I go big too! Ellie sounds like me. 
It is beyond hard when our kids are hurting - heartbreaks, sickness, disappointments in life, whatever. With me as the parent being sick, weâve learned (not elegantly or smoothly) that we all need check-ins emotionally from time to time. Iâve had some good long teary conversations with each of my girls periodically through my increasing sickness, and it helps to just open up that door sometimes and ask how theyâre emotionally feeling with lots of open ended questions. My therapist has helped me navigate it better than I was doing before I met her. Ha. This crap takes a huge toll on a whole family. You sound like a great momma bear, working hard to protect your cub! Get some sleep!! Sleep is key. 
- t.
Hello, Iâve been reading this with interest as your daughter sounds so much like mineâŚwheelchair bound ect⌠Her current diagnosis and surgical history is as follows: POTS, MCAS, hEDS, ME/CFS, IIH, probable CSF leaks, MALS, Nutcracker and possibly MayThurner syndromes, occult tethered cord, and recently bilateral jugular vein compression. Our family has suffered along with her for the past six yrs. I understand your pain. We know God has a plan and He is always with us. Sometimes in the darkness, we feel alone even though we know weâre being carried in His loving arms. Wish you all the best!
HI all you moms out there! And thank you @Nate for posting this. Ive been off the forum for a few years but read when I can because I have been doing busy doing other things in my life and and in the process if reevaluating my own health and my daughters yet again after my own personal medical scare. She is now 30 (Iâm 69)and POTS took her down at age 13 and she had to be home tutored until age 21 when she finally graduated. She started passing out at age 7. She has POTS, EDS and MCAS. I had to fight the school district who didnât want to provide her a tutor and just wanted her to get a GED or do online school which was poor at the time. I filed a civil rights complaint with the Dept of ED and they quickly were brought in line. It took alot of research about special education, 504, and IEPS before I filed against them.
She had a few friends that dropped away and without going to school on campus, it dropped to nothing. Friends donât have time or patience for sick friends. This makes me so sad to share this and makes my heart so heavy. My daughter lives a solitary life at home and has had no friends for over 15 years aside from me and her brother whom has now moved away. She has taken some college classes but only one at a time because she doesnât have the stamina to do more. In one class, a guy asked to take her to coffee and she freaked out not knowing how to respond or act. She has never had a boyfriend, let alone adult friends. When I encouraged her to go for coffee and just have a friend, she said no. She doesnât want or need any friends. She is happy in her own little cocoon where it is safe and can control her symptoms. She takes one class a week now (at my insistence) to maintain some social connections. She has about a 4 hour a day battery life to be up and about doing things and resting in between.
My daughter had an expander early on and braces, then had to go for a 2nd set of braces in her early 20âs. She has TMJ issues just like me. I do recall taking her to a TMJ specialist whom I later fired and she had a CBCT and it has been so many years, I donât recall anything stood out. This is not a road I have explored with her yet. IE: Vascular compression.
I have EDS, likely MCAS and had ES surgery about 5 years ago and coming back around to possible vascular compression as it was not addressed by my original ES surgeon. Listening to you all you mothers now is prompting me now to open this door and explore it for my daughter too. We have been to multiple POTS specialists all over the country and tried everything including yes, in home PT to increase blood volume with little to no impact. The only thing that helps her is Cromolyn for her GI struggles and weekly saline infusions. Im on the west coast and quite frankly not happy with the care on this side of the country. My own hEDS ortho here suggests going to east coast. Im considering a move so we can get access to better care for both of us. Time to dive in again into the Eagles world.
I hope that you have a good consultation with Dr Hepworth, and that he can help you , what a journey youâve had for yourself & your daughter, how do you keep up the energy to keep fighting? 
Thank you! We are struggling to get imaging done to take to the surgeon. Do you think a CBCT is enough to talk to the surgeon? I am so frustrated right now (or I should say I am still frustrated)
Ah! Chromalyn is the only thing that works well for my daughter. She is down 40 pounds from the beginning of this illness. Gastro Chrome has stopped the weight loss and allows her to eat (most of the time) but she is still so nauseous all of the time. But we have that win. Good luck with your daughter. It is so frustrating that we know what is wrong, but we canât fix her immediately.
Most of the highly qualified ES surgeons require a regular CT with and with and without contrast before evaluation and getting you onto the schedule. You would save alot of time and delay by getting one locally where you live. Not sure what insurance you are dealing with? And how cooperative your PCP is.
I know I had to strong arm my PCP into ordering one and he finally capitulated. Then he coded as TMJ which he knows full well insurance wont cover. He had to eat crow on that one because it did come back with elongated styloids and he had to fix the coding. LOL. If you can get a doc to order the scan, make sure the order is written to be evaluated for Eagles Syndrome and have the doc request measurements. Unless radiologists are told to do this, they likely will ignore and findings.
Has she seen a GI that specializes in âMotilityâ disorders?
The doctor ordered the imaging on Oct 14th. We still donât have the pre-authorization. I am
Going to get her PCP involved.
I hope that you can get the imaging done; the styloids can be seen on a CBCT, but a CT with contrast if possible would be helpful if vascular ES is suspected, ideally CT with & withoutâŚ
One foot in front of the next JulesâŚ.Its hard when you are dealing with your own stuff on top of an adult daughter that is disabled from this stuff. I just try and stay an top all the cutting edge studies and pray that a fix occurs in her lifetime so she can have some sort of quality of life.
What kind of insurance? I suggest calling the insurance customer service and ask for prior authorization dept. Make sure they actually received the prior-auth request and possible ask what the diagnosis code they used. Rattle there cage. It should NOT take this long. I donât count on PCP office or any practice to follow thru on anything.
Hi! I am reading this and finding this conversation so interesting! I do have a question for those of you who said you are able to get Cromolyn for GI. I have not been able to locate that drug for quite some time. My daughter had been on that for a long time and suddenly about 6+ months ago it was no longer available! She used it hard so then we needed to find something else to try and replace it with meds such as Ketotifen, Cyproheptadine, and Pantoprazole. It does seem she is eating more and her appetite is better but recently she has had a setback again and now we are doctoring with Dr.Hepworth and waiting on imaging. I am curious @Nate and @Snapple where were you able to get the Cromolyn or Gastrochrom?? I would love to know if you do not mind me asking?!
Thank you!
We get the Gastro Chrome at CVS. I have cases of it. My daughter also takes Cyproheptadine,
Prilosec, famotadine, and about 12 other meds.
Cases of cromalyn? Wow! Howâd you do that? I wonder if youâd mind sharing the price? We are self pay and it is salty. Presently, we order from a compounding pharmacy that ships the powder capsules. We break them open into water and shake it up.
I am not sure what my insurance pays for it, but I have a $10co-pay. They give us 3 months at a tjme, so I have boxes of it.