Iowadawn
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Posts posted by Iowadawn
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Hello all! Iowa is about to lose their one & only LLMD--a messy case coming before the Iowa board, that just also happens to also include treating "chronic lyme". I am wondering about DR. C in Columbia, MO and treatment style. Or anything you can tell me or PM. I'll start with this. Thanks so much. Dawn
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Chandy's research sounds strikenly similar to Dr. Karen Newell-Rogers at Viral Genetics. I think it is something like Targeted Peptide Platform. Her work is very exciting.
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Any info? Is a summary to come?
All I know is that the fb PANDAS group has been told that the presenters/conference asked that the info not be spread on social media. My answer to this is not have it open to the public. I will refrain from expressing my feelings.....PANDASRadio with Marcel Cairo(?) will host Dr. T next Wed. Supposedly, this is "an approved" method of dissemination of the info presented.
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Hi --
My DS11 has PANDAS - anxiety, sensory, ocd, Tourette Syndrome. I want to take him to a specialist and assume they would want to do blood tests. There is no way my son will go or sit still for a blood test. He has built up such fear about it. Since I know this, I have delayed taking him. Right now he sees a psychiatrist for medication and his pediatrican will treat for strep, etc. Neither seem to be doing enough. My son is not doing well and went to school only for 2 days. He has some sort of phobia/anxiety about school and refuses to go. I am just wondering if anyone else has difficulty getting their children to dr visits when they suspect they will need a blood test and how do they get their child to sit for the blood test?
Thank you! Ngold24
OH. MY STARS, YES!!! It is awful! No help, just empathy.
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I certainly had no intention to hijack the topic. I so very much appreciate the encouragement. This is very hard. Dawn
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My DD13 has Bartonella, diagnosed clinically from some of her symptoms and the tell-tale stretch mark rash on her back. LLMD just tested her VEGF level and no surprise, it is high. Before treatment her marks were horizontal stripes across her lower back. Since treatment started they have migrated to her buttocks (and are now vertical), wrapping around the sides of her pelvis and most recently have moved to the tops of her thighs. She tried to find humor in this the other day and told me they will probably travel down her legs and out her toes!
Curious to know others' experiences using VEGF levels to monitor Bartonella infections.
Our LLMD ran the VEGF on our son, who has battled bart. It came back extremely low. We will consider running the bart test from Galaxy Labs. He said that this would tell us for sure. Right now we took him off all abx so we can run the Bb culture.
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When you say a residential program- is that like a long term stay place for mentally ill kids/adults? I am at a loss to why these options are even being discussed. These kids can get well!
I'm happy to hear your child is doing well enough that you've never considered this an option. For some of us, things are so bad that we feel we cannot take care of our children or keep them safe at home. Its really an individual decision as we all are doing the best we can for our kids.
This is our situation. Impulsivity/rage/dangerous to property and others--- 13 yo hopping in the car in a rage grabbing the car keys, getting it in gear--luckily we had pulled the van directly behind. Police popped window-----Aaaa lastest of a long string. We have no choice. We have had to hire retain an attorney. $$$$. There is a lot more to the story that I will share via PM only. Our son's case has been very complicated. It has been a lonnnnggg haul, and seeking placement has not been taken lightly. He will be behind bars if we don't. This place will continue medical treatments. It is probably a year or so stay. This place isn't your grandma's dude ranch. Dawn
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We did an intake with Rogers, which we were very excited about finding. The docs there said his impulsive/aggressive/anxiety mixture was not for Rogers. Gave us another suggestion.
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We are currently working to get our ds13 into a neuropsychiatric residential program a longggg :-( way from home--the one drug they speak about to help settle down the limbic system and help the frontal lobe work better is Amantadine. The anxiety/impulsivity/aggression continues to be a nasty mix here. It is a mild glutamate antagonist, too.
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Our dr. Prescribed vistaril which is a simple antihistamine but has a proven side effect of reducing anxiety. I see your daughter is taking Claritin, I assume for allergies. You might ask about visteril as an alternative to Claritin. It helps my ds12 with both allergies and anxiety. It is non addictive and we only give it as needed.
Vistaril here too as Rx for anxiety. Our ds13 does not get sleepy from it; never did. Just an FYI--Zyrtec is the second generation antihistamine that comes from hydroxazine (Vistaril)just no anti-anxiety properties.
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Nancy, this is fascinating. You're pretty up on glutamate, I think, aren't you? I was wondering how closely this would relate to the glutamate issue that people on our board talk about. I'm woefully uninformed on that front and will have to search the boards to find more info and sources to read up on it...
Thanks for posting!
Many child psychiatrists in Central Iowa have been using Namenda for some time in the autism community with some good success, overall. I am about ready to ask our psychiatrist to put our son on it again.
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No antipsychotics in use with your child? The mouth movement stuff can come with those. Wanted to make sure, it would need addressed by the psychiatrist. Dawn
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We have a phone consult with Dr. T coming up in the next week---this certainly will be an object of discussion. Thanks for all the input.
We are working to keep the state's hands off our son--ain't looking too good right now. Keep us in your thoughts & prayers. Dawn
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do you have a dog? My dog cultured positive (throat culture) if you need more info on this please let meknow.
no dog. or creatures.
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Dawn,
What an improvement!!!!!!!
My big question... Did you test or treat biofilm's yet? If you remember DH had high ASO 295 and Anti-DNase-B 980 that went up when treated 'initially'. We have treated entire family for biofilms and strep doesn't seem to be a huge issue anymore for PANDAS/Lyme son. Unfortunately, we haven't rechecked DH recently but will ask LLMD tomorrow for lab script to see where he stands too. We have definitely had exposures to strep without flairs and a recent bacterial infection in household (did not culture). Only younger son seemed to flair with PANS type symptoms and is already trending back to baseline as symptoms resolve. However, I don't believe we'll be able to judge appropriate responses to strep until we are fully off antibiotics and have positive culture.
Anyway... 'my guess' is maybe the strep is bound up in biofilm's?
The various times we have tried to go after teh biofilms with varying amounts of flagyl or GSE--nasty. We are in the trouble we are in now after a flagyl. We have to place Evan in a residential treatment center here in Iowa (PMIC). We are attempting to keep him on our leash and not the state's. Not sure if they will bite with our offer. We have to keep it out of the delinquency side. The risk is too great because of the charge. We do NOT want to see him start getting in the JvJustice web. Pray they take our counter to their offer.
We are headed out east to Dr. T to see if there is some component we are missing or just what to do. It has been a verrrry challenging week.
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Has she had her T&A removed?
We all have our tonsils. No one wants to take them out.
dawn
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Hello all.
It has continued to be a haul for us. I have been on the forum for some time. I need to throw this out there and see what is new or recommended in Strep in the house. Our Ds13 is a PANDAS/Lyme case. He has had a number of ivig and been on abx since sept 2010. The bartonella (vegf) factor is very low, as is babesia. Strep ASO still above normal after all the abx. I ran my ASO....386. I ran my daughter's.....386. Now, for those who remember...we were a strep family with titters in the 1000's....5000 and above. So these are great. But I still think he is reacting.
What is the latest and greatest thoughts from those treating in he trenches....what to do with family members. Thanks. Dawn
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I have a script for a variety of blood tests, among them are the strep titers. We are treating bart & lyme, also. They were not "normal" the last we checked, either.
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Hello Kerry,
The first generation are H1 antihistamines and cross the BBB. Vistaril (hydroxazine) is unique among the first gens H1's in it's anti-anxiety abilities. We haven't found it to be sedating. It is still used as a calmer-downer drug pre-surgery or dental procedures. The nice thing about it is the ability to layer additional anxiety/sedating drugs on top should more be needed because there is little (if any) interaction. I only speak from our experience with this drug and do NOT say it is best.
The earlier posts with all the links gave me a better understanding, also.
I am curious on Swedo's take on the H2 antihistamines.
My two cents. -Dawn
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Ditto on the Vistaril, an 1956 first generation (H1) antihistamine. Our psychiatrist removed ds13'snpsych drugs the last time as an inpatient. He was sent home with a script for Vistaril. It has worked the best of anything for anxiety. Reading up on it a bit, one thing that is mentioned that it is beneficial if the anxiety has an organic origin. The whole benefit with decreasing Bibb adds an additional reason why I see it helping. Dawn
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Hello all.
We are really tossing around the idea of going out east. The old tmers on the forum are a bit familiar with our ds13 PANDAS/tickborne infections (B,B,&
. We have never had, what I would call, a "thorough" medical workup and wonder if turning over another stone with one of these docs should be in the mix. What does Dr. T have to say about congenital lyme. A question for the PANDAS/Lyme parents. I know he has been pretty cool to it in the past. Our son's case has been incredibly difficult. We have been to Dr. K. We see a LLMD here in Iowa. I am tired of thinking. Help me out. Thanks. Dawn -
Very different presentations here. You have the appt. Dr. L thinks the eval is warranted---go for it. Best wishes. Dawn
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Hydrate like crazy - give an extra 8 ounces of liquid every 90 min during waking hours beginning today and stopping next Monday. It keeps the headache away. Also, ibuprofen a couple of times daily for a full week after IVIG is recommended.
DITTO--push the fluids starting a couple days ahead. DAwn
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My DD most definitely has Lyme, and PANS as well. She tested quite high on the anti-neuronal autoantibody markers in Dr. Cunningham's study.
It was explained to me that in order to treat the autoimmune component (severe anxiety, chorea, and myoclonic dyskinesia) of her illness, DD needed IVIG.
IVIg is NOT a treatment for Lyme, so DD is on concurrent antibiotic treatment for the Lyme and co-infections. Her LLMD believes that her autoimmunity is infection driven, and so, as long as the infection is present, for her, the autoimmune response will continue.
(She also has been testing positive for both Mycoplasma pn and strep- whether they are aiding and abetting the autoimmunity is unknown at this time- but the abx she is on should take care of that as well.)
Since starting the IVIg, the chorea has stopped, the myoclonus is greatly improved- she is going weeks between episodes. Anxiety is under control; food sensitivities/allergies is greatly improved as well. We are hoping that a few other of her complaints that could be auto-immune responses over time will disappear as well.
So my advice is to attack the known autoimmune response [and perhaps prevent any or further damage to the basal ganglia] with the IVIg, and continue to persue looking into Lyme and co-infections as an additional trigger.
Editing to add that DD also has/had positive markers for Bartonella, and her LLMD feels that that germ should be added to the list of PANS causing agents.
~Orion
Bartonella have proven to be the stubborn bug for our ds13.
. We have never had, what I would call, a "thorough" medical workup and wonder if turning over another stone with one of these docs should be in the mix. What does Dr. T have to say about congenital lyme. A question for the PANDAS/Lyme parents. I know he has been pretty cool to it in the past. Our son's case has been incredibly difficult. We have been to Dr. K. We see a LLMD here in Iowa. I am tired of thinking. Help me out. Thanks. Dawn
The Microarray genetic test (quest)
in PANS / PANDAS (Lyme included)
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Dr. T rx'd this test. I think I kind of know why....can others enlighten me a bit. Thanks. Dawn