I re-read those quotes the other day in light of dd's diagnosis and realized how much they relate to her. :) My youngest was born with a rare (1 in 25,000) chromosome syndrome in which he is only one of a handful that present the way he does. He's rarer than rare. We've been on a quest for answers for him the last 13 years. Adding dd to the mix jacked up the stress level and the crazy schedule but in some ways having lived with ds for 13 years has made this a little easier to deal with. :grouphug: I don't like the answers either!

Marfan's was one of the first questions that came up yesterday! My kids both have severe Pectus Excavatum (which has been repaired) and a few other markers. I was sent to genetics when I was 18 to rule out Marfans as I had a lot of markers. I had the cardiac workup and the eye testing. My kids have never been tested directly to rule it out but have had most of the tests they do in the course of other issues.

:grouphug:

We have been searching for an answer for a long time. It is definitely a marathon and not a sprint. Because of other family issues (celiac and autoimmune) we had to rule a lot of stuff out. One thing we didn't realize is just how deeply this was affecting her emotionally. Continually seeing doctors who had no answers has taken a toll on her. I think, after yesterday, she is greatly encouraged to at least have a name but she is still very raw and vulnerable in that area. :grouphug: to you and your son. It is so hard to see them suffering and not be able to give them answers or change things.

They checked everything it seems before coming to this. She has been through GI, Immunology and Endocrine who did gallons of blood work. The doctor yesterday was amazed by what had been done already. When I asked him if there was anything he could test for he said there wasn't really anything left to check. He's doing the MRI to rule out what he called 'dry arthritis'. They haven't ruled out the possibility of her testing positive for some things in the future so he'll be following her closely. The invisibility of this syndrome is one of the hardest parts! I think we're doing pretty good with it at home but it is hard out in public or with friends. She looks fine but under the surface she's in a lot of pain. Thanks for the reminder to be careful of that! I have a second cousin living with Lupus. :grouphug:

Anyone have a child with these syndromes or are familiar with them? We're just starting the journey of information discovery and treatment/recovery for dd. We saw an amazing rheumatologist yesterday who diagnosed dd with AMPS along with chronic fatigue. She's been suffering for the last 18 months. Our next step is an MRI of her hands, physical therapy and a referral to the Pain Management Clinic. We'll also be getting her in with a counselor to help with the emotional toll and to help her adjust to this. He also agrees with her GI that a gluten free trial is the way to go but we need to wait until after her MRI. She has all the same symptoms my son with Celiac had prior to diagnosis but she tests negative for CD in blood and biopsy and they think this is significant. I'd love to hear any and all experiences, ideas and thoughts as we start down this path. Nothing is too out of the box for us. He did tell us that they consider this to be different than adult Fibromyalgia but if you have Fibromyalgia (or know someone who does) I'd welcome experience from your journey too! I am so, so glad we have an answer and a starting point to help her.

Dd has had a horrible 18 months of chronic illness and pain. I've shared in a couple of threads here about it. We've been to 4 specialists so far with no answers. They all believe our answer lies in rheumatology. The nearest pediatric rheumatologist is 3 hrs away. We had an appointment for Sept as that was his first available. On a whim I called this morning to see if they had an cancellations sooner and they actually had one for Thursday! We really need this doctor to have some answers. Honestly I have no idea where we go from here if he doesn't and this is taking a huge toll on dd emotional as much as medically. We have a call into psych to get her started on meds to help with depression. She told me earlier this week that when the most recent doctor didn't have any answers it was like a huge empty space opened up inside her. I feel so bad for her. Please send prayers and good thoughts our way for Thursday.

Poppy - Thank you for this! Lots of good stuff in here.

Her levels have been checked and as far as we know they are normal. We do see endocrine again on Tuesday so there may well be more labs. The new doctor she has been referred to says in his bio that he loves medical puzzles. He's got one in dd. I'm hopeful that he will be able to help her.

How funny that this just popped back up today. I am just waiting for the appointment with the proper doctor to get her started on something. We still do not have answers for her physical symptoms. Having yet another doctor tell her, the other day, that he knows something is wrong but doesn't know what sent her into a bit of a tailspin. She asked me to go ahead and make the appointment. It should be in the next week or so. I'll keep you posted :)

:hurray: :hurray: :hurray: Congratulations Gil! That's great!!

We do not have a great deal of contact with them, however, the level of contact we have now is no different than before this occurred. There would be nothing in my interaction with this person to make them think I was angry with them.

DP

Thank you all! :)

praying :grouphug: :grouphug:

Ds registered at orientation but he, and everyone at that orientation, registered earlier than the other freshmen. It was orientation for students going into the honors program and one of the perks of that program is that the honor students get to register before the other students to give them the best advantage to get their needed classes. Since most of those kids went into school with DE credits, as they move through school they will, at times, register before upperclassmen. If they are a junior by credit but only 2nd year they will be registering for junior level classes before the junior class.

Thank you for posting this! This is the next step for us with ds. Teaching him to read has been one of my dreams as he loves books. Always good to see how others are doing it.

:grouphug: :grouphug:

I had to do this last year with someone I have known for years and see on a regular basis. I was trying to do it gently but the individual did something that made it necessary for me to end the relationship very quickly. "I bear you no ill will, but I need to be clear that we are no longer friends. Let's each focus on our separate interests and relationships from now on." is pretty much how you have to do it. It wasn't pleasant and took some time to get past but it was one of the single most important things I have done for my own personal well being. :grouphug:

I have christened my current van Charlie in honor of The Kingston Trio's song 'Charlie on the MTA'. My van and I are out almost every day (therapy and doctors) and it seems that we will never make it home ( two of the days are 6 - 7 hours long). I find myself singing the chorus to that song on particularly long days or days when I have to go somewhere new. When it's time for a new license plate I'm getting one that says Charlie :)

Our church (non-denominational) has security guards during any activity. However, they are men of the church who make up the team. No weapons, no cameras etc.

:thumbup: That's great!! Good luck with your studies.

One handed and very carefully :) The back space was my friend. It's also hard to type one handed while laughing at your own brilliance !

Thanks DF!! The acetone worked. Thank goodness. :lol: :lol: Believe me - for a minute there I thought we'd all find that out. My one consolation was that I didn't have the whole bunny stuck to my finger!

This could only happen to me!! A bunny shelf-sitter broke an ear when ds dropped it so I grabbed the super glue. I put the glue in all the right places and held the piece in place. Apparently some dripped. I now have 1/2 an inch of my finger stuck to a bunny ear which, might I add, DID NOT stick on the bunny :glare: I've tried non-acetone nail polish remover, some strong solvent dh has and am currently soaking in Goo Gone. NOPE - not working. Dh is after some acetone but if that doesn't work???? Someone please give me an idea (after you finish laughing that is :) )