is horrific and everyone comes back hating her (not really, but you know...)..... If I don't plan it, and she is fine by then, I will regret it.
What to do!!??
I am so glad that this has worked for you and very glad you posted.
Before embarking on the pharmaceutical route, we tried every natural path under the sun, including 2 nationally-recognized, published homeopaths. Both were very promising in the beginning, and more than eager to take us on, but in the end, proved ineffective in helping our daughter. We simply don't have the out-of-pocket money to keep finding the "right" homeopath for her.
That being said, I know it is very helpful for some folks, and if you have the $$, it's worth investigating to see if you're one of those folks!
dasu, best response I've read.
Setting limits and accountability do not work during a flare/reaction. DD already knows her limits and accountability. How do I know? Because when she is not flaring, she behaves with a recognition of her limits and accountability ... and is actually quite well-behaved. At those times, I feel like a great parent. But when the switch flips, all of that changes. She becomes almost animalistic and, although I know what is happening, I still cannot help feeling like the lousiest parent.
Still, the rest of the world does not deserve to be subject to her selfish whims and demands. So, something has to be done. The result often ends up being social and emotional isolation, not just for her but for the rest of the family. And then any explanation that her behavior causes certain consequences is met with "what did I do???" "I don't understand what I did????" etc. etc. -- within minutes of being completely obnoxious, selfish and unbearable. How can she not know what she is doing? Yet at that moment, I see her tears, and I dare to consider that she really really does not comprehend how bad she is being. Then I feel sorry for her, but at the same time, you cannot just let this stuff slide all the time.
There is also the consideration of her own social relationships. When she was younger, you could see that people just excused her behavior as typical childhood tantrums. But as she gets older, people tend to expect more. They expect age-appropriate behavior. And when they see very age-INappropriate behavior, their first thought is never ever, "Oh, she must be suffering from brain encephalitis." It's usually something along the lines of her being selfish, a brat, spoiled, lacking discipline, and above all, the result of bad parenting (of course). "If MY kid did that, I tell you what I would do...." is one of my favorites.
We don't feel the necessity to try to explain what we are dealing with to other people who really have no business knowing, however at the same time, them NOT knowing means that we as a family are often judged unfairly. If she had some physical ramifications of her issues, it would be easier for people to have compassion. But because what she deals with is "invisible", it creates a false sense of reality. And sadly, human tendency is not to extend extra kindness. (Heck, why should they? When I often have a hard time with it myself, and she's my kid.)
When she is not flaring, she is the best kid in the world. She is sensitive to others' feelings, she is compassionate and thoughtful and always, always sticks up for the bullied kids at school. I am so proud of those moments. I try to remember that --- and we really really try to remind ourselves that that is the real kid, not the one that we see during the bad times. It's hard, but we know that she is in there somewhere, and probably trying really hard to come out.
One night, while she was "normal", we talked for a long time about her issues. I asked her why she acts like she does sometimes, and she just says, "I don't know." She says she knows it is wrong, but at the time, she wants to do it. One night she said, "Don't give up on me." It was a heavy statement from an 8yo, and I will never forget it.
I try to put a twist on things, and tell her that what she is going through will help her so much when she is a grown-up. She will have so much compassion and understanding for people going through hard times. And when she sees a kid acting like she does sometimes, she will be able to really reach out to them and give them the compassion they need.
Despite everything, dealing with what we deal with has added another dimension to my personality. Before having children, I really thought I would be the best parent . I had it all figured out. But parenting teaches humility, and especially so for children like these.
I read somewhere that the child who seems not to deserve love, is the one who needs it the most. Although it is hard to put into practice sometimes, I believe that is true.
During our 5-year journey, the one thing I have consistently noticed is the effect of various foods on DD's behavior resulting in reactions/flares.
The Feingold diet was helpful for a while until it became almost impossible to keep up with, as well as obviously not being a "cure".
We had her tested for food allergies and mustard came up high on the list. We have avoided it for a while, and tried it again this past weekend. Within hours, she was a different child -- huge flare.
SO....how does this fit with PANS/PANDAS? We also notice an improvement with her on antibiotics as well as ibuprofen. So we know somewhere this fits.
We have also seen her respond temporarily to high doses of vitamins, which I assume acted as a band-aid to the brain which is probably starved for vitamins due to the inflammation.
What are the thoughts on diet/food and brain inflammation??
Okay, thanks. We're fairly new to the pharmaceutical world, having tried the "natural" approach for several years to no avail.
Just wanted some kind of feedback that this wasn't overdosing her system somehow...
I don't know if it's still like this, but when I was considering it, the products didn't have a list of official ingredients per product nor Nutritional Facts.
And I couldn't get a straight answer from anybody about what exactly was in each product and the proportion of each ingredient...
Bloodwork is incomplete, but in the interim, our dr. has prescribed the following antibiotics to be taken concurrently.
Does this seem like a typical regime to start with?
It seems to me it might be better to do one drug at a time to gauge whether it works??
Any thoughts?? Our daughter is 60 lbs.Augmentin tabs 500mg, 1/dayBiaxin tabs 250mg, 1/dayValtrex tabs 500mg, 1/day for 10 days
I looked into this online program briefly, but ended up not pursuing it.
They are a very flexible school and cater to the needs of the child. It is home-based: http://www.clonlara.org/
All very interesting...In some respects, I'm glad there's a connection -- it shows we're on the right track in finding the needle in the haystack with what the problem is....
And if we are dealing with an infection in the brain, doesn't fever fight infection?
Bumping for more responses...
Every time my daughter gets a fever for any reason, or has a cold, her behavior improves. She is calmer and more agreeable and her tantrums decrease noticeably.
She is not currently on any meds, as we are still working with the dr. to try to get testing done, etc.
What would cause improvement in behavior??
I should probably do that (keep calling). I am so deeply in the information-gathering stage and will probably begin that in earnest very soon.
She is on 1000mg of fish oil, and oddly she seems to calm down when she's had a lot of garlic (She loves garlic and has a garlic sauce she likes on things...ewww!)
We have not tried CBT -- thanks for the suggestion.
After 5 years of being determined to solve this thru natural means, then going thru a phase where we just figured she "would grow out of it" and sticking our heads in the sand, I am finally getting the nerve to try to tackle this head on.
I am encouraged by all the help I have received here on the forum, and the hope that is out there. I feel like we are fighting the clock to help her while she is still a child and in our care.
Mycoplasma antibodies question
in PANS / PANDAS (Lyme included)
My daughter's bw just came back high in this, so I've been reading lots of pages about it. If you're talking about IgM, I *think* I just read somewhere that the half-life is about 5 days, so I am guessing in a normal situation, it should begin to go down relatively quickly.
Just reading though....still sifting thru info...