amy s
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Posts posted by amy s
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My dd had this as a symptom of pandas...all....the....time. The ONLY thing that helped her was IVIg. In my opinion, no amount of parenting skills or counseling, etc will work when this is a pandas symptom and especially if it is extreme.
What would I do if this symptom started to come back to my child? I'd work with a doc to increase antibiotic doseage to a treatment dose strength for at least 10 days and add ibuprofen for a few days and see if that helped.
Wishing you the best,
amy s
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Thanks for the update! For what it's worth- many pandas kids have failure with pen vk. My dd used it about 6 months with NO relief. Good luck with the T&A surgeries.
regards,
amy s
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I had asked my dd if she would like to watch it. She declined, saying that she already knew about it. I told her that I thought she might like to see or know about another child who was sick like she was. She said she didn't think so. She seems a little afraid to see it. For age 8, she however, does have a very good understanding of pandas.
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hi amy...did you get to see p,mom question......
if you could ...does your daughter have any residual symptoms....
like if she gets anxious...i wouldn't be surprised if so....it hasnt' been that long...but it sure would be awesme is she didn't
It is hard to say if she has any residual problems. Sorry, I don't really know how to answer this. I don't consider every personality quirk to be pandas. She has normal anxiety at times, I guess. Such as, she was nervous to get her ears peirced but I think most kids would be. But she did fine with it....saved her own money to have it done, went into the store and sat down in the chair and let them do it. The other thing, which I had answered P Mom in a pm about, is that sometimes she seems a little hyperfocused on things she likes, but really, it doesn't seem to be more than any other children in the neighborhood.
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Bump.
Sorry , guys, But I would really like to hear from the people on here who have cured children! They must be on because it did not take long for them to answer the pool. If my child were cured (in the true sense of the word) from IVIG, I would be shouting it from the rooftops and helping other people out by doing so. It would really help to hear the stories! I know, at the crossroads I am in right now regarding IVIG....I really need to hear it.
By the way....to those that mentioned I just ask Dr. K, well, I did....he responded..... "yes", he still holds by his claim IVIG is a CURE! Complete and lasting CURE of the condition.
Kelly
I don't know what post you are referring to but anyway, I thought I would jump on here and say that I don't consider my dd 'cured', although she is 19 months post IVIg and doing great. I am constantly in fear of things going bad again.
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We increased my dd's antibiotics for 10 days up to full strength dose for a dental cleaning. We started giving her the increased dosage about 2 days prior to the dental appt. Good luck!
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CONGRATS Amy and family. I love these posts! ?, what dose abx is your daughter on?
She is on 250mg Augmetin daily.
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I am assuming you are talking about dosing of Augmentin.
For my dd, at the time of IVIg she was only taking 250mg of Augmentin and so she continued that. I know what you mean about being scared to change anything that seems to be working. Good luck!
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I don't have any advice. I'm sorry you are going through this. I ended up dropping people out of our lives because of comments they said, etc. There are still people I am not speaking to. I didn't speak to my own mother for months on end. I do NOT suggest that you do what I have done by holding a grudge about it. People say stupid stuff sometimes when it is something they are not familiar with or do not know about. It is hard to forgive and forget...I wish I would have been able to do that back when my dd was suffering so bad.
I wish you the best.
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Just a quick update:
My dd is age 8 now, and 19 months post IVIg.... She is doing awesome! I am amazed every day. Last week she had her first dental appointment (cleaning & xrays) in a couple of years. With my prompting, her pediatrican put her on full strength Augmentin for 10 days (and then back to her preventive dose of 250mg Augmentin daily). Things are going fine.
She takes swim lessons 2x week, is doing fine in summer care, and got her ears peirced! (she had been asking about getting her ears peirced since December, but we wanted to wait until she was on full strength abs to do it...dental appointment was the perfect time).
(as you may know there were months she was homebound, I was unable to work, police, and social work were involved and she was referred for inpatient psych hospitalization, not to mention- she was a completely different person)
Now:
I tell her that this is the 'Summer of _________" (her name). This is the absolute healthiest I have ever seen her, in her entire life. Now we are beginning to look back and see that the 'sudden onset' (which was horrific) on August 12, 2007....might not have been the actual onset.
We are so happy that she does not have any cavities, as we have not taken her to the dentist in years. We just couldn't. Going to the doctor (and tests) was all we could do.
I saw a recent post about heart involvement. Her last visit to the ped for exam was in November. There was no heart murmur heard then. However, she had a heart murmur 2 years prior to 'sudden onset' (with clear Echo) and she also had huge changes in her EKG during her 'sudden onset'. However, she was given an immediate Echo after that and they did not find any significant changes. On her next vist, we will definately re-examine this concern.
I always am thinking about all our pandas children and family. It is a difficult time but I wanted to give hope that someday things can be a little normal!
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Can someone please explain how is this NOT sydenham's chorea?
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A lot of people have a lot to say about this but you really need to research it yourself and please be sure to see if it is contraindicated with everything else.
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peglem, you are such an awesome Mom! I am throwing out hugs and thoughts and kisses for you and your family that Allie feels better soon and you can get some REST!
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I am sorry Grace, that you and your family are going through such a hard time. Hang in there.
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Pete- thanks for editing your post and giving us more history and info. I am so sorry that you are not well.
I don't have any info about pandas in adulthood but yes, i believe your illness could be related to your strep exposures/infections as a child.
Have you ever taken steroids for anything...for example, in your life did you take steroids for poison ivy, asthma or anything? And if so did your symptoms go away?
I think you should email Dr. K and see what he says. webpediatrics.com is his website.
In my child, pandas completely got in the way of any sport, or even brownies/girl scouts....just fyi. It doesn't affect everyone the same.
I'm wishing you the best. Keep us posted. Get to your doc and get an ASO and AntiDNAse levels.
regards,
amy s
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Vickie this is an awesome article. How on earth did you find this? I am so amazed that by now every single person with a mental disturbance is not tested for some sort of bacterial or viral cause. Thanks for sharing this.
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Hi,
I suspect PANDAS/PITAND in my son. He had a dramatic change of personality six years ago. What we began to see what sudden swearing, rages, mood swings, swearing repeatedly and then stopping and saying he didn't even want to do that, flipping out if we told him to stop something, obsessions with video games and tv shows he formerly could easily turn off, tearing things off of walls, cutting up sheets with scissors. He also started freakishly begging to measure the school perimeter, and almost desperately needing to count the tiles on the walls. His foot began tapping and he needed to turn around every time he reached a stair landing. Every time he answered (and still has this problem) the phone he had to do some weird ritual. Had bedtime ritual of saying something every single time. He received a diagnosis of chemical sensitivities and lots of new allergies. He reacted to anything, hairspray, paint. Suddenly sugar was like giving him a psychotic drug. He would fly into a rage the minute you gave him a banana. Over time we were able to reduce these behaviors with diet, micronutrients and a bit of lithium. But even still, at school they see all kinds of weird behavior -- suddenly he start making noises out of the blue, he clears his throat loudly repeatedly, can't help but get into people's personal space and make annoying sounds to but them. Then if they say to get away he'll start to get angry. Too much punishment can result in a rage now.
He had a trauma three weeks ago and everything is so much worse. Then he started having to pee frequently for about a week and he eventually had a really sore throat. They said it wasn't strep. I had it tested twice. No strep, but the doctor said it looked like strep.
Now he goes after this kid at school and impulsively or compulsively provokes him almost as if he can't control the urge. He also developed this weird thing where if he had exercise he would get so revved up that it would almost turn into anger, or such ADHD excitement we are all uncomfortable being around him. His excitetment and happiness can turn on a dime into anger as if he's on a teeter-totter. Even lots of laughter can make him disregulated and uneven.
He kicked two kids really hard because he got so excited playing with them. They both bled. It was very very sad.
NONE OF THIS IS THE INTENTION of my very intelligent, empathic and charming son (which is what he is most of of the time when not stressed)
SOS. Do these behaviors sound consistent with PANDAS? There are so many issues here.
I thank you in advance for your help, your insights and your compassion.
pat
Yes it does sound exactly like pandas to me. Read all you can and start printing off all the peer reviewed medical journals that you can find in order to convince and educate your doctor. Email Dr. K. webpediatrics.com is his website where you will find good info too. My dd did not culture or test positive when swabbed for strep, either. I think a lot of these kids don't and also I think I read somewhere that the error rate for swabs is pretty high. Good luck to you in obtaining treatment for your child. hugs to your son.
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Thank you, SF Mom for posting this! I had not seen this before and this is a very important article to provide to those who are treating and preventing strept re-infections in our children. I am going to print this when my printer works and make a bunch of highlights. This is good stuff. Thanks again, SF Mom.
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My son had irritability huge – he would go into full on melt downs out of the blue over the smallest of things, Know one was out of his target zone – unfortunately for us, alongside the separation anxiety, after IVIG this seems to linger longer – it has resolved now.
Exercise seemed to help, when he was in a rage I made him run stairs in the house – I would start with five sets, if he was still angry, five more…this tired him and he would eventually mellow out.
It wasn’t an option – I’m bigger than him and sometimes I had to stand right behind him on ever step …but we did it…it made him physically tired….which helped with the rages.
My child had random irritability. I don't know what would help. Sometimes epsom salt baths were calming, if we could get her to take it. But of course the effect was temporary. Really, the only thing that REALLY helped my dd was IVIg. She just continued to get worse, and worse and worse until she had the IVIg. Monachat, has your child had IVIg yet?
When my dd would rage, I weighed approximately 100 pounds more than her and there is NO WAY we could do that exercise stuff, just because of the quality of her rages. Her rages at times required 3 people to hold her, for everyone's safety. Even attempting to be near stairs might have been a deadly accident waiting to happen.
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Just like all of you, I sit here and look at my son and all of the questions run through my mind....what if I'm wrong what if its not PANDAS, why are his symptoms different than one of the other kids, will he ever get over this, will my family survive this, blah blah blah.
But has anyone ever had a CT scan/MRI? Does the basal ganglia show up on either of those scans? Is there anything else that shows up on kids scans?
My son, 2 years ago during and episode of PANDAS, did have an EEG and that showed nothing out of the ordinary.
My dd had 2 EEGs, showed nothing, 2 MRIs (showed nothing) and a "SPECT scan" which DID show inflammation in the basal ganglia "indicative of severe OCD" which we already knew she had. I paid out of pocket for that. It helped us to substantiate our case to the pediatrician about IVIg (didn't go through insurance so I don't know if that helps for insurance or not). But it helped in putting all the pieces together for our pediatrician. We did not try a PET scan or a CT.
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This morning things were bad. Really bad. I thought for sure we were going to end up in the crisis unit and off to the psyc ward. With everything out of control and that stupid helpless feeling u feel when you don't know what to do to help your child. I swear if we ended up in the hospital they would admit me. Sometimes I feel like a lone soldier in this dirty war. The thought of having to explain my daughters condition to yet another person was overwhelming today. Yes, today I am weak, and the fight in me is getting weak too. I was at my wits end. Then Dr. T responded quickly and put things back into perspective. With 2 weeks off Biaxin and just recently starting up again we may be seeing a die-off. We are adding steroids to the mix so I am keeping my fingers crossed. I hope tomorrow starts off better...
Me too! paralyzing anxiety, never wants to set foot in his school again, they all hate him, etc.
Somehow a school staffer was able to walk him to school to her office, thank God she is an old friend. Wonder if I should add steroids back into the mix, he is healing from IVIG and it is ROCKY right now. It's been two and a half weeks.
I hope things improve for you. We may be headed down the IVIG road too. It scares me.
I feel your pain. I know a lot of us have been there. I am sorry that you are going through this right now. Every sentence you wrote, I can relate to. Don't be scared of IVIg. Things, for us did not get better until IVIg. Quality of life for everyone will improve so much, if IVIg works for your child. Don't let this get you down! You have to remain strong and keep fighting to get your child healthy. Some times I look back at the horrific experiences my family had with pandas and I don't know how we made it through at all. I am hoping that you will also look back and see how strong you can be.
Hang in there!!! -
HI all-
I thought I would jump on here and give you an update regarding my dd. She is almost a year and a half post IVIG. She is doing great, in my opinion. She is completely functional and her usual sweet funny and smart wonderful self. She is not perfect, and yes we have had a few minor bumps--- she has needed an increase in antibiotics 2x since IVIG. She takes Augmentin still prophylactically and will continue to take it for as long as I can convince docs to give it to her.
Briefly her story: She had extremely severe life altering and classic sudden onset OCD along with all the rest of the pandas symptoms. This went on for 9 months before we could get her on antibiotics (PCN did not help her) and a total of 15 months before we could get her IVIG. It was severe enough that she could not attend school, we had police involvement (due to RAGES in public), our lives completely turned upside down and the whole family living in paralyzed fear of a 6 year old. She was classic exorcist. I even had a nurse ask me if I had considered that she was satanically possessed.
Every part of her was affected. Her brain, joint pain, bowels and bladder, she walked like hashimoto, her entire upper body shook constantly including her head, severe debilitating OCD (the absolute worst symptom) and she had a weird hand licking tic, severe skin picking and severe rages lasting up to 4-5 hours long.
She had mycoplasma, strept A and B, bartonella, EBV, HSV I, Cocsackie virus and a bunch of other stuff. She went on zithromax and augmentin for a time (a month with no change) and then she did two steroid bursts in a row immediately prior to IVIG. I have given periodic updates so you can go back and do a search as to how she responded, but we saw continued improvement for the whole year. Within a month we saw huge improvements and she was back in school 2 months post IVIg--might have been able to go back much sooner, but it was winter break.
I often read on here about how everyone wishes that the older ones would come on and give updates. I have said it many times but we were truly suffering and had to try to live life again. I do check on here but to respond over and over to the same type of posts is heartbreaking and brings us straight back. And the other thing that I want to mention is that I don't really feel like there are very many with symptoms like my child's. I don't always want to answer questions like, how soon did you see symptoms go away after IVIG' or a question like that..... because my answer will be different. My child's symptoms were so severe --- of course it was extremely noticable when the symtpoms started going away. So a lot of times I don't answer because my answers don't seem to fit some of the questions.
I think about all your children constantly and hope you all have the good outcome like my dd has. Much love to all!
Regards,
amy s
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Hi,
Does anyone have gut issues resolved with IVIG?
We are considering IVIG for our kids this summer( hoping insuranse will cover) and would like to know if it will help my older kid's gut issues.
Right now the gastro is testing him to see for IBD. I have not done the ABX for him only because of his gut.
Thanks,
Madhu.
My dd had complete resolution of gut issues with IVIG. Good luck to you!!!
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That is very interesting.
I actually believe that some day we will find that bacteria/viruses/etc.. are the main causes of all psychiatric illnesses.
Any thoughts?
Colleen
I totally agree, ....
bacteria/viruses and what about severe vitamin deficiency (which---given how we know viruses work, the deficiency could be caused from bacteria/viruses-!!!)
Just google vitamin mega doses and schitzophrenia or vitamin deficiency and schitzophrenia. A lot of people are talking about this now. Some are apparently disproven, but these days I don't discount anything. I have seen some amazing things happen in adults once vitamin/mineral were stabilized.
(please if you are a parent looking for help for your pandas child, do not just independantly begin a vitamin mega dose without a physician's guidance- some vitamin over doses can cause severe problems....google 'vitamin overdose' for some examples)
Hang in there!!!
Streptococcal Superantigens
in PANS / PANDAS (Lyme included)
Posted
Wendy- this article is a GOLD MINE! Thanks for posting it. I don't think I have seen this one before?