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Hi, and sorry. I was out of town for a while and my laptop got a virus. Forgot when I got home to answer because, like always…a little crazy! The appointment went well. I thought the doctor did a very good job of explaining what was going on with Jaynie. He agreed that it is most likely central sleep apnea and also thought due to the position of the tonsils, it would be good to have them removed. He too thinks after that she may need CPAP, but we can always hope the tonsil removal alone helps! So moving forward with the surgery, which is March 20th. We have once again been delayed due to illness and asthma. She went back on oral steroid today. Hoping it knocks out this flare once and for all so we can move forward with her treatment plan. How has your daughter been doing and how are you holding up? Any new news?
Yes, she has been on flonase for a while. Flovent? I believe she has been on that before as an asthma control med, but it was not strong enough and we moved on to Advair. Another doc has mentioned that as treatment for EE, but instead of inhaling it, she would swallow it. Another question I will add to my list for Wednesday!
Jaynie did not have the surgery because she got sick. But, the good news is, my persistence has paid off and instead of waiting until June to see the geneticist, we are now going this Wednesday. I will feel so much better about proceeding with surgery after I have his opinion on this matter. One small victory.
Many have judged that I have put way too much thought into a ‘common’ tonsillectomy. But I argue a surgery is a surgery, with potential life changing effects, plus while it may be a ‘common’ surgery, my child is anything but!
Results from a repeat sleep study? Yes, please keep me posted and good luck! Hope it helps you figure some stuff out and again, thanks for taking time to reply here. I will keep researching, asking more questions and maybe even get another opinion. I did tell our regular pulm’s nurse today, that somebody there needs to take lead on her. She has been to an immunologist, pulm, cardiologist, upper airway which included the ENT and a different pulm., and is going to see a geneticist, all of which have thrown in their two cents and ordered tests. Who is the puzzle master?!?!?!
Again, best wishes for tomorrow!
Thanks for your replies!
The cardiologist said she has autonomic dysfunction. I have asked the question to him, the ENT and a different pulmonary doctor, associated with the upper airway, if the true problem is exactly that, but they have all said they haven’t heard the breathing being affected. Hence my frustration, because to me, it seems it could be related. I have been trying to read up on all the causes of the hypoventilation. Here are the sleep study results in question:
The average heart rate was 71 BPM during REM and NREM sleep. Frequent premature ventricular contractions were noted. There were no obstructive or mixed apneas. There were 2 central apneas with an average duration of 11 seconds with the longest being 12.7 seconds. The average oxygen desaturation in association with the central apneas was 91.9% with the lowest being 91.9%. There were 4 obstructive hypopneas with an average duration of 11.8 seconds with the longest being 13.2 seconds. The average oxygen desaturation in association with the obsturctive hypopneas was 90.8% with the lowest being 88.7%. The apnea-hypopnea index was 1.1. The obstructive index was 0.7. The average oxygen saturation was 96.8% during REM and NREM sleep. The average end tidal CO2 was 50.4 in sleep, 46 in Wake, with a maximum end tidal CO2 of 61.8 There was 99.6% of the study time spent with an end tidal CO2 higher than 45 and 92.7% was spent with an end tidal CO2 higher than 50.
Don’t know if seeing them will help answer the question.
No, nothing like that, that I’m aware. I don’t even know what that means! I haven’t spoken to a sleep doctor. Our pulm. doctor ordered the study. From there we were referred to upper airway and cardiology. I wish I knew what ‘non-apneic hypoventilation really meant! And why….the why would be most helpful!
I just don’t want to subject her to a surgery that won’t fix the problem! So hard to figure out the puzzles our kids are! My child does not have lung issues, other than asthma. She had PVCs on her study though. Also, they called Jaynie’s hypoventilation, non apneic. I’ve seen the aveolar kind in my research, but they haven’t really called Jaynie’s anything.
Kwstar,
I know how it feels to be written off as only having anxiety and depression. It has happened to me and worse, it has happened to my kids. My son is now 16 and the hardest thing still about the past is how doctors, teachers, principals, all wrote him off(and me) as overly anxious, an attention seeker, dramatic….I’ve probably heard them all, and most recently still for my 12 year old. It is hard, but there are people that care. Sorry I invaded your post, but since I was new too…
Anyway, hang in there and we wish you and everyone on here the best.
thank you, Barbara. I don’t think it has been checked either. I am going to start a list of questions to ask.
Has anybody connect vocal cord dysfunction to these illnesses? All four of my children have struggled with it. I always thought it odd that nobody wanted to connect it to anything.
Thank you for your reply, Dr. Diana.
One thing that occurs fairly regularly with us is increased intracranial pressure (but sometimes spinal CSF leaks can also happen, and the symptoms are not too dissimilar). If you have headaches, neckaches, nausea, dizziness, sensitivity to light, noise, movement, get motion sick easily, get a worsening of symptoms with Valsalva (straining),
If these are the symptoms you are referring, then yes, I would say she possibly has increased intracranial pressure. Just a few weeks ago, we left a party because the noise was too much for her and she said “giving her a giant headache.” Also within the last year or so, she has started complaining of getting car sick-even on short trips. She has had chronic headaches for many years, but again, within the last year or so, migraines with vomiting and visual changes have occurred.
She is on claritin/protonix, and to my knowledge has not had her B12 levels tested(unless I’m missing it under a different name in her recent blood work.) The cardiologist mentioned dysautonomia, but I watched your video about being careful not to call it that without more than just heart symptoms.
I’m really not panicked…but maybe just maybe…slightly overwhelmed 🙂 and want to be prepared to ask all the right questions to get her the care she needs. Also frustrated, based on all the new findings, that we have to wait until June to be seen by an EDS doctor, but that is my own fault.
Hi,
I am new to this site as well. I am 44 and was diagnosed with EDS in my 30s, which was cause to have all four of my children evaluated. Long story short, 2 of the four were definitely a yes, one was borderline, while the oldest showed no signs, but based on early history, it was thought she may have it too. She was and still is a competitive swimmer, which may have helped improve her loose joints. Sadly, when our geneticist left, I didn’t follow up with a new doctor and now deeply regret it as my youngest, age 12, is now having a lot of issues and is in bed instead of school as I type. I can’t get in with a new doctor until June, but some tests have been ordered. All of the above about her are true, along with many other things(PVCs,blood pressure issues,high carbon dioxide at night with no apnea or shallow breathing, food intolerance to name just a few.) Her MRI was actually ordered by her pulmonary doctor(she has had severe asthma as well since she was a toddler) and she admits she is not sure if a finding is significant. Here is the finding that confuses me. I will add, no signs of Chiari were found.A few tiny punctate foci of T2/FLAIR signal abnormality are noted in the juxtacortical and deep
white matter of the right frontal lobe and in the periventricular white matter adjacent to the atria
of the left lateral ventricle, a nonspecific finding. The brain parenchymal signal is otherwise
normal. There is no associated magnetic susceptibility to suggest prior hemorrhage or axonal injury.She is having a chart review Wednesday and I would like to be prepared. Do you know if this could be related to EDS in any manner?
