Best option for hEDS and potential MALS and SMA?

So my dietician is really concerned about my weight and inability to eat enough food or drink enough meal replacement. She thinks it is time (and has been for awhile) for a feeding tube. What feeding tubes are safest for hEDS and suspected MALS and SMA? My endometriosis also makes me throw up a good bit. My research is saying NJ? How uncomfortable are there really?

A nerve block helped a little with MALS for a few days, and they’re doing a nerve destruction in 3 weeks. If that doesn’t help enough they may do more SMA imaging. Ultrasound was positive for both but CT-A scan was negative for both.

I’ve never been able to maintain or gain weight my whole life and have been underweight for 2 years. I’ve gone sub 90 twice (I’m 5’5 so that’s really bad) in the past 2 years and am getting close to that again. One allergic reaction or flare up can make me loose a lot of weight fast, and it takes months to regain just 5 or 10 pounds. I’m feeling scared and emotional to get a feeding tube but the damage happening to my body isn’t okay. Some people in my life are saying I don’t need it or that it’s not fixing the root cause, so I guess we’ll see what my GI and the rest of my care team says.

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u/hayleyspeir — 3 days ago

Feeding Tube?

So my dietician is really concerned about my weight and inability to eat enough solid food or drink enough meal replacement. She thinks it is time (and has been for awhile) for a feeding tube. What feeding tubes are safest for hEDS and suspected MALS and SMA? My research is saying NJ?

I’ve never been able to maintain or gain weight my whole life and have been underweight for 2 years. I’ve gone sub 90 twice (I’m 5’5 so that’s really bad) and am getting close to that again. I’m really scared to get a feeding tube but the damage happening to my body isn’t okay

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u/hayleyspeir — 4 days ago
▲ 4 r/eds

Feeding Tube?

So my dietician is really concerned about my weight and inability to eat enough solid food or drink enough meal replacement. She thinks it is time (and has been for awhile) for a feeding tube. What feeding tubes are safest for hEDS and suspected MALS and SMA? My research is saying NJ?

I’ve never been able to maintain or gain weight my whole life and have been underweight for 2 years. I’ve gone sub 90 twice (I’m 5’5 so that’s really bad) and am getting close to that again. I’m really scared to get a feeding tube but the damage happening to my body isn’t okay

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u/hayleyspeir — 4 days ago

Getting Moe and Pete out of their cage without a specific YouTube video?

Hey everyone! Last month my fiancé and I got two GCCs who were at our local PetSmart for 2+ years. They are definitely more comfortable and starting to trust us! They will still not take treats from us, but Moe did gently brushed up on my partner’s hand when he gave them breakfast the other day.

We have let them out of their cage for the past 3 days, but they will only come out if we put on Bird Nerd Sophie’s video on how to get birds out of the cage? They have flown (a little) and landed less than a foot away from us once! A real perch area for out of the cage is getting here Tuesday so maybe that will help? They go back in their cage on their own when they are ready (after about an hour). They are not great at flying, and get very tired after just a little bit… We don’t think they’ve ever had an open space to truly fly in because they go in little circles 😭 They have been a bit more comfortable each time we let them out, and seem to be exploring a little bit! They loveeee to chew at the strings that their toys are ties up with from the outside!

Moe (yellower) is always the first one out and the last one in, and he has gotten a lot closer to both of us (and brushed up against my partner). I think he will be the one to take treats from us and let us handle him before Pete (greener)…

Any advice on getting them to come out without always playing that specific video? (We have a treat buffet and toy options to lure them out onto a metal chair they like to perch on) And also to bridge the gap between using a specific treat bowl and taking treats through the bars from us? They run up the second we back away whenever anything goes in the treat bowl. We’re having trouble introducing target training because they don’t know us like that yet… I’m sure it will just take time! Thank you so much!

u/hayleyspeir — 28 days ago
▲ 18 r/Conures

Getting Moe and Pete out of their cage?

Hey everyone! Last month my fiancé and I got two GCCs who were at our local PetSmart for 2+ years. They are definitely more comfortable and starting to trust us! They will still not take treats from us, but Moe did gently brushed up on my partner’s hand when he gave them breakfast the other day.

We have let them out of their cage for the past 3 days, but they will only come out if we put on Bird Nerd Sophie’s video on how to get birds out of the cage? They have flown (a little) and landed less than a foot away from us once! A real perch area for out of the cage is getting here Tuesday so maybe that will help? They go back in their cage on their own when they are ready (after about an hour). They are not great at flying, and get very tired after just a little bit… We don’t think they’ve ever had an open space to truly fly in because they go in little circles 😭 They have been a bit more comfortable each time we let them out, and seem to be exploring a little bit! They loveeee to chew at the strings that their toys are ties up with from the outside!

Any advice on getting them to come out without always playing that specific video? (We have a treat buffet and toy options to lure them out onto a metal chair they like to perch on) And also to bridge the gap between using a specific treat bowl and taking treats through the bars from us? They run up the second we back away whenever anything goes in the treat bowl. We’re having trouble introducing target training because they don’t know us like that yet… I’m sure it will just take time! Thank you so much!

u/hayleyspeir — 28 days ago
▲ 10 r/Conures

Moe & Pete Taming

It’s been 3 weeks since we brought Moe and Pete to their forever home after their first 2 years of life at PetSmart. They are adjusting well! They are loving their chop, playing with toys, grooming each other, and starting to show their personalities and voices off! They are getting more comfortable with both of us, but especially their dad/my fiancé! They love listening to music, watching shows (especially SpongeBob), and being serenaded by instruments played by their dad!

We have been using a treat bowl on the door of their cage, and are about to start trying to hand feeding them their favorite treats so far, almonds! Any advice on this stage in the relationship? We plan on going slow and offering the almond at the doorway (cracked) and waiting for them to come accept it. They don’t seem bothered
when their cage is cleaned, and have even kind of approached their dad when he is cleaning or adding food/water!

They also seem to have started molting. They have lost 4 bigger feathers and quite a few tiny feathers so far. Their colors already seem a bit brighter than when we got them! We have not witnessed any stress behaviors or self plucking, all the feather loss appears to be natural!

Thank you so much for any advice!

u/hayleyspeir — 1 month ago

Theme Park Transfers?

Hey guys! I’m going to Disney and Universal in Orlando this fall for the first time in a decade. I’m sure I’ll have to transfer for rides (ambulatory so that’s fine), but what are the logistics? Aren’t there rides where you exit in a different area? Would the cast members set up my wheelchair at the exit? Would I have to wait for it? Are there any safety concerns of it being damaged by staff at either park?

Also, I’ve gotten stronger since I got my chair last summer, but don’t have a power assist. I feel like my TiLite glides really well, but longer outings take a lot out of me (aquarium, botanical gardens, college campus, etc). Would insurance cover a power assist if I only need it for bigger outings and not in my home? I feel like I will regret not having one at the parks (I can always make my bf push me if I’m tired, but I prefer the independence and hate using the scooter things)

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u/hayleyspeir — 1 month ago
▲ 1 r/eds

Peptide Injections?

Has anybody here tried peptide injections (TA-1)? I’m about to start them and was curious if anyone has tried them and what their experience is? My specialist for my hEDS/PoTS/MCAS is getting with a colleague to get details or adding more peptides (KPV and others?) in the future as well. Longterm we’re hoping it will help my immune system and potentially help with healing/my connective tissue? Thank you so much! 😊

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u/hayleyspeir — 2 months ago
▲ 96 r/Conures

GCCs Rescued

Well we ended up getting both GCCs that had been at PetSmart for the past 2 years. The manager said they are phasing birds out but aren’t sure if more will be sent, so we are still going to call corporate tomorrow to complain about the poor birds. The manager actually got the last two conures that were at that store after 2 years. Also he’s standing on his leg just fine today so maybe it’s not bothering him?? Still have a vet appointment for them anyways. We are definitely going to have to upgrade cages and everything much sooner than expected 😅 They’re getting settled in and we’ll see how they are feeling the next few days! Trying to just give them their space. They are 0% tame so this will be a long process! We are naming the yellower one Moe and the greener one Pete. Any advice for the first few days? Thanks everyone!

u/hayleyspeir — 2 months ago

Prospective GCC Parents

Hey guys! My fiancé and I are looking for advice. We have been looking at the same green cheek at PetSmart for over a year, and we suspect he has an injured leg because he never puts his left leg down (banded) and leans against items awkwardly. He tried to put it down and can’t put his full weight on it before putting it back up. He’s been separated from the other green cheek, and both have now been half off and no one wants them still. We think he recognizes us, and even though I don’t love birds I’ve fallen for him. My fiancé has bird experience and we have the time and resources needed to give him a good long life. Should we get a hospital cage for him for now, or go ahead and get the A&E Flight Bird Cage, or both? Would we also need a vet travel cage? We already found a vet near us we’ve reached out to. We plan on taking him as soon as we adopt him. Any other advice? Thank you so much!

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u/hayleyspeir — 2 months ago