Forum Replies Created
March 7, 2014 at 9:30 pm in reply to: high carbon dioxide at night? #4923
Good to hear from ya! Poor kid:( but yeah, if its a placement thing i could see why it will be beneficial.
Maris is doing sooooo much better! We have changed her b vitamins to methlyated form and added high dose vit d plus some others. Ion water. Balancing her eltrolytes. Slowly working on her diet…ugh. The protandim she takes is an awesome addition as well. Her feet are still a mess and she still malnurished but i think that will slowly change. The mouth is our next battle. We go to a orthodtist in couple of weeks. High palette and no room for her teeth!! Fun fun! Apr is her next echo so im really praying the vavles have not worsened. I think her next sleep study is end of apr as well.March 2, 2014 at 3:22 pm in reply to: Dysautonomia – Thirst #4912
Electrolite imbalance. Uncontroled diabetes causes extreme thirst for my dad. Low sodium is not good when you drink that much water. Basically “water poisoning”. Your body is rejecting the water because it has nothing to absorb it with.February 15, 2014 at 5:25 pm in reply to: high carbon dioxide at night? #4866
How did the appt on wed go?February 10, 2014 at 12:12 pm in reply to: high carbon dioxide at night? #4860
That is great! Never apologize for following your gut, to ANYONE! Keep pushing till they have done their job, to the quality/standard of a mother’s instinct. You will know when this happens.
By chance have they tried flovent/flonase to shrink things a little before they just went straight to, lets do surgery?January 29, 2014 at 6:32 pm in reply to: high carbon dioxide at night? #4826
Unfortunately i think we are:( i really thought her geneticists would give us the whole picture…which i guess eds is…cuz you cant really rule anything in or out due to connective tissue (collagen) is just about EVERYWHERE. Her test came back homozygous MTHFR A1298C and insufficient IgA 27 (rr 44-244mg/dl) but her food allergy test was pretty much none or very low…guess i have something to do tonight after-all. Research the puzzle!January 28, 2014 at 11:55 pm in reply to: high carbon dioxide at night? #4821
My guess would be the central sleep apnea even though it was only 2 would be a good indicator of cns/dysautonomic. That with the pv. Hypoventilation can also be lower airways due to asthma and lung diseases. Have you looked at congenital central hypoventilation syndrome? This was my d’s cardiologists suggestion to her pulm. He did not think this was the case…more to do with her trach and lung disease. Im not sure which one is right!!! I hate that they all work separately and just kkwwooo they are in the right! Electrolyte imbalance can effect both our girls sleep disorders. Thats what i have been studying lately. We go for her results tomrw. Ill let ya know!January 28, 2014 at 8:27 pm in reply to: high carbon dioxide at night? #4819
The why…could be blood flow, shallow breathing,low respiratory rate, some types of autonomic dysfuction caused from central nervous system ect. A build up of paco2 is the lungs not pushing the amount needed out. If o2 is normal, the body is properly oxygenated but is not properly ventilating out the toxic carbon out, which can lead to acidosis. Going to a card and pulm, neuro, or electrophysiologist would be your best bet. Im guessing a ent is just gonna wanna do surgery…What were her oxygen levels? Doctors on here feel free to add or correct me if i misspoke! Im just a mom who studies a lot!!!January 28, 2014 at 8:14 pm in reply to: high carbon dioxide at night? #4818
I think it means not caused by not taking a breath over a certain amount of seconds. Like sleep apnea.January 28, 2014 at 5:08 pm in reply to: high carbon dioxide at night? #4814
I hear ya! Our pulm and cardio did not want her having any surgerys right now. Her adnoids, tonsils, and uvula are all large…but a nasal spray everyday is helping enough for now. Shes on meds for reflux and adtrovent to hopfully help with the tracheomalacia plus pro-air, albuteral, and a ocapella device. Ist helping some. So i hope the next sleep study is better…just the low heart rate:) 38-45 at night:( scares me to put her to bed! I check on her all night! 55-60 is her resting hr. During day.we also put a ionizer in her room…its the freshest room in the house! Better be for the price! And sleeping on a incline. Did yours say anything about varying qrs?January 28, 2014 at 3:34 pm in reply to: high carbon dioxide at night? #4812
Yes! My 8 yr olds sleep study shown aveolar hypoventilation as well. She has bradycardia as well as many other lung problems. But her cardio was surprised by this as well, but pulm said it didnt surprise him…i love the puzzle analogy!!!December 14, 2013 at 11:51 pm in reply to: THICK, SPLITTING SKIN ON HANDS – OPPOSITE OF EDS #4661
Ouch!If you find anything that helps let me know! My hands do this, due to my O/C hand washing and work(stylist).My daughter’s feet do this around the ankles and bottoms of her toes…we have been using lanolin and it is working for now. Nothing seems to work for more than a few months so I’m always looking for new!?