Megs_Mom
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Lot's of ear infections early, and now at least 1-2 per year, even at age 8. Lots of upper respiratory - not sure how to quantify. Also, she has high ANA, which usually gets us into specialists for evaluation
. I have put her number on my computer & will call in the am. I would like to at least explore CVID. --We've had BCBS of NJ pay for IVIG with the CVID dx. We are still waiting to see if they will pay for the large two day dose that was also coded as CVID. Seems to be a shortage of Immunologists in NC. I've had two people from the PID Forum recommend Rebecca H. Buckley in Durham. Her number is 919-684-2922. Also, Robin Lacroix who is an infectious disease doc but also does immunology. I believe she is located in SC.
Has your dd been sick a lot with sinus infections, ear infections, upper respiratory infections? If so, maybe try getting her in for immune testing based on history of illnesses and not mention Pandas until you get in the door.
Do you know if BCBS also covers IVIG? We are considering for future, and I have been trying to figure this out all morning. I am wondering if we'll need a CVID/Selective iGg subclass diagnosis to get IVIG if needed, or if we can get it under the PANDAS diagnosis. We have still not found anyone to run these tests! Thanks!BCBS of NC did cover our PEX. I am not sure which code they used but I will try to find out. -
I feel very confused on this point, as he did not discuss H pylori with me (and I had not read about this yet). She does not take any nsaids, so it can't be that. He did not give me antibiotic, and Meg is only on mild Zith at this point. I am going to call and ask tomorrow. Hard to get him on the phone, but I will give it my all! Actually quite annoying that he did not mention - he had to know I would google!
Hi Susan,Did they detect H. pylori bacteria? If so, the treatment is antibiotics along with acid reducers. Here is what the Mayo clinic says for treatment:
Because many ulcers stem from H. pylori bacteria, doctors use a two-pronged approach to peptic ulcer treatment:
■Kill the bacteria.
■Reduce the level of acid in your digestive system to relieve pain and encourage healing.
Accomplishing these two goals requires the use of at least two, and sometimes three or four, of the following medications:
■Antibiotic medications. Doctors use combinations of antibiotics to treat H. pylori because one antibiotic alone isn't always sufficient to kill the organism. For the treatment to work, follow your doctor's instructions precisely. Antibiotics prescribed for treatment of H. pylori include amoxicillin (Amoxil), clarithromycin (Biaxin) and metronidazole (Flagyl). Combination drugs that include two antibiotics together with an acid suppressor or cytoprotective agent (Helidac, Prevpac) have been designed specifically for the treatment of H. pylori infection. You'll likely need to take antibiotics for two weeks, depending on their type and number. Other medications prescribed along with antibiotics generally are taken for a longer period.
■Acid blockers.
■Antacids.
■Cytoprotective agents. In some cases, your doctor may prescribe these medications that help protect the tissues that line your stomach and small intestine. They include the prescription medications sucralfate (Carafate) and misoprostol (Cytotec). Another nonprescription cytoprotective agent is bismuth subsalicylate (Pepto-Bismol).
If H. pylori isn't identified in your system, then it's likely that your ulcer is due to NSAIDs — which you should stop using, if possible — or acid reflux, which can cause esophageal ulcers. In both cases, your doctor will try to reduce acid levels — through use of acid blockers, antacids or proton pump inhibitors — and may also have you use cytoprotective drugs.
Colleen
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Congratulations! That is so awesome, I love these stories. I cannot wait to hear the results afterwards.
I'll let someone smarter than I (and there are so many here) answer what to ask, but I know that you do want to be sure they have tested him for iGa deficiency (make sure he does not have) before doing the IVIG. I think this take a few days to get back, so just be sure they have already tested for this, otherwise they can have an allergic reaction.
Hope it goes so very well!
I just recieved the call from the neurologist We go Monday the 31st for the IVIG and my insurance company approved it we just explained it to danny and even he is happy I am feeling such a relief I cant even explain how we are feeling 1 because we are getting treatment and 2 the insurance is covering it please pray for us I dont have all details yet Im waiting dfor the md to call us tomorrow what questions do I ask?Melanie
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Do you know if BCBS also covers IVIG? We are considering for future, and I have been trying to figure this out all morning. I am wondering if we'll need a CVID/Selective iGg subclass diagnosis to get IVIG if needed, or if we can get it under the PANDAS diagnosis. We have still not found anyone to run these tests! Thanks!
BCBS of NC did cover our PEX. I am not sure which code they used but I will try to find out. -
Wow, ok I totally did not expect a response on that hypothetical question, other than maybe "yes, my daughter's stomach hurts too". I am completely fascinated! We hope to get Cunningham results back this week (which is giving me a stomach ache!), so this will now be doubly interesting. I speak with so many suspected PANDAS moms on the OCParenting website, and we all feel like we have the same symptoms "Severe out of the blue OCD that focuses on throwing up, seperation anxiety & urinary need" - since we found the ulcers, I am really wondering if when PANDAS causes the OCD, at the same time these kids really are feeling like throwing up all the time, and that's why they start to attach a fear to all kinds of events? An illogical illness that attaches to a new feeling in their body. Kind of like having a panic attack, and then fearing where ever you were when it started. Now they fear all kinds of foods/places/events during which they feel nausea, stomach pain, or reflux? I have always wondered why our kids were all hearing our kids say nearly the exact same thing. For so long, we were telling her that the stomach pain was due to anxiety - now she is so relieved to know that we recognize her stomach pain as real and often fleeting - and that she can calmly acknowledge it without freaking out about it.
Thanks, I love this site
- especially the science based evidence that everyone is putting together. I am grateful - and I feel like I need to go back to school to be sure I am understanding half of this correctly. What I think my take away is here, is that when a PANDAS episode starts, then I need to immediately dial up stomach remedies at the same time. I'll put that on my plan! Susan (Meg's mom)
Susan,I would swear that she does not have a stomach ache unless she is in a PANDAS episode. Do they go together?Maybe you're right about that. If we can apply anything in this study, that's looking at stomach epithelium cells from a rabbit, it seems that elevated CamKll could result in elevated stomach acid production.
http://www.pubmedcentral.nih.gov/articlere...d=1573865#bib47
Our results suggest that PKC-α and CaMKII are closely functionally linked in a cholinergically induced signalling pathway in rabbit parietal cells. We assume that in cholinergically stimulated parietal cells PKC-α transinhibits CaMKII activity, resulting in an attenuation of acid secretion.
So they think PKC-α "transinhibits" CaMKII and attenuates acid secretion. An excerpt from the wiki page on protein kinase C (PKC) says it has multiple functions and
http://en.wikipedia.org/wiki/Protein_kinase_C
"Recurring themes are that PKC is involved in receptor desensitization, in modulating membrane structure events, in regulating transcription, in mediating immune responses, in regulating cell growth, and in learning and memory. These functions are achieved by PKC mediated phosphorylation of other proteins. However, the substrate proteins present for phosphorylation vary, since protein expression is different between different kinds of cells. Thus, effects of PKC are cell-type specific"
wondering what other parts of the body are affected by elevated CaMKII? It appears it can be involved in heart rhythm abnormalities too. Where might PKC fit in?
Do you ever feel like your living in a jigsaw puzzle and everytime a picture starts to emerge, someone messes up all of the pieces
http://en.wikipedia.org/wiki/Parietal_cell
http://www.pubmedcentral.nih.gov/articlere...i?artid=1573865Parietal cells, or oxyntic cells, are the stomach epithelium cells that secrete gastric acid and intrinsic factor.Parietal cells produce gastric acid (hydrochloric acid) in response to histamine (via H2 receptors), acetylcholine (M3 receptors) and gastrin (CCK2 receptors). The histamine receptors act by increasing intracellular cAMP, whereas the muscarinic and gastrin receptors increase intracellular Ca2+ levels. Both cAMP and Ca2+ act via protein kinases to increase the transport of acid into the stomach.
CaMKII appears to have an obligatory role in acid secretion because inhibition of CaMKII activity blocks gastric acid secretion (Tsunoda et al., 1992; Fährmann et al., 2002a). We recently showed that CaMKII is activated and translocated to the secretory apical membrane during carbachol-induced acid release (Fährmann et al., 2002a).
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Thank you! I'll read through all this tonight. I tried to search on the site, but could not find these connections. I really showed up quite unprepared for this appt (not my usual style) as Peptic Ulcers had not been mentioned. I was totally prepared for Celaic - but there you go - best laid plans and all that. He did not mention H pylori, but after I got home, I read about it. I guess I'll have to go back & ask. He did not prescribe antibiotics, which seems odd when I read about it on line, just the prevacid. She is already on mild antibiotics for PANDAS. He gave it to us for 2 months. I am leary of all meds, but have started this one, as we really need to get rid of the stomach pain, so that we can get rid of the rest of the OCD (hard to do therapy about throwing up, when your stomach hurts every time you do the exposure!)
I'll hope for Cheri to pop on-line too! Thanks again - Susan (Meg's mom)
Susan,I think there is a connection, but it seems sort of like the chicken and egg thing (which came first).
I'm leary of long term use of prevacid. Occasional use might be ok. I'm wondering if H. pylori was discussed at all?
Cheri (Chemar) has good info on gut supplements. Maybe she'll be along with some info.
Here are a few threads you might want to read through. A few people have mentioned movement disorders related to use of prevacid in the past, but could have been problems relating to the underlying condition too.
http://www.latitudes.org/forums/index.php?...amp;hl=prevacid
http://www.latitudes.org/forums/index.php?...amp;hl=prevacid
http://www.diagnose-me.com/treat/T157242.html
Mastic Gum
http://www.naturalnews.com/DrugWatch_Prevacid.html
Prevacid
side effects, nutrient depletions, herbal interactions and health notes:
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I googled this too - and found this article http://pediatrics.jwatch.org/cgi/content/citation/2004/712/9, but have to pay $99 to get it
. Anyone have this or access? Thanks - Susan (Meg's Mom) -
Hi - Meg's Endoscope test came back & she does not show any signs of damaged villi - so not Celiac. She does however, have numerous Peptic Ulcers. So she actually has a stomach ache & reflux - it's not just OCD/anxiety. They gave her Previcid. Any thoughts on this one? I would swear that she does not have a stomach ache unless she is in a PANDAS episode. Do they go together?
Susan (Meg's mom)
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Hi Robin, major hugs to you! I am at work, but look forward to reading this later. I just wanted to say hi & welcome. Also, that if your son had 9 ear infections in a year, you may need to take him to an immunologist to test for CVID or selective Igg deficiency - both of which seem to go along with PANDAS. Here is a quick link that you may want to read: http://www.primaryimmune.org/publications/...s/book_pats.htm. Read chapter 2 on CVID, and chapter 10, IgG subclass deficiency. We are just starting to test our daughter for these as well.
Don't feel crazy, we are all right here with you. If this is "not your child" then you need to help him find his way back! Best Susan (Meg's Mom)
What a relief to read through all your posts and see my thoughts and emotions reflected, that I can continue to tell myself I'm not crazy, and should continue to ignore all the people who say, even after a medical diagnosis, I'm making excuses for bad behavior, I'm reading too much into normal "weird little kid stuff," I'm making a mountain out of a molehill, the doctors are full of nonsense or (my favorite) my kid just needs better discipline.
But then he got another ear infection... by the time the third ear infection and course of antibiotics rolled around it was clear something was horribly, horribly wrong and that whatever it was antibiotics seemed to be bizarrely helping his behavior. (Never having heard of PANDAS I had no idea why.) Complicating the whole thing were a series of ear infections (9 that year), constant stomach aches, shockingly colorless bowel movements (anyone else seen this? it went away as suddenly as the rest of many symptoms did without diet change!), and a consistent low-grade fever...fever of 99-100 for two weeks straight, none for a few days, then back again. This particular symptom had his eventual pediatrician test him for leukemia early on just to be sure right away.
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I totally understand this - it is not necessarily fast, or frankly easy. I look at it as a tool, since I expect her to have more times that this happens. So we are building that tool's strength over time. During the bad times, using ERP makes it more manageable (and she had severe OCD, tied up in every part of her life), so that she does not miss school or events with friends, and so that we can see her happy smile every day. And so she feels more in control of her life. For just the first small exposure, it can take a week or two to build strength. I have a file about this, if you want me to send to you. I'd also be happy to make some suggestions about how you could get started if you want to talk via email. Might not work - but no harm in trying. I love the post from Vicki as well - the great thing about ERP, is that it can work in a thousand ways, using the same principles, the only limit is your creativity.
We came a long way with ERP from May - August - from a severe (on the low side) diagnosis to sub-clinical now. I think that the anti-biotics are also really helping, and plan to use this in combination in the future. My husband and I were discussing this last night & we both feel some anxiety about which parts are specifically helping her - but our final decision was that "next time" (I cringe writing this word), we'll throw the kitchen sink at it week one - immediate antibiotics, steriods for 10 days, and ERP therapy. That will really test it for us - if it is immediately better, we'll know this is PANDAS without a doubt, as we know what it looks like with just ERP therapy. Her therapist wants to use SSRI's if it comes back, but I think we'll wait a few months before we even think about that. I am so appreciative of the medical advice on this site, and hope to learn much more before the next round of this. Susan (Meg's Mom)
Thanks, everybody, for some great info!
Vickie & Susan, I did read the book "Freeing Your Child from Obsessive Compulsive Disorder" by Dr. Tamar Chansky. Great book, and it references some of the others you mentioned. We're trying to use it as a guideline. Just not having much luck so far....
Appreciate all the posts! Maybe - per Dr. K - I just need more patience. Just don't want to wait and watch things get worse again!
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Hey! You are SO lucky - free Montessori! No, we are switching this year - we were driving 30 min each way, and with all doctors appts and OT therapy, etc, we needed to be closer to work and home. So she is changing this year. Keeping my fingers crossed - will go meet with her teacher to explain. It's a small classroom, so we are hoping for fewer germs
I guess we'll see. We loved Montessori, and she never got into trouble for being twitchy. Susan (Meg's Mom)Hi! I'm glad to see you here and to read your summary about Meg too! Is she still going to Montessori school this year? My girls go to a public Montessori program here.I agree about the antiboitic dose. I think, at least in the beginning it would benefit to go up to 250 mg.
Regarding long term strep prevention that you mention EAMom, would this be better split up or at one time each week?
Thanks!
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Ok, so it is sounding like I have to go back on this about the amount per day. In May 2008, they only did titers. She never seems to have strep, just goes off the charts after an exposure. In June 2009, we ran tests for her with pediatrician - who "forgot" to run the strep titers.... Just a little frustrating... I have read your case study! It's so great that you all are doing so well. I love Diana - she and Laura M have been lifesavers for us, helping us better understand the course of the disease. I question myself a lot, but keep thinking that I cannot harm her by following both paths.
I am already accepting that the Cunningham test may be low given her stage right now. I will be oddly disappointed however - sort of wierd to say. I checked with them, and they confirmed that they will rerun if she gets it again.
Thanks for the advice - I am very glad that I finally posted here. Susan (Meg's Mom)
Great writeup! It definitely 110% sounds like your dd has pandas.In May 2008 did the docs do a throat culture or just titers? When we first learned of PANDAS (3/08) our dd also had low titers but had a positive throat culture and perianal skin culture (2 mo. after likely strep infection; her assymptomatic sister was also throat culture positive) . That is a major pet peeve of mine...docs that do titers but not throat cultures. Lots of PANDAS kids have low ASO/anti-dnase B. Also, lots of PANDAS kids don't get classic strep symptoms, only behavior changes. But, they don't bother to culture for strep b/c the throat doesn't look red. Urrghhh.
Note: I am glad you are doing the Cunningham blood tests. Just so you know, the values might be lower if you dd is not in an exacerbation/and or she has had a course of steroids.
Re Azith: Our dd (55 pounds, was 45 when she started at this dose) has been on 250mg/day of Azith. since June 08 (over 1 year). Our immunlogist (Stanford Univ.) felt this would be a safe dose for her to be on for years. We recently did IVIG and would like to decrease the Azith. eventually, but don't want to change anything for now. When we've tried to lower the Azith (to 125mg) in the past, our dd has reacted. The immunlogist agrees with our theory that much of the benefit of the Azith is immune modulation/anti-inflammatory, not just strep prohpylaxis. (If you go to the www.PANDASnetwork.org site our dd is case #2...more hx and info.)
Personally, I think the doses they gave your dd are low. Esp. the 300mg/week for long term strep prevention is low. In the Swedo study they used 500mg/week of Azith. I certainly wouldn't go any lower than that.
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Hi Colleen - our Neurologist prescribed the Zithro - for PANDAS - I am not sure that he'll increase for us, but I will ask. Do you have a link to a study that will show this amount? That would help us, sorry for asking I'll search the site as well. I was afraid that this might not be enough, but am so grateful to get anything. Thanks so much for the advice.
Had wierd day today - her final Celiac test (endoscope biopsy) came back negative. But the biopsy does show that she has peptic ulcers, and needs meds for that. So she really does have a stomach ache all the time, not just anxiety. I am very happy that she does not have Celiac, althougth I have worked hard at accepting that possibility. Then we went to therapy, and her therapist really thinks it's "just OCD", so I always leave a little confused. She is great at the ERP, and we need that since Meg's OCD comes on so far and is so severe untreated. On the positive side, she is now testing as subclinical OCD, so I am greatful for that, whatever the reason. Still work to do, but a much better place to do it from. 3 weeks ago, they were recommending ssri's, and she was still discussing this today. I am not ready to go there and don't think she needs it at this point. Anyway, I can use the encouragement today, as I feel like we are taking the path less traveled here. Odd to feel so strongly that something is true, but not really be able to prove it. Susan (Meg's Mom).
So sorry to hear what you are going through.It most definitely sounds like you are dealing with PANDAS. Who prescribed the Zithromax and for what reason? If she has strep somewhere and weighs 50 #, 100 mg for 5 days is not enough. A treatment dose of Zithromax should be 12mg/kg/day. For a 50# child it should be 250mg/day. The usual course is 5 days, but with PANDAS children they usually require at least 10 days if not longer. Then, when you are ready to bump it down to a prophylactic dose, IMO M/W/F is not enough. You are better off decreasing the dose to 125mg/day, but given everyday. Some kids can eventually go to every other day, but you want to start with the higher dose, then decrease it. Every child is different, but this is what I feel works best.
You may really want to consider not giving a flu shot this year. Many, many PANDAS children react negatively to vaccines, especially flu shots.
There are a lot of parents on this forum who will have info for you. Hang in there!!
Colleen
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Hi – I am so sorry about your son – we also find OCD to be very “sticky” and find that beyond medical options, our daughter has to have ERP therapy to get rid of the OCD. We have OCD and anxiety in our family, so I think she has a predisposition, and that may make it a little more severe. Happily, she can pretty much get rid of it with hard work, versus what we have learned that "regular" OCD looks like in a child who might have a good bit everyday. So there is good news.
The thing about ERP is that the child has to be motivated to do it – I have a file about this that I can send you if you’d like. After education, the next big thing that works for us, is rewards. We start with the tiniest thing – like when early on we had to deal with extreme separation anxiety, where she could literally not be a room away from me without complete panic. This was very debilitating. So we agreed on a goal – to spend 30 seconds (doesn’t that sound silly!) in a room while I stood in the hall just out of sight. It took about 4 times to successfully do the 30 seconds. She got a tiny reward (we use points) just for trying, each of the 4 times. When she did it, she got a bigger reward – maybe 4 points. We have a prize box that comes out whenever this strikes. It has all kinds of things she likes, from card games, coupons for ice cream or a bike ride, to extra Wii time, a book that she wants, etc. We make lots of things worth just a few points, and a few awesome ones worth as many as 40 (say a Wii game). We have things that are rights (like 30 minutes of TV a day, or an hour of playtime with friends). Then she can very easily earn more. Like every extra 15 minutes of TV is only 3 points. Playtime with Friends is only 2 points per 15 minutes. We try to give her a plan that is worth about 20 points a day, during the worst of it. And reward for effort, as well as success.
The point is that you WANT him to succeed as much as possible, so that they gain confidence. So you might not only pick the hardest thing (playing alone without mom in the room), but then break that down into the tiniest thing (30 seconds). Then once they master that, you move up the goal. So you might, over the course of a week, do 30 sec, 1 min, 3 min, 8 min, 15 min – doing each one 3-5 times until they master it. The first couple of weeks are really just about building confidence that they are in charge. At the worst, this does dominate our lives for a few weeks. We keep a journal for her each day, and in the morning, we start by reminding her of what she succeeded at the day before, and what goal we set the night before, for today. We set goals with her every night. We include at least one fun thing that we want to do, as a goal. We try to start the day with a meal that includes protein, and ensure that she is getting as much sleep as is possible. So for us, this meant sleeping with her for a while, until we could knock that one out as well. Once they master a goal, we don't reward for that anymore - we reward for attempting the next step in ERP. We use a lot of love & hugs and "great jobs" and comments about how amazingly courageous she is, since we are forced to ask her to do things that are very difficult.
For books, I’d strongly recommend reading “What to do when your Brain gets Stuck” – great workbook for kids. For yourselves, try reading John March’s book, Talking Back to OCD: The Program that Helps Kids and Teens say NO WAY - and Parents Say Way to Go – this book will help you layout an ERP plan and to evaluate your therapist to see if they understand ERP therapy. You can also read Aureen Wagner’s book, which is fabulous, What to do when your Child has OCD: Strategies and Solutions – this is more general, not so much about ERP, but is really helpful to understanding the way OCD works.
I don’t always understand what is going on with my daughter – the OCD arrives overnight, but it does not go away when you’d think that a PANDAS episode is over. It stays longer & longer, if we don’t get really aggressive with ERP. This took us a while to learn, usually we don’t start for a month or two. Now, we plan to hit immediately with anti-biotics & prednisone, start ERP immediately, and then move to IVIG if it is worse than the last few times. My gut, however, is that her OCD is so bad when it hits, that we will always have to use this as well as the medical options. Very frustrating, but once you get used to the therapy, it is not that bad. It feels really slow at first, but then it really moves along. Write a journal for yourself, because once it improves, it will start to seem like it hasn’t, if you don’t keep track of how bad it once was.
We have not tried SSRI's - they take a while to work, but if they do work, are a great compliment to helping ERP get started. Also, I just want to comment that while we have not done a residential treatment program, and it would be an incredibly painful decision, I have heard amazing things about their success. Most kids that go in are completely convinced that it will not help, but they do. I cannot imagine the pain of making this decision - but on the other hand, the pain of being trapped in contamination fears and rituals is really bad too. You may also want to post to ask questions about these centers, at www.ocdandparenting@yahoo.com. There are a lot of parents there that have been through this.
Sorry for long post, hope this is helpful - I am new here & hope I have not written too much. I have learned so much here about PANDAS. I have written about our experience with OCD and PANDAS at www.joyforanna.blogspot.com. There are a lot of other books there, not sure if it would be helpful or painful to read about this experience or not, but thought I'd offer up in case it helps. Susan – Meg’s Mom.
Susan and Vickie, I could really use your guidance here!
Our son (13) just had rounds 2 and 3 of IVIG in Chicago with Dr. K (June and July). He's shown minor improvement, but (unlike after round 1 in October 2008) his OCD symptoms haven't abated much and are absolutely crippling right now. Contamination fears pretty much keep him a prisoner in our house (sometimes in specific rooms that are "safe"). Coping with the fears and rituals is draining my wife and me to the dregs.
We've been trying CBT (ERP) with a local psychologist who specializes in OCD and anxiety disorders. We're making no progress. Our son just insists that he's "doing everything he can to fight the OCD already" and can't (or won't) try ERP with anything new. We've tried having him rank his obsessions / compulsions and tell us which is the "lowest anxiety level" so we can target the easiest stuff first. No dice. He just says he "can't do anything else."
Our psychologist is basically out of ideas. He's suggested to us that we need to consider an intensive residential program. The closest such facility is 4 hours away, out of state. Our son would completely freak if he was suddenly thrust into this "foreign setting" and I shudder to think about how he (and the staff) would cope. We want to avoid this option at all costs!
Sounds like you've both had success with the CBT / ERP approach. So I'm wondering if you can give me some pointers?
- Should we force the issue more, pick a ritual to target, and push our son to tackle it by making it a condition for doing something he wants to do (like play computer games)? The books I've read say not to impose these targets, to let the child feel empowered and allow them to pick which rituals to target in which order. But we (and the therapist) have tried this for months, and it's just not working.
- We haven't tried an SSRI yet. Dr. K is dead-set against these, and Dr. Latimer said she's found them to be largely ineffective for PANDAS kids. Have you tried SSRIs for your children? Did they help? (We have an appt we've been waiting on for 3 months with a local ped psychiatrist, and I'm guessing he'll want to prescribe an SSRI for our son.) Do we need to start with a very low dose? Have read studies by Dr. Tanya Murphy showing that PANDAS children reacted badly to "normal" doses of SSRIs (suicidality, etc.).
Frankly, we're desperate. This exacerbation hit on March 29, and it's been a long 5 months. We'd be extremely grateful for any advice you can offer!
Brian
- Should we force the issue more, pick a ritual to target, and push our son to tackle it by making it a condition for doing something he wants to do (like play computer games)? The books I've read say not to impose these targets, to let the child feel empowered and allow them to pick which rituals to target in which order. But we (and the therapist) have tried this for months, and it's just not working.
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Yes, sorry, ERP stands for Ritual and Prevention Therapy - it is done as a part of CBT therapy, but many CBT therapists don't actually practice ERP. Essentially, it is identifing all the things that are done/caused/fear by OCD, and the ritual they use to dial down the anxiety. Then slowly, they learn to overcome the fear, and not do the ritual. As a result, the fear dials down. Until our latest episode, we were very succesful just doing this at home. We read Dr. March's book Talking Back to OCD: The Program that Helps Kids and Teens say NO WAY - and Parents Say Way to Go - to give ourselves a good perspective on what OCD therapy looks like. It is very helpful.
Our lastest episode was too complicated for us to handle on our own, and we now have an ERP therapist, and that is working. Meg also loved the book "What do to when your brain gets stuck", that explains OCD. We have a lot of OCD in our family, so we started on this route before realizing that her OCD is atypical, and that she likely has PANDAS. So now we are persuing that route (love this site, thanks all) in terms of testing and treatment (she did the 5 day Prednisone burst - with shocking results, nearly 80% immediate reduction in symptoms for about 7 days, then it came back, and now on Zithro) - but we still do the ERP therapy every day at home as it keeps her much calmer. We don't have meltdowns right now - they seemed to be a result of extreme fear about the thoughts she was having.
ERP? Does that stand for something like Exposure/Response? I think what I do w/ my son may fall into that catagory. If that's what it is, that does help him a lot. I did a little of that when he was still experiencing an episode, but not to the extent I do it now. Even during an episode, it did help sometimes.We have been through 3 episodes of PANDAS now - her only symptoms are severe and sudden onset of OCD (well, except for needing to pee all the time, sep anxiety, etc - I just mean no tics, except maybe a cough that comes & goes). We have used ERP therapy each time, and found it to be a lifesaver. Even though we are working as hard as possible on the medical solution, we find that the OCD seems to outlast the episode itself, and to get stronger each time if we don't use the tools. The days of sudden onset are so hard, I cannot imagine her not having tools to at least try to dial it down. At extreme times, they don't work as well, but they do help to keep the overall episode manageable (ie, less panic attacks about the feelings/thoughts, more ability to attend all events & school desite the OCD, more self confidence through the attack).They are great tools - for life as well as OCD. She is certainly becoming a very brave person. I would add that this will not help with tics, of course, and ERP therapy is not really about using logic, so it's not really about rationalizing with her during a meltdown. It's more tools to try to keep the meltdown from coming. Hard work, but since we are now on episode 3 or 4, we needed help from all directions. I'd call this training a different part of her brain to do the work of the part that is affected.
Susan
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We have been through 3 episodes of PANDAS now - her only symptoms are severe and sudden onset of OCD (well, except for needing to pee all the time, sep anxiety, etc - I just mean no tics, except maybe a cough that comes & goes). We have used ERP therapy each time, and found it to be a lifesaver. Even though we are working as hard as possible on the medical solution, we find that the OCD seems to outlast the episode itself, and to get stronger each time if we don't use the tools. The days of sudden onset are so hard, I cannot imagine her not having tools to at least try to dial it down. At extreme times, they don't work as well, but they do help to keep the overall episode manageable (ie, less panic attacks about the feelings/thoughts, more ability to attend all events & school desite the OCD, more self confidence through the attack).
They are great tools - for life as well as OCD. She is certainly becoming a very brave person. I would add that this will not help with tics, of course, and ERP therapy is not really about using logic, so it's not really about rationalizing with her during a meltdown. It's more tools to try to keep the meltdown from coming. Hard work, but since we are now on episode 3 or 4, we needed help from all directions. I'd call this training a different part of her brain to do the work of the part that is affected.
Susan
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My daugher was vaccinated for Pneumococal 4 times between 2001 - 2003. So if she fails, will that be a true failure? I am failing thus far, to get anyone to run this test for her, and am trying to gather information to convince them. If not, I am considering running myself, but want to be sure that I understand it first.
Thanks!
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Michele, How has everything gone for you with the Abilify? I am confused with the supplements, especially the doses as I am giving to a teen. I would love to stay natural, but every time I think I've got it right, and everything is great, the boat tips! Our doctor is actually recommending Paxil for the OCD. Did anyone recommend that for you (or did they ever recommend another SRRI) -- or do they not do that with little ones.
We have been pretty successful with Cognative Behavioral Therapy - here is a good link re this: http://brief-treatment.oxfordjournals.org/...amp;keytype=ref
Will not be solution for everyone - and very tough to do at first - but really helps keep emotions under control, and gives her some power over her symptoms. Her OCD usually lasts about 6 weeks, and is always very frightening at first, until we get the techniques back down. Would love additional advice. WE have not tried any meds yet -
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Hi - my daughter is 6, and is on second round of PANDAS. We are finding it gets easier, as she can understand and "own" more of the treatment. While the Behavioral/Cognative therapy is hard at first, it really works. We've been able to handle without meds thus far. Here is a great website that we have found helpful. http://brief-treatment.oxfordjournals.org/...amp;keytype=ref (copy this to your browser line). After an episode is over, her brain is fully recovered - she goes back to being her normal happy self, with no undue worries. Still hard to go through, but the therapy techniques really do give a level of control. We don't "stress" about Strep - as most of the time, she catches it right before the major symptoms erupt. Sometimes, we don't know who she got it from, as some kids are carriers, but have no symptoms.
Can anyone help me with some questions about PANDAS? After a recent strep throat infection, my daughter began to show signs of OCD. Excessive handwashing, won't touch doorknobs, clothes that were worn the day before, or lightswitches, worry about dying, worry worry worry all day everyday about everything! After some of my own research, I diagnosed her with PANDAS! I called my pediatrician for a consultation and he wouldn't meet with my husband and I, saying that was "out of his league" He referred us to a psychologist. The psychologist agreed that our daughter has PANDAS. We asked the psychologist the following questions and he said that those were medical questions that we should ask our pediatrician about!!Here are my questions:
Will her brain ever fully recover from the damage it suffered when the strep infection occured?
Do we need to send a note home to parents at school letting them know that a child in the class has PANDAS and encouraging them to keep their children at home if they complain with a sore throat and also to report to the teacher if their child has been diagnosed with strep throat?
If she gets strep throat again, will it add to the damage, making her symptoms worse each time she gets strep?
We know this is a pediatric disorder, so when will she "outgrow" this disorder so we can stop worrying about her getting strep again?
What are the natural vitamins/suppliments recommended for children with PANDA'S?
Any other information is really appreciated. Thank you so much
. I have put her number on my computer & will call in the am. I would like to at least explore CVID. 
I've had two people from the PID Forum recommend Rebecca H. Buckley in Durham. Her number is 919-684-2922. Also, 
. Anyone have this or access? Thanks - Susan (Meg's Mom)
I guess we'll see. We loved Montessori, and she never got into trouble for being twitchy. Susan (Meg's Mom)
6 weeks after PEX
in PANS / PANDAS (Lyme included)
Posted
Isn't it odd when you start to see your own childhood reflected in this info? I was also a rather sickly kid - had strep all the time, mono, etc - and keep getting strep to this day - I am the only adult I know that calls up the doc & asks for a Z-pac - and is always right! I can feel it coming on - it always leads with a headache. Before I had Meg, I thought I was lucky, as Strep is only a pain for me for 24 hours, as I always get a z-pac after throat culture, and the pain is gone in a day.
Anyway, the reason I am hopeful for a CVID diagnosis, in some odd way, is that you never have to say PANDAS again to a skeptical doctor. You can just say CVID, and doctors respect it, and insurance pays for the treatment. They can have IVIG for as long as it is needed. The other one that reads very very similar to PANDAS, and covers IVIG is iGg subclass deficiency - especially iGg2. I found this very interesting, as one of the big signs is ear infections, which Meg has had a ton of, and still gets - and it is a deficiency that tends to resolve in puberty! So who know, once we find someone to do these tests, Meg may not have, but I am not surprised that so many people are finding this pattern for their kids - it makes complete sense.
Lots of immunologists are really primarily allergists - Pediatric specialists in PID and CVID are actually kind of rare. So either be buttoned up on the tests that you want, or find a specialist - they are usually at research hospitals.