Megs_Mom
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Posts posted by Megs_Mom
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We have found it to be very helpful at full dose for 3-4 days at the start of an exacerbation. I am cautious about using longer term, and have never tried it in a full fledge exacerbation. It takes the edge off that starting phase up & then we tend to be ok by day 5. We also increase to full strength Azith (prescription allows) and often find Benedryl helpful as well, if there is any kind of respiratory involvent.
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We have found great success with Azith. But we did recently increase dose, and found much better results - maybe a weight thing. We only use every other day, sort of a pulse theory, I suppose, but it does allow us to easily increase when she is ill - and that seems to make a difference.
Hope you find some good answers soon.
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HI Denise
I can't help but think that with pandas there is of course the herx-y stuff from the treatments but also, the inflammation aspect, at the core of the symptoms, right? I always come back to that. Even if it looks like a child is having psychotic-appearing behavior, if its due to pandas then its due to inflammation, not chemistry, right? (NOt that a child obviously can't have both).
But anyway it makes me think of doing major anti-inflammatory support. maybe as soon as the ivig starts to cycle out your daughter exhibits these symptoms due to the inflammatory rebound, just like the wearing off of a steroid burst.
I would think, cytokine storm. Dr. schweig and i were thinking about this the other day with another child having severe reactions in between treaments. And with my son, that is always the direction I head when he has an increase in symptoms. Pandas is, by definition, inflammation.
Does that make sense?
Do you have anything you can use / are using for that?
We did not have the kind of rages you are talking about - our dd was more inwardly directed, which presented it's own challenges, but my heart goes out to you. I'm glad you are doing the igenex testing, as I do tend to think more in a lymey direction when I hear about the intense rage. But that observation may just be because of the small sub-set of people I know.
When our daughter had panic attacks, her instinct was flight, not fight. But I think we are describing a similar trigger. This may be silly, but other parents have observed similar things. When I first saw it coming (she changes colors, her eyes change, her lips change, I would almost say her facial structure changed - it was a very distinct look), we would ask her to eat peanuts - peanut butter was easier for her. It seemed to slow the cytokine storm that is referred to above. I did not know about Motrin at the time, now I would do both, but I am not sure I could have rushed the Motrin, as she was so severe re contamination. I carried nuts or peanut butter crackers with me everywhere we went. At the time, I thought it was a protein low or sugar low & kept having her tested for that, to no avail.
Anyway, try the nuts - so long as she is not allergic
, shouldn't hurt anyway. Hope today is a better day.
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Our dd did not have hallucinations, but I have spoken with so many parents who have had this experience. You are certainly not alone. On another board of parents with OCD children (who largely do not understand PANDAS), this is actually discussed a good bit, and seems more common that I would suppose.
It's amazing how hard it is to type a post like yours - I admire you for sharing. It is even harder to ask a doctor about this. Just know that this is not your child's burden alone.
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Hey Smarty - i am so sorry he is still going through this. Our dd's OCD did change over time, but some things are always the early warning things for us. Most of the time, they stay at that low level & just blip. Food and contamination is always the scariest & are our earliest sign - also checking expiration, checking food for "spots", things tasting "off", and so on. We had a spit & wipe thing that got very severe, but our daughter communicates very openly (we were lucky, I guess that is odd to say), and it was clearly not a tic, but was contamination based. It was so frequent that it became a habit as well as a compusion, so we did use habit reversal therapy as well as ERP.
I'm glad that today is going well, and hope it is a sign of great things to come. Sorry that I don't know much about herxing. But I so admire you and your quest to help your son.
All my best -
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I was encouraged to know that most kids grow out of it. I had no idea about that. I was thinking my son might suffer for the rest of his life with this.
Also, we haven't done any behavioral therapy and after what she said about the success being as good as some of the other treatments, I'm going to be doing that as soon as I can find a good therapist.
I missed it, but will try to hear it on tape. Just FYI (you know this, but for others that are reading this) it's called ERP therapy (exposure & ritual prevention) and is a type of CBT. Ask therapists about ERP for kids specifically to be sure they have experience.
I am a huge ERP supporter, but would caution that it is not a cure for a child with multiple exacerbations. We find it smooths things out & prevents the meltdowns and so far (knock on wood) the severe exacerbations, but we also use medical intervention (abx, supplements, prompt treatment of respiratory illnes, motrin) for prevention and treatment when she gets a blip.
If you want to start reading a little about this, you can start with the kids work book "what to do if your brain gets stuck". It's awesome & is available on Amazon. Reading this before therapy starts, even if you don't use the tools yet, is great preparation.
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Hi - the therapy that you may want to add as part of his treatment plan is called Exposure and Ritual Prevention or ERP. It will slowly teach your son how to control his compulsions, and how to help you extricate yourself from the rituals. We have a little girl with PANDAS, and the OCD is so amazingly hard. ERP therapy will not prevent future exacerbations, but it will give your entire family some really good coping tools so it is not quite so debilitating. You can find an ERP therapist by going to the OCFoundation's website at http://www.ocfoundation.org/. Good luck - if you want to see some examples of ERP therapy, you can go through some of my old posts on the PANDAS forum.
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I guess I would just add a pro for these options, which each parent and doctor will need to consider as they look at each child. For us, the pro for each option we considered was the opportunity to heal a child that had lost nearly everything in the space of a week, and to prevent future severe exacerbations. If a child cannot eat, play, sleep, think, go to school - if a child is lost - and can be found again - then that is quite a pro. We are very conservative, and took each step very very carefully. But we had a huge pro in that traditional ERP therapy helped us but did not prevent severe re-exacerbations over and over. So we had more tolerance for some careful risk. Life is so worth living now. Maybe in some odd way, we were lucky to be severe - as I am not sure how I would have made decisions if the impairment was mild. I think every child deserves 100% - it just would have been harder for me to make the decisions.
I'd advise every parent to really evaluate the severity of the child & then take it one slow step at a time.
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We only use Motrin on an as needed basis as well. But we did add daily Omega's which have been shown to reduce inflamation. This does not prevent the use of Motrin when we have a blib, but we do try to reduce inflamation in any possible way, long term.
It's so hard to talk about this disease and sound intelligent, isn't it? Does the motrin help your child significantly?
So, what kinds of effects do you see when you do use Motrin? We already use Omega's daily. I haven't started using the ibuprofen because the doc expressed concern. And honestly, I don't really want to use it regularly myself.
Well, just to reiterate, we don't use all the time. We try to use when a "blip" first starts (we have not had an exacerbation in a while, but if we did, I would not hesitate to use prednisone, despite my reservations about that drug) we use Motrin for a few days - up to about 7, if needed. At first we use it fairly regularly (6 to 8 hours) and then we dial down and see if the anxiety returns. Generally, we only need it for 3-5 days, usually with a respiratory illness.
For us, in a low level issue (we did not try in a serious place) the motrin just reduces the anxiety & let's her process things with ease. It's a startling difference actually. Sometimes, we can get away with just giving it at night - it keeps her from waking up in the middle of the night in a panic, and allows her to rest better.
I think the responsiveness of her OCD and anxiety (when it arrives) to Motrin is nothing short of astonishing. I should add that our dd has stomach issues, so we are extremely cautious, but I cannot argue the benefit.
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We only use Motrin on an as needed basis as well. But we did add daily Omega's which have been shown to reduce inflamation. This does not prevent the use of Motrin when we have a blib, but we do try to reduce inflamation in any possible way, long term.
It's so hard to talk about this disease and sound intelligent, isn't it? Does the motrin help your child significantly?
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Tracie, your post made me cry.
At age 3, sudden onset #1: developmental ped: "propably PANDAS, but we'd need to see multiple exacerbations". Everyone else: "sorry, we don't treat 3 year olds for psychiatric conditions. Good luck"
At age 6, sudden onset #2: developmental ped (who I begged for an appt): "nope, she is not washing her hands, so this not OCD, so not PANDAS (it was obsessive thoughts & reassurance compulsions 100's of times a day). I think it is generalized anxiety. Try giving her something special of yours when you leave, and tell her to keep it safe for you". (That, by the way, was like putting out a house fire with a pan of water). Everyone else: "Sorry, we don't treat 6 year olds. But I think she has (fill in the blank) Agoraphobia, Panic Disorder. But she is really too young to have...Agoraphobia, Panic disorder. Would you like an ssri?"
At age 7, sudden onset #3 and 4, with no break between: Conversation with therapist. Me: "is there anything else that can cause her entire personality to change like this? Anything else we should be testing for, or trying, any other kind of doctor we should go to?" Therapist "you like to be in control of situations, don't you". WTF? In the car, my husband "I guess we are not going back to her again?"
For the record - YES, I would like to be in control. I don't have many options about that, but I sure would LIKE it!
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There is zippo research on long term damage, but certainly we have personally seem a complete remission from PANDAS symptoms for long periods. I would agree that if a child is treated quickly and heals very immediately, and does not have continual repeated exacerbations, then ERP would be an unnecessary additional step. However, if like many many of our kids, exacerbations are long, or if the child suffers while the medical treatment is on-going, then ERP can be a lifesaving tool. Some children may have some underlying subclinical OCD, and it may be even more helpful for them. After a while of being on the forum, black and white recommendations become tough to give - it's all about doing the absolute maximum that is needed to put that child in as good a place as they can be - in terms of basic happiness and functionality.
I was massively relieved to see my daughters "damage" reverse, even after multiple untreated severe exacerbations.
If there is NOT long term damage, and it is fully reversible, then how exciting is that! Again, there is no research outside of a few case studies, for adults who have suffered since they were young. I pray everyday, that this crazy time will result in help for some of the most treatment resistant adults with OCD as well. It is a horrible disease.
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We did erp and it helped a lot. But it is very common to have an extinction burst too. So if he just started erp, it coiled be that, or an exposure or stress.
. Have you tried motrin before studying and maybe before test to see if that helps? -
We used relaxation techniques that worked very well for panic and anxiety caused by OCD or in general. They did not work on the OCD itself, just kept her calmer during it. Two best techniques for us were deep breathing counts, with hand on lower stomach, raising and lowering balloon tummy, so as not to breathe in chest which adds to anxiety. We also did a good bit of the relaxation technique where u clench and release muscles, slowly moving up the body from feet to head. She liked this very physical one, then we ended with breathing. Look forward to hearing how the music goes!
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Hi Dut - Ah, that last pesky 5%. Getting our dd back to her bed on her own was impossible in an exacerbation. But once she was at 95%, we came to realize that this was a habit based on a prior fear that was so strong I would liken it to a possession or torture. Breaking that pattern was clearly not going to be easy.
We used a kind of ERP for this. We developed a plan with our dd. Our situation was slightly more intense than yours (I was in her bed, and it was all night, not just middle of night), so I'll adapt this to your situation. First we accepted as "norm" that she was coming to our bed. Then we agreed to a new baby step. So if she is getting into your bed with you, as a first step, place a pallet/cushion next to your bed. You might agree as the first step, that she can still wake you up, but then has to lie down on the cushion and go back to sleep without additional reassurance. Then you dial this down to her just touching you before laying down, no talking at all. Once you have mastered this (4-5 nights), then you agree to move the cushion away from the bed - by an inch, a foot, whatever she seems to be able to tolerate. You might also ask her to lay down without waking you (but if that is too hard, you can add that step later).
Inch by inch, or foot by foot, she slowly moves back to her bed (hope you have a small house
). You can celebrate milestones, such as sleeping around the corner, or at the top of the stairs - by having a friend over for a sleepover, or doing a pizza party (no one needs to know why the party is happening except your family). If your situation is a little different and you need different examples how to break a fear based ritual down into small steps, please feel free to ask.
Hope this helps. To this day, I am still giddy when I wake up in the morning & realize she slept all night (this is our norm now). She is thrilled by this too.
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Hi - most of us have this problem in our homes at some point. Obsessive Compulsive Disorder is an illness that effects the entire family. Often it is very hard to understand what underlies the behavior you see. That being said, gaining back incremental control, so that your home has basic rules in it, it often possible. I hope that you find great relief in IVIG. My recommendation is that the therapy you will want to add as a coping tool for your entire family, is called ERP (Exposure & Ritual Prevention). The kinds of therapists that use this are Cognitive Behavior Therapists (CBT). Not all CBT therapists use ERP, so be sure to specifically ask when you call them on the phone.
When I was in the depths of dispair, I liked to think about parents with Autism in their homes. They have a child who often cannot even communicate with them. But somehow, most parents work with local resources to find ways to allow the entire family to cope, and to ensure that violence is not an option in their home. Because PANDAS parents often have great hope that this illness will be short lived, we often don't reach out for similar help in our homes. But many of the same tools can be very helpful. And if another child is being harmed, even with unkindness, in your home, then finding coping tools is a priority. I also worried that this illness might manifest even in adulthood. If so, my child must learn to be able to survive in the world despite an exacerbation, even if it lasted only a few days with medical treatment. She cannot suddenly take it out on those around her. So we hope to spend her childhood giving her the tools to know how to find help & control what happens to her as much as possible.
I would also suggest reading some books about OCD, as well as about how to parent an "explosive child". These are not intuitive skills. Some really great parenting skills can backfire on your if you have a child with OCD or control issues - whether due to PANDAS or other kinds of OCD such as genetics. Either way, doing ERP can really help. Here is a list of books to start with: http://www.latitudes.org/forums/index.php?showtopic=6616&st=0&p=52242&fromsearch=1entry52242.
I think for you, I would recommend the "Explosive Child", "What to do when your brain gets stuck" and Aureen Wagner's book for parents, about how to help OCD. I'll bump up the this thread too, as it has all the amazon links in it.
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The investigator who was doing most of the work in this area passed away, sadly, in 2007, taking much of her understanding and knowledge with her. That was M.S. Sokol. She was looking at the B cell marker, D8/17, a marker that pointed to a genetic predisposition for rheumatic fever. There are many papers published by her on PANDAS/infection triggered anorexia. Most are accessed only through subscription via Pubmed, but I have a paper or two downloaded that I will try to attach (the link) if I can figure it out. If you search Pubmed for Sokol, MS, you will see her papers on anorexia, infection triggered anorexia, and PANDAS anorexia.
My son is in the later stage of PANDAS (he's 12, been ill since 2003) and has recently developed the distored body image that precedes the actual anorexia stage. It is a horrible OCD. The FANTASTIC news is that exactly two weeks after his first IVIG (low dose), like a switch had been flipped, this has miraculously disappeared! It began very strong in early November, worsened over the months, peaked in early January, and it just disappeared last weekend!
Hi Phasmid - have been thinking of you and hoping things would go well. I am SO grateful that you have posted an update. I worry about this for the teen years, as we already had food issues and found that to be the most frightening part. So glad he is doing well.
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Hi - it may help to know more about what OCD is. A symptom of OCD can be handwashing, if a child has contamination fears. However, the specific symptoms of OCD can vary widely in a child with PANDAS or can stay consistant. Obsessive thoughts are also a symptom of OCD in a child - it's called "bad thought OCD" and can be very very severe. Feeling a compulsion to spell words that you say is another common symptom. There are many books about childhood OCD, if you or your husband would like to read any. So here are the facts of your situation:
Your child got sudden onset OCD that remitted with antibiotics, and returned when the antibiotics were removed. That is not controversial - that is miraculous!
While not a rare disease, the research on this illness has unfortunatly been controversial. As a result, local doctors may not have the experience to treat your child.
I think peg's advice is very wise. Make the appt, set a deadline. These doctors are often booked up for a long period of time. Perhaps your husband would be more comfortable in a University research environment? Maybe that can be your compromise? In which case, try Tanya Murphy at University of South Florida. In the meantime, try to get the local neurologist booked. Call ahead & ask if they treat PANDAS or not.
To be quite frank, this is an awful illness, and it can get worse. It can also remit after about 3 months if the child does not have any additional exposures. But the child, if untreated, is often left with a new baseline level of OCD, that may increase with additional exacerbations. Personally, I would advise you that this illness is nothing to mess about with, and to strongly encourage your husband to allow your child to be treated. You have tried the local options - it's time to get help.
Maybe ask your husband to read the blog from the director of the National Institute of Health? He even talks about the groundswell of parental advocacy (yep, that includes us crazy internet parents
) that is resulting in additional research and focus on this potentially life changing illess, that may turn mental health treatment on its head. Here is the link: http://www.nimh.nih.gov/about/director/2010/microbes-and-mental-illness.shtmlWere I in your position, 3 years ago, of knowing how to treat my child at the initial onset, I would do almost anything to get that help. Look forward to hearing how your daughter is doing.
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During our dd's 1st exacerbation at age 3, we had to pull her out for half days, as she was not eating or sleeping at school. She was not playing with other children, or interacting. It was a bad situation.
During her next 2 exacerbations, we were "lucky" and the worst parts were during the summer. We did keep her in camps, as she loves them and needed something to do, but we would only do half days, pulled her out early if necessary, ensured most meals were with us, etc. It was almost impossible to drop her off, and generally I needed a supportive staff person to pull her off of me, and someone to help her get engaged. Once there and involved, she could normally have a decent time for a few hours at a time. However, it was just fun time, no real pressure at all.
The "lower" parts of her PANDAS episodes were during school, and she did have challenges (too much time in restroom washing, arguments constantly with friends, challenges with handwriting, unable to sit in circle, constant asking of reassurance questions to teacher, unable to eat), her teachers did not really "notice" or expressed "annoyance" with her questions. She was mostly went silent, and in a large class, just faded in. She was misrable, but so long as she was not causing issues, they did not really care. This was a montessori program, and it allowed her to go at her own pace - so while she was no longer really learning, she was so far ahead of the class that again, no one noticed. The worst was that she dropped into the lowest spelling group while the rest of the class flew by her. I was actually shocked at a review session at how far the rest of the class had moved, while we were just struggling with OCD. I guess at that point, I was just glad she was surviving. They also had to help pull her off of me every day.
She was actually spitting so many times at that point, that I had to send in a change of clothes and her face was raw - but no one even asked me about that!!! Weird.
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We have a good friend whose teenage daughter got strep - 6 times over about 3 months. Clearly she was never clearing, and it would "come back" after a week or so off abx. The finally used colloidal silver, and that really helped. We were avoiding them at the time, so I remember how stressed she was about why the strep was not clearing. No one else in her house ever tested positive, so they were not passing it back & forth. They went to specialists, infectious disease, etc.
I'd ask for an abx for a longer time frame, or do some research on adding or changing to silver. They also went to a new (cheap) toothbrush daily, and changing all linens daily, just to try to eliminate anything adding to it.
I think quite clearly, your boys may be reacting to you
, so sorry. It is a disease of exposure (rise in antibodies) not necessarily of illness, once it is triggered. That can be very confusing & make you feel crazy. But maybe you have found something really important, so try to keep that in mind. Also, I tend to "keep" or "get" more stuff around that time of a month, so it may just be that your immune system is so depressed that the combo hit you. Maybe the next round will take. -
Colleenrm - Amen, Sister!!!
DCMom - OMG! That is so insane. I'd fight that - they should not have taken the co-pay.
I once got a letter from a psychiatrist saying I had "refused to follow the care guidelines" and they could no longer treat her. I was there for 30 minutes, they had no clue what was going on, and at the end just said "well, we can offer SSRIS..." I didn't refuse their care, they clearly had no clue about how to care for her". I asked for a therapy recommendation to start with, and then called ALL the numbers they gave me. 100% of the therapists said "we do teens and adults only" (our dd was 6 at the time). I have been mad a lot during this illness, but that letter, to me, was everything that is wrong with medicine. No one cared for my child, they just were practicing CYA.
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Whohooooooooo!!!
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I think the results will be important but more research on a lot of questions is needed. I don't think the results from this study will hamper that. You ask great questions
, shouldn't hurt anyway. 
. Have you tried motrin before studying and maybe before test to see if that helps?
). You can celebrate milestones, such as sleeping around the corner, or at the top of the stairs - by having a friend over for a sleepover, or doing a pizza party (no one needs to know why the party is happening except your family). 
, so sorry. It is a disease of exposure (rise in antibodies) not necessarily of illness, once it is triggered. That can be very confusing & make you feel crazy. But maybe you have found something really important, so try to keep that in mind. Also, I tend to "keep" or "get" more stuff around that time of a month, so it may just be that your immune system is so depressed that the combo hit you. Maybe the next round will take.
A reason to pulse abx
in PANS / PANDAS (Lyme included)
Posted
We pulse dose, based on our original treating doc, who was a big believer. We use azith, every other day. Once a month, we hit it for 3-5 days, and can increase to everyday if we see signs of OCD associated with illness (which it always is). It's been very effective - or at least we think it has
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