Iowadawn
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Posts posted by Iowadawn
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Hello al!
Right before we found ourselves in hot doo doo & now headed to juvenile court with our sick PANDAS/Lyme ds13 (That's another story for another day--just keep us in your thoughts & prayers) we started batting around the idea of heading south to Florida to Dr. M and her program. I get the feeling that the approach taken down there is more comprehensive in approach and that our son would get a good looking over medically, psychiatrically, immunological & have psychological issues addressed aggressively during an extended stay. We need some feedback on what all happens, how comprehensive, ya da yada yada. PM-ing me with specifics & your experience, especially with kids with complicated , or what has been chronic in PANDAS & Lyme-land. We do not know--are we missing something, on the right track, we/he would benefit from intense psychological treatment for the anxiety & explosive behavior that can plague him & us, How they address the lyme issues, tests, communication with docs back home. How long is wait to get in? Would we or should one of our professionals contact Drs. M & S? Has there been much resistance to getting in network coverage (we have BCBS) if a doc or two say this is necessary and unavailable treatment in Iowa. Our son is headed to court. If this would be beneficial getting it scheduled sooner than later may help demonstrate how sick he is & that we aren't deadbeat parents that can't control their son. PM me or just post. I would be ver thankful for the input--1300miles is a long & not cheap experience if it wouldn't do much good, but very short & money well spent if the help we receive is beneficial. THANK YOU!! Dawn
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((HUGS)) and A LOT of empathy from 12 years of behavior/roads like your experiencing--9 years before we had the PANDAS dx, 10 before the TBI. And I am losing it now reading your email, shedding a tear for you and your child as I shed one (OK, more than one) for our ds13. A charge of Assault on a Police Officer with bodily injury was leveled on him today. My boy is sick. Your girl is sick. All I can say is I understand your pain.
Dawn
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My son is 12, 6th grade. Dx with PANDAS and ADHD in 4th gr. He presented with tics, extreme anxiety, small hints of OCD but nothing at real impactful level, emotional lability, changes in handwriting, inability to process math when normally brilliant at it and just a whole different kid from the sweet son I normally had.
He saw his first specialist who made the diagnoses and managed it with prophylactic abx for a time but were then discontinued due to allergic reactions. We did address this and he was finally put back on but we saw a fairly regular pattern of flare ups every two months (confirmed with titers) where his behavior, tics, ability to comprehend at school went to heck.Doctor retired.
We moved on to next specialist, had very different approach and high hopes. We did see a big improvement for a while but now seem to be back in this same pattern but not able to reach a consistent improvement. He is a smart kid who can do real well at school but then totally fall behind, forget or lose assigments, can't stay organized, etc. When the PANDAS is controlled he is bored in certain classes, when it is a flare up he is crying over little assignments.
He is on:
Augmentin 2x/day
Omnicef 2x/day
Singulair
Intuniv (for ADHD)
Loratidine (OTC allergy)
Nasonex
Vitamin D
Omega 3
Probiotic
Mucinex 2x/day
Multivitamin
Ginseng (recommended by GP for ADHD)
Ginkgo (recommended by GP for ADHD)
The omnicef was added for the current flare up. He has had prednisone on past flares but gets back aches, feels weak and lethargic and feels worse when on it but eventually seems better but not for long.
Maybe I'm expecting too much, maybe this is just as good as it gets. Maybe it simply comes down to that I need to finally fight the school regarding the idea of a 504 (I was previously denied).
The other part of this is that we have become increasingly frustrated by our doctor and his office. I'm wondering if it might be a good time to simply explore our options to find a better match which will lead to better care.
I'm curious if someone has had good luck in the Massachusetts area and would recommend someone. I did look in the pinned list but did not see any Boston area people which I would think there has to be someone.
Just throwing in a comment---Loratidine made matters worse (behavior-wise). The counselor we went to at the time said she had seen similar reactions in other kids & adols. Wish I had more to offer. We are really struggling again, right now. DAwn
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It's over 2 weeks now. We started out on Augmentin AND steroids. After a few days on steroids, my son was a crying disaster. The whole world sucked, he was crying about everything, hated everything. We took him off the steroids at 5 days. Now, I'm not sure if they still did their job and we are seeing results from that, or if it's the Augmentin, but it's FANTASTIC!!!!
He's not arguing with me, he's doing what he's told. He even APOLOGIZED to me ME today for the way he reacted to something and it wasn't even that big of a deal!!! He didn't chase me around and start a war, he had simply talked back and make a comment. About 5 minutes later, it apparently bothered him that he reacted that way because he came upstairs to tell me he was sorry for overreacting!!!
<insert the sound of angels singing here>
I know this may be temporary, I know we are headed down a long road, but I am ecstatic!
Oh, and I have not been getting calls from school about behavior, he's been doing his homework without help and without a fight AND today he got a compliment from the Assistant Principal about how he seems to be "turning over a new leaf". I haven't talked to them about PANDAS, I've not had successful meetings with them in the past regarding his medical issues, etc. and was trying to lie low and see how this played out -- if things take a turn and my son needs assistance or special arrangements, of course that will change...BUT for now....
YIPPEE!!!!!!!!!!!
What dose of Augmentin, Fightingmom? Good to hear this!
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A PANDAS turned Lyme/PANDAS mom checking in here. Ditto checking into the Lyme/co-infections. Boy, those symptoms make me cringe thinking of our experience. Don't discount the IVIG. Dawn
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yes, your son sounds like a candidate for the NIMH/Yale IVIG study. pandasnetwork.org will have the ifo you need.
OCD has many different forms & presentations--not just the handwashing compulsion/obsessed with germs example we easily recognize. My son is very much like yours with the explosive rages.
Dawn
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Leaning in more of the direction of Bill & LLM. I doubt there is a disease out there with diagnostic criteria that fits all cases. We gotta start somewhere. Like the saying goes: when is the best time to plant an oak tree? Answer: 40 years ago. When is the second best time? Today. MHO. Dawn
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So, are the study participants receiving Cunningham tests?
From what I have heard or read, yes. Before & after.
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Can I come over?? **sigh** Oh, how I can relate right now. I am not a "huggie" person, but for you a ((Hug)) and a prayer.I wish I could click my heels and make this all go away for you and all of us. Stay strong. Dawn
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Our son is fighting bartonella. He bolted out of school today & ran home--smashed a coffee pot in the Sped teacher's room when he got wigged out over math. Actually, the doc appt this afternoon is what is fueling (stuck on it) the behavior issues he has had the last few days. I just looked at his back--a couple bart rashes have shown up in the last day. It has been a while since seeing any. I have read somewhere that when the psychiatric symptoms are out of proportion to the physical symptoms of Lyme to suspect bartonella. Dawn
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Oh and what's even better is his therapist yesterday told us that he's not involved, hasn't made any effort, doesn't seem to care at all and perhaps residential treatment would be an option. I had Brendan leave the room and told her that we met with an immunologist/PANDAS specialist and she told me to "be careful" with that and she'd hate to see me exhausting myself "chasing" after something like "this".
Great, thanks. And, I really, really liked her....
Abandon the therapist, really. You do NOT want a member of you "team" talking residential treatment. She hasn't a clue of what to do with your child, and basically says this when the only recommendation is placement. SHe obviously hasn't a clue about PANDAS with comments she is making. IMHO: run away & don't look back. Don't get sucked into sticking with her b/c of your feelings of her.
Our son has a hx of doing so much of what you son does behaviorally when he is not operating on all cylinders. There is no one--psychiatrist, psychologist, Lyme/PANDAS treating doc--even after boo-coo in patient stays--that has recommended residential treatment for our son. In fact, all have it in writing that RT would NOT be in Evan's best interest. PM any time. Dawn
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OK, I need someone to put up a link to Business Wire site that has the press release regarding Viral Genetics submitting a Pre-IND briefing document to the FDA for a drug to treat chronic lyme. This drug was developed off their targeted peptide platform. A BIG milestone. It is a great read. They are also investigating the use of this platform for a variety of other bugs (like strep) that certain people have problems clearing. Dr. Karen Newell-Rogers is behind this research.
Would someone be so kind to put the link up? Dawn
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We have had BCBS here in Iowa. Fought for coverage, but have had several IVIG's now. We are on our second year with approvals for a year stretch at a time. Thenmama's past posts have been very helpful. I am confident that we avoided the initial denial by including some of the info she presented when we sought approval again in January Dawn.
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Our experience with Lexapro & Zoloft was Dis-inhibition and over the top aggression/irritability---BUT the doc did not go low & slow. Dawn
SAME as Dawn! My son was hospitalized for aggression on Citalopram after 4 weeks and his dose was raised within 10 days. That's when it got bad.
Also, he had taken Abilify for a short time. Was started on a very small dose I want to say it was about 2mg and I noticed improvement. The Psych seemed perplexed that I was telling him this and told us he thought what we were noticing was a placebo effect because he's never heard of it making a difference at this dosage. He raised it to 5 mg and then 10 mg and I told him I didn't think it was working much anymore and if anything making him worse. This further made him believe his placebo theory that it was not helping at 2mg if it couldn't help at 5 or 10mg. However, I believe that my son is extremely sensitive to these meds and it may take the tiniest bit to help in a positive way. Anything more than that can have severe consequences. And, in our case, it did.
Our son's response to a LAUNDRY list of psych meds has been a combination of disastrous paradoxical effects or little effect. Our psychiatrist, who dx'd the PANDAS (we found the Lyme later) told us that it is very difficult to find a drug that works when psychiatric behaviors have infectious etiologies. The one drug that has helped and no downside has always been Namenda. He said he has treated thousands of kids and Evan's ranks in the top 3 or so in complexity & difficulty in finding something that helps. Our dubious distinction. Ivig has been what has helped most as we treat the Lyme & co. He is on Geodon & Depakote, along with the Namenda right now. Dawn
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Run, don't walk to a PANDAS/PANS doc, and preferably, someone who will seriously rule in or out tick borne infections while their at it. Our journey with our now 13 yo son is so very similar. I can only imagine that you are in a "paralyzed-what should I do" feeling. Make a plan this weekend. Make the calls on Monday. With what we have been through & your son's age this is MHO. Give your aunt a big kiss! PM me if you would like. Prayers, Dawn
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Our experience with Lexapro & Zoloft was Dis-inhibition and over the top aggression/irritability---BUT the doc did not go low & slow. Dawn
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So we are a few weeks off of our third IVIG. DS was doing great, but seasonal allergies seem to have kicked in and I think that he may have caught a bug also when he returned after IVIG. He was doing so well that we took him off of cipro (prior to this). He was still on Clindamycin though.
This is what I am noticing with his symptoms: He is good in the mornings, but as the day goes on school reports that he is getting "silly, hyperactive, and is clearly in a fog. Yesterday I got the call that I needed to pick him up. He was curled up in a ball on the bed in the nurses office no affect whatsoever. They were concerned about his motor skills (getting down the stairs safetly and the brain fog which was painfully evident---he has been having trouble since last week). His voice was also failing and eventually he stopped talking for a couple of hours (this was a first). 3 hours later he was "back" punchy, not "flat" and playing better than ever at his piano lesson. So I am finding that the peaks are high and the lows are low, but the difference is that he seems to be cycling in and out of this much more rapidly (and at times more severely) than before IVIG. Has anyone else seen this?? I am hoping that this is a good sign. The transformation was amazing.
Please excuse the rambling. I am very frustrated, but hopeful :-)
Yes, to the rapid cycling symptoms. We have never quite known what we will get after the ivig's, though, as we look back the rapid cycling (and we mean rapid) isn't near the problem with the ivig's now. He use to change into this obnoxious, drunken sailor, in-your-face and I'll just take you down and spit in your face type behavior. Bleck. He seems to come out of the IVIG's a little less bumpy than before. I did get the call from the principal a few days after the last ivig. He had bolted out of the class room to go to the principal's office. b/c a group member had cropped off the legs (so it would fit) to his addition to a poster the group was making (he's 13!) He got there and boiled and then got very aggressive with some teachers whom had followed him down the hall. He then went into a crying jag crying on the principal. From the time he bolted to the time he was able to get back in class on an even keel--about 10 minutes. We have had the weird, maniacal Jack Nicholson behavior or TiGGER bouncy---whoo--whoo-who-whoooo!!! Only to turn and be staring at him with a knife raised in his hand because we looked at him crooked. HAng in there. Sounds trite, but the alternative is to bail out on the rollercoaster ride--and that ain't pretty, either!! Dawn
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Please forgive me if this is already been posted on here. I just may have missed this info, but perhaps not. If not, I just caught a news story on the one Corinth girl with lyme disease. On a New station 13. I caught it on a Holistic News site, which did a worthy job ripping into the NYT's article that just came out.
Maybe someone can post the link. Dawn
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They are well into phase III clinical trials for the use of IVIG for Alzheimer's. Very promising results.
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Apparently, if you are from a single parent home, or are a child in foster care, then it must be stress induced
Conversion Disorder.
After all, it's been scientifically proven that only kids from "good" families with both mom and dad present can get strep/mycoplasma/lyme and PANDAS. (Heavy sarcasm.
)Yes, this intrepid journalist has borrowed Kanner's "Refrigerator Mother" theory and transformed it into the "Absent Father" theory. I would expect nothing less from the New York Times.
And what about the other 17 or so cases? I gathered from the article that 5 or 6 girls were used for this article? I this day & age you could probably take 25 random girls and find at least 5 with absent fathers or situations like these five. Just thinking outloud.
Sorry you got dooped Corinthdad.
First of all, I am so glad we are starting to hear on the forum from parents in New York. I think I could speak for most saying we have been screaming at our computer screens, praying for your children, and wishing that there was something we could do. Thank you for coming on and sharing the facts of the case. Many, like our family, have been at this a very long time. Years.
My point about the statistics of families dealing with difficult situations may have been misunderstood--the point was--The Times had a slant they wanted to make, they found some girls and their stressful situations to back up their point (or more than likely what they were paid to run down) and they present it as "see it must be so". My main point is: What about all the other cases. Why did you leave them out of your story? A rhetorical question. Most of our PANDAS/PANS?Lyme families are laden with INCREDIBLE stress when the symptoms are flaring. Stress is everywhere.
The New York cases are important. Thank you for coming on board--unfortunately.
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Apparently, if you are from a single parent home, or are a child in foster care, then it must be stress induced
Conversion Disorder.
After all, it's been scientifically proven that only kids from "good" families with both mom and dad present can get strep/mycoplasma/lyme and PANDAS. (Heavy sarcasm.
)Yes, this intrepid journalist has borrowed Kanner's "Refrigerator Mother" theory and transformed it into the "Absent Father" theory. I would expect nothing less from the New York Times.
And what about the other 17 or so cases? I gathered from the article that 5 or 6 girls were used for this article? I this day & age you could probably take 25 random girls and find at least 5 with absent fathers or situations like these five. Just thinking outloud.
Sorry you got dooped Corinthdad.
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I friend just told me this morning that she knows a child who is being hospitalized for severe anorexia. It is a life threatening situation. I do not know whether the child has any other symptoms, but my friend is debating whether she should bring up the possibility that this could be pandas. For those of you who have experienced pandas anorexia, how did you figure out that it was connected to pandas? What caused you to look into infectious triggers?
Can anyone forward me studies that mention anorexia as a pandas symptom?
Thanks so much.
Young--pre-puberty. Boy. Very suspicious. Start with a fear of choking? Sudden? Just what I have read. Dawn
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My one daughter had this one raised rash that made a trail up her forearm. Not itchy at all. After quite some time it went away. This occurred while treating. It looked like a light fungus/psoriasis type rash. Had it been itchy I would have been off to the doc.
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Some specifics needed on Rothman Center
in PANS / PANDAS (Lyme included)
Posted
Thanks for your replies and good wishes. One particular thing I am wondering about is their therapy programs to address poorly regulated mood/behavior due to anxious/stuck thinking. Autistic traits, too. Our son has had problems with the aggressive/volatile/tamtrumming/dangerous behavior. Maybe this just falls on one end or the other of OCD. Perseverative thinking. When he is good he is very, very good & when he is bad he is horrid. He has had two different Cunningham tests showing 184% CaM Kinase II activation. A couple autoantibodies elevated as well. This was before treating for TBI. Will he get a thorough medical work-up as well as intensive therapy?
Also wondering their feelings about congenital lyme & tick-borne infections. They don't poo-poo it? COme down on the ILADS side of treatment?
Again, PM me if you want, or just post. Just bumping this. Thanks. Dawn
Dawn