kcdc3
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Posts posted by kcdc3
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Does your daughter have dyspraxia (motor planning) problems? Or are these skills she has lost since being dx with PANDAS? Sounds like my son, it's not that he doesn't want to, but he does not have the motor planning to always carry out, very typical of certain types of dyspraxia. Self help skills are still difficult for him.
I don't know - I've never heard of that......I don't know if she's lost skills due to PANDAS or not - she's had it since age 6, so it's hard to tell - it's like she's stuck at age 6 in these facets. Could be completely co-incidental.
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Just wondering if there is any trend in the birthing history of any of our PANDAS kids. Any of you experience pre-term labor that required the use of Terbutaline to stop contractions or the use of a steroid to speed lung devlopment? I had to take both when pregnant with my PANDAS dd. Pre-term labor started at 20 weeks.
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kcdc,
may I ask the same question of you? is strep a major component of your childs PANDAS? and was the mycoplasma level in addition to that, or just a possible explanation of your child's symtpoms?
momaine, you mean normal range in titers, right?
thanks
Faith
Hard to tell - her strep titers have been normal in the past (except with the last confirmed case of strep in July where she developed the tics and did not have any strep symptoms). Dr. T mentioned something about Prevnar vaccine may have something to do with them staying low? Not sure, confused about that. The Mycoplasma was a complete surprise - but my dd seems to react to any kind of virus. Not sure what triggered the PANDAS - whether it was an undiagnosed strep or the Mycoplasma.
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We are on Day 3 of Biaxin (generic). I have not noticed anything improve as of yet, but did notice the cough that some were talking about that came with starting the Biaxin. She had a steroid burst at the beginning of the month for 5 days - it virtually got rid of the tics, but now we have them back plus more OCD. I counted yesterday for 5 minutes, then did an average for a minute. I multiplied the number by 60, and if she continued to do them for the full hour she would be making sounds (tics) 240 times an hour and performing some sort of ritual 120 times an hour. I'm hoping the Biaxin kicks in soon, but I also understand that in chronic cases, it can take months to rid the body of the Mycoplasma.
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I had chronic strep as a chld and had my tonsils removed at age 7 - the doctor told my mother that when he took them out they fell apart - he said they were literally "rotten".
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Hi kcdc3,
I see the same thing with dd and it starts just before infection and can go on for up to 2 months. She reverts back to a toddler, and I follow her around restoring the hurricane that she leaves behind.
Is there anyway that your dd could have a second infection that has not been tested for and it's lingering around. Also, read up on PTSD, as this can leave you in a "don't care" attitude. I think these poor children are way overstressed with what they have to live with, it must affect them deeply.
And, is this a change in her that you have not seen in the past before she became ill?
She has been tested for everything and the only infection we can come up with is Mycoplasma. Her strep titers always stay low, but she has had encounters with it. As for if this is a change that we did not see before she bacame ill - it's hard to say because she's been ill with this since she was 6. It's like time stopped then and we've never went forward. I would expect a 6 year old to have some mannerisms like she has, but it looks like by age 10 1/2, she would have learned certain things like eating with a fork and basic stuff - under normal circumstances, I guess. I have not thought about PTSD.
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My dd is 10 1/2. I am so frustrated and just wondering if anyone else has these problems and can offer any suggestions. I can not teach her anything relating to cleanliness. This is not an OCD thing. It's not like she doesn't shower or anything like that, but she just does not care about her cleanliness at all. She does not put on deoderant unless I bring it to her and tell her to put it on. I have to lay her clothes out for her every morning and lay the deoderant out with it. Even then, she does not put it on. I have to ask her every morning if she did and then make her go back and do it. She has never been potty trained at night - she still wears the Goodnights and I bet they weigh 5 pounds in the mornings. She just leaves them laying around wherever she takes them off. I have talked till I am blue in the face about throwing them away - she will not do it to save her life. I just found one that has obviously been laying around for a while - in her hamper. She will eat food and if she drops any of it, she will just leave it there (I found wet crackers around her tub). Every morning she leaves for school with food on her - she uses her shirts as napkins, even if I lay out a napkin for her. She never looks in a mirror to see if her mouth is clean. She eats with her fingers (even non-finger foods). Anyone else have this problem and have found ways to nip it???? Does this just go with the PANDAS territory? People must think I just don't try to teach her anything!!
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I know it is confusing. I get confused daily about all of this. I've been confused for 4 years, ever since this started. The best way to describe it is a roller coaster. There are days when I want to walk away and days where I have tremendous hope. Every doctor seems to say something different, but I just have to hang my hope on the possiblity that maybe something will be different "this time". I too, wondered about the Mycoplasma and how did you treat something that may have been in the past. I've googled IgG Mycoplasma 17 million different ways. (My daughter has positive IgG Mycop, but the IgM number is normal indicating not current but at least 3 months ago). The only thing I could come up with was this from LabCorp.....it says that the IgG number could be elevated and the IgM number be normal and explains that the IgM may not be there during a reinfection.
From LabCorp:
"Specific IgM antibodies may persist for several months after infection or be absent during reinfection."
So, if my understanding is correct, you can treat Mycoplasma based on the possibility that it may be still there since the IgM antibodies may not be there upon reinfection.
I've not dealt with the IVIG, so can not be of any assistance there.
All I can say for sure is I feel your pain!!!! Rant anytime you want - it's good sometimes for the rest of us to know we are not the only ones who feel that way.
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Dr. T -
Our son's mycoplasma IgG was 3.9! (on what looks to be the same scale). The IgM was negative. He has had significant trouble eradicating strep. Sooo... without the positive IgM--you still go after the mycoplasma?? We have since had IVIG (Oct 09). I'm assuming these mycoplasma IgG's are gone?? We are going for a second IVIG--found out we havebeen quite the strep factory in our home. Our son lost his good gains by 3 mo post IVIG. He has been on Augmentin 875 bid for almost 5 months now post IVIG. I know Augmentin will not get mycoplasma. Thoughts.
Dawn
Here is something I found on the LabCorp site about Mycoplasma testing. I'm not a doctor by any means, but if I read this right, the IgM number can be absent during a re-infection, so just because the IgG number is positive does not mean that they are not currently having issue with it?? (see last sentence) Anyone else reading that like I am?
"A positive result indicates prior exposure to Mycoplasma. A single positive IgG result may be present in the absence of any clinical symptoms as specific IgG antibodies may remain elevated long after initial infection. Recent or acute infection can only be documented by a positive Mycoplasma IgM result and/or a significant increase in the IgG value between sera drawn two to four weeks apart. Specific IgM antibodies may persist for several months after infection or be absent during reinfection."
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Yes, we are "T" patients.
Our dd is obsessed with her weight. She has panic attacks in restaurants or if there is too much food on her plate. When that happens, we know we are getting ready to go into an "attack". Then, there are some days that she doesn't seem too concerned about it. She has major OCD symptoms, most of which center around obese people, food, etc. She also has tics. Her strep titers have always been low, although she did test positive for it last summer without any physical symptoms. I think her titers rose at that point, but it scared me because if she can test positive without symptoms, how do I know when she gets it??? We've ran her titers 2 other times and they were both normal (one before the strep and one after). We just came off of Clindamycin for 10 days and a steroid burst. The tics did pretty much go away during that time, but they are back. Mycoplasma was the absolute last thing I would have ever expected.
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Us too!! Our daughter's levels were at 2.15 (IgG). Her IgM was normal. Did you just get positive IgG?
We start on generic Biaxin tonight. We are praying this is the key!!! She has suffered for at least the past 3 years with OCD, which is starting to morph into anorexia. She developed tics in July (directly after a strep infection). It truly has been a nightmare. Please keep us updated on your progress.
Kim
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So is this why some kids who don't have issues with strep, but have the Lyme or Mycoplasma or whatever else - is this why their CAM numbers are in the PANDAS range?
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We went to my doctor (who has a lab on-site). He did it for me and charged for a "blood draw" - $25, even though my dd was not a patient there. Perhaps you have a doctor's office that has a lab on site that would just charge for a "blood draw"? They don't have to do any testing, so really all they have to provide is the person to draw the blood and then spin it for you.
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Yes, I agree- if you choose to wean off of an SSRI, it has to be done very slowly. We took our dd down in 25 mg increments every 2 weeks. When I told my doc that I was going to take her off of it, he told me that he really thought she should stay at just a lower dose. I asked him if I wanted to take her off completely, how would he recommend and he did state every couple of weeks to lower by 25 mg (since that is the dose that the pills came in). We got to the "lower dose" he recommended and nothing changed, so we just kept taking her down. I think in all it took us over 2 months to get her off of it totally. If your doc doesn't want your child to go off of it, he should at least tell you how to take him off should you choose to do so. You will be able to tell as you come down in dose if things are going to get worse. If nothing changes, then it might tell you if it was helping to begin with.
PANDAS kids do have to be careful when using SSRI's. Some PANDAS kids have adverse reactions. As stated on the PANDAS Fact Sheet ...http://www.latitudes.org/forums/index.php?showtopic=6265
Cognitive Behavioral Therapy (CBT) has been shown to be effective in some children with PANDAS and to provide families with coping strategies during a PANDAS flare [storch2006]. Caution is recommended for using SSRI's with PANDAS/OCD as there are reports of higher activation rates in such cases [Murphy2006]. In addition, there is a lack of controlled studies showing safety and efficacy of anti-tic or anti-OCD medications (e.g., SSRI and anti-psychotics) for children in the PANDAS subgroup.This does not mean all PANDAS will have adverse effects with SSRI's, but they should be used with caution. There are some kids who use a SSRI on this forum and do fine with what dose they have been given. Also, if anyone decides to wean their child off meds, you should do so with the help and guidance of a doctor. Only add or omit one thing at a time with a child so you can tell what is helping or hindering.
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Hey there - - I just wanted to say a word about going off the Lexapro - - I was on it for over a year and didn't really feel like it was making a difference - - at any rate, I had to start the weaning process 2x because the side effects were so great - - nothing emotionally, but I got these CRAZY "brain zaps" - - all the time - - the only way I can describe it was feeling like I was "zapping out," "zapping in" - - over and over and over - - a million times a minute - - along with dizziness. It took a few months for this all to actually go away - - and I went A LOT slower on the tapering down in dosage than "recommended."
Yes - my dd went through horrible withdrawals when she came off of Zoloft- she mentioned the "brain zaps", dizziness, also. It took her several weeks to come out of those, but she was only on the Zoloft for 4 to 5 months. The withdrawals were worth it, though when after she came out of that she was much better in some ways.
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He takes Lexapro(OCD) and Penicillin( PANDAS) in am and then eve takes Penicillin( PANDAS), abilify ( nos mood disorder) and clonidine ( tics and sleep)
How long has he been on the Lexapro? Have you noticed his symptoms getting worse and worse as time goes on or did they get better?
It was our experience with an SSRI that our dd's symtoms just kept getting worse while she was on it. Each time the dose was increased, more bad behaviors surfaced. It was during this time, that we experienced one of our "exorcist" rages. We took her off the SSRI against the advice of our physician and we had a different child - for the better - I'm not saying she by any means was at 100 %, but it took her from 5% to 50%, I guess. After we did that, we read somewhere that SSRI's sometimes make the symptoms of PANDAS worse. Not saying this is your case, just trying to see if there might be a connection?
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I would say that I definitely have thought my daughter was possessed at some points during this journey. It's only happened about 4 or 5 times during exacerbations - it was most definitely scary. She would drool, growl, get on her hands and knees and speak to us in a very derogatory way. At another different time, she hallucinated and was scared of the "ghosts in the room", she began to see objects not in their proper sense. It was almost like she herself was not possessed, but that she was scared of ghastly things that she thought she was "seeing". The only things that you note that I did not see during the very short episodes were tics and capability of harming. I have never had her titers checked during one of these episodes - they are too quick. These episodes did come on quite suddenly and did not last for very long - just long enough to think we might need to consider exorcism!!!
Thankfully we have not seen one of these for about 5 months and the last episode was mild compared to some she had earlier in this "journey". -
Poster Name: kcdc (Kim)
Location: Central NC
Year of birth/age/gender/weight: 1999/10/Female/78 pounds
History: (Very brief) OCD symptoms started within 30 days of a "suspicous" strep throat at age 6. Negative throat culture/negative swab, but still "suspicious" per doctor. Antibiotics given, but told to stop using them due to negative culture. OCD symptoms waxed and waned for 2 years. Major burst of OCD at age 8 - not able to function. Another burst at age 9. Tics after a documented strep infection at age 9.
Any previous diagnosis: Possible ADHD - but I think this is a mis-diagnosis.
PANDAS symptoms and order of prominence: OCD (continuous), anorexia (continuous, but some days better than others), Tics (have come and went concurrent with abx use, but currently continuous), clothing sensitivites (continuous), urinary issues (continuous), separation anxiety (at height of symptom burst at age 8), Hallucinations during height of exacerbation (age 8 and 9), Difficulty with math, handwriting (varies with exacerbations). emotional lability (only during exacerbations), rages (only during exacerbations), Oppositional (varies), Panic Attacks, Dilated Pupils, "Deer in headlights" look when exacerbation is coming on. At extreme height of symptoms - "Exorcist syndrome" - that is probably the scariest and worst. Thank God we have not seen that in a while.
Results of testing: ASO - always low; Dnase - high after positive strep, trends down over several months. Currently at 166 (4 points from "high" according to lab. Only one "documented" positive culture, but I think there have been several others that we did not catch. She cultured positive at the time it was positive with no symptoms. Ferritin levels - consistently low (on Ferrous Sulfate supplements); Currently awaiting results of Lyme, EBV, IGG's, etc.
CAM #: 166 out of exacerbation
Antibiotic use: Amox. 500 mg BID for 30 days after positive culture in July 09. (Resulted in 100% turnaround within 5 days, but then a regression. - Tics also came on at the time of this strep infection. Zith 250 mg/daily for 30 days (Resulted in another turnaround quickly, but then another regression). Zith 500 mg/daily 20 days - (no additional positive results). Currently on Clindimycin BID 10 days. (Currently no positive results)
Doctor's and protocols: Psychiatrist was 1st consulted at age 8. Did not believe in PANDAS, would not pursue. Pediatrician believed in PANDAS, but would only treat with a positive culture. Saw a Neuropsychiatrist, who diagnosed her with PANDAS and a sleep disorder - gave the Zith but he can no longer be reached for treatment. Currently with a pediatric neurologist who is treating with steroid burst, Clindimycin and has ordered additional testing.
Steriod trials: Currently doing a 5 day steroid burst - 40 mg / day for 5 days. No results yet. Has one more day to go.
I understand that results can come as long as 3 weeks after 1st dose.
Additional therapies/supplements used: Tried SSRI (Zoloft) - made things MUCH MUCH worse. Tried St. John's Wort, Omega Fish Oil, Inositol, various natural remedies - no difference. Currently using Advil therapy - too soon to report any results. Currently on Ferrous Sulfate supp due to low Ferritin.
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Believe it or not, our dog - a 50 pound Boxer - has actually been diagnosed with OCD and takes Clomipramine daily! Our dd thinks it is so cool that she has something in common with the dog....it's funny to hear her talk to her - sometimes I'll hear her telling the dog that "she understands what she is going through". Sweet (but sad, too!!).
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We need some sort of "symbol" - like the puzzle piece symbol for Autism - but like Vickie said - keep the black and white colors out of it!!
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What is the cost to attend the conference?
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Have you tried months-plus of Augmentin XR?
Despite some saw-toothed recovery patterns, overall, our DS12 IS recovering, slowly but surely. And I've seen similar reports on the efficacy of XR.
Hang in there and don't give up! Consult the experts, keep trying different abx, and give them time to kick in and work. I don't know about you, but when we saw some almost instantaneous (within 2 days) results from the abx, we made the assumption the improvement would continue exponentially at that rate. It hasn't. But it has continued, just not as dramatically as the initial results would have led us to expect.
I will keep my fingers (and toes) crossed for you!
We have yet to try the Augmentin XR. Just getting the Zith was hard enough! Hopefully Dr. T can presribe that when we speak with him.
When you say give them time to kick in and work - what time frame are you looking at?
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I think consulting with Dr. T is a great choice. I would also check everyone in the house: ASO and Anti-DNAse-B to make sure other family members are clear of strep. Similar to Saving Sammy recovery takes a long time...... so keep up with the antibiotics and perhaps a switch is required but have a PANDAS Dr. guide in that decision.
-Wendy
We have not checked everyone's DNAse titers- would that necessarily show anything? Would that confirm someone as a carrier?
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Don't know anything about your religious viewpoints, but we go to a private Christian school and I absolutely love it. Not all private schools are the same for sure. We pulled our daughter out of the last one she was in because they wanted to produce Harvard graduates, which is fine if you are inclined to it. We did not need that - we just needed a supportive environment, not only for our daughter, but for us as well.
We sold our house and moved to attend the school she is going to now. We love it. Our daughter is accepted for who she is by her teacher and the administration. They knew it going in - the good, the bad and the ugly. They give her accomodations and even though the class size is not all that small, they take the time to make sure she succeeds.
My dd failed the 4th grade last year. This past quarter she made the A/B honor roll. She did that still in the midst of PANDAS - so I totally give the honor to God, first of all - but to her teachers and the administration who have put blood, sweat and tears into her.
I think that is the key - if you are going to go private interview to the max. You will know when you have found the right one. If they even hesitate when telling them your situation move on. There are schools out there that really do care about your child and want to see them succeed and will do whatever it takes to help make that happen.
Public school does have it's pluses if finances are of concern and also you have the law on your side when dealing with a public school. I don't think private schools have to adhere to ADA or any other law concerning IEP's but finding one that CHOOSES to do that is where you need to be shoudl you choose to go that route.
Thankfully we have not seen one of these for about 5 months and the last episode was mild compared to some she had earlier in this "journey".
Age Regression/Unable to teach
in PANS / PANDAS (Lyme included)
Posted
Yes, she can follow commands - right away? No. Second time? Not usually. Third time? Maybe. It usually takes several repeated attempts to have her follow through with any requests.