Megs_Mom
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Our daughter's OCD in an exacerbation also leads to borderline eating issues - hers are due to fear of sugar & fat. I always worry about the eating issues.
Hope you figure it out soon, am praying for you.
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I love the power of parents networking. Thank heavens for the internet and parents who are so willing to share. Hope it goes really well tomorrow.
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Hi Airial - We love Murphy. We did azith for a long time with solid improvement, but still blips with exposure - much more evened out, however. We recently increased azith, although we still do a 4 day a week routine and boost it up when exposed. The increase (she is 9) was significant, and she now is 99.9%. I would say 100 but, you know the drill.... She has had 3 exposures to strep in the classroom with no problem. We are just having our first major respiratory illness, which are usually awful for her, and are seeing ZERO OCD on this time - she still ist getting the stomach aches, but could care less about the whole illness, and is still happily bopping about the house in the holiday spirit. I am amazed. We are not even doing Motrin at this point.
I am not sure what Azith does for us, but at the right dose, it seems to balance her out, and prevent the exposure cycles. If she gets strep, I think we would add a second abx, but I would be very hesitant to take her off. I don't necessarily think the azith is the answer to avoiding all strep, but it is doing something else for us - something really awesome.
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I am having dull aches right now in my lower back. I have had back issues prior to Lyme Diagnoses off and on for about 6 years. When I started treatment my back felt a ton better..... and over the last two days its killing me, its like nerve pain or something. Feels like I have the flu in lower back and can hardly lift my daughter. I've been on multiple antibiotics for 3 months now. We are currently provoking for Bartonella. Trust me, I'll be happy when this passes.
Meg's Mom when did your DH start treatment? Your husband neck issues sound painful... I sure hope his herxing moments are brief.
-Wendy
Yuck, that does sound awful. He started a month ago, but we have had to take a break, which means he has just started over again. So month 2 will start on 1/20. He injured his back to the point of immobilization twice this year, once about the same time as starting the Babesia treatment. As a result, we had to stop & use Prednisone, and so we wrecked the babesia treatment. It has been a rather frustrating time, but our LLMD has been very helpful & supportive, and we've just had to deal with the first emergency, and then move onto the next step. Given how long he has suffered, he has a great attitude, and is just eager to be done with all this, and to feel human again. We think the back injury is likely due to the pain he was having from babesia and bartonella, that was causing him to hold his body all wrong.
I hope the herxing is brief too - he has been through enough. But mostly, I want my family back in one piece, as we all do here. Hopefully 2011 will be a good year for all. 2008 and 2009 were the years of our mystery illness's. 2010 has been a year of healing for our PANDAS daughter, but a year of pain and discovery for dh. 2011... healing, we hope!
We were able to laugh tonight about the last year. Our goal set Jan 1st was to figure out what was happening to him, and to refuse to give in to the diagnosis' he was getting without a fight (ALS, Fibermyalgia, Psorriac Arthritis, Neuropathy - all sudden onset at around the same time, all waxing & waning in symphony, all increasing over time, all leaving permanent damage.... He even had one doc tell him it was in his head. Another said "I am blase to pain - you will just have to get used to it). Prior to all this, he was extremely healthy, never sick, exercised daily, very healthy diet. Now he is starting over again with trying to just walk around the block. Maddening! Anyway, we laughed because we live in NC, so we had to drive 6 hours each way to find an LLMD. It was the longest ride of our lives and I told my best friend after that we might be on the brink of divorce.
He was so mad at me for making him travel there & it was an experience so outside of our comfort zone. OMG, I hope never to repeat that drive home again in my life! -
Thanks SFmom and Meg's mom for the life cycle info. DS14 seems to have symptom flares in 2 week cycles. We know he has Bartonella (he has the rash) but have to wait until Babesia treatment is finished before addressing that. It is going to be a long 4 - 6 months!
Meg's mom, what kind of Herx might we expect 3 months into treating Babesia? (That sounds a little ominous...
)Yes, it worries me too. She has him on pretty high doses of probiotic, vit c, d, e, b12, etc in effort to keep it under control. His primary symptom from the Babesia is roving joint pain, dizziness, and debilitating neck pain. She simply said that all of those things might be markedly worse for months 2-3. He is well aware of that fact, but it seems worth it. Every episode he has had has left him some amount of residual pain and loss of range of movement, and it has been building up for about 2 years. Honestly, we thought he had some sort of debilitating and degenerative mystery illness, and are both thrilled that this might mean a few months of bad pain, rather than a lifetime of lost hope. I'm sure it will be bad, but she'll work with us to minimize. He is an adult however, and better able to think long term about all this than a child or teen.
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Jodie - What lab is used for this 'deeper' level of Bartonella testing?
Our LLMD (in CT) immediately zeroed in on that and after confirming with a clinical eval he sent DS's blood to another lab that goes in deeper with both the IgG and IgM. This lab does further dilution of titers and so DS actually had 1:246 IgG for Bartonella!!
I'm sure Jodie will chime in, but I think it's Specialty Lab.
We used SpiroStat, which is DNA testing. A positive is a positive.
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I asked IOCDF about this yesterday & they did get a couple of stories. The deadline for the Feb newsletter is Jan 31st, but they will still look at stories for the website after that. Thanks to those that shared! keep in mind that you don't have to use your child's real name.
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Have they tested her for Myco Plasma Pneumonia? It is proving to be a huge culprit for a lot of others. Dr. B just had us test our son and daughter for that as well as strep. It is also on the original panel of tests he asks to run. I know Dr. T tests for it, too.
If they are doing the blood draw for the strep titers, you may as well get some for that, too.
Kara
I agree with that reco. Some of the worst "rage" cases on this forum have turned out to be Myco. And the comments above about Aug XR are right on track. We found our success with Azithromyacin.
Also, while I am not a lyme mom, but often when I hear the worst stories, with some odd little differences from the "typical" PANDAS story, I read a year or so later, that they test positive for Lyme. Lyme is a creapy thing, in my opinion. Lyme & myco are often co-morbid. And if you misdiagnosis Lyme when it is PANDAS, the Lyme treatment often seems to help the PANDAS. But if you are diagnosed Pandas, and it is really Lyme, often pretty major issues continue to happen. My husband has a tic illness (Babesia) and it is nasty on a lot of levels. Worth the rule in/out. Some stories really stick with you over the years, and you remind me of Pixiesmommy. You might want to consider PM'ing her - she has found a ton of issues in her daughter including food alleries.
So sorry to hear about all this - you will find answers for her! It's so tough to be a mom and a "case worker" and a detective, but wow, you are doing an amazing job right now. Be sure to find tiny ways to be kind to yourself, you are going to need all the strength you can gather in this fight - but it will be the most worthwhile thing you have ever done.
I am NOT saying that your child does not have PANDAS, by the way. But all I ever care about it curing the child, and yours seems to have some unique issues, so some really good testing might be well worth every penny. And I really don't see why a child cannot have Lyme and PANDAS. Given what I know about how Lyme affects the immune system, I would think a Lyme child would be very susceptible to PANDAS.
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There is hope Jodie. I tell myself that all the time. Prayers keep us going too.
Do you (or anyone else who might be reading this) know how many days are in the life cycle of Babesia? Do you anticipate Herx reactions according to the length of the life cycle of what you are treating? I would love to know.
Thanks for you encouragement and support Jodie. Hang in there - at least we are not alone! -- Michele in Virginia
Our llmd (dh) says that month one on babesia treatment should not cause a herx, but that we will likely see in months 2-3, then should calm in month 4. Life cycle is 2-3 weeks. She treats for 5 months. 4 to clear and another to be sure.
Rn, thanks for sharing your story, we are very hopeful for you!!
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Hi - I am so sorry. We also find that untreated episodes begin to wane around week 12-14 if we don't have a second exposure. It is my personal terror that it would ever come back. We also had a 3 year gap between episodes, and she was not on preventative abx during that time.
I think the recommendation to go to one of the top PANDAS docs and get a plan established for the future is right on. It takes so long to get appointments, and local docs are often so uneducated, that I know how very easy it is for 10 weeks to fly by with no help or support. That just breaks my heart for both of you.
On a practical level, we learned that cytokines are lowest in the afternoon & evening. So before we did homework in an exacerbation, we'd give a dose of Motrin right after school, then take a 30 minute break. After 30 minutes, she was able to concentrate and process what she was doing much better.
We have found that having ERP therapy as a tool to manage during an exacerbation is a positive. It's hard to learn unless you have some residual OCD, so this might be a good time to have him learn the tools so that he has that training should this (God forbid) happen again. Also, I would suggest that you consider some sort of counseling for yourself, when you have time. This is such an awful disease, and it is so random on when it attacks, that it leaves many of us with a constant feeling of panic, fear or failure. This is horribly unfair, as the parents fighting this disease are on the forefront of a breakthough in fighting mental illness - we are the leaders for the future. But it's really hard to feel that way when your child is in pain or torment. So finding some support for yourself can be critical - grief counseling is a good option. Personally, I found that I needed support for both the decisions I was having to make, often against medical advice, and for the terror I was living everyday in our home.
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We're in Burlington. We're just in the process of making our appointment with Dr. Corbier and were initially told we'd have to wait until March for the new consult visit. We're still waiting for the official appointment though. We also have the option of seeing one of the other new doctors in the group at the end of January, but I'm really not sure what to do. My 11 year old son's OCD is really getting bad lately and I can't imagine him (or the rest of the family) going through this for 3 more months before we get help. He starts with his therapy next week, so hopefully that will help him too. Any suggestions? Should we hold out for Dr. Corbier or make an earlier appointment with one of the other Physicians in the same group practice.
-Vicky
Ask to keep the appt with Dr. C, but go ahead & see the other doc - be sure to ask if they "believe in PANDAS" before you book the appt.
If you need an immunologist, PM me. Her wait times are shorter.
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We get the same thing! Blips are short lived with respiratory viruses. We do 3 days of Motrin full strength, and Benedryl. If intense, we add full strength abx. If longer than 3 days, we go to prednisone & full strength abx, and call PANDAS doc immediately for a consult.
Wishing you all the best - hope it is very short lived.
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I think out of 69 views you have one response so far because this is an emotional thing for all of us. As anyone on here sees it, their child is proof alone that PANDAS exists. A lot have been told by some doctor at some time that it doesn't and it causes more stress and anger.
I agree. I just couldn't think of a way to begin to answer this question. Sometimes I am just tired of fighting about it, and I won't even talk to those that "don't believe" in it. It makes me so mad - no one will tell my father in law that he "imagined a heart attack" or he is "overreacting to his back pain", or that they just don't believe in diabetes. I get tired of defending an illness that has so rocked our family and had the potential to ruin my child's life (and so many others). Really, I just want to help my kid, and I want the doctors to support me in doing that. Having to become an advocate for an entire illness at the same time is fine - but it still makes me mad. I kind of had to take a break before I could respond.
Maybe a good place to start, is to read the history of PANDAS, and some of the research articles. Here is a link that should get you started. http://www.latitudes.org/forums/index.php?showtopic=3928.
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Yes, I recognized it as an OCD symptom from all the OCD reading I've done. But I was wondering how best to handle it with ERP - so your suggestion was very welcome. So far it hasn't happened again. But if it does, I'll know what do do.
Coincidentally, I was reviewing Dr. K's website today and came across a word I didn't know the meaning of - "Coprolalia" - listed as a symtpom of PANDAS. So I looked it up and what do you know - it's this blurting out of inappropriate words.
Is she actually saying the words?
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she fell apart - contamination fears and a new thing for us - either saying or fear of saying bad words.
By the way, this is called "scrupulosity OCD" - our daughter was often "afraid she would cheat" or "afraid she may have said something mean to someone". They know they did not, or will not, but doubt themselves around areas of kindness, religion or respect for authority. It's quite common
. We know another little girl who kept feeling like she would give people "the finger". The ERP for this is sort of easy (do it at home) - have her tell you the bad words that she might say, and then make up a little song that uses them. Sing the song with your daughter. You can also just let her say them, yell them, sing them - it will quickly be boring, she will likely have fun, and the ERP will be done. You can set a 15 minute period aside for this each day, until it is dull - call it the "cussing time" or soemthing funny & then reward her for cussing. She will likely be astonished that you will reward her for this, and that alone will knock the anxiety down. Often OCD attacks whatever is "forbidden" to a child. -
started at 3, treated, Full remission for 3 years. Onset again at 6.5, diagnosed at 7.5, full remission for 16 months, but can't (yet) get off abx. Still has blips, but very manageable. Overall a happy child. Crossing fingers.
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Oh, Kara, I am so sorry! Everyone has their own rules here about when to panic, so I will share ours for what they are worth. They have served us well so far, but we have been very lucky, with only exposures or respiratory issues, no actual strep in the last 18 months. All blips have lasted no more than a week.
First of all she knows ERP, so calmly tell her that this will happen, but it will NOT be like second grade. Let her know u are a team and she has to do her part as well. Keeping her from panicking will really help, as it is a bit of a cycle, where stress levels can increase symptoms, then symptoms increase stress. ERP seems counterintuitive, as it raises short term stress, but it really works. So that can be her part and give her some control back.
We use the 3 day rule. If OCD starts to increase, we hit day 1-3 with motrin at full dose for her age, around the clock. If a respiratory illness, we add benedryl. Often, this is all that is needed. However if symptoms go above a 5 on our scale, we also increase to full strength azith. If this calms things, we move to a lower dose of motrin on day 4, and slowly come off. If symptoms are still bad on day 4, then we call our docs, set up appts, move to prednisone, and full strength abx.
We always keep in mind that the bigger guns of ivig are there, and that we have docs ready to help us.
The first 3 times this happened, I panicked, Meg panicked, there was a lot of fear in our house. Now we are pretty calm about it, and say our prayers that this continues to work. Hope this will be a short blip, not an exacerbation. If it seems really bad, call for the doc appt today. You can always cancel.....
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Ibuprofen can work on pandas, but does nothing for regular OCD.
I don't know about that. Have you seen this paper?
Of course, maybe this goes more to say that, in truth, there's no such thing as "regular OCD" versus PANDAS OCD: that ALL OCD is the result of inflammation in certain brain centers as the result of some trigger mechanism, whether that's infection, heredity, stress/cortisol/hormones, or a combination of two or more of all of those.
Yes - but I think that pulling from a subset of patients with likely auto-immune issues will result in patients whose OCD is helped by ibuprofen due to auto-immune contributing factors.
The issue with OCD research, IMO, is that they are not pulling out the auto-immune kids. So clearly prednisone works for pandas OCD - but for "regular" OCD, it makes the anxiety go off the chart. So they find a clue, then test it on the general population, get wierd results, and say that the hypothesis was wrong. The issue is, that they are mixing up the test subjects.
I'm not sure that there are not other kinds of OCD - maybe all inflamation, but likely not. All medically treated, but it they would figure out the CAUSE for each of our kids, then they could suggest that right treatment for that particular kid. I know that SSRI's do work for some & are awful for others - so is there a different mechanism that is being treated?
Anyway, I think finding that treating inflamation reduces OCD in our kids, is the best clue you can find, to build your own confidence that you are on the right path in persuing an inflamatory/infection based issue. I guess that is what I mean by it works for PANDAS OCD and not regular OCD. Just like SSRI's work better for some others, that abx does not help.
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I have learned of some great doctors locally, by calling our local autism society and asking who they recommend for a pediatrician. Also, I have a friend who applied for disability ( think that is right term - maybe through Medicare? Will check) for her high functioning son w aspergers. This then provided him with health insurance, which the family did not have.
Also she found some local churches had funds to help kids with specific needs like traveling to specialists. It might be worth calling around.
Great post Vicki, this disease is so draining on so many fronts.
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Ibuprofen can work on pandas, but does nothing for regular OCD. You found the clue, now you just need the rest of the world to catch up
I agree w the cautions re motrin, but you will be hearing this about everything that you have to do in the next few months, so just be smart and keep it to the min, as best you can. Prednisone, motrin, ssris, abx, ivig, they all have a risk benefit ratio. But the terror of OCD is a huge risk too. I would suggest Adding a probiotic now would be smart.
Good luck to your sweet smart girl. Tell her She has already observed more than most docs and researchers. Maybe she will be a scientist someday!!
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Oh, Joan, I am so sorry. I know how hard you are fighting for him and with him, and my heart goes out to you.
I want to give you advice, because we all just want him better, but I worry today that anything I suggest, you will have already done. So mostly, I just send you a heart message, that one way or another you will find hope and joy for him again.
I can't remember if you have gone the Lyme route as well, but I am a firm believer that you should try all the known triggers, and see what you can find, especially when so very severe. I think TONS of things can cause these issues in the right kid.
If you are looking for help anyway, maybe finding someone that can work on ERP with him at home might be helpful. You could email Rogers or McLean & ask if they have any references. I don't think that ERP will "cure" him, but we found that in the times that 100% of our dd's day was taken up by compulsions, even a little fighting back made her feel less hopeless. Fighting however, can be very hard, so having an expert on hand to support may be critical. We were fortunate to find someone that was willing to train with me to help her through her days, but a real expert would have been better. There is no way I could have done that in our home all alone. It was too constant, no one can take seeing their child like that 24/7. Personally, I would even consider an in-patient intensive program, but would want to know that they were on board with the medical side of things as well. Not sure if that is realistic, but maybe worth some calls. I can't remember his age - is he 16 yet?
I will respect your choice either way, as the decision to let them go to "germy places" is always so hard, but I lean in the direction of letting them do anything that brings them joy. If he is this bad now, and if playing basketball will bring him moments of joy, then I vote for the germ experience. I know that will be a controversial statement, but you are sick now, and he is exposed - so germs are everywhere - I assume he is on abx to keep it in check, and would not do anything without that. But these poor children lose so very much, and deserve every second of joy we can give them. Exercise, if reasonable, can also help anxiety levels. If you reallly can't have him at the gym, then maybe find a solo option for him, or a smaller gym. I also be I agree with the home school - or even if there is a local vocational school or tutor that can help to fill the days. Maybe you can even get the school system to pay.
We are all rooting for you and for him. I just know you can find the right answers for him, and pray it will be soon.
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bumping, because this ought to stay up top for a week or so - hate for anyone to miss it.
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Just a thought--"cure" is a tricky word with a chronic/recurrent illness like PANDAS. If we are to take cues from other similar illnesses (similar in the idea that they too have exacerbations, such as Chron's Disease) it might be best to keep in mind that management of exacerbations is, unfortunately, the much more common alternative than a full blown cure.
Hm, that is interesting - I interpreted 100% to mean for a period of time (remission) rather than "cure". I checked yes, as we are at 100% right now, but I would certainly not consider it game over - and she is still on abx for the foreseeable future, so to call it a cure would be silly. Some here might not call it 100% if the child was still on abx. I guess that is a matter of perspective. 100% to me, means a joyful child, free of OCD, anxiety, eating disorder or sensory issues. Just a kid.
(funny story - she had many issues among them, severe contamination OCD. Today it is COLD here, and I gave her a bottle of water while outdoors. She put it on the pavement on its side, with her feet resting against it, because it was too cold to hold. Even after a year, I just looked at her in amazement. She is back to being a gross little 9 year old, with absolutely no sense of fear about germs or dirt. I tried to explain that to doctors over and over, that she could not have contamination OCD and I did not notice - this was a kid you had to stand over to make her wash her hands until PANDAS hit. Now I am the only one thinking "ugh...." when that water bottle is on the ground).
He was so mad at me for making him travel there & it was an experience so outside of our comfort zone. OMG, I hope never to repeat that drive home again in my life!
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. We know another little girl who kept feeling like she would give people "the finger". The ERP for this is sort of easy (do it at home) - have her tell you the bad words that she might say, and then make up a little song that uses them. Sing the song with your daughter. You can also just let her say them, yell them, sing them - it will quickly be boring, she will likely have fun, and the ERP will be done. You can set a 15 minute period aside for this each day, until it is dull - call it the "cussing time" or soemthing funny & then reward her for cussing. She will likely be astonished that you will reward her for this, and that alone will knock the anxiety down. Often OCD attacks whatever is "forbidden" to a child.
Serious weight loss
in PANS / PANDAS (Lyme included)
Posted
That is actually a very good sign - do you find that he is stronger in general right now?
I think of PANDAS like terrorism. The sheer terror in their heads is so overwhelming that they will do anything (compulsions) to make it stop for a minute. Imagine that you were kidnapped and a gun was to your head everyday for months as you were ordered to do certain things over and over. Then you are left alone. Do you run and escape? Or do you still keep doing the things you have been ordered to do for months? Do you fear retribution if you don't? Could they be watching you? I think this is sort of what happens when the PANDAS starts to clear. The HABITS of OCD have started to take hold, for some children. Maybe this is due to the length of time they have had it, the severity of it, the family propensity towards OCD (maybe mild form before pandas attacks), etc.
For these kids, there is some extra work to do, and it can be very confusing for both of you - is it still PANDAS, or is it just a very strong habit? Months after my daughter was completely well (from my perception), we would walk through the grocery store, and she would suddenly say "mom, I think I like apple juice - can we try it? I think that was just the "worryman". Or we would pass a park and she would beg me to pull over and start running joyously up to a certain slide, yelling "mom, I can do this slide now"! It was like she was finding herself again.
But in the meantime, there was some work to be done, especially about food - I am not sure what would have happened if we had not. We had a few "all sugar dinners", and she accomplished it pretty easily, but not without some work. I remember looking at her weaping into her ice cream sundae for dinner, and thinking "am I pushing her too hard?". But she did it, it was the right time, and her anxiety, while high, was never above a 4-5. Before the abx, an ice cream sundae would have been absolutely out of the question impossible. Now she can eat sugar 24-7, like any kid! Had we not done the work, I think she would have absorbed some compulsions into her personality, or they would have become habits.
Your son has been so severe, I am not sure that anyone would advise you to go cold turkey on doing compulsions. But certainly having an ERP plan and getting through some of the tantrums about it, would be very wise. Given his severity, this might be tough on your own. Do you have a local ERP therapist that can help guide you both in the plan? I found that we needed one, as I needed someone to assure me that we were not pushing too hard, or if we needed to help her more, etc.
Hope this post is finding him stronger, and ready to reclaim his life. I'm just so sorry he has been through all this.