bobh got a reaction from Cristo-Krista in Dr. K Interview, IVIG & Question
Hello newfie (are you living on The Rock, or settled elsewhere?):
Our son did get better without IVIG. But he had a lot of abx (that helped), a steroid burst (that didn't), ibuprofen (that didn't), some SSRI (very very low dose, that helped dramatically once at that low dose, didn't later) and plenty of supplements.
One thing that scared us about IVIG is, that after going through the expense and trouble, there seems to be the possibility of regression after getting strep again. At least, there are some stories to that effect (I'm sure if you searched IVIG in this forum, you would find all kinds of experience).
I subscribe to "try low hanging fruit first". That is, simple relatively inexpensive things that might deliver gains of significance. One of them is ibuprofen (but you can't continue a high dose for a long time - this is just a rescue protocol). Another that is even lower hanging fruit (because it is so cheap and easy to do, and not harmful at sensible doses) is to have him drink baking soda and water every day. I didn't try this (our son was better before I heard of it), but I would have had I known, based on the research behind this article: https://www.sciencedaily.com/releases/2018/04/180425093745.htm . We did try various supplements, and we did find one (phosphatidylcholine) that did help our son (but doesn't help everyone). With supplements, I would be very careful - some make some kids worse. Our kid got worse on probiotics, and I have since found that this is not that uncommon among PANS/PANDAS kids.
So there is lots to try even while you book and wait for an IVIG appointment if that is what you want to do.
bobh got a reaction from Cristo-Krista in Beginning our PANDAS journey. Advice please
Ibuprofen (aka advil, motrin) is for some (not all) a "resuce med" in a flare (you can't keep giving it indefinitely).
It is definitely the case that some abx work and others not, and it varies from kid to kid and (likely?) by particular sickness for a child..
Haven't had the vomiting experience, but have had our fair share of mystery stomach aches.
I have no experience with Colorado docs - am far away.
bobh got a reaction from MountainMom in Participate in a Pilot Study of Genetic Patterns in PANS/PANDAS
I committed to feed results back as they trickle in, so here is one such result: For MTHFR A1298C (rs1801131), there were 70 sets of data: - 5 were homo for the risk allele (i.e., +/+) - 23 were heterzygous (+/-) - 42 of them did not have the risk allele at all (-/-) For MTHFR C677T (rs1801133), there were 71 sets of data: - 5 were homo for the risk allele (i.e., +/+) - 26 were heterzygous (+/-) - 40 of them did not have the risk allele at all (-/-) The first result above is a lower count of risk allele than the general population, and the 2nd is a little higher - but neither statistically significantly so, according to how we setup this analysis. Particularly together, the two of them are pretty much like the general population in terms of number of the risk alleles. I hope this result is not upsetting for any that feel these MTHFR SNPs are a significant player in PANS. Because it doesn't correlate wtih PANS doesn't mean that it isn't something of significance for your particular child. So far, we have only tabulated results like the above (how individual SNPs for these PANS kids fare against the general population). We are still wanting to look at other patterns of many SNPs together among the participants, which might show something statistically significant even if an individual SNP doesn't. It can also be the case that for a given individual, a certain combination of SNPs, including these MTHFR ones, work in a way together to affect the disorder. It is really hard to do either of those kinds of analysis with our genetic data though, so we'll see how our investigations of that works out.
bobh got a reaction from MountainMom in Participate in a Pilot Study of Genetic Patterns in PANS/PANDAS
Note: This has been approved for posting by Forum administration.
For any that contributed to this genetic study that we posted here (and elsewhere) - thank you so much! The cutoff was last night, and we had a great result - 71 sets of data.
I will post some tidbits of "aggregate" results here (and in the other groups this was put in). I am wary of posting full results on facebook, because then facebook could claim some ownership. Instead, full analysis results (data in aggregate form only) will eventually be posted here:
That link above is live to the public now, and you can see (in the last revision of a registration plan), what are the 78 SNPs that we have looked at.
We are going to look at many more SNPs, though, and do lots more analysis than what is listed there. The plan was just to lay out in advance what we could declare as significant in this pilot study.
bobh reacted to Dave401 in PANS - trying to find similar case (DD17)
I also got pans when I was 14 and I always got strep infections, what worked great for me was having my tonsils out , I haven’t got strep since then 12 years ago. If she’s constantly catching things I think it would help. Adenoids removed too
bobh got a reaction from dbasel in ASD/PANS/PANDAS with Lyme and low immune system - IVIG solution?
We have not gone through similar, so can't comment too directly, only on your statement "...apparently in true PANDAS cases it [OCD] accelerates anxiety and vice-versa?"
Well, I would say that OCD, if it starts more slowly in a PANS/PANDAS child, is somewhat calming at first, when it is not otherwise debilitating or noticed by others too much, because there is some satisfaction derived from "repeating it right" when they finally get there. But when it grows much more significant later (or for any person with severe OCD) the sufferer fairly quickly becomes exasperated with how debilitating it is, and sometimes satisfaction is eluded, and so of course that creates plenty of anxiety. So I think your statement is fully true for those with very quick onset of PANS/PANDAS, and eventually true for all.
If you can get and afford the ivig, the potential benefits probably outweigh the risks (in my mind).
bobh got a reaction from Sanda967 in Please help! Please help! Aggressive behavior/worse sleeping/possible illusion
Our son also had brief "absence seizures" at the beginning. We eventually tested for lyme, bart, babesia and others, but only ever found ehrlichiosis (another tick-borne infection).
bobh reacted to Hitman3161 in IVIG at 25
Thanks guys for your response. This is an unnerving time for me. Although, after the operation I was able to achieve complete symptomatic remission for 3-4 months and enjoyed a good period of health.
I have responded positively to every treatment intervention so far. Positive response to abx, tonsillectomy etc.
I understand that it may not work at my age, I have had a lot of social stress to deal with as well which has probably exacerbated the symptoms - I’ve dealt with social isolation for many years.
I am going to trust my gut and go ahead with the treatment, I’ll keep you posted and updated for the benefit of others - as I’ll probably be one of the oldest to receive treatment and success would be highly reassuring for the rest of us adults.
Thanks so much for your support.
fingers crossed 🤞
bobh reacted to MomWithOCDSon in Disrespectful behavior
I like "The Explosive Child," also, and while it's not specific to PANDAS, necessarily, one of the authors has worked with Dr. Swedo in her research at NIMH, so he's at least familiar with PANDAS presentations.
I'm not sure it matters whether the disrespectful behavior is uncontrollable because of PANDAS, or if it's uncontrollable because your kid is so far out of his self-control that he can't stop himself from blurting out rude words or making rude gestures or whatever. I mean, yes, PANDAS can definitely mess with your executive functioning and make it more difficult to display age-appropriate behaviors. But most behavior of that kind comes from a lack of self-control, irrespective of the genesis of the lack of control. Either his brain is physically impacted so he acts out, or his "mind" is emotionally impacted so he acts out, the results are the same. And maybe the same tactics are applicable for the behaviors, as well. "The Explosive Child" has some great strategies you could try, but as I recall, pretty much all of them suggest that you de-escalate any unpleasant exchanges by dis-engaging, taking a few minutes to calm down and dial everything back, and then re-engaging again in a calm, controlled tone of voice and body language to resolve the dispute. Seems to me that could work whether PANDAS or non-PANDAS.
I personally think that pretty much ALL non-age-appropriate behaviors (meltdowns, tantrums, etc.) our kids may display during this illness is at least partially -- if not wholly -- attributable to the illness. But then again most "normal" kids will test their limits during the natural course of growing up, too. So, in your shoes, I might ask myself, "Is this behavior I could expect to see out of a 'normal' XX year old?" If the answer is "yes," then maybe you deal with it as you would with any kid behaving that way. But if the answer is "no," I think you still address it, but maybe with a little extra compassion and patience, adding into the discussion something along the lines of, "I know that you're feeling especially out of sorts right now while we get the inflammation in your brain and the other PANDAS stuff under control, but you have to know that speaking/acting that way is still unacceptable. Let's try and brainstorm some things you could try instead of yelling at me/your dad next time you feel this way."
My son hated being told he was not acting his age when he'd meltdown over something pretty minor or lose his patience in 0.2 seconds during his PANDAS. But I've got to be honest; I didn't do it to be cruel, but I felt like it was somewhat important that I hold a mirror up for him because I didn't want him to dig a deeper and deeper hole for himself socially. I wanted him to have some outside perspective as to how his meltdowns looked to his peers in the hopes that it would give him some incentive to work with me on some of the "Explosive Child" strategies for dialing things down so that he could "save himself" in some of those outside world situations. It was tough, and we weren't always successful. But I do think it helped him maintain some perspective, especially when he got out of that intense moment and could look at things a little less emotionally.
All the best to you!
bobh reacted to Priscilla in Possibly PANDAS?
Funny I just got a notification from this response. I have not been on this forum in a very long time. I am so happy to report that I have a very healthy happy 16-year-old daughter who is no resemblance to the child that was in such turmoil. I will however say it has contributed to the person she is kind, compassionate and confident. I just went for an IEP meeting today which we did not even try Start one until eighth grade where things got worse before they got better but I have to say once over the hump of entering puberty things really started to balance out. She has not used one accommodation from her bare bones IEP she has good grades healthy social relationships and almost no residual OCD. I hope this gives hope to the parents that are going through this. My main advice and one of the hardest lessons I learned and she actually helped me see it was not turning her into something that needed to be fixed with all the desperation of trying to find her help she did feel like that for a time. Funny once I excepted exactly how she was whether it was going to last forever or not is when she started to get better. Sending love and good vibes to all of you and hope for a better day.
bobh got a reaction from MomWithOCDSon in Can you help me solve this problem?
I don't see a link to the page, but highly doubt that there is a valid conclusion that treatment for a year provides assurance of no relapse.
Relapses are very common, and there have been trials of abx that document relapses or flares, even after a year of prophylactic doses. I hope this comment doesn't depress you further, but if so there is still hope. Our child improved dramatically with puberty - though not all do. I have found that the job becomes chasing all the triggers (including non-strep), as we don't seem to have a cure for the immune dysfunction, except possibly puberty.
bobh reacted to MaryAngela in Adult PANDAS doctor in Chicago?
Donald Raden, MD is an Integrative Psychiatrist in Highwood, IL. His practice is called the Raden Wellness Center. My son (age 13) has been under Dr. Raden’s care for 1 year. He saved my son’s life. He treats many young adults with PANDAS. My son’s case was severe.
bobh got a reaction from ABdualPT in Tonsillectomy and Adenoidectomy?
Ok, here is a spreadsheet attached that includes a brief description of the tonsillectomy experience, and then a link (all but 3 to a thread here at ACN Latitudes) if you want to read more. (The hardest part of this was actually weeding out duplicate responses in different threads).
bobh reacted to rhyanen in Delusions
When my 17yo ds is in a flare, his predominant symptom is psychosis. He will have minor auditory hallucinations as well which seem more sensory related. He will become paranoid and fear that someone is going to break into the home and kill him....whether that be the government, someone he knows or even my husband. He'll also think the killer is sending secret messages to him through media online or see certain symbols. I'll spend nights with him calming him down. It's a nightmare to say the least. I'd take the tics and OCD again like in the past over this. He also has Lyme so it's ard to tell if it's coming from the PANS or the Lyme.
bobh reacted to Cind in Strep alters gut leading to inflammation
The results obtained from this study suggest that streptococcal infections can alter gut microbial communities leading to a pro-inflammatory state in the gut by selecting for specific bacterial strains that are normally associated with gut inflammation and activation of the immune response (Figure 7). This condition is likely maintained in patients, even after the infection itself has resolved. Moreover, an altered GM composition could have indirect effects by reducing the production of metabolites involved in important brain functions such as SCFA, D-alanine and tyrosine metabolism, and the dopamine pathway. Thus, the GM composition may possibly influence behavior, as clinically observed in PANS/PANDAS patients.
bobh got a reaction from fiddlegrl in New member and mystery illness
You did mention your moldy house. You can also search here for mold and find a lot of discussion - it is a recognized environmental trigger at pandasnetwork.org, which is a rich source of info in case you are not aware of it. Do you have any option even just to try a different location for a week or two, to see if there is a difference (including when you come back)?
I would tend to believe that, with a lot of patience, you could find something that would help your symptoms, possibly only somewhat like Xifaxan has, but perhaps much better. It would take work and energy that you may not have. So, lean on us here, ask questions. This forum is not as fast-paced as most facebook groups, but there is to be a wealth of experience here.
bobh got a reaction from O_Bear in GF diet helped, but then stopped. Input?
That low-grade fever and red throat seems like a clue that what he could be fighting caused the flare - if the timing makes sense. A couple of days (and possibly longer) before those fever/throat symptoms could still explain a flare then.
bobh got a reaction from O_Bear in GF diet helped, but then stopped. Input?
I am so sorry that you had not received a response to this question. I myself didn't happen to notice it over the last week even though I am on briefly a few times a week. Has he changed over this past week?
My first thought is that perhaps he has another trigger that he was exposed to at just the right time. How far-fetched that theory is depends on how long you left him on the "re-introduce gluten as a test" before you took him off it the 2nd time. If that was only for a day or two, it almost seems like too much of a co-incidence. It would still be possible, but it is a wild enough co-incidence to put doubt in my mind.
Then the other possibility I draw from my pharmacist sister, who says that she often has patients that try a drug (we were talking about SSRI's at the time, so I am not sure how broadly this brush paints), get good improvement from it, then after some time (months, I think), get tired of its side effects and go off for a while. Then, when they want to try it again because of the symptoms, they find it doesn't have the same effect as it did the first time. This is common enough that she hears about it regularly. Who can understand the mechanisms involved in that? If a food has an effect on neurological/mental illness symptoms, then can it act similarly to a drug that has a neuro effect? It seems plausible to me, but like I say, who can explain the details of that kind of interaction? This theory offers no obvious next step.
bobh got a reaction from kakrpa in Discipline question
What I like about that line above, is that it emphasizes what you directly control - your own reaction to the behavior. A major problem for me was my own frustration. I could regularly see that I was not patient enough. But, if the OCD drives us nuts, it is even worse for the child, and he's just a child - without adult faculties. So intellectually, I always have to tell myself "cut him some slack, it's not really him." What I am talking about is not what behavior is allowed or not in the house, but about our reaction to them, in particular the severity of consequences for behavior that we impose. We shouldn't treat each child identically, but rather according to their needs and abilities.
I don't draw a distinction between rages caused by PANS, and "behavior". It's all behavior, I didn't think that I can truly separate the two as long as PANS remains.
bobh reacted to searching_for_help in Hallucinations, RADON?
When we are away from home, it never happens. I'll be calling for another radon test today.
Any functional or integrative medicine doc will say YES to EMF sensitivity. If you get on Pubmed, research shows different things, but since I spend every spare minute researching health issues, the one thing I can tell you is research outcomes are determined by whoever funds the study!
That being said, my son, who is probably autistic, doesn't say much, NEVER complains, we have a terrible time knowing if he is uncomfortable, etc.,... when we moved here and he would go into the room with the Comcast router/modem, he would come out and say he didn't know why, but his head hurt. I was shocked, as he NEVER mentions any ills unless I quiz the heck out of him! Our doctor is a general practitioner, but her adult kids are on the spectrum, and her son had the same issues, and he uses something to sheild it and it works for him. You might want to try mercola.com, I'm sure he has some info on dangers of wifi. Plus we already know too much cell phone use causes brain cancer, and of course no one believed that when the idea first came out...
As far as avoidance, there are lots of docs posting how to avoid it. Some people put their router on a timer and shut it down for the night for a break. You should never have a tablet, phone or computer, or even your alarm clock next to your bed. Some people that get sick from it go so far as hardwiring everything, instead of wifi, like in the "good ol days"!
Yes, the canary in the coal mine is definitely real. Such as our mold issue. About 25% of people have the genetics where they don't clear the mycotoxins, so you can have a room full of people, and only a few will get sick from it. Thankfully, with epigenetic studies, these people aren't labelled "hypochondriacs". Actually, I'm the the one that made the connection with our dd. She didn't know why she would get sick, but she finally realized after years of getting sick that mold was the trigger.
There are many sites on how to protect yourself from EMF. Hard to know which ones are legit... you might want to try a European site, they seem to be much further ahead of us when it comes health issues.
bobh reacted to MomWithOCDSon in New member and mystery illness
Fiddlegrl -- Welcome to the forum, though I'm sorry for all you've been through and the issues you're still fighting.
I will say that I've been with this forum for many years now...first during my DS's illness and healing, and then somewhat less frequently for the last few years, checking in to follow up on old friends and any new research, and to chime in when something resonates with my experience. Pretty much ALL of the symptoms you've described, unfortunately, have been discussed here as part of the PANs/PANDAs continuum. It stinks.
I don't have any practical experience with respect to Lyme and its co-infections; my DS's syndrome was clearly strep-related, though seasonal allergies exacerbated inflammation and the immune response for a number of years, once the PANDAs had kicked into high gear. Like you, though, we believe his behavioral issues were tied to atypical strep infections potentially as young as 3 years of age, though certainly by the age of 6 when he was officially given an OCD diagnosis. But he never tested positive (via swab and culture) for strep at the time, and no local doctors would give us the time of day regarding PANDAs then, either, so he went without any real treatment until he hit 12. That's when the PANDAs brought him to an absolutely non-functional state, the research coming out of NIMH, Columbia and Dr. Cunningham had progressed, and we were finally able to talk someone into an antibiotic trial. It was a long road, but the rest, as they say, is now thankfully pretty much history.
As a result of our experience, though, I do think it likely that PANDAS/PANs sufferers who are at a more advanced age before receiving immune and/or anti-inflammatory therapies may have a harder road with respect to healing and "bouncing back;" not sure if that's because the brain "wiring" has matured more in the interim, or if the chronic inflammatory and auto-immune responses in the body are somehow more entrenched and therefore harder to reverse. In the end, it took my DS about 5 years in total to return to pretty much full functionality, and that was with auto-immune, therapeutic and psychiatric interventions all thrown into the mix. He continues to contend with some OCD and situational anxiety now and again, and I'm not convinced that this will ever disappear completely. But those issues remain at manageable levels (knock on wood), and he's happy and healthy and constructive and functional. Pretty much all we could ask for, after what he went through.
I'm not sure how to advise you on any possible next steps, really, except to suggest that perhaps exploring some additional genetic markers and methylation issues might help you for the long term? You mentioned genetic testing for porphyria, but did you get a full work-up? A search here on the forum for "methylation" and "mutations" will lead you to multiple discussions regarding the methylation cycle and how genetic testing has helped point some families to a regimen of supplements and/or medications that proved to be more effective for them in light of various mutations and genetic predispositions. Perhaps that's worth a try? Finding a well-versed LLMD and/or integrative physician who could be your partner in working through these issues would be a bonus.
Your post was very well-written, so I'm picturing an intelligent, capable and fairly "together" young woman, so I sincerely hope you're finding moments of joy and contentment in your everyday life, despite this tremendous burden. All the best to you!
bobh got a reaction from autumndawn in Feelings of Introversion, Irritation, and Indifference?
I am so sorry to hear about your struggles. Have your symptoms changed since you started the abx (antibiotic)?
I don't have any experience with adult PANDAS, but can easily imagine that what we see in children can easily translate to what you are describe as an adult.
If your symptoms did get worse since the abx started, search "herx" with the dialogue box in the top right corner, once you are in this group (rather than the entire site, or just a thread). That will give you a bunch of hits on experiences of getting worse before getting better on abx. Descriptions of herx are usually dramatic, but that might be because only the most dramatic reactions are noted and reported - there may very well be such a thing as a slow, drawn-out herx.
bobh reacted to MomWithOCDSon in Antibiotics during flare question
There are studies that speak to other properties of various antibiotics. For instance, beta-lactam antibiotics are thought to have glutamate-modulating properties, and another class (cephalasporins, maybe? my memory isn't what it used to be) are anti-inflammatory. And if your kid is taking Augmentin, for instance, that clavulanic acid component (Augmentin being amoxicillin plus clauvanate) is thought to have some neuro-protective characteristics of its own.
There are multiple, older threads here about various antibiotic characteristics, and a Google search will give you some answers, too.