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Hi Alex--thanks for posting even when you really are trying to stay away....I can't tell you how much these posts help to hear from people...

I have a question about the dental problems and Celiac....I am suspecting it in one of my kids (non-pandas), and wondered what you meant by that? Also, that link you posted is not active...would you mind checking and reposting??

thanks!

wendy

 

 

I haven't been posting at all because things were not going well. My son would have a brief good stretch and then relapse. I am hopeful that we are finally getting to a point where we are making some lasting headway, but it is still too soon to be sure.

 

My son had PEX and has had five high dose IVIG's with the best response coming after PEX and the first IVIG. Subsequent IVIG's have had a positive effect but nothing long lasting or dramatic. But for each of those IVIG's that didn't seem to do much, we had a fairly significant immune challenge fairly soon after that may have been the reason, tooth infection, ear infection, multiple bad colds, gastro-intestinal illness.

 

The tooth issues have been big for my son. After PEX, he had a tooth infection that was devastating. Like others I have seen on the forum, he seems to have a significant uptick in symptoms even with a loose tooth. He has three baby teeth left and I can't wait until they are out. I had a thought the other day that the supposed growing out of PANDAS at puberty may be related to the fact that around puberty is also when all the adult teeth have grown in. I have heard so much lately about poor dental health resulting in inflammatory/immune processes taking place in the body, such as heart disease, related to the bacteria from the mouth that enter the blood stream when people with gum disease chew or brush teeth. Maybe the same thing is happening with the loose teeth. The breach of the gum allows all that mouth bacteria an avenue into the body which requires an immune response, and voila', psychotic child. Just a thought.

 

Anyway, we finally broke down and saw an llmd when nothing else seemed to be working. He didn't see any real evidence of tick born disease in the test results but said that doesn't necessarily mean anything, and that regardless, my son's issues certainly seemed to him similar to what were infection induced problems in others and thought it was worth it to try a multi antibiotic approach for a while. I would say we have definitely seen positive results, although he is not symptom free, he is happier, has much more mental clarity and is more vigorously health. We'll see where it goes.

 

We also recently took him off of gluten due to ongoing bouts of constipation followed by diarrhea and low appetite in addition to poor teeth quality which is a Celiac symptom. The stomach problems are certainly much better, and Celiac is associated with mood and behavior disorders and even OCD. Here is a link. http://psy.psychiatryonline.org/cgi/content/full/50/3/300. We are going to eventually get the testing for Celic, but that requires going back on gluten, and right now we don’t want to rock the boat.

 

I wish we had better news but he has really had a good stretch these last few weeks and we have some optimism again. I'm still convinced that worst case he can live a good life with at most a low level of symptoms that need to be managed. Hopefully better than that. I still read the forum on occasion and still hope someday to get on here and tell of our success.

Alex

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I still read the forum once every week or two. Most of the time I find that someone else has already said what I would have said, so I don't post. My dd too, has now been diagnosed with Lyme after a year of PANDAS treatment (multiple hd ivig and antibioitcs) did not get her to 100%. I read the Lyme forum more often now, but don't participate as often as I did when I had no idea what was wrong or how to fix it.

 

Dd has been on Lyme treatment for about7 weeks now. She is struggling with the herxing but I do feel like we are on the right path. She has had 4 lyme rashes as a result of die off. We are one of the few who is continuing with IVIG and Lyme treatment.

 

It's been a long road to figure this all out. I'm tired and sad. I wish I could say we weren't here as often because my dd is well, but that is not the case yet. I will certainly come back and let you know how she is doing as she continues with treatment.

 

Momaine

We are a PANDAS/Lyme family that is doing IVIG along with abx treatment for 12 ds. I'm rather sad & tired, too. The trend is positive, but I wish straighter & faster. We are all gradually jumping into lyme tx. PM any time. Dawn

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I just want to thank all who responded in this thread. I cannot imagine negotiating PANDAS without all the information and support that is found on this forum. Hearing different stories, having access to important information, and knowing there are others who are going through a similar experience is invaluable.

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I have only posted once or twice since finding this forum (lifesaver!). I am in constant lurking mode and agree that most comments or questions that i might have seem to be posted already, it is just a matter of reading reading reading to figure out what to do or gage where we are at.

Our ds8 was dx July 2009 after sudden onset. I self diagnosed him using google (ah the dangers..) and our lovely ped's reply to my frantic report of his symtoms over the phone was 'classic PANDAS.' So needless to say we did not have the struggle that so many had for recognition of PANDAS and for that I am extremely grateful. Strep titre at the time of dx was 798, cunningham test put him in low pandas range, consistant with our observations. DS was given full dose abx and has been on prophylactic amox ever since. Going in for a fresh blood test today to pin down a new head shaking tic. He has had the classic sawtooth recovery, but this new tic is stronger than we've seen this past year and doc is worried abx are no longer working.

 

Here is a not so brief symptom list:

 

Pre sudden onset:

eye blinking tic

extreme food sensitivity - smells, textures

gag reflex

 

Post sudden onset:

symmetrical tics (wrist circling, wrist rubbing, ear touching)

hyperactivity (inability to stop moving, etc.)

cognitive fog

maniacal laughter, smiling

regression behavior (baby talk, affectionate)

nose picking, sniffing, finger licking

anxiety (fear of elevators, nightmares)

encopresis

nose scrunching tic

neck stretching tic

irrationally emotional (e.g. - last night he was trash talking about his twin bothers (7yo) and I asked him to go to his room. found him crying in his bed a few minutes later and in a rage at himself saying he was such an awful person and repeating that he couldn't help himself from saying not so nice things about his brothers. absolutely heartbreaking.)

 

Granted some of the above only occur in an exacerbation, of which we are obviously in one and we seem to cycle through tics, losing one for the next. We did allergy and lyme tests, both neg. Give probiotics when i remember, try to limit his sugar, refined foods, intake. In general he is happy, well adjusted, good friends, good student. Until this latest tic, it was hard for people to notice there was anything amiss with him. The biggest complaint from his teacher is 'transition issues' but then there are five other boys in his class that have gotten that complaint.

I definietly feel like I have a different kid when he is in an exacerbation and it is hard to watch. I have been struggling to not define him that way and want to accept my child in whatever form I have him and not yearn for the 'normal' kid when i'm dealing with the PANDAS kid. This is my guilt.

I can't thank everyone enough for sharing their stories and advice here, there is an amazing amount of strength and effort in this group that is inspiring. I know our experience can't hold a candle to what some of you are going through. I only hope that, with all this information and detailed documentation, families that face this in the future will have an easier time curing their own kids.

-Deirdre

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Hi Alex--thanks for posting even when you really are trying to stay away....I can't tell you how much these posts help to hear from people...

I have a question about the dental problems and Celiac....I am suspecting it in one of my kids (non-pandas), and wondered what you meant by that? Also, that link you posted is not active...would you mind checking and reposting??

thanks!

wendy

 

 

I definitely am not trying to stay away from the forum. This forum has been a life saver for us and I will be forever grateful (even though it is a bummer when people start sniping at each other) It's just that I don't have too many questions I want to ask right now, and all that I would have been able to post as news would have been bad. The reason I posted the other day was because finally we are feeling like we had something positive to say. Things were looking up.

 

As far as the teeth and Celiac, I don't know that much about it to be honest. Only that with Celiac you don't absorb nutrients from your food that well because your intestines are damaged by the autoimmune attack. So you have poor teeth enamel (along with other deficiencies) and are prone to tooth decay. My son had a ton of decay in his baby teeth (even though I think we were doing a pretty good job of taking care of them) and along with other symptoms, we finally clued in that it is a possibility for him. Since stopping the gluten, he hasn't had a single bout of constipation or diarrhea. Once I started the dangerous process of Googling Celiac, I started to see all the stuff about behavioral problems associated it. My son may not have it, maybe even probably doesn't have it, but certainly we had enough signs that it was something worth looking into. Our philosophy so far on the PANDAS stuff is that if my son isn't making progress, then we are missing something. Even if it turns out that there was no Celiac( or tick borne illness), we are very far from throwing in the towel. We will just need to keep searching until we figure out what it is that is keeping his immune system on alert.

 

Hope this is a better link- http://psy.psychiatryonline.org/cgi/content/full/50/3/300

 

Here is another interesting one- http://healthy-family.org/caryn/289/scientists-have-discovered-that-celiac-disease-can-be-the-root-cause-of-most-neurological-disorders

 

My son had a great day today.

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HI Alex-

 

SO good to hear from you! I am so sorry your son has continued to have a tough time. This is a really frustrating disorder! I am so glad you are seeing some positive things!!! Please stay in touch, when it works for you!

 

Loosing baby teeth brings up issues for both of my girls. My older daughter had pex in March 2010, she had about 95% remission until October, when she lost four baby teeth in two weeks. At that point we saw an uptick in symptoms, mainly oppositional type behavior at home (very out of her normal character). These symptoms persisted until she had a virus in mid December, and then things went haywire. She woke up one morning with full blown ocd. Ugh.

 

My little one just lost a baby tooth, and we had at least a week of worsening, but now that its out, things are improving quickly. Unfortunately, she counted, and we think she may have 8plus more to lose.

 

For us I have noticed that the more severe episodes are brought on by a 1-2 punch; loss of teeth and then virus prior to recovery. I am nervous now because the older one is healing from last episode, and has a cold.

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