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Hendrixt Show full post »
Hendrixt
deenl wrote:
My son was misdiagnosed as being on the spectrum when he was ill as his withdrawal and stress mimicked some ASD symptoms. It caused us endless grief as they focused on ASD instead of FOOD. Like co-morbid mental disorders, and educational conditions are probably best assessed at a minimum 6 months after full WR to avoid false positives.

Warm wishes,

hi Daneel-  A couple of people have helpfully pointed out the possibility of ASD and I wasn’t completely ruling anything else at the moment but I have the same approach is you; at the moment she is only just weight recovered. The CAHMS therapist  is already talking about ED as though it’s  past history and saying that her current anxiety maybe just what was existing before she got ED or it’s something new that’s  come along but I am resisting going down that path and I am committed to making sure we keep up with the food plan and treat the ED for at least the next six months then we can look at other issues
D
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Hendrixt
teecee wrote:

That’s really good news. Try to deal with one person...the one who is supportive and is the most understanding of the situation. 

If they are able to provide a member of support staff it will be to deliver the core subjects only...maths/ English/ science but keep asking for it. 



they’re going to apply to the local authority for home tuition so I don’t think it’ll be somebody from the school itself, even so it’s all a probably only going to be one or two hours a day but it’s better than nothing which is what she’s getting at the moment . The other spanner in the works at the moment is that CAHMS have told them that D is actually fit enough to attend school based on the fact that she is weight  recovered!! ( she has only been weight  recovered  for a few weeks)
 
It’s only two or three weeks ago that the therapist got an urgent appointment with the psychiatrist when Ds anxiety levels shot up through stress at school and the psychiatrist prescribed medication for anxiety and low mood - it’s just a really puzzling  decision. Luckily enough the school  are supporting us despite the CAHMS advice and have concluded themselves, after listening to us explain that weight restored doesn’t mean recovered, that she is not well enough to attend school, who needs enemies  when you’ve got CAHMS. The school counsellor  has said that she will provide the evidence that D is not well enough to attend school thereby overriding the CAHMS  therapist 
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teecee

That’s a shame as they’ve missed a trick in reintegrating her back by utilising a teacher or member of staff she trusts. Someone from the LA will provide tuition but not that personal touch. 

CAMHS were more or less the same here in talking about ED in the past tense and suggesting ASD etc to us. We went for all the tests...negative. Why do they look for something else??? It’s part of the ED I a lot of cases in my opinion. 

😂 absolutely who needs enemies! Good job we’ve got this forum!!

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teecee
Also if you’re home nursing consider applying for a carers allowance? You may be able to get someone in quicker than school can???
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atdt31_US
Hi -- I apologize I have not read all of your posts or even all of this thread, but I have seen several of your posts about school refusal so thought I would chime in with some food for thought.  Sorry if this duplicates info others have posted, I am just able to be on for a short stretches these days so hard to keep up with all the posts.

If you have not heard of PANDAS/PANS (p/p), you might want to do some research to see if it fits.  Here are some disorganized thoughts to get you started:
1.  "they" (some parts of the medical community) now think that p/p effects as many as 1 in 200 kids.
2.  generally, p/p is an autoimmune response to infection (strep is well-studied and many believe other infections can also start the aberrant immune response but perhaps only after an initial strep started it - still being researched and studied) .... anyway, body gets infection, body fights infection by attacking the infection.  In p/p victims, the body gets mixed up (several theories for why I won't go into in this post) and starts attacking the basal ganglia, a defined area of the brain.  Brain inflammation (encephalitis) results, which can cause a wide variety of psychiatric and motor symptoms
3.  There are two "major" symptoms, one of which is necessary for diagnosis, along with a multitude of potential "minor" symptoms, I think two of which are necessary for diagnosis.  One of the major symptoms is eating restriction.  School refusal is a minor symptom.  Most kids who are diagnosed have at five or more of the minor symptoms.
4.  One of the hallmarks of p/p is a sudden onset of the neuropsychiatric symptoms --- but there are times when they are more slowly realized
5.  P/P is a diagnosis of exclusion ... there is no one test that will say "this is p/p" ... but there are things that can be done to rule it in or out.  And they are quick and for the most part cheap.
6.  If you see THESE things in your kid, especially if they have abruptly appeared or become greatly exaggerated over a short time, you might want to read more about p/o:
a.  OCD (can be stuff like washing hands too much; can be intrusive thoughts you don't see)
b.  Eating restriction (actually binging can also, but more rarely, be the presentation) -- harder to distinguish from ED in older kids, but when a three year old suddenly restricts, p/p should be thought of (20% of p/p cases involve eating issues)
c.  Urinary frequency or accidents in a person who otherwise had no such issues. (90% have it ... but my kid did not) -- if your kid has this, they say p/p must be further investigated
d.  sleep problems
e.  handwriting deterioration -- google this.  the differences in kids pre-p/p flare and in flare are astounding - an 11 year old will draw a picture of a castle and it is great ... two weeks later they start a flare (brain inflammation) and it looks like a two year old is drawing ... six weeks later after antibiotics or other treatments and it goes back to a great drawing.  Again, if your kid had good penmanship and suddenly it is very different, p/p must be further investigated
f.  behavioral regression (baby talk; separation anxiety like a toddler.. which can be a "reason" for school refusal; tantrums that had been outgrown return).  the separation anxiety can be from a parent but also from the house and actually even from one area of the house (sometimes their own room)
g.  panic .. actually can see it in their eyes ... often with huge pupils and in looking scared and not in control of the panic 
h.  tics 

Generally, if you think p/p fits your kid, you want to see if there is an active infection and if so, treat with antibiotics (often an extended course).  Many doctors who look at a chronology and rule p/p in will give antibiotics diagnostically ... like 14-30 days of amoxicillin to see if the symptoms lessen.  Often they all but disappear just with the antibiotic.  It is truly remarkable.   Other doctors suggest a  diagnostic course of 24/7 ibuprofen (they had my kid on 200 mg three times per day ... but that was not at a time of flare so I don't know if that would have been initial dosing).  The idea being the ibuprofen reduces the swelling in the basal ganglia... again, for some people it helps enough to suggest the symptoms are in fact from encephalitis.  Steroids can also be used diagnostically.  THEN if p/p still seems to be in the differential, you keep going from there.  EDITING TO ADD:  I am absolutely not suggesting you try dosing with antibiotic you might have at home, or ibuprofen, on your own .... please only do so with a doctor's guidance. 

I found that the best way to get introduced to p/p was to watch youtube presentations ... doctors at conferences presenting to other doctors and/or parents.  If you just want a taste to see if you think this could apply (and I by far did not set out all the situations where a parent should look into p/p), I would go to youtube and put in Swedo 2019 Saskatoon -- Susan Swedo is the pioneering physician who first identified that strep is resulting in the brain changes presenting in these ways (you can sort of think of it as rheumatic fever of the brain, rather than the heart).... she has tons of video but that one is pretty recent and I would not bother with anything before 2019 since there are so many to choose from .. this Saskatoon one is about 50 minutes and gives an overview.  The other presenter I like a lot is Miroslav Kovacevic  -- youtube his name and find a 2019 video .. again usually about 50 minutes.  He has one from about 5 months ago where he presented to an autism group.  

You will find a lot of controversy about p/p and if it really exists.  But I think the controversy is what should it be called and is it on a spectrum with something else or is it a separate thing.  There is really no denying that something is happening with these kids, and there is absolutely no denying that treating them for p/p has dramatic results that are not seen with similar treatment in kids with similar symptoms when encephalitis is not at play.  So I would encourage you to not get bogged down in the controversy ... take a look and see if your kid fits and if so, post back and we can help you get to the right medical person to pursue it with.  Some of these kids (mine included) live in a chronic smoldering flare for years bc doctors don't yet connect the dots very quickly ... but like I said, with eating restriction and school refusal/panic the way you have described, it seems like maybe watching two hours of video if you can fit it in will be useful to help you decide if you should look at p/p further or not. 

Wishing you well!!  Also, I have to run so not going to proof this very well. ... sorry.

editing to add:  just realized you are UK -- there will be 2019 UK talks by Swede on youtube and you guys have a big push right now to educate doctors on p/p ... but to be honest I'd still look at the videos I put up top .. but if you think p/p a maybe for you, you have at least a couple of doctors who are really keen to pick up the p/p ball and start treating it in the UK.
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
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Hendrixt
teecee wrote:
Also if you’re home nursing consider applying for a carers allowance? You may be able to get someone in quicker than school can???


Is it not means tested 
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Hendrixt
teecee wrote:

That’s a shame as they’ve missed a trick in reintegrating her back by utilising a teacher or member of staff she trusts. Someone from the LA will provide tuition but not that personal touch. 

CAMHS were more or less the same here in talking about ED in the past tense and suggesting ASD etc to us. We went for all the tests...negative. Why do they look for something else??? It’s part of the ED I a lot of cases in my opinion. 

😂 absolutely who needs enemies! Good job we’ve got this forum!!



Yes thank god for this site - I agree
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Hendrixt
atdt31_US wrote:
Hi -- I apologize I have not read all of your posts or even all of this thread, but I have seen several of your posts about school refusal so thought I would chime in with some food for thought.  Sorry if this duplicates info others have posted, I am just able to be on for a short stretches these days so hard to keep up with all the posts.

If you have not heard of PANDAS/PANS (p/p), you might want to do some research to see if it fits.  Here are some disorganized thoughts to get you started:
1.  "they" (some parts of the medical community) now think that p/p effects as many as 1 in 200 kids.
2.  generally, p/p is an autoimmune response to infection (strep is well-studied and many believe other infections can also start the aberrant immune response but perhaps only after an initial strep started it - still being researched and studied) .... anyway, body gets infection, body fights infection by attacking the infection.  In p/p victims, the body gets mixed up (several theories for why I won't go into in this post) and starts attacking the basal ganglia, a defined area of the brain.  Brain inflammation (encephalitis) results, which can cause a wide variety of psychiatric and motor symptoms
3.  There are two "major" symptoms, one of which is necessary for diagnosis, along with a multitude of potential "minor" symptoms, I think two of which are necessary for diagnosis.  One of the major symptoms is eating restriction.  School refusal is a minor symptom.  Most kids who are diagnosed have at five or more of the minor symptoms.
4.  One of the hallmarks of p/p is a sudden onset of the neuropsychiatric symptoms --- but there are times when they are more slowly realized
5.  P/P is a diagnosis of exclusion ... there is no one test that will say "this is p/p" ... but there are things that can be done to rule it in or out.  And they are quick and for the most part cheap.
6.  If you see THESE things in your kid, especially if they have abruptly appeared or become greatly exaggerated over a short time, you might want to read more about p/o:
a.  OCD (can be stuff like washing hands too much; can be intrusive thoughts you don't see)
b.  Eating restriction (actually binging can also, but more rarely, be the presentation) -- harder to distinguish from ED in older kids, but when a three year old suddenly restricts, p/p should be thought of (20% of p/p cases involve eating issues)
c.  Urinary frequency or accidents in a person who otherwise had no such issues. (90% have it ... but my kid did not) -- if your kid has this, they say p/p must be further investigated
d.  sleep problems
e.  handwriting deterioration -- google this.  the differences in kids pre-p/p flare and in flare are astounding - an 11 year old will draw a picture of a castle and it is great ... two weeks later they start a flare (brain inflammation) and it looks like a two year old is drawing ... six weeks later after antibiotics or other treatments and it goes back to a great drawing.  Again, if your kid had good penmanship and suddenly it is very different, p/p must be further investigated
f.  behavioral regression (baby talk; separation anxiety like a toddler.. which can be a "reason" for school refusal; tantrums that had been outgrown return).  the separation anxiety can be from a parent but also from the house and actually even from one area of the house (sometimes their own room)
g.  panic .. actually can see it in their eyes ... often with huge pupils and in looking scared and not in control of the panic 
h.  tics 

Generally, if you think p/p fits your kid, you want to see if there is an active infection and if so, treat with antibiotics (often an extended course).  Many doctors who look at a chronology and rule p/p in will give antibiotics diagnostically ... like 14-30 days of amoxicillin to see if the symptoms lessen.  Often they all but disappear just with the antibiotic.  It is truly remarkable.   Other doctors suggest a  diagnostic course of 24/7 ibuprofen (they had my kid on 200 mg three times per day ... but that was not at a time of flare so I don't know if that would have been initial dosing).  The idea being the ibuprofen reduces the swelling in the basal ganglia... again, for some people it helps enough to suggest the symptoms are in fact from encephalitis.  Steroids can also be used diagnostically.  THEN if p/p still seems to be in the differential, you keep going from there.  EDITING TO ADD:  I am absolutely not suggesting you try dosing with antibiotic you might have at home, or ibuprofen, on your own .... please only do so with a doctor's guidance. 

I found that the best way to get introduced to p/p was to watch youtube presentations ... doctors at conferences presenting to other doctors and/or parents.  If you just want a taste to see if you think this could apply (and I by far did not set out all the situations where a parent should look into p/p), I would go to youtube and put in Swedo 2019 Saskatoon -- Susan Swedo is the pioneering physician who first identified that strep is resulting in the brain changes presenting in these ways (you can sort of think of it as rheumatic fever of the brain, rather than the heart).... she has tons of video but that one is pretty recent and I would not bother with anything before 2019 since there are so many to choose from .. this Saskatoon one is about 50 minutes and gives an overview.  The other presenter I like a lot is Miroslav Kovacevic  -- youtube his name and find a 2019 video .. again usually about 50 minutes.  He has one from about 5 months ago where he presented to an autism group.  

You will find a lot of controversy about p/p and if it really exists.  But I think the controversy is what should it be called and is it on a spectrum with something else or is it a separate thing.  There is really no denying that something is happening with these kids, and there is absolutely no denying that treating them for p/p has dramatic results that are not seen with similar treatment in kids with similar symptoms when encephalitis is not at play.  So I would encourage you to not get bogged down in the controversy ... take a look and see if your kid fits and if so, post back and we can help you get to the right medical person to pursue it with.  Some of these kids (mine included) live in a chronic smoldering flare for years bc doctors don't yet connect the dots very quickly ... but like I said, with eating restriction and school refusal/panic the way you have described, it seems like maybe watching two hours of video if you can fit it in will be useful to help you decide if you should look at p/p further or not. 

Wishing you well!!  Also, I have to run so not going to proof this very well. ... sorry.

editing to add:  just realized you are UK -- there will be 2019 UK talks by Swede on youtube and you guys have a big push right now to educate doctors on p/p ... but to be honest I'd still look at the videos I put up top .. but if you think p/p a maybe for you, you have at least a couple of doctors who are really keen to pick up the p/p ball and start treating it in the UK.


Thanks for going to the trouble of posting this information 
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Scarlett81
Hendrixt,
Sounds like they have agreed to a good initial plan, well done for all the research you did!
I'd steer clear of ASD assessment for now, as anxiety behaviours can look very similar to ASD and a wrong diagnosis would be unhelpful to her.  Focus on getting the home tuition set up, reducing the anxiety and treating the ED.  You're doing a great job and this is a great result.  She's lucky to have you fighting her corner!
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Hendrixt
Scarlett81 wrote:
Hendrixt,
Sounds like they have agreed to a good initial plan, well done for all the research you did!
I'd steer clear of ASD assessment for now, as anxiety behaviours can look very similar to ASD and a wrong diagnosis would be unhelpful to her.  Focus on getting the home tuition set up, reducing the anxiety and treating the ED.  You're doing a great job and this is a great result.  She's lucky to have you fighting her corner!


Thanks Scarlett. They sent emailed me the application to the LA so I could check it before it goes off. They've actually just cut pasted a load of text from documents and letters I have sent and then put the head's name at the bottom. Things is with ED nobody can articulate it better than a parent. I'm not considering other co-morbid conditions until I'm sure she's been at weight restored (state and weight) for a good few months. Interestingly, the school nurse service have offered to plot my D's growth chart for me from birth to 21 using their data. They were really helpful. CAHMs didn't seem interested in doing this. CAHMS are also trying to pull out of weighing and we are just not ready to do that yet. The school nurses have said they are happy to weigh her and they will get some advice from CAHMs as to how to do it thereputically (she is on blind weighing at the moment)
 
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ValentinaGermania
It is great that you get so much help from that side! Go and hug that school nurse, she seems to be great!
"Things is with ED nobody can articulate it better than a parent." So true!
Keep feeding. There is light at the end of the tunnel.
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Hendrixt
tina72 wrote:
It is great that you get so much help from that side! Go and hug that school nurse, she seems to be great!
"Things is with ED nobody can articulate it better than a parent." So true!


Thanks Tina. Amazing that school have been so supportive and fought our corner. At a meeting the CAHMs rep said D is fully weight recovered therefore 'no reason why she can't be in school' also ' she needs less support, not more'  and 'needs to take more responsibility' . No mention of her only seeing a psyche only 3 weeks ago and being diagnosed with 'extreme anxiety' and prescribed sertraline. Thank god the rest of the meeting listened to us and took the opposing view.
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sandie
Hi Hendrix, I find it very strange that cahms were not interested in plotting your D’s growth curve. That is essential information. Cahms here do it electronically and I gave them the very limited earlier weight and height data so they could add to the graph ( not that they paid much heed to it until recently!!!) 

great that school nurses being helpful. Xx
Courage is not the absence of despair; it is rather the capacity to move ahead in spite of despair
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Hendrixt
sandie wrote:
Hi Hendrix, I find it very strange that cahms were not interested in plotting your D’s growth curve. That is essential information. Cahms here do it electronically and I gave them the very limited earlier weight and height data so they could add to the graph ( not that they paid much heed to it until recently!!!) 

great that school nurses being helpful. Xx


Hi Sandie - they only got a growth chart out when I asked about it - That’s earlier on when I didn’t know much about it. But what they got out was something printed off the Internet which was a generic growth chart, not specific to my D and they just showed me on the growth chart where she probably was, based on the weight that she claimed she was before she started restricting and they’ve never seemed interested in plotting  any other measurements
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