Update and question on aba/trauma? Need help to ask medical questions (for child/teen)- update in op

[matrips]

Update at the bottom of this post.

Asking this for a friend, so please don’t quote.  This is long. A summary of a six year medical process.  She needs help in knowing what questions to ask this week from the new specialists his complex care group arranged for him.

She and her son are seeing a bunch of specialists this week who specialize in rare diseases.  This is after years of going to see local specialists and getting nowhere. What questions should she ask of doctors? She wants help.

background- started 6 years ago as GI issue after a virus.  Couldn’t eat or digest many foods, lost weight, couldn’t gain, couldn’t absorb. Inflammation in throat, stomach and everywhere basically. Allergic to MANY items.  So got tube in stomach, fed through that for years in addition to what he could still eat by mouth.  Alive but worse. Then got a port and went on tcp (the total intravenous feeding), spent close to a year IN a hospital.  He gained weight for the first time.  Pancreas and liver showing problems.  Not absorbing vitamins.  Always inflammation/elevated esophills (?) in his body etc.  but he finally got and stayed (mostly) out of the hospital. Taken off tpn after about 6 months and mostly kept the weight on. Still has the port which gets cleaned out every week.  He can’t take most enzymes because of pork allergies etc. his pancreas is barely working.
 

now a teenager.  New Issues - swelling and inflammation-started showing up in his foot/leg/bone marrow.  Been in a cast on and off for months and months.  Such pain. Diagnosed with rickets. Oncology has seen him- doesn’t confirm or deny cancer.  Want to clean out his marrow. His body doesn’t absorb vitamin D but his doctors not giving liquid or iv D or anything.  Just basic pills like I take.

he’s had so many colonoscopies, endoscopies, blood tests, X-rays, mris, cat scans, genetic testing  etc over the years.  

has a variety of cysts and lumps appearing including on his back.

Finally getting to go to national specialists and a group of doctors that work together with rare diseases. What should she ask?  Appointments are with complex care, genetics, orthopedic, gi, bone health clinic, complex pain clinic, rheumatology, crc lab, developmental pediatrics and immunology.   He has seen these same type of doctors locally, and he’s just getting worse over the years.  His body is just breaking down.

Food allergies- dairy,beef, pork, lamb, beans, gluten, and so much more.  He can eat chicken, most fruit (but nothing with tiny seeds) and most vegetables.

What should she ask?  What should she leave there knowing? They leave town today.  Thank you.  And again, please don’t quote.  She knows I’m asking here.

———update———

They’re not really coming up with new solutions which is really disappointing, and some are conflicting in recommendations with multiple local specialists which is frustrating, but they did have one interesting thought that I wanted your input and experience on.

They are recommending therapy- like aba therapy or trauma release.  They think his body/brain is so stressed and traumatized from years of being sick, that it is hampering things. That his body may be conditioned to react a certain way to food due to stress/trauma. Or may be magnifying pain in his body. They’re not ignoring his almost non-functioning pancreas. But the way they explained it was it could be likely he would need a transplant down the road,but his body is in no shape to survive it. It’s too stressed. 
 

I’m not familiar with aba or trauma release.  Anything you can offer on those?  Are the docs wimping out and blaming the kid for some of the issues?or is this legitimate?  Thanks.  They still have two more days of appointments there.  Three days done so far.  

Edited December 17, 2020 by matrips

[klmama]

Wow, the poor kid has really been through it.  Sounds like a very complex case.  The meat allergies make me wonder if he has tick-borne disease(s).  She may want to ask about testing. FWIW, a friend's medically fragile ds had several tick-borne diseases; he finally had intravenous immunoglobulin treatment, which led to completely recovering from his food allergies and growing a foot in one year. He still has other medical issues, but his life is much better now. There are risks with IVIG treatment, though, and it's not the right choice for everyone.  

[matrips]

14 minutes ago, klmama said:

Wow, the poor kid has really been through it.  Sounds like a very complex case.  The meat allergies make me wonder if he has tick-borne disease(s).  She may want to ask about testing. FWIW, a friend's medically fragile ds had several tick-borne diseases; he finally had intravenous immunoglobulin treatment, which led to completely recovering from his food allergies and growing a foot in one year. He still has other medical issues, but his life is much better now. There are risks with IVIG treatment, though, and it's not the right choice for everyone.  

Yes he has been through a lot, and with such pain. And he’s a super sweet kid who just wants to be able to play and lead a ‘normal’ life. He can’t even go to school. 

Interesting.  I do think he was tested for that a long while back, but I will copy the info from your post for her.  As a young child, he was able to eat almost anything including steak.  Issues started around age 9 after he was sick with something, and just keep increasing.  He has grown taller- he’s about 5’8”and a size 12 shoe.  Very skinny but over 100 pounds.  He was down to 58 pounds as an 11/12 yo, before tpn.  He’s also autistic; high functioning.  And a micro-preemie twin.  

[klmama]

Sending a PM.  

[TechWife]

I’m grateful he’s able to a referral. I’d advise her to think about her who, what where, when, why, how questions. By now she probably has a stack of reports and notes - she could reread those and then write the questions down. She should ask questions of this new set of specialists that she has already asked the others if she is unsure of the relevance or significance of the responses she has received. Questions about the order in which his ailments appeared may be good ones to ask as well - are any of the problems caused by treating other problems.  She can ask  risk/benefit questions about treatments, too. Also she should make sure she understands how these specialists work with her current specialists? Will they become primary? Consulting? When does he need to be back? Any changes in recommendations? What should she look for as a result? One thing you didn’t mention was if he is receiving any therapies - occupational and physical therapy may be helpful if he isn’t already receiving those. Additionally, speech therapists help with eating and that may be helpful if he has developed texture aversions or as muscular or chewing problems. These sometimes arise as a result of being tube fed and they are also problems that are common in people with autism. 

[matrips]

@techwife 

good ideas.  Thanks.  No current therapies.  Tons when he was younger.  No eating/food aversions.  He would eat almost anything if his body would allow it. She kept up on small bits of oral food during his tube feeding so he wouldn’t lose the ability to eat/chew/swallow. If you saw him, he’d look like a ‘normal’ kid on his skateboard or walking his dog (before his boot and now crutches).  Just so many internal issues and pain and bones sticking out due to thinness.

[Tap]

I would want to know if there seemed to be one disorder, or layers of disorders. If the answer is layers of disorders, I would want to know if is there a common root cause for those disorders. One problem we had in getting dd22 diagnosed, was that each specialist, only saw thier one part of the puzzle. The complex cases really do need a team that meets and talks together to help diagnose. If they don't have answers, ask the team where to look next. We followed rabbit trails for a year and saw specialist after specialist. We saw so many doctors who said "I can see something is wrong with her, but I don't know what it is/not my specialty". To that, I would say "if she was your daughter, where would you go next....and then will you put in a referral there". 

Dd22's case was complicated, but we got immensely lucky. She saw a cardiologist as a young teen for fainting at school. 4 years later, he had become a national specialist on POTS. When we went back to see if he had any insight into her new issue (chosen only because he saw her prior) and he was able to diagnose her. He was the only specialist in our area on POTS but was one of probably 15-20 pediatric cardiologists. Had we chose a different cardiologist, she would have likely be left undiagnosed for years.  DD22 has seen 19 specialists trying to get her diagnosed and treat the symptoms before we knew what it was.  She went from being a 3 sport athlete, to being in horrible pain and when she took a shower, she had to take breaks and sit down, because standing in one spot was absolutely exhausting for her. 

For anyone curious...dd22 has POTS, Chronic fatigue, Chronic pain, severe asthma, Ehlers-Danlos, GI issues, Mast Cell activation syndrome. Specialists don't know why they often appear together in people, but the combination is well known. Once we got the POTS diagnosis, it led to the others.  When we were first looking, we were looking at the pain and fatigue issues. We were seeing lots of pain and osteo specialists, physiatrists, physical therapists, chiro etc. They were looking at the pain causing the fatigue, and only seeing them as one connected thing. She had extensive imaging looking for the cause of the pain. Then I got an idea to take her to the cardiologist to just look at the fatigue issue. Separating the two symptoms. That is when we got the POTS diagnosis and that led to the Ehlers-Danlos pain connection. The disorders just needed to be looked at in a different light to be seen. The connection of those two disorders, led us to Mast Cell activation which is known to be comorbid with them. That brought her hives into the mix, which we never realized where part of the picture at all. One of the best things for us, we finding a specialist who understands the combination of her issues. She can treat her, and understand how medications or supplements will make the other issues better or worse. She is a naturopath and a life changer for dd. Of all the specialists (some are heads of thier departments in teaching hospitals) dd saw, her naturopath is the most pivotal in getting positive results for dd! dI guess that is one other thing I would suggest. Is that it doesn't take an alphabet after a name to have the insight to treat a patient and get good results. Sometimes it can be just finding the person who understands the illness who can move the patient in a positive direction. 

 

Edited December 13, 2020 by Tap

[PeterPan]

On the D levels, do they have him on K2? Ironically, it's produced by the gut (which you said got whacked by a virus) and essential for D absorption. Would be nice if that had such a simple solution. People with ASD are very prone (statistically) to gut problems, so it seems like a place to make some headway. I use an unusual amount (400 capsules a day) with my ds and it makes a noticeable difference. 

It's good that they're doing genetics. That's probably where the answers are. I would suggest she push hard on that and maybe do more than what they do even, running the raw data through places they don't and looking for more things they don't. I assume they'll do whole exome, and she can run that raw data through other engines online and see what turns up. (promethease, knowyourgenetics, Joe at Self Decode, etc.) I'm not saying places like J@SD are a great source, but they're something. And she can use those terms like inflammation.

But really, for her sake I hope it turns out to be a syndrome, something they can just say this is what it is and why. Sigh. What a mess. 

[matrips]

@Tap I know they have one day at the end of the week devoted to getting everyone together and reviewing what they learned from the week of appointments and tests etc.  they seem very organized.  It’s the doctors here that seem way out of their league.

[matrips]

@PeterPan  I forget the reason but he can’t take vitamin K.  I know because I’ve mentioned in the past about K and vitamin D to her.  

[Bootsie]

I am sorry that he is dealing with so much and that they have been searching for answers for so long.  I have a child with some complex medical issues, but nothing to that extent.  I found it helpful to look at the medical research the specialists we were seeing were doing.  I didn't understand much of it, but did give me some insights into what types of issues to look were likely to be significant to tell the doctors; It gave me an idea that we weren't alone and that other parents were dealing with similar issues.  It let me know what doctors were working together and what children's hospitals were doing the most research on similar issues. We happened to live in an area with a children's teaching hospital, but the doctor's in the area of specialty really specialized in treating other issues.  I was able to find a handful of doctors at a couple of hospitals who were doing research more in the area of my child's issues.  

I found that some of the specialists were extremely territorial and were not good at considering an array of issues and possible multiple issues occurring at the same time.  It sounds as if there is a multi-specialty team, so I would ask questions about how they coordinate care and work together.  

[J-rap]

Oh wow, they've been through a lot.  I'll just add that it's okay to not have all of their questions in order yet...  Sometimes you have to meet with more people before you even have solid questions.  And that's okay.  BUT, I'd also say, if she's meeting with a variety of specialists, maybe she'll find that she connects with one of them more than others.  It'd be great to have someone who is able to help steer things.  Sometimes you as a patient can kind of choose...  That's the one you start communicating with more, and they take a more active interest in your situation.  That's the one you want on your team.   At least that's been our experience.

[Ottakee]

Lots of good advice above.   

My girls have rare mitochondrial myopathies.....one is the only person known who had the combo of 3 different ones she has.

It took a neurologist who trained under one of the best mito guys to figure it out.

With so much gut stuff, I wonder if they would consider a fecal transplant.   I have read of it helping gut issues and even used in those with autism....who very often have gut issues.

 

[BlsdMama]

6 hours ago, klmama said:

Wow, the poor kid has really been through it.  Sounds like a very complex case.  The meat allergies make me wonder if he has tick-borne disease(s).  She may want to ask about testing. FWIW, a friend's medically fragile ds had several tick-borne diseases; he finally had intravenous immunoglobulin treatment, which led to completely recovering from his food allergies and growing a foot in one year. He still has other medical issues, but his life is much better now. There are risks with IVIG treatment, though, and it's not the right choice for everyone.  

I really thought the exact same thing.  I can't imagine being this teen.

[matrips]

@Ottakeeshe asked about the fecal transplant in the past with his local doctors,but they warned her off with all the risks.  I did suggest she ask these doctors the same questions, and specifically ask about FT again.  Thanks.

[Ottakee]

Just now, matrips said:

@Ottakeeshe asked about the fecal transplant in the past with his local doctors,but they warned her off with all the risks.  I did suggest she ask these doctors the same questions, and specifically ask about FT again.  Thanks.

My daughter had one for cdiff and it was immensely helpful.

[Tap]

One thing I found very, very helpful was this.

I made a list of all her specialists and very brief summary of what the results were. 

It may look like this: 

 

DR X, Rheumatologist, OHSU hospital

1-1-2019

Referral for xxx reason.

Testing: Bone Scan-no abnormalities found

DX: non-specific back pain- cause unknown

TX: Continue NSAID

Referral to Pain specialist Dr Y at OHSU.

I would attach a snippet of the discharge/appointment summary, if there were important information in them.

 

 

I would make a list of just her diagnosis,  and the date and diagnosing doctor.

So it may look like this 

POTS 3- 2016 Dr X

Mast Cell Activation Syndrome 4-2017 DR Y

and on

 

I would make a list of where all of the doctors were seen, what specialty they were, contact information, where testing was done, the dates and the results.

Medications and treatments she was currently using. And the major ones for her condition that we tried/failed. (for instance, dd can't take beta blockers, which are a fist line treatment for her POTS, because she has severe complicated asthma---which makes it contraindicated).

 

I would also make a list of my concerns and questions. This helped the doctors to give me the information I really wanted and to make sure there was enough time for me to address those concerns. 

 

I give a copy to each doctor. In her case I would make a 2 page packet for each, and give them another at each meeting.

 

The reason why I found this helpful. Was so many times, appointments were taken up by the doctor asking me questions like who diagnosed what and when. When various tests were done, etc. SO much time was wasted in me giving them information that was in the chart, but was a few clicks away or recorded in a second computer system. Buy having a super brief summary in my hand, i could refer them there, and they could read/see what was done in a glance instead of a 5 minute conversation to get the same information. 

I tried really, really had to keep the medical information to one page, front and back. The questions were on a single sheet of paper so I could make notes. 

 

[kbutton]

1 hour ago, matrips said:

@Ottakeeshe asked about the fecal transplant in the past with his local doctors,but they warned her off with all the risks.  I did suggest she ask these doctors the same questions, and specifically ask about FT again.  Thanks.

Regarding anything in the past--don't be afraid to go over old territory with new doctors if that territory is not black and white or she doesn't understand, say, why they said he doesn't have xyz when he has really close symptoms. If the new docs revisit it on their own, don't beat a dead horse, just wait for results, but if there is an opportunity to ask about something that a previous doctor was dismissive about out of hand, go for it. 

Quote

I tried really, really had to keep the medical information to one page, front and back. The questions were on a single sheet of paper so I could make notes. 

Summaries are good, and you can keep longer documentation to be brought out as applicable. Some hardcopy but longer stuff on a flash drive. She can always print, scan, and make .pdf files of things that she has only electronically.

She might find (before or after the visit) that an medical app could be helpful. We use Backpack Health for my son's genetic diagnosis, and in his case, it was developed specifically for people with his disorder and related conditions. I think there is a free version for anyone, but it's kind of stripped down. It makes organizing important information really helpful. If he receives a diagnosis, there might be an app specifically developed for optimizing his medical records. 

On geneticists--new stuff comes out every day. She should ask the team how often they look for new information to compare the genetic testing to. They should do that from time to time--it would probably be in batch. For instance, if he turned out to have a VUS (variant of uncertain significance) in a gene that can potentially cause a specific disease, and a VUS is reclassified, they'd probably look for patients with that VUS and revisit their cases. 

Also, geneticists do specialize, so revisiting down the road with this or another team, if nothing specific is found, is worth a try at a later date. I have an acquaintance whose daughter had genetics run in the past for a specific condition, but she's getting an appointment with genetics again as more medical stuff emerges and the picture of what it could be clears up, both for her child and with research related to the possible disorder. I am kind of surprised this was not ruled in or out previously with her history; however, it could be that the genetics were run, but the case was unclear, and her case history will change the interpretation of the results. (Not all changes to DNA cause disease, and if someone has a spontaneous mutation, their specific genetic change is examined in light of all the symptoms vs. someone who has a genetic change that a parent also has, and that parent clearly has the disease, though even that is a bit of an oversimplification.)

[Tanaqui]

1 hour ago, matrips said:

@Ottakeeshe asked about the fecal transplant in the past with his local doctors,but they warned her off with all the risks.  I did suggest she ask these doctors the same questions, and specifically ask about FT again.  Thanks.

 

It is risky, but with everything that's gone on with this poor kid it may be riskier not to, well, risk it.

[sassenach]

Does he have any diagnoses? My first thought was EOE but tbh, this all sounds way above my pay grade. I can't think of any question that the mom probably hasn't thought of.

[matrips]

@sassenach he has many diagnoses, but they are mostly based on symptoms and treating symptoms. For as much as they’re supposed to all work together, they really don’t.  Hoping this team they meet with this week is good and worth it.  She said the flights were 100% packed 😳, many unmasked while they ‘are’, and then another woman gave them attitude because her son had a wheelchair and her mom didn’t.  the boy gave his up, not because she was bitchy, but because he’s a nice kid trying to help out someone’s grandma, and he’s in tons of pain tonight 😞

[TravelingChris]

8 hours ago, matrips said:

@PeterPan  I forget the reason but he can’t take vitamin K.  I know because I’ve mentioned in the past about K and vitamin D to her.  

Probably because of familial risk of blood clots

[matrips]

Just now, TravelingChris said:

Probably because of familial risk of blood clots

I think you’re right.  He does get clots in his port. 

[Carol in Cal.]

Side note:  Has she been in touch with Parents Helping Parents?  It's a networking organization that puts parents of kids with similar rare disorders and/or issues together.  I've heard great things about it.

[matrips]

1 minute ago, Carol in Cal. said:

Side note:  Has she been in touch with Parents Helping Parents?  It's a networking organization that puts parents of kids with similar rare disorders and/or issues together.  I've heard great things about it.

I don’t think so.  I’ll google a link for it and pass it on, thanks.

[TravelingChris]

6 minutes ago, matrips said:

I think you’re right.  He does get clots in his port. 

Then please tell her that if they haven't figured out what his blood clotting reasons are, that is another thing they need to get done there.  

[kbutton]

10 minutes ago, TravelingChris said:

Then please tell her that if they haven't figured out what his blood clotting reasons are, that is another thing they need to get done there.  

I second this. With the advances in genetics and other parts of medicine, I think that they'll find out that not all clotting issues have the same exact risks or best treatments. With more specific diagnoses, they can pinpoint those differences and treatments. 

[TravelingChris]

6 hours ago, BlsdMama said:

I really thought the exact same thing.  I can't imagine being this teen.

Same here. My son twice been bitten by a kind if tick that causes mammal meat allergy..  Fortunately, he didn't get any other disease from that tick but some if the ticks that cause that meat allergy also are carriers if other diseases.   He also has more cell activation  issues so that probably is what is making the allergy worse. Anc it also causes other non meat allergies that come and go  and come again. 

Plus he probably has RA or AS ( I have both and connective tissue autoimmune diseases are sort if hereditary).

Second kid has also had many medical issues including a familial syndrome closely related to Ehllers Danish and also has mast cell issues along with food and food and drug allergies snd she also has Factor V Leiden.

Third kid had juvenile osteoporosis, reactive arthritis as a juvenile,  then issues that still persist as an adult are severe asthma, severe allergies, Raynauds syndrome, and a yet undiagnosed connective tissue autoimmune disease.

Like others, I have found that researching doctors and what they wrote about in did research in has been super helpful 

For myself, I have found a specialist at Tucson Mayo that I want to see and am just waiting for my small fiber neuropathy biopsies result to come in because that is the final piece I need in order to be ready to see him.  And if for some reason I can't see him  ( he is covered by my insurance),,  I have a second choice of doctor though she isn't covered by insurance in Colorado Springs who specializes again in what I need help with and as s consultant doctor to your own doctors at home.

Got my youngest when she had the juvenile osteoporosis, we went to several specialists including a geneticis, who didn't help at all. Then I started looking for specialists in juvenile osteoporosis- and that is how I found the country's and possibly the world's best specialist.  He found that she had a fracture that the radiologist and pediatrician missed and he also diagnosed the juvenile osteoporosis and said she had a variant that is familial and characterized by osteoporosis or osteopenia, increased fractures of certain type of bones, and increased looseness of ligaments.  My older daughter was found to have a very long ligament when she had shoulder surgery as a teen and both girls had issues w subluxation and youngest with  a lot of that plus several dislocations.  I also had problems w it, leading to lots of sprained ankles, issues w knees not being stable.etc.  That doctor gave us lots lof answers and helped dd2 get better by putting her on an anti osteoporosis drug until she reached puberty.

I hope your friend gets good answers for her son.

[redheadmom]

So early this spring my dd was diagnosed with asthma, IBS, and POTS within a few months.  The GI issues were bad with spontaneous vomiting.  

This fall she was diagnosed with Alpga-Gal, the tick borne meat allergy.  However, in addition to mammal meat, she has to avoid all mammal byproducts which are in everything.  Eating meat triggers her anaphylaxis, but by products will trigger her GI issues or asthma.  So she avoids tallow, whey, rennet, gelatin, etc.  Additionally, by products are in lots of health products and medicine.  So we watch for glycerin, lanolin, and magnesium stearate. 

It almost sounds like he has severe allergies and a blood disorder which could cause problems with clotting and his bone marrow. But those should be able to be diagnosed with various blood tests or possibly a bone marrow biopsy. 

[matrips]

Updated in original post

[PeterPan]

On 12/13/2020 at 8:37 AM, matrips said:

I’m not familiar with aba or trauma release.

Ok, on the one hand it does reek of we don't know what to do so we'll blame you. On the other hand, TRE (trauma release exercises) actually are a thing. 

So for the metabolic problems he has, it sounds like they figured out nothing, jack squat. I suggest she take the whole exome results (if they actually ran them) and run them through some sites and see what she can figure out for herself. Something is clearly wrong. 

On the ABA, the irony is ABA typically *increases* stress by increasing demands. Is she having behavior problems??? Sometimes when they say ABA, they mean blanket. So then the person might be trained on Interoception, which could allow him to become more self aware and self advocate. That would be fine. Interoception work would be fine. Frankly, I can't fathom how he's strong enough for TRE, call me crazy.https://www.youtube.com/watch?v=TQBUpMZajv8  This is the system the counselor had me learn. If you've actually had trauma, it can be amazing. The body *does* store trauma, sensory memory from the trauma, etc. and there are ways to release it. HOWEVER if he has an extremely hyperresponsive sensory system (which my dd does, hence mentioning it) it could be exquisitely painful and not the right choice. For those situations a trauma informed counselor would use *other* types/methods. 

So I think they're right to be cautious and wonder if they just got blamed. The whole thing seems weird. It's like when I took my dd to the audiologist at a univ years ago and they said they would refer her for CBT. We're like seriously, CBT might be fine but would you please actually HELP US WITH THE PROBLEM???

I'm sorry they didn't get help. There are doctors called functional medicine doctors and some of them really like to investigate. It seems to me the dc is going to need a combo of genetics and a functional medicine, whole body approach like that. I do *not* think I would begin an ABA program with a dc with health problems, life threatening health problems, unless there's a compelling reason. We must really be missing something in the translation here. My ds has had ABA and I just I don't know I'm missing the logic. But if they want to work on Interoception sure. https://www.kelly-mahler.com/what-is-interoception/ 

I just reread what's going on. Is this dc IN PAIN??? I mean, what gives?? Why are they suggesting ABA for that? Or they're just saying kill time?? Doesn't all this stuff that is going on with him HURT? ABA is typically very stressful and causes it's own trauma. The logic there just complete evades me. I'm not seeing this as a dc who is so active that they are using energy to resist demands. What am I missing? ABA is for compliance, early learning skills, joint attention, a lot of basics. Why are they recommending this??

There are counselors who specialize in pain, right? 

 

 

[PeterPan]

On 12/13/2020 at 8:37 AM, matrips said:

 to react a certain way to food due to stress/trauma.

Food is such an interesting topic. They could food combine, which will ease the strain of digestion. Focus on whole foods. But it still doesn't address the question of what in the world is going on. 

I mean, to me this is like those shows on tv where people have symptoms for 15 years before they finally find a doc who figures it out. 

Edited December 17, 2020 by PeterPan

[matrips]

20 minutes ago, PeterPan said:

Ok, on the one hand it does reek of we don't know what to do so we'll blame you. On the other hand, TRE (trauma release exercises) actually are a thing. 

So for the metabolic problems he has, it sounds like they figured out nothing, jack squat. I suggest she take the whole exome results (if they actually ran them) and run them through some sites and see what she can figure out for herself. Something is clearly wrong. 

On the ABA, the irony is ABA typically *increases* stress by increasing demands. Is she having behavior problems??? Sometimes when they say ABA, they mean blanket. So then the person might be trained on Interoception, which could allow him to become more self aware and self advocate. That would be fine. Interoception work would be fine. Frankly, I can't fathom how he's strong enough for TRE, call me crazy.https://www.youtube.com/watch?v=TQBUpMZajv8  This is the system the counselor had me learn. If you've actually had trauma, it can be amazing. The body *does* store trauma, sensory memory from the trauma, etc. and there are ways to release it. HOWEVER if he has an extremely hyperresponsive sensory system (which my dd does, hence mentioning it) it could be exquisitely painful and not the right choice. For those situations a trauma informed counselor would use *other* types/methods. 

So I think they're right to be cautious and wonder if they just got blamed. The whole thing seems weird. It's like when I took my dd to the audiologist at a univ years ago and they said they would refer her for CBT. We're like seriously, CBT might be fine but would you please actually HELP US WITH THE PROBLEM???

I'm sorry they didn't get help. There are doctors called functional medicine doctors and some of them really like to investigate. It seems to me the dc is going to need a combo of genetics and a functional medicine, whole body approach like that. I do *not* think I would begin an ABA program with a dc with health problems, life threatening health problems, unless there's a compelling reason. We must really be missing something in the translation here. My ds has had ABA and I just I don't know I'm missing the logic. But if they want to work on Interoception sure. https://www.kelly-mahler.com/what-is-interoception/ 

I just reread what's going on. Is this dc IN PAIN??? I mean, what gives?? Why are they suggesting ABA for that? Or they're just saying kill time?? Doesn't all this stuff that is going on with him HURT? ABA is typically very stressful and causes it's own trauma. The logic there just complete evades me. I'm not seeing this as a dc who is so active that they are using energy to resist demands. What am I missing? ABA is for compliance, early learning skills, joint attention, a lot of basics. Why are they recommending this??

There are counselors who specialize in pain, right? 

 

 

I think the aba came as a recommendation from the pain clinic they met with today.  That all the pain he has is more in his head.  Not that it isn’t real pain to him; he is in real pain. But they’re saying his body is just too hyped up and signaling too much as pain.

yeah, the aba didn’t make sense to me.  He’s a good kid.  Like a really good kid.  No behavioral issues. He did do a lot of OT/sensory stuff in his early years to deal with behavior/sensory issues. 

Edited December 17, 2020 by matrips

[matrips]

18 minutes ago, PeterPan said:

Food is such an interesting topic. They could food combine, which will ease the strain of digestion. Focus on whole foods. But it still doesn't address the question of what in the world is going on. 

I mean, to me this is like those shows on tv where people have symptoms for 15 years before they finally find a doc who figures it out. 

He spent three years on formula.  His mom puréed foods for years and pushed them through his stomach tube.  All to ‘help with digestion’.  They want him back on formula.  

Edited December 17, 2020 by matrips

[PeterPan]

8 minutes ago, matrips said:

Not that it isn’t real pain to him; he is in real pain. But they’re saying his body is just too hyped up and signaling too much as pain.

Has he had an OT eval for sensory? I think he'd get farther with a really experienced OT. If they go to the FB group for Kelly Mahler's Interoception curriculum, they can find an OT to work with via tele. That way they can get someone really experienced. And actually post there and say my dc has severe pain from an undiagnosed disorder plus ASD and they're telling us to do what we can to get how he handles his pain and stress down and that you're looking for an experienced OT. I think you'll get some bites. Or write Kelly herself for names. 

The curriculum has them go through 16 body part awareness lessons and then build a feel good menu. So I keep suggesting this, because I think the *mindfulness* aspect and the improved *self advocacy* and recognizing what feels good could help him. I think that's why the pain clinic is saying look to the autism community. I think we may have even had a post like this before on the FB group. We get some really challenging situations/posts. So for the part where they're saying mindfulness/strategies/whatever would help and to look to the autism community to find them, that would be a place to look. An OT who is experienced with interoception. 

As far as the trauma question, there are trauma counselors. You can even find trauma counselors with experience with autism. And they have a number of systems they can use. But I hate to say oh yeah do this or that, because good for one can be harm for the next. Like TRE (the trauma release exercises I did and still do) are very intense! Now you want something *milder*? I've done cranial sacral and had some trauma release. Not like TRE, and of course that was after tons of TRE so my body just is ready to get it done. But again, for just a really gentle thing, cranial sacral can work. 

14 minutes ago, matrips said:

They want him back on formula.  

That's a really complicated thing. If they're saying that, a lot is going on. That requires professional help.

It must be very hard to watch this.

[matrips]

She is going to call the OT I’ve been encouraging her to call for years.  She is phenomenal.  We saw her for retained reflexes, but she is so experienced and skilled. 
re the formula- Yeah, but they’re ignoring the history of greasy stools, vomiting, stomach pain, back pain, inflammation,  and losing weight that happened on formula. He went from formula to tpn.

it just sounds like they’re going in circles.  No real new help 😞

[matrips]

I’ll send her Kelly’s info too.  Thanks.  Yes, he did tons of OT and sensory stuff when he was younger.  But probably not since age 10 maybe?

[Ali in OR]

The update reminded me of a friend's daughter. She had 4 surgeries in the space of a year (appendicitis, 2 knee injuries and 1 shoulder injury). During the last surgery she awoke during the surgery and her mom thinks that caused some trauma, in addition to just having all of the surgeries. Anyway, she ended up experiencing extreme pain--no one could touch her. Eventually she was in a wheelchair. They diagnosed her with I think Reflex Sympathetic Dystrophy Syndrome (I was googling trying to remember what it was called). It's an interesting diagnosis-"When you have RSD, your sympathetic nervous system gets mixed signals. It turns on after an injury, but doesn’t turn back off. This causes a lot of pain and swelling at your injury site." She needed to be in an in-patient rehabilitation program for several months to work through it. So it doesn't sound way off to me that your friend's son could have something like this exacerbating his health issues.

[BeachGal]

That poor kid. He has really been through the ringer.

If the GI problems began shortly after the virus, I would suspect the virus led to new problems. Have they tested his microbiome? Butyrate protects the gut lining. Maybe he has chronically low levels?

Was he tested for the tick-borne red meat allergy, alpha-gal? If he can eat chicken (fowl) but not red meat, that might be something to ask about. If a possibility, some of the “natural flavors” that are added to foods contain beef or other mammal cells and could cause problems.

The bone swelling could be related to the lack of vitamin D. Have his levels been low for years? He’d also need calcium and magnesium and a type of K for his bones. The clotting problem could make K tricky. Magnesium is needed to activate Vitamin D as well as help with about 300 other processes. I’d think that is low, especially if his gut has such serious inflammation.

For pain I’d worry about how meds affect his immune system. Some of them can bring on SJS, Stevens-Johnson Syndrome, which is very rare but his gut just isn't healthy. An alternative that I’ve used for any pain or inflammation issue is pulsed electromagnetic frequency therapy (pemf). It works well but could take awhile to kick in, especially if you're new to it. I usually use a Sota. Dr. Pawluk (MD) uses pemf extensively on his patients. He has a website with articles that explain it. As a bonus, it can help build bone and can even heal some types of non-union bone breaks. NASA uses it. NFL. Race horses.

TRE is a series of exercises that cause an involuntary response called neurogenic tremors, a kind of deep muscle shaking. Mammals naturally shake after traumatic responses because it is a survival mechanism. Humans, though, can stop this process. Peter Levine and David Berceli are two individuals who use TRE with clients. Stephen Porges’s polyvagal theory explains how and why it helps. You can find info they've put online about it. If done very gently with a skilled practicioner for short periods of time, it might help but it seems your son’s friend main problem is a long-standing, unresolved gut issue possibly caused by the virus. TRE could help, though.

ETA Alpha-gal allergy seems to be a possibility that needs to be ruled out if it hasn't been already. The allergic reactions are odd and don't always occur while other times, very small exposures — exposure to fumes from cooking meat, band-aid adhesive, etc. — can cause a reaction. The reaction also can be delayed by hours after the exposure. People can spend years suffering severe gastro problems before they are diagnosed. Here’s a link:

https://alphagalinformation.org/symptoms/#Gastrointestinal Symptoms

Edited December 17, 2020 by BeachGal
Added info

[Drama Llama]

4 hours ago, matrips said:

I think the aba came as a recommendation from the pain clinic they met with today.  That all the pain he has is more in his head.  Not that it isn’t real pain to him; he is in real pain. But they’re saying his body is just too hyped up and signaling too much as pain.

yeah, the aba didn’t make sense to me.  He’s a good kid.  Like a really good kid.  No behavioral issues. He did do a lot of OT/sensory stuff in his early years to deal with behavior/sensory issues. 

Are you sure that they said ABA and not “behavior therapy” and mom made a leap?  I would think Cognitive Behavior Therapy before ABA based on what you describe, as well as trauma specific therapies like TRE or EMDR. 

 

[Drama Llama]

5 hours ago, matrips said:

He spent three years on formula.  His mom puréed foods for years and pushed them through his stomach tube.  All to ‘help with digestion’.  They want him back on formula.  

Does he have a gastroparesis diagnosis?  

[Lecka]

One of my kids has had years of ABA therapy — I am wondering if Baseball and Hockey is correct — bc it does not sound like ABA therapy would make sense to me?  
 

CBT would make much more sense to me also?

If there is a very specific referral to someone who has this specific specialty — that would be different to me, I wouldn’t rule it out.  But in general — it doesn’t sound right.  
 

I am so sorry for your friend and her son!  This sounds so hard.  
 

 

[matrips]

8 hours ago, BaseballandHockey said:

Does he have a gastroparesis diagnosis?  

They have tested him in the past for his slow moving digestion and such.  I’m not sure what diagnoses they’ve labeled.

[matrips]

8 hours ago, BaseballandHockey said:

Are you sure that they said ABA and not “behavior therapy” and mom made a leap?  I would think Cognitive Behavior Therapy before ABA based on what you describe, as well as trauma specific therapies like TRE or EMDR. 

 

She didn’t even know what aba was, so they must have said that.  Maybe they said the wrong thing. ?  

[Lecka]

For ABA — maybe there is a specialty clinic or tele-health of some kind?

Usually ABA agencies are working with autism. 
 

My son did do some desensitization with ABA..... for example, he did not tolerate wearing sun screen (but needed it!).  He started with seeing other people wear lotion.  Then was allowed to squirt lotion onto other people’s hands.  Then was able to rub lotion a little.  Then tolerate having lotion on his hands.  Then could tolerate having it on his arms.  Then he could go from lotion to sunscreen.  Then he learned to apply sunscreen to his face himself using a mirror.  
 

I could see something like this maybe?
 

But I think there would be serious ethics concerns for anyone who wasn’t working close with a doctor or with some kind of specialization.  I can’t imagine anyone my son has worked with being comfortable with it.  

Sometimes ABA can address eating issues?  It would still be through desensitization.  But OT or SLP can also do this. 
 

Ime ABA will only address this if they are sure there is no allergy or health condition (requiring doctor visits to rule these out), have ruled out that a feeding specialist is needed (often this is a SLP), and there is a reason to use ABA and not SLP or OT (usually because ABA is providing other services anyway).  
 

Anyway I think she needs to ask for clarification on this.  Or a specific name or clinic, or tele health option (depending where they live).

I have not lived anywhere that I think a local ABA therapist would be able to address this.  

 

[matrips]

@Lecka well he definitely has allergies and health issues.  He would gladly eat lots of different foods; his body can’t take it though.  They tried desensitizing him to meats and gluten by feeding him small amounts regularly (per the doctor).  It seemed to go ‘okay’ but turns out it was just building inflammation and issues inside his body to a breaking point.  So after that hospital visit, he went back to basics. Part of the issue is his body doesn’t react immediately.  So doctors think something is okay when it’s not. Even though the mom reminds them he is a slow reactor.

[Lecka]

It just doesn’t sound like something for ABA.