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Hello –
are you speaking of what I call my “GI tune up”?
In my experience, anything can cause anything.
But when things happen, I use that data to sort out what this tells me about the patient… that I can leverage to help them.Can you pls give me more story? If so, we can tease about what that tells us. Since in my experience…. The body always makes sense.
Cynthia
Amanda-
Can you pls reach out to me on email (so the whole discussion isn’t here on the “board”) at andkeller2@gmail.com?
I would love to talk to you about the Piezowave for sure, and possibly both.
Thanks
Cynthia
PS “hello!” and I miss seeing your happy face!
Welcome Anthony !
Clearly you are in the right place.
Consider joining us in person for something next?
We would love to get to welcome you in person as well!
Warmly,
Cynthia
Will Haas (MD) who taught at the IV certification weekend, has his IV clinic platform (protocols, chart system, ordering system, IV lab certifying support, etc) up and running. We have loved working with Will and the rest of his team. I highly recommend looking into this if trying to set a clinic up.
It was too daunting alone, and working with his pre-made inventory system, IV bag recipe labels, and chart notes made it totally doable.
He also has great ideas about business model suggestions.
His company’s name is “Infusive”
Cynthia
Jan-
I am sorry about my tardy response. In part it is due to my crazy schedule. But honestly in part it is due to the fact that the data you gave me below isn’t in the form I need it for me to be able to formulate an understanding of what I think about how to help. As I mentioned above in my prior response, in peds, we 100% need height/weight plotted on a growth curve. Unfortunately the data you gave me attached here are just ht/wt with dates.
In adults you can kind of conceptualize what ht/wt changes would mean. However, in kids it is a moving target. And so it absolutely matters where they were on the curve to start with, what age they are (as the curve slope of ht/wt/BMI changes with developmental stages), etc.
It is actually kind of a pain to take someone else’s patient’s data (like below) and try to get it into a growth chart without knowing their exact age at the time of each ht/wt measurement. It is easy for me to do this for my patients whose exact DOB can be added to a patient chart and then all of their data points plotted along that curve.
As I knew that you are not used to seeing peds, and therefore that you might not know all of the above, AND because I really wanted to help you (this family)…………..despite this being a pain, I have sat down several times and tried to make myself take the time to hand plot your patient’s data onto a growth curve (estimating his exact age to the month for each of the data points you gave me). And honestly then each time I ran out of time, or got pulled away, or got frustrated and stopped. As such… I am sorry I do not yet know how to answer you yet.
Can you get me a picture of his growth chart? Then I can be much more helpful. Any doc who sees him has this info in their chart (for all of the above reasons) and the parents get handed a copy at every well-child check. It would be as easy as calling the pediatrician’s office and asking for the growth chart to be faxed to you. As pediatricians, we never send a referral for anything on any patient without including the current growth chart.
I am ready to give more ideas/thoughts when I can see this.
Thanks
Cynthia
Patrick-
Just a few thoughts to lay out here to help come at your 41 y/o patient (or any patient with POTS for that matter) from a “step back and think” perspective.
I like your thinking and they way you came at her case. And in so many more easy and straight forward cases, these things that you did would have helped her get “right” enough that she likely would have been able to finish healing.
However, when you get someone like this who cannot get back on her feet despite your good thinking and treatment plans.. then I recommend doing the below (which is reminiscent of what I say for pretty much any tough patient on the discussion boards that I talk about no matter if it is a patient with CIRS, Chronic tick borne disease, POTS, mast cell activation issues, etc)……
POTS isn’t really the primary diagnosis right? It is a description of something that is happening due to dysregulation of the patient… due to “something”.
And while there are lots of medications that you could use for just the POTS, if POTS was THE issue (beta blockers, midodrine, etc). There is a nice (and easy reading) little book that I will try to remember the name of (about POTS) that has pages for the patient, and pages for the doctor which can be helpful for brainstorming ideas together. When I stop trying to think of it, the name will likely come back to me… and then I will come back and add it here. 🙂
Instead (what I think is the correct question that you are asking here) the real question is: why the POTS? and why isn’t she recovering?
In my experience, pre-CoVid I would have suggested that the above patient had underlying TBD (like chronic Lyme, etc) almost assuredly. And that you should work to stabilize their POTS and limit their activities until getting their Lyme “beaten back” a bit. However, now… as CoVid seems to be “the great equalizer”, I see what you are describing here in people who I do not think have TBD. Meaning, that CoVid can pretty much F-up the immune system as much as I used to see only chronic Lyme do.
So my first recommendations on your patient would be:
-work up for Lyme/TBD (if you are not experienced at this, enlist the help of a Lyme literate doc (ILADS is a good place to look for resources).
-At the same time I would have tested for EA for EBV to see if there was a re-activation of this in response to the CoVid illness she had. Treatment of chronic/reactivation of EBV is a heavy topic in itself. If you end up with this as the issue… re-ask me for ideas for this.
-If the above isn’t an issue then I would think that it was the CoVid itself (well really the crazy immune and inflammatory response to CoVid, right) I would then sort of call this “long-haulers dysregulation” . And for this I would consider:
a) Glia, and then if helping I would add Neuro (join the amazing Dayan’s Round Table discussions or take a look at his education programs now).
b)I would also start Larazotide 500mcg BID initially to help stop the GI damage from CoVid from continuing to strike the match on the inflammatory response
c)Tollovid (3cl protease inhibitor) wondering if there was still some indolent low level viral activity present
d)I would restart the TA1 if it fell off and if still available.
And then I would reassess in 2-4 weeks. Of course there are a million more good ideas to try (you picked some good ones to try first), but if I had to pick a few things to do right now, these above are what I would pick to try first.
If the above was bringing back some of her vitality… then “great” and I would know which way to continue working. If not… and there was no change, I would know that I needed to go a different direction (meaning I would stop these treatments and ask the next treatment “question” like below).
In short, I would keep asking questions like “maybe healing cell membranes, and the GI lining and killing CoVid will help”? And then (this is the most important part) I would pay very close attention to the response her body gave. I value these answers (how they responded), more than I even value lab results. This is the way to solve the issues plaguing any patient with complex health issues.
-If she had no response to the above at 1 mos, I would maybe consider if her symptoms were mislabeled as POTS but might actually be more Mast Cell activation related (can drop BP, can make heart race, can cause syncope, absolutely can cause disability, etc. Also, heat can also be a frequent trigger in these patients). This question of “could this be a mast cell related issue instead”? would then be my next question I would ask. In this case I would likely do a trial of pepcid, Xyzal, singulair and add gastrochrom (if any symptoms related to food intake). This is sort of my “poor mans” Mast cell “lab test”. I do this for 2 weeks and ask, “did it help”?
If it helped some… I go further down this path. If ZERO change, then I stop these and ask the next question.
-And so I go step by step until we get someone who is READY for the reconditioning with PT.
To be clear, the recovery from POTS (or long haulers, etc) can be greatly helped in the last step by reconditioning PT (done by someone who knows how to do this well, and listens to the patient)… if done too fast we see huge back slides. And you can fully tip the patient way back down to where you were when we started this discussion… and needing to go back to all of the steps we already just did.
The same is true if they think that they are better… but then push themselves too far or too fast. They don’t just get worse for that day, they often get worse for months again.
So just like I said that the PT needs to listen too them (and not push them too fast or too far), the patient also needs to listen to themselves and really rest when they know that they are at their limit. To this point in your patient story above…
When your patient felt better she went back to work, started taking her kids to school and started taking walks again.. and within a few days had a relapse. She likely should have started with taking her kids to school one day, and if that went ok… then trying just this for a week. And then short walks around the block… all before thinking that she should step back into a stressful work setting, etc.
And I am not blaming her, I promise. It is NOT her fault. After feeling somewhat better after all of that, she was hungry for re-entering life. I get it. 100%. So with these patients, you being there and educating them along the way will be as important as any treatment you offer her. Especially when they become disheartened!
I am not promising that I will have guessed it correctly with my few clinical “questions” (treatment trials above). However, if you work in this way… or if you tried something like this……. even if she wasn’t all better at the end of these few steps, I do know that you would have a lot more data about which direction to go, or as importantly, not to go as the next step.
I hope that you have luck helping her in your next few treatment trials with her. Or, better yet… I hope that by the time this posts, she is already better since it took me a few months to respond here.
Warmly,
Cynthia
Clyde–
Great question!
We have long appreciated the use of cyproheptadine for several important off label uses in pediatrics.
If the FTT is due to lack of caloric intake, then cyproheptadine is a great option to try. We have been using this off label in peds for increasing oral intake for decades.
In short, a reminder for those who do not usually have to talk people into eating more (likely not as common an issue in adults as in peds)…….
Cyproheptadine (Periactin) is an old-fashioned anti-histamine which is no longer used for this affect, due to the fact that it usually makes people hungry, and therefore eat more and therefore gain weight. However, in peds we have used it regularly for decades in kids with ADHD, in whom the use of effective stimulants was limited by the appetite suppression of these meds (thereby causing weight/height/growth concerns). In these kids, if you gave them the stimulant WITH cyproheptadine in the morning…. they were often focused and would still eat lunch. (Side note here: in my experience, the effect lasts about the same amount of time for these two meds, and the stimulant suppresses more than cyproheptadine supports eating. But at least you could then talk the kids into eating).
The typical dose I use for it in these settings is 4mg Qam (at the same time as stimulant).
More and more now in the last few years (maybe the last 10 years) we have been using cyproheptadine in kids for a handful of other things:
-We enjoy the anticholinergic effects of cyproheptadine in it’s off label use for functional abdominal pain.
-We have been using it more and more lately for things like anorexia nervosa (here the dose is MUCH higher … like 8mg QID).
-It can be used to counteract serotonin syndrome if you overshoot with an SSRI (as it can be a potent serotonin antagonist as well).
And of course, to your question Clyde…. it can help make it easier for you to talk a reluctant kid into eating in general…. which is very helpful when you have a child failing to grow well (WHEN it is due to lack of caloric intake).
So if your child is not getting taller, because his BMI is too low, because he/she isn’t eating enough… then it is a great idea to do a trial of cyproheptadine. It is safe, and the only real side effect that you would need to watch out for (and warn them about), is that some kids (not many… maybe 5 kids ever for me in 25 years) have emotional side effects from the serotonin antagonism. In these kids, if you explain this is rare but warn them to watch out for it… if it is an issue for them they will say on day 1 or 2, “I hate that pill, it makes me feel crazy and I don’t want to take it”. These kids are not uncertain that they don’t like it, and that it isn’t right for them. Of course, listen to them. I suspect that if you didn’t warn them, they might just think they were having bad days building up until things got pretty bad. But if you warn them ahead of time, it is no problem just to stop after 1-2 days and then they feel fine again the next day. Side note; don’t try it again in these kids.
If you were going to try it… I would see them in clinic and give education, PLOT ht/wt/BMI on a appropriate peds growth chart an start them on 4mg Qam. I would also explain that the medication isn’t going to do the work for them, it will only make eating easier for these kids, not make them ravenous usually. THEY still have to do the job of eating.
I would have them call in 1 week with an update (just to make sure that they didn’t miss a mood issue), and then see them monthly to plot the ht/wt/BMI along the curve.
Success would be: increasing weight starting first month, then translated into increasing height as well, over the next few months (IF their height was being affected by their lack of intake).
Regardless, a kid with a BMI under the curve will not have enough energy in them to play, learn, and grow.. and they will not be making enough neurotransmitters, etc. So, if your patient has FTT with a BMI under the curve… even if you only bring his BMI onto the curve without significantly changing his/her height yet, you will see a big change in them academically, in play, in social settings, in mood, in behavior, etc.
It also goes without saying, that if what a patient has is short stature or is falling on the curve height wise, but NOT weight wise… then this is NOT due to lack of calories. And this is not the medication to help with that.
If you have a kid like the above with normal weight/BMI, but falling on the height curve then you need to go through the long list of possible medical causes for this (heart concerns like ASD, renal disease, celiac, etc all need to be checked off and ruled out before thinking about anything else).
Clearly I do not know how to answer questions succinctly…… there is just so much I want to say to make sure that your (and everyone’s) pediatric patients are helped and treated safely.
I could also continue to go on and on about the long list of reasons for a kid to have FTT or how to come at weight/height concerns, but at least for tonight I hope that I have given you enough info for you to help your patient be willing to eat more.
Warmly,
Cynthia
Anne
I would strongly counsel against giving peptides/hormones in him unless you are at least sure that this is not
-constitutional growth delay (which is what I would guess it is with growth plate/bone age being behind. This is actually good news which means that he will likely grow two years longer than expected for age. Meaning you shouldn’t really judge his height by his chronological age)
nor
-he just needs to gain weight so he can grow in height (which is what I would guess could be going on.. since given cyproheptadine by doc.). Another warning sign you gave that this lack of height could just be about calories is that he LOST weight. A normal/healthy child never looses weight. So, if losing weight… you cannot assess what he can do growth wise and he certainly doesn’t need more GH released. He needs more food.
other things that could cause this kind of growth delay…
-celiac disease
or
-just supposed to be that way (10th percentile means … out of 100 healthy kids that age, 10 kids are shorter than him. Meaning… NORMAL)
I am pretty worried about giving things to a kid, way off label for something that could absolutely be normal. Or that if could just be that he is hungry. I would make sure a good general pediatrician is he one primarily managing this kid.
If you wanted more specific thoughts about what could be needed for support in this young man, just seeing his growth chart (his plotted ht/wt/BMI for at least the last 5 years or so.) would most likely be enough that I could answer this.
Can you get this and share it here?Thanks Anne
Cynthia
PS when other people presented cases in which I asked for growth chart data… they often come back with just data points.
In peds the data points 100% need to be assessed while plotted on the growth curve. Since you are trying to evaluate something like weight gain or height against a moving target (the expected trajectory for their age and sex, etc).
So without the data plotted… almost useless.Tim-
How exciting.
Your assessment above sounds “right on” to me. And, of course, you now know that you are correct …… you nailed it, since she is responding to Ketamine as hoped.
I also, REALLY REALLY love the responses we get in the appropriate child/teen/and adult with IV ketamine (also done as a 6-8 treatment course. With an initial re-eval at around 4 sessions… knowing that if there is absolutely ZERO response yet, they likely do not need any more to know that it wasn’t the correct choice).
We have an almost 100% success rate with the above plan IN THE HANDPICKED patients we have sent for this. Namely, pretty much we only send patients with post-inflammatory medication-resistant depression (post PANDAS, psychiatric Lyme, and CIRS patients, etc). In all of these patients, we would send them for Ketamine treatment like this only AFTER the infectious/inflammatory issues had already been eliminated and addressed (exactly like you did above).
Note here, just like I mentioned in my last post that I feel that IVIG should only need to be done once, IF you have eliminated this trigger. The same goes here for a 6-8 treatment course for Ketamine. If you have handled that initial insult, you likely would not need any more treatments unless retriggered. For example, if 6 mos later the patient had a mild PANDAS flare after an exposure at school, or if a CIRS patient was briefly in a water-damaged building… then they might need a 1-2 treatment “tune-up” with ketamine again to get back to their “good” baseline. However, if one is finding that a patient’s Ketamine treatment course doesn’t hold, or they need ongoing treatments, then I suspect that there is a continued insult which is worth going after.
Make sense?
NICE WORK! That patient is lucky to have you. And, you are lucky to have your wife to whisper in your ear as well.
🙂
Hello Tim, responding about your PANDAS (+) patient question:I have treated over 200 patients (since the early 2000’s) with PANDAS/PANS, and got to work with the “greats” who helped champion an understanding of PANDAS during those early times where no one else believed us. I shared cases with Dr Latimer and went to Georgetown to care for a patient together, spoke with Dr Swedo’s team, and sent countless samples to Dr Cunningham’s lab at the University of Oklahoma while she was doing research that would later become the Cunningham Panel.In the need to be brief, I would like to just highlight to a few things you mentioned in your case:-First, there are several reasonable causes for OCD in your patient….one is PANDAS, but also neurological tick-borne-disease (TBD) absolutely can do this, as could PTSD (from having had PANDAS). And of course there could be an underlying predisposition to OCD (just how they were born)..It will be very important to figure out what cause/form of OCD this is… since the treatment would be way different (Maybe antibiotics/Steroids for PANDAS, but these same steroids would make most of my patients with TBD worse. And while SSRI might be first line treatment for “regular” OCD, it will absolutely fire up and worsen an acutely inflamed brain of someone with active PANDAS).-How to tell the cause (so that you know how to treat)?Find out the story of what the ACTIVE CURRENT symptoms are.It sounds like your patient has had excellent care. And so here I am asking about the “story” of the current symptoms.I added here some of a posting I made on a list-serve I belong to for the AAP (integrative medicine subgroup) in 2017 in case some of what I had to say there in response to another case could be helpful for you to hear (esp since I do not have enough time to type too much more here).***********My prior posting to AAP list-serve.I have treated more than 170 kids with PANDAS over the last 8 – 10 years or so.I will start first with some background about my experience with PANDAS.1) I would ask first:a) if she had had an illness prior to the onset of symptoms- especially maybe 7-10 days prior (as it takes about 7 days for the body to notice the Strep and treat it on its own. In fact, the body will usually treat and resolve Strep without antibiotics, and the REAL reason that we all learned to treat Strep is to prevent this antibody production so as to decrease the risk of rheumatic heart disease)b) Was the change in behavior sudden (like overnight)?c)Is the anxiety/OCD irrational? This is, for me, the best telling sign. An example I’ve seen would be .. a sweet 13 year old girl who goes to a catholic school suddenly having obsessions about violent things that she could do to other people’s genitalia, and her compulsion is to tell her mother about it? Or is a 14 year old boy who loves playing basketball suddenly afraid of dying if he sees or touches a basketball? I also had an 8 year old who suddenly became totally obsessed with knowing everything about Judy Garland.I like to explain it this way:If I had 4 cats run over by buses… I could have a RATIONAL fear of buses. For this, I could go to therapy and work through my fears, and by extinction therapy finally get on a bus again.However, if I had not had cats meeting their demise by said buses, and I was walking down the road, and some antibodies attacked my brain…. I could have a sudden IRRATIONAL deathly fear of buses. For this, therapy would only be able to help me cope with the stress of feeling this way, I could not work through this fear since it is irrational.Make sense?2)As far as labs go, I like it when a throat swab, or a serum lab is positive… as this helps me believe that I might be thinking the correct possible diagnosis. However, as we discussed above, the throat swabs likely won’t be positive after 7 days…and the serum labs are not in my experience related to how severe of an infection the child had. (So for this reason I don’t follow these serum labs once I have the diagnosis -I use clinical stories after initial diagnosis). I find that a positive is indicative that this may be PANDAS, but a negative doesn’t mean that it isn’t PANDAS.3)Treatment for me is simple if you use this over-riding thought process:a)Get the strep out of the child(of course treat the current infection, and if recurrent, then discussion of removal of the tonsils is warranted. I should also note briefly here, that I do get positive swabs from the gums at times – representing I believe oral colonization.. In this case I use a course of chlorhexidine to rinse and spit for a few weeks or a silver tooth paste that I have found effective to eradicate this.)b)Get the strep out of the family, EVERY member. Here I am especially looking for asymptomatic carriage in tonsils or gums (testing by throat culture and gum rapid test.) My goal here is to decrease the risk of repeated exposure. I think that not thinking of this is the leading cause of chronic PANDAS, since repeated exposure causes continual antibody production in the child, therefore continued PANDAS symptoms. Also, do not forget to think about best friends and the like, if all family members are “clean”.c)Lastly, we need to get the child’s immune system to calm down.In my experience, if you do nothing in this arena, but you DO take care of stopping the repeated exposure…. then there is a gentle decline in symptoms over the next 3 months. The MUST here, is to stop repeated exposure.When I want to help confirm the diagnosis of PANDAS, and quickly decrease symptoms I will often do 5 days of prednisone at 15mg BID for 5 days. I feel “safe” about this dose, since it is what every kid with asthma who ends up in the ER gets (at least)… and they don’t seem to have long term effects due to this.I find that some kids have 2 days of worsening symptoms before improvement, while some are 50% back to themselves by the next day. This improvement helps me reassure the parents that their child isn’t crazy, since mental illness is not treated with steroids. Only inflammation and immune issues are effectively treated with steroids.If I see an effect here with steroids, I feel confident that I was correct in my diagnosis.I also use longer term doses of more gentle anti-inflammatories (outside of the scope here).Side note about IVIG, I hardly EVER have to use this when I follow the above path.And if I am even considering it – I have to be 100% (100% absolutely sure) that they will not be immediately exposed again. I do this by having walked long enough with the family to know for sure that the parents (or the child’s own tonsils) are not chronically a source of strep exposure.I am not sure that most people are clear about why IVIG works for things like PANDAS and other autoimmune disorders. My understanding and experience is that when the plethora of IgG floods the system it says to the immune system, “I’ve got this, you can rest for awhile”. In this way, the child stops making its own antibodies for a while. Think of it as pushing a “reset” button. This is why we use it for things like ITP and Kawasaki Syndrome. This means that….unless re-exposed to strep… they will stop making antibodies against strep. This last part, about not being re-exposed to strep is the most important part. If they get immediately re-exposed by their mother when she kisses the child goodnight, then these antibodies are made again, and the cost, effort and risk of IVIG is for not.In this way, for me, IVIG is a ONE TIME treatment. If you hear about a child needing repeated IVIG, they have missed the IMPORTANT step above about evaluating the family.Like I said, I almost NEVER need IVIG any more, and I have only done 2 courses in the last 3-4 years or so. I do have to give a shout out here to EVERGREEN HOSPITAL in Kirkland, WA… who even 8 years ago, allowed me to create a protocol for admission for IVIG for these kids. This was WAY ahead of the curve. “THANK YOU EVERGREEN”.(I should note here too, that when IVIG is used for an immune deficiency, its function is different. Here, the IgG are used for passive immunity, and will need to be resupplied about every month or so).Lastly in this section, I will speak to plasmapheresis. With one of my first patients with PANDAS years and years ago, I flew out with the patient to Georgetown and with the help of Dr Beth Latimer, had this procedure done. Pls note, this requires an ICU stay (or did then), and it is an arduous experience and I wouldn’t do it again. Unfortunately in this case, her grandmother flew out to see the family and re-exposed the child. Since the child was antibody free after the procedure, and she was then exposed to strep, she made TONS of strep antibodies and became much worse than before. I understand that this is only an “n” of one, and that Dr Latimer and others have good success at times. I am only sharing my experience.And so, this leads us to your case:For her, if the questions I asked above at the beginning show the correct timing to an illness, and were sudden and irrational in substance, I personally would consider a treatment trial of Augmentin (appropriately dosed for size, etc) for 10 days and see what happened.Of course, you would need to weigh the risk of inappropriate use of antibiotics for 10 days with the risk of missing the chance to help this IF the diagnosis is PANDAS.If I am going to treat, I also use boswellia, curcumin or Ibuprofen for the same amount of time.If this works, but not enough…. I consider the 5 days of prednisone, again weighing the risks of treating vs not treating.Or if, I have a strong suspicion that it IS PANDAS but the antibiotics didn’t help, I consider the steroid trial.On the other hand, if my suspicion was low and the antibiotic trial didn’t work, I would not usually consider using steroids. In this case, I would step back and think about other more standard causes and treatment modalities for anxiety and OCD.********************This is me again in real-time Tim……I also recommend that you ask the patient, what is it that most affects her life that she wants help with first.I say this since a handful of symptoms you mentioned I think are likely not directly related (like PANDAS and PMS, etc).If you have heard me speak, or have read any of my prior posts, you know that I like to keep things simple (especially with tough and complex cases); and tease things out one issue at time, trying one intervention at a time.I do this primarily, because … this way, every intervention can be seen (used as) a diagnostic tool as well (try steroids for a few days thinking that it will help PANDAS. And if it does… then you at least know that there is a component of PANDAS, etc).So my recommendation for your patient is to ask what is currently causing them the most “lack of joy”.And then, go after that.And if OCD is the answer, then I would use my info above to try to sort out “what kind” of OCD (again as discussed above).The fact that IVIG worked some, but “wore off” makes me think that there was an ongoing strep exposure (at least during the time of IVIG).Having said that…. again, your patient sounds to have had excellent care… and so it is possible that much of what she suffers from now …. is no longer PANDAS related.If instead, “fatigue with soccer” and “PMS” are now her biggest symptoms, then the PANDAS dx (etc) is likely throwing you off (and making things seem more complex than it has to be). In this case, I would tease out about if symptoms have been very long standing (and if she hasn’t had adequate TBD treatment, etc), or if the symptoms were more recent (like post-CoVid, etc). And then, I would do appropriate treatment trials depending on what seems indicated.*side note here, many of my PANDAS/PANS patients also had TBD. And in my experience PANDAS needs to be treated first. For the most part, people can keep going day to day with joint pain, fatigue and brain fog, a lot better than they can go on being a school age girl telling their mother hundreds of times a day what horrible things they are thinking of doing to their father’s genitalia (see example above).I hope that hearing some of my thoughts behind addressing PANDAS in kids might help your thinking in some way.Warmly,CynthiaTraci –
Sorry again about my delay in response.
About rectal butyrate…..
If you heard me speak at PWC 2023, then you heard me say that there had been a very recent change where the board of pharmacy said that butyrate couldn’t be the “primary” ingredient. As such…. we needed to have things added to it to get around this.
The pharmacy I use for this (Integrity Pharmacy) , worked me with to get some things added that would work. See attached order form that Amy (the helpful pharmacist I worked with) got set up for us.
Here is the info she gave me about pricing (as of Aug 2023)
Pricing is below. It does not matter which API is selected or which strength is selected.Enema1800mL – $1203600mL – $180Suppositories30 – $7560 – $13290 – $198All prescriptions include free overnight shipping to 46 states (which they ship to).***************As for who to not use in (the second part of your question):I guess before I would spend that much money I would see if they at least tolerated oral butyrate first.Almost everyone I know tolerates it, with the exception that some people with significant dysbiosis or UC/Crohn’s often have a hard time tolerating treatments like this (SCFA/prebiotics) initially until some of the “unwanted” microbiota is beat back a bit.And of course, the best way to have butyrate there (in the colon) is to have a happy microbiome making the butyrate that you need.And so, I feel like it is worth mentioning that this isn’t a “forever” treatment, but instead a nice way to help set up a more ideal microbiome.*************I hope this helps.CynthiaSorry about the delayed (and now brief ) response… cold and flu season and now Mastermind 10 have kept me busy (I just arrived home late last night actually)
I will reply more fully soon. But I felt like I couldn’t wait to remind you that it can be life threatening to add a GLP-1 agonist to someone with DM-1 on insulin. Since low glucose is much more dangerous than high glucose acutely.
And, of course, the addition of GLP-1 agonists could/will help reduce the need for the same amount of insulin. Meaning that they could be thrown into life-threatening hypoglycemia.So, unless you, and that patient are super savvy, I would not recommend starting this. Although I do know that some people do so safely, and with good results( see above posts). I am simply wanting to make sure to recommend doing only what is within your scope/skill set. You know, I always feel the need to be the one to mention… “please be careful” (it is the pediatrician in me).
In my patient, she had already come off of insulin (which was just being started) before I personally started the semaglutide.
I will reply to the rest of the case/questions soon…
I just wanted to make sure that I was super clear about the above before that (for safety reasons).
again sorry for the delay,
Cynthia
Hello Jan-
I am happy to give some of my thoughts here.
And “yes sorry”, that I am unable to take consults of patients like this. I am just frankly too busy, have a crazy wait list, and… really my clinic/care is all about long-term relationships. And in peds, this would be very hard to do from another state.
And “yes sorry”, again… if you were one of the docs who also called recently asking if I was at least available for consultation. It is true, that I used to be able to be hired to consult with docs on their patients.. lately I am just too busy for this either. This is why my staff recommended that you try posting it here on SSRP’s discussion board. This is an amazing resource that the SSRP offers, which is monitored by the staff, faculty, fellows, and other members with a large breadth of specialties. Since I cannot take on consults at this time, at least the info I give can be seen by others who might call later with similar questions.
I wasn’t near a computer when I looked at your info, so please see my attached scanned notes (both little notes along the sides of your history info, and my punchlines at the end).
If you are able to get his growth chart for me… then I would be able to help a little more. Peds Pearl #1: I (a pediatrician) cannot really know how to answer anything in a growing kid until I see their growth chart. Since, if the curve is normal, I would give quite different answers a lot of the time than I would if it was abnormal.
Also, you might be shocked (I am not sure) about my advice to liberalize his diet. Peds Pearl #2: Kids absolutely hit a “pill count fatigue” and “treatment fatigue”. The course of Crohn’s is a marathon not a sprint … and so, use your “take this”, “do this” tokens wisely.
In kids, it isn’t “do it perfectly”… it is “do it well enough” that they are doing ok socially too. They look to you for hearing “I am broken” “I am sick”, or “I am good at healing”. So also, market to them what you give them as “This cool peptide helps your gut close it’s lining so that your cool body can heal itself like it already knows how to do”. We are lucky…. for many things in kids… if we simply give them enough of what they need, and then get out of the way.. they heal. I can still hear my newborn nursery attending telling me as a first-year peds resident about clavicle fractures in newborns….. “If the two ends are in the same room, they will heal well”. Kids are awesome like this! It is part of what makes treating them so rewarding.
But there are some things that you do HAVE to be careful of in kids. And here is my Peds Pearl #3: At his age (13 y/o), he is looking to his peers to know “who he is” in the world. And, so during this time…. being NOT different is very important. Not just for how he feels about himself, but actually at this age also for his understanding of “who he is”. This self-understanding of ourselves as human beings gets laid down at this time… and we drag it around with us for the rest of our lives. So, pls pls pls make him “weird” (read here “different” from his peers) as little as possible, and ONLY when really necessary. So, pls do make him wear a sign “Pls do not feed me sugar, dairy, X, Y, Z….. etc” when he goes to school and birthday parties, etc. This is where you pick only the things that REALLY matter towards the primary current goal of getting him into remission (see my attached notes). Make sense?
I think that your primary goals here are:
Crohn’s remission ASAP, so that he can thrive growth-wise (while his growth plates are open), that he has a sense of himself as “not broken”, and he can remain in school as much as possible. And of course, no soiling at school etc (which is a common issue with Crohn’s and the fear around this).
This ASAP part above will make me have much more tolerance for aggressive standard-of-care treatments than I might in an adult. And is the basis for my recommendation to likely let the GI team do what they have to to get him into remission now. And then you help “clean up” things later.
Pls see my attached notes… and let me know if you have specific questions.
Warmly
Cynthia
PS: If you needed another reason to do what it takes to get him into remission ASAP despite the “treatment costs” is that something like 25-30% of all kids with Crohn’s will require surgical resection by adulthood. This means… “quiet things ASAP”. Which again, is often while I stay out of the way (offer support only mostly) until IBD is in remission in kids.
It is hard to know how to answer this question since peptides aren’t “one thing”, right?
It is a large group of signaling agents which include everything from insulin, to TA1 (and a lot in between). These all have very different functions, actions, and indications, etc.
As such, labs for one indication (insulin for DM e.g.) would be very different from another one (TA1 for Lupus for example).
My advice is, if you are new to this amazing group of treatment options… that you pick one peptide at a time to get to know.
Read about indications, dosing, side effects, contraindications, expected results, and labs to be followed.
Then try it out, and learn from using it.And then, pick another one… and do the same.
For me, the above plan was the best way to successfully (and safely) start using peptides.
And, as you do the above… it will be much easier for those of us who have already “played with” the peptide you are working on to answer questions that you might have, or help you avoid the pit falls that we might have learned from.
Warmly,
Cynthia
This is the same answer I will give here, as the question about what labs to get before giving peptides.
“peptides” are a large group of biologically active items that can be given…everything from insulin to TA-1, and everything in between. As such, it is hard to say what kind of changes are seen in autoimmune disorders as a group.
It would depend both on the illness being treated, and the peptides being used.
On the whole, I get my patients with various autoimmune disorders “better” a lot easier adding peptides into my treatment options.
TA-1 (for immune modulation), and larazotode (for ending the “stoking” of the common immune fire of increased gut permeability) alone have made my job a lot easier (and my patients a lot better).
If you had more specifics, it would be easier to know how to more fully answer your question.
Cynthia
