Megs_Mom
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Posts posted by Megs_Mom
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Also, in our case, my PANDAS son has already had 3 assaults on his brain. Who knows how many more it can handle
Finally, with my son, exacerbation #2 included wanting to do self harm and no eating amongst so much more. He was non-functioning. The older he gets, the more I would worry he would actually follow through on self harm threats if they should happen again. Also, in #3 we had the residual OCD. Luckily, we overcame the residual but what if it becomes even more ingrained if it happens again....
These are my two great fears as well. Until we know more, I have to make the choice that keeps her healthy. Every time I hear someone use the term "long-term damage" of neurons or whatever, I lock down a little more on both maintanance and prevention. As for many others, our exacerbations are so severe and in the end, were so frequent, that we simply cannot take the risk.
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I would guess that Dr. K was talking about the kids who are on a certain abx, and then later that abx seems to fail for that child. I can understand that concern, but given the incredible success we have had on azith, and the fact that a lower dose means a return of OCD, not having access to that abx is huge.
After our very first exacerbation, we did not have abx, and had a 3 year remission. Perhaps if caught quickly, abx for short term is enough. But after untreated exacerbations for over a year, a quick treatment was no longer enough. We clearly fall into the camp where the abx is doing something else for us.
Hope somebody smart figures it out soon.
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OCD, azitz. Although I believe it is likely less the symptom that tells you the abx to use, and more the underlying issue. I don't know either way, that is just my gut feeling.
You may very well be right, especially when abx is used at initial onset of an active infection.
But I guess my curiosity lies with those of us who continue to see behavioral benefits to abx use long after the infection, and at dosages that exceed what is normally thought of as "prophylactic." Or, even if at standard prophylactic doses, still see behavioral benefits that evaporate with discontinuing of the abx, even without any evidence of fresh exposure, etc.
Yes, that is us too. 100%, but can't get off azith. Now that we are in great shape with recent increase, we plan to wait a year before decreasing. In the meantime we continue to try to heal stomach issues that may be last remaining cause of inflammation or bbb breach. We are 100% behaviorally, but not confident we are done with this. We are over 2 years in, so you'd think infection is gone, although that is not definite. But I still think that the behavior is just a symptom. It would be great if the symptom could give a clue to the right abx, I just am not sure it is that easy. Great question though, hope I am wrong.
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OCD, azitz. Although I believe it is likely less the symptom that tells you the abx to use, and more the underlying issue. I don't know either way, that is just my gut feeling.
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My daughter is getting one from her elf this year, that says "courage"' because that's what I admire the most in her.
Great letter!
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There are docs in nc, Charlotte area, but w an appt in 2 weeks, I'd keep that. Nc docs are booked out. You may want to send this woman the following via mail, so the next person might get a better answer: http://www.ncdhhs.gov/pressrel/2010/2010-3-17-wakelyme.htm
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Here is the on-line link. I just used it as a thank you card to a bunch of folks. Thanks, Vickie.
www.youtube.com/user/pandasparent
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Dang, you made me cry. What a fabulous choice for a sound track. Thank you - it has been a year of hope, and recovery for so many. Sending wishes and hope to all of you that still struggle or are just starting the struggle.
Don't back down.
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I agree with the above, but this can also be OCD. Kind of sounds like it might be. I learned very late in our dd's illness, that she could "no longer write the letter "g" as a lower case letter. She could only write it as a capital letter - or cursive g was ok too. Kids often don't know how to tell you this - it sounds a little crazy if you don't know what OCD is, and how it tries to make your brain follow all kinds of rules. Ask him to copy his name from a paper - see if he will do it. Visual will not effect just the one letter. If he "can't" do it, ask him to spell his name when you say the letters out loud. If he gets anxious or angry about this, you may have found a clue. He may also have a "rule" in his head about the dog's name.
I will never forget exactly where we were, when she suddenly wrote the letter "g" over and over with great confidence.
You may want to read one of the books about Childhood OCD, such as Aureen Wagner' "What to do when your child has Obsessive Compulsive Disorder". I found this very helpful in trying to understand our daughter's challenges in the initial phase of the illness.
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No suggestions but will be thinking of you tomorrow. How is he doing? Sounds like you are finding some extra clues.
Good luck - you are doing such an amazing job & are often in my thoughts.
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I think the tricky thing is that it can be any of the following:
1. a real physical symptom (so check for UTI's, see what is actually coming out, ask some questions). If they are wetting at night, clearly that is not OCD, that is 100% physical.
2. a real physical symptom (a feeling of needing to go, but not really having anything) which is then picked up and exacerbated by OCD. In this case, you can actually teach your brain through ERP therapy, that you can ignore this symptom.
In both cases, I do think that a real issue is the start to this symptom. OCD is a wicked illness, however, and it can take a real symptom and make it dominate a child's life - and if they are not eating, jeapordize their health. So if the child cannot even eat, then while you are waiting for medical interventions to help, I would recommend doing ERP therapy for this. The child needs to function, and with some coaching to use the tools of ERP, this can be a relatively easy symptom to work on, although it is never really easy to deal with OCD.
I have a number of posts on this topic - I can't find them from here tonight, but IF you want ERP tips for this problem, please let me know & I'll try to find tomorrow night or will write up a new one. I completely understand if you would prefer to find a medical answer first. In the meantime, you may find it helpful to read the workbook that DCMom recommends, as that would get you ready for doing ERP should you find you need it as one of the tools in your toolbox.
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crossing fingers.....
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Hi Joan - I think so often of you and your son, and am so glad that he is finding some relief. Really thrilled for you.
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I think that the PTSD is real. I can't imagine having more than one child with this illness. But what my best friend & I try to remind each other is that the main thing is to have a plan of attack. We don't get return email from anyone either, but we can get an appointment with a number of docs pretty quickly. We have medicines in the cabinet that we can use for the first few days while we get the plan together. Motrin, Prednisone, Abx. We hit even a small flair with motrin. We can change abx, we can do IVIG.
You have come so far from when the first time hit and you lost your son. I know how that feels too - and I would do anything, go anywhere, not to have that happen again. I think we have done our best to be prepared. So we don't worry about strep titers being high or non-existant, we just look at the behaviors. And if they are good, then we are good. So we wait, and pray it will never happen again. And try to enjoy the time that they are good.
In the meantime, taking care of yourself is so important. You are the general, and you must use these times of relative rest to marshall your strength and plans. Go to therapy, take something if needed. Go on dates, and truely enjoy a holiday season with a son that is not lost - he is right in front of you and I will pray that he stays right there.
All my best -
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So thrilled for you - what a great story!
MDMom - yay!!!
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We found that when a child knows that their behavior seems wrong or nutty, and still cannot help doing it - that they will lie to seem normal. They know what the normal thing to do is, and that explaining why they are doing the other thing will make them seem crazy. So they will NOT explain it and will make up things - sometimes to the point where they believe that their answer is the honest one. This was another area that we found ERP therapy & reading books about OCD to be SO helpful. The more she understood about what was happening in her mind, the less she felt she had to hide, and the more honest she could be.
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We used to do 100 mg 4x a week, but have increase to 250, 4x a week. We don't see any breakthrough OCD at that level. She is 67 lbs. We will not decrease again for at least another 6 months. I have no idea if this is really preventative, but she has not caught anything other than a minor cold for well over a year now. It is clearly regulating her immune system, as we saw breakthrough OCD on the lower dose, that would go away as soon as we increased it for 3 days.
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Go LLM! You teach us all by your advocating examples. Congrats.
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We thought my son was allergic to penicillin and omnicef for years because he would break out in a rash not long after starting the medication. This summer we finally had an oral challenge with our immunologist, and it turns out he isn't allergic at all. Some viruses can interact with the abx. and produce a rash. I truly was convinced my son was allergic, but he has had penicillin and omnicef since his oral challenge and never ended up with a rash. It would be totally worth a try if it could put those meds back in your arsenal.
How do you do an oral challenge? We are "allergic" to penicilin, so Augmentin is off the table for us. Our immunologist talked about testing her in the office if we ever needed it - but I have no idea what that means. I have also had a doc tell us that sometimes kids that seem to be allergic to abx are actually shedding toxins. Not sure how you'd ever know which is which.
Tantrums, hope he does better soon. If I could not get abx, I would try the "natural abx". Thanks!
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I am not a lyme mom, but when I read about a child with so much pain, and who worsens on IVIG, I cannot help but wonder about Lyme. I don't really understand how IVIG works, and why some kids with Lyme seem to get worse but I think it should be ruled out first. I have a dh with Lyme, and just like PANDAS, I have been amazed at how hard it is to understand, how much research there is, but how few docs understand it. I am also amazed at how much pain it causes, and how varied it can be.
hmmm, 2 "rare" diagnosis' in our family....
Hope it is feeling better soon, the headbanging must be heartbreaking. Thinking of you often.
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Our dd had a compulsion to spit, which eventually became a habit as well. For her, at least, it was related to OCD. She was afraid of germs/getting sick, and was spitting, often due simply to bad thoughts, to rid herself of the contamination. It was bad enough at the worst, that she had a raw chapped face, and would have to change clothes a few times a day as they were soaked - she also wiped. In the OCD community, this is not an odd compulsion - pretty common.
It was a really hard one for me to see. Anorexia was much more frightening; I found that the spitting really raised my anxiety and embarrassment levels, and I really had to work on that a ton during the exacerbation. Humility has certainly been a lesson for me along the way.
Abx really helped a LOT, as did prednisone. We used ERP therapy & then HRT therapy to help eliminate the last of this, as we had it so long (about 5 months) that it had also become a habit. I think it is easy for young brains to incorporate illness into what feels normal.
Reading a lot of books about OCD, geared to her age, and learning more about OCD, really helped her to communicate why she was doing many things. That made it a little easier for us to deal with or develop tools to help.
I do think that abx was a major turning point for us - took about 2 weeks. She never spits now.
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Yes, having an immunological work up is very important. Kids here have a variety of underlying issues - but IF the underlying issues is a low subclass deficiency or CVID, you will not only get the proper care, but will very likely be covered for in under insurance.
I have this manual on my bookmarks: http://www.primaryimmune.org/publications/book_pats/book_pats.htm. I had to print it to read. Chapters 2 & 10 were most helpful. We do NOT have a classic or measurable immune deficiency, but still find it all very interesting.
A lot of kids here have had a deficiency over time.
I can't get that link to work!
Try this - Not sure why it is not pasting right: http://www.primaryimmune.org/publications/book_pats/patient_and_family_handbook_4th.pdf
or this: http://www.primaryimmune.org/publications/book_pats/book_pats.htm, and then click on the chapter that you want.
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Poor kid - and poor you! Hope the motrin works great for you & this is just a blip.
6 month post IVIG update
in PANS / PANDAS (Lyme included)
Posted
Best news ever for one of the worst stories. Am absolutely thrilled for both of you.