Gifted Issues Discussion homepage Forums Twice Exceptional Misdiagnosis

Thanks, I will ask the doctor about that as well after my son has his echocardiogram.

I think I need to stay away from my relatives right now. Even my dad said something that I did not need to hear right now. He said the fact that my son has pain after standing for more than 15 minutes will make it hard for him to find a job which sends my worries in a whole new direction when I need to focus on getting through the diagnosis issues and the surgery. I have not talked to anyone else in my family about it. I did tell my dad that he could tell my sister who wanted to diagnose my son with Aspergers because he read at 2 and used to join in with family discussions about the latest things happening in the news because he was homeschooled and learned everything he could online about what was happening, so he knew when she said something that was not correct. He wasn't rude about pointing it out to her, he would just say he had read something different and he thought something different instead of just going along with what she said. I taught him to question things and that it was fine to talk about the news with the family, especially if he had something interesting to add. His ability to talk about these things was better than mine so I didn't think anything was wrong with him talking, especially when he couldn't talk to kids his age about these things, but people here think it is weird if your kid talks like an adult. My son has seen a lot of doctors and not one thought he had Aspergers. I know this had to bother my son, even though he said it didn't. He stopped talking around family because of the way they are. My husband always told him to not worry about what other think.

Lori the echo won't show anything about POTS, which can be even harder to get diagnosed than connective tissue disorders. You may luck out but you may need to research someone local(ish) to you who has a clue, maybe through a support group website. Note: I am not sayin he has it, just that its hard to get assessed by someone with a clue. I passed (failed??) the diagnostic tests with flying colours and there is no doubt I have POTS but I still get random drs doing weird meaningless "tests" and giving me the "that's all in your head honey" look....

Ultramarina, I haven't had any of my kids formally diagnosed, though all of them will probably need to be at some point. But I know what to watch for because I am diagnosed. What is interesting though is that my HG+ girl was described by our OT as having neurological integration in line with her iq (I assume he speaks only of neurological issues as they relate to OT assessment), and that this was the only reason she was not more obviously disabled by her low to e and hypermobility). He was astonished by some of te things she could do, which he felt should not be physically possible for her body. My point being - in some kids there are ways of compensating. My MG girl, as far as I can tell, is actually not as bad wih the low tone and hypermobility but she has integration problems and "looks" worse....

We had/have the same problem... I am sure it's worse where you are but my neighbors were perplexed by my son precocious verbal and conversational skills.

This is us now.... When I saw the recommendation that we follow up with a connective tissue disorder clinic and specialist I looked up the symptoms and I felt like Ds doesn't have many of the symptoms. So I simply dismissed it. The neuromuscular specialist did mention it but didn't seem very concerned. Thanks to you, I know better now and will follow up.

At his last appointment with the orthopedic surgeon, my son told the doctor that he was concerned that anesthesia might not work as well on him as it does most people because he noticed that the anesthesia his dentist uses doesn't work unless she gives him more than the usual amount. The doctor told him they would be using a different kind of anesthesia for spinal fusion surgery.

I knew that my son was trying once again to tell a doctor that he had some differences and needed to know why. He needed to know if there could be problems with other types of anesthesia, but the doctor just seemed to dismiss it as not being relevant. It is hard to keep asking questions when you get this kind of response. I just got through reading that people with a joint mobility syndrome can have problems with local anesthesia and it sometimes takes more than the usual amount to be effective. Doctors should listen to patients because there could be important clues they are missing.

Lori is he having a local or GA?

oooooo, follow up on that... my father had harrowing stories...

It is a six-hour surgery so it will be general anesthesia.

While searching for reasons for my mother's severe complications from surgery that left her with severe brain damage, I read about anesthesia awareness. I also saw people talking about their experiences with this on a tv show recently. I will talk to the anesthesiologist about this before my son as any kind of surgery. This is why the anesthesiologist needs to know about his medical conditions so this can be avoided.

The geneticist thinks my mother's complications had more to do with her sleep apnea and the fact that they did not monitor her oxygen levels closely enough during and after surgery. My dad and sister both said some kind of alarms kept going off but they thought maybe the nurses just assumed there was something wrong with the equipment because they would not do anything. My son doesn't have sleep apnea so we shouldn't have to worry about that. He will not be having the surgery at the hospital my mother went to. We have heard a lot of horror stories about that hospital since that happened to my mother.

My son likes to watch the news and we started seeing an ad looking for people who had problems with spinal fusion surgery to call some law office.

This is so hard.