Let me start with this:

I have a 2 year old son, Isaac. He goes to bed about 7:30-8:00 everynight, gets up at 7-7:30am every morning, is back in bed for a 3-4 hour nap at 9:30-10:00 everyday, wants to go back to nap at 4-5pm and goes to bed again by 8pm.  

Needlesstosay, I scheduled his pulmonology appointment for 9am, so that we could be done and he could take his nap at a reasonably normal time. We arrived at 9:07am (Thank you silly Detroit highway construction). At 9:45am, I asked what time we would actually be going in as Isaac was getting restless. At 10:15am, I asked again. At 10:25am, we finally got to back. They weighed him, which is easy, and then tried to measure his height. The nurse kept trying to force his legs together and to the back, and I kept explaining to her (amidst his screaming) that he can't stand with his feet together and that he doesn't like people to move his legs for him. After several attempts and Isaac crying incessantly, I talked her into measuring him on the laying down contraption. She then proceeded to take his pulse ox, which came back at 95% the first time (when he was reasonably calm) and at 97% when he was yelling 1 minute later. She also took his temperature. He was fussing for the first one that came back at 95.4 degrees Fahrenheit and then tried it again a minute later with him screaming again and it was 96.1 degree fahrenheit, but didn't seem concerned at all. I was not happy with these temps.  We then waited until 11am to see the doctor, who didn't want to hear anything I had to say, or listen to any of our concerns, and gave Isaac and I continuous frustrated looks because Isaac was crying uncontrollably (keep in mind that he is now 1 1/2 hours past due for a nap and hasn't eaten since bfst).

I am so angry right now with the office and that they seem so nonchalant about the whole thing and refuse to see the bigger picture. I think the problem for us (and I'd love to hear other people's experiences) is that because from the outside Isaac looks healthy as a horse, but on the inside is falling apart. However, because they are so accustomed to seeing children that are visibly far worse off than Isaac, they tend to discount his problems.

We see a pediatrician for the first time next week (we've been going to a family doc) and I am eager to hear his take on all of this..

Sorry I needed to vent...

Tiffany, mom to Isaac. Now 2 years old, and sleeping like he's less than 1.

I totally get that too. I decided a while ago that I cannot go to any specialty appointments without my father to back me up. It is unfortunate, but it is because he is a man and a bit older. Therefore, his fears must be justified, right??? Well, it always works. It helps the doctors to think that we are not just some over-worried parent. I hate it when the doctors act like that.

Last year, when Q's neurologist referred to to an orothopeadic doctor for braces, the doctor told me that there was nothing wrong with my child and that I was overreacting. Mind you, my father was not with me. Her PT referred me to a different doctor with a note of why she thought she needed a brace. When I took her in to see that doctor, he saw the problem but thought she would get better. This is after she fell so hard that she busted her eye and we had to file an incident report. He acted very nonchelant as well and compared her with other kids who couldn't even walk. (only my mother was with me at this appointment) but he decided to give me a benefit of a doubt and scheduled another appointment for two weeks. At that appointment, his attitude changed, he took it more seriously and provided a brace for her, which has helped her TREMENDOUSLY!!!! (yes, my father was with me this time) It is surely sterotypcial, a social construct that is built into our society. It is nothing that we can change except with time. It has gotten better, but women do still get a lesser deal than do men. (wages, opportunities etc...)

My daughter is a little girl who also looks to be healthy as a horse on the outside. She appears to be sociable and her weight looks ok. It is hard for me to get any doctor to listen to my concerns. One thing that I always do is to give them the symptoms, my concerns and emphasize that the reason I am there is to see if they can help in any way. Provide relief here, or an answer for this there. If they are not willing to help, i leave and find a doctor who is at least willing to listen to my fears and concerns. Even if it is to set them at ease, it makes all the difference in the world to at least be taken seriously!

As far as his body temp, if it was under the arm, i wouldn't worry too much unless this is completely out of the norm. I know that for my daughter, her under arm temp varies greatly, sometimes it is 94 and sometimes it is 98. when she had a 105 fever, her under arm temp only read 101 and her rectal read 105.3. That's a huge difference, i think.

I am so sorry that you are feeling so hopeless with the doctors. What is your next plan of action? Is the pulm doctor supposed to be treating his sleep apnea?

I hope that you get to feeling better soon.

-Sarah

My dh usually goes to specialist appointments with for those very reasons. For whatever reason, moms are just paranoid and overreacting, but dads are logical and less emotional, and with these two mental ruts, it is almost impossible to see some of our docs without him. Our neurologist is fabulous! He listens, asks lots of questions, and is willing to do some digging to get to the bottom of this. He will not allow Isaac to go under general again without just cause (hence the massive round of blood work before a muscle biopsy), because he saw him have episode after episode under sedation during an MRI, where his O2 was dropping into the very low 80s and his heart rate was hitting the 50s.  He knows Isaac has apnea, and wants to know why so that we have a better chance of beating it, but is also very cautious about the steps we take to resolve it.  Our family doctor is also wonderful, and when he felt like Isaac's needs were beyond what he could excellently care for, he referred us to an actual pediatrician.  Our problem is really with pulmonology. I think the real issue is more of a case of they see a healthy little boy (because they see REALLY sick kids all day, every day) on the outside and don't want to factor in the weird blood work, and his VERY slow growth (he's at 26% weight, but under 5% for height) to come up with a plan of action or course of treatment. It is really frustrating.

As for the temperature, his normal temperature under the arm is 97.2 degrees. On the rare occasion that is has been taken rectally, it has been 97.8-98.2 degrees. I was just concerned because I know that mito kids run significant risks of low body temperatures and issues with regulating their temperature.  DH and I have decided that we are going to start checking Isaac's temperature (rectally) before and after outside activity and every couple of days or so when he gets up and when he goes to bed. We have thought for the last 5-6 months that he has been having trouble regulating his body temperature, but don't have any evidence to support it, so here we go!

I am going to talk with his neurologist today, and insist that he NOT speak with pulmonologist because I don't want neuro contaminated with pulmo's attitude and perspective. I also plan to talk with our new pediatrician on Tuesday morning about pulmonologists to see if there is a pediatric pulmo that he likes to work with and would refer us to for a second opinion and ongoing appointments.

Isaac did have his first round of mito blood work done yesterday. I'll have results in a couple of days. It is the baseline bloodwork to configure the $!@# for Isaac until we can get the mtDNA done (we have to test 2 strains, I think). We see our new pediatrician on Tuesday and go back to neuro on June 16th. Hopefully, at the end of all of this, we will have some answers, and a better idea of where we go from here. I'd love to find out that he doesn't have mito, but we're not holding our breath on this one....

Thanks for the sympathy. It is appreciated. I'm ready for the mito board to be up again, so I don't have to vent about all of this on here...

Tiffany

Yeah, I ditto on the MITO board.

It's funny because the neurologist is the only person that I don't have a problem with as well and can take my daughter to without my dad. It is likely because she is a woman, but she is also very, very thorough.

Her GI doctor doesn't like her to go under sedation or general either. Last time she was under general, she had significant issues with her o2 sats after extubation and they were talking about actually reintubating her. Her last sedation required a hospitalization due to respiratory distress. And she has an adverse reaction to chloral hydrate.

She had blood work done for complexes I and II but that is it. I am hoping that the genetic/metabolic doctor that we see on the 3rd will consider doing more extensive blood testing for MITO.

I heard that MITO kids have issues regulating their body temp too. I am interested in what you find when taking his temperature :)

I got a question: my daughter recently had her sleep study. I saw the issues with her sleep and her o2 sats took many dips. they stayed low very often. Even the tech told me that she had issues with her breathing at night and that the doctor will call me to tell me what do. What do you suppose they will do? I don't think she will tolerate a cpap. She doesn't really snore much. Her tonsils and adenoids have never been enlarged but she often struggles to breathe and her nostrils flare at night as long as tracheal tugging. Do you suppose they will just put her on oxygen?

Tiffany--

I'm sorry that you're having such a struggle with the pulmo right now.  It can be very frustrating when you can't get a doctor to believe you when it comes to your childs symptoms.  Something that may help is for you to keep a diary of Isaac's symptoms, including temp, daily.  Take the temp at the same time of day (when he wakes up, after lunch or before bed....) and jot down anything that you feel is pertinent to the issues that he's facing.  If your neuro believes  you and is able to see that Isaac does have a problem with apnea, couldn't he be the one to talk to the pulmo?  If he knows that there are issues, he likely won't be talked out of that by someone who only met with you for a few brief minutes.  He may just be the advocate you've been needing.

Sarah--

My son is just a few steps ahead of yours regarding the sleep studies and results.  He went back in for a titration study and there was no way that we were going to get the mask on him for the cpap.  Even if he had the mask on, he wouldn't have done well with the air blowing.  Our next appointment is in a couple of weeks and I'm going to ask for a pulse ox monitor and oxygen as needed.  He's had the tonsils and adenoids removed and isn't a good candidate for more surgeries/procedures because he reacts to meds.  Other than the c-pap or removal of tonsils/adenoids, I really don't know of any other treatment besides oxygen.  It will depend mostly on what kind of sleep problems your daughter had (central/obstructive/hypopnea.....) and how severe they are.   We were given a mask to play around with for 3 weeks prior to our son's 2nd study and he never did get to where he would tolerate it on his face, or on anything special to him (bear, doll...).  

Ds's normal temp is around 97 as well (temporal scan).  Hugs to both of you.  I hope your weekend is a good one.

We already keep a daily log of the following:

Time he wakes up in the morning
What he eats for breakfast
What he drinks in the morning
What his activity level is during the morning
What time he goes down for his nap
What time he gets up from his nap (and any episodes we witnessed in the course of the nap)
What he eats for lunch
What his activity level is during the afternoon
What he drinks in the course of the afternoon
What he eats for dinner
What time he goes to bed
What his sleep was like during the night

We also keep track of his moods and any milestones he reaches (like today he recounted a story he has seen in both movie and a book about 100 times before).

We are adding the taking of his temperature during the course of the day (today it was 100.5 at 9:15am and 100.7 at 7:45pm). I like the idea of taking it at the same time everyday and think we might do it at wake up time because it will be the most consistent and the circumstances surrounding his temperature will always be the same, having just woken up from 11-12 hours of sleep.  Thanks for the idea! We are taking it rectally because that's how our docs believe you should do it for as long as they will let you. Isaac hasn't even fought with me yet. He just lays across me lap, pulls his knees up under him and waits the 10 seconds or so that it takes to get the temperature. We bought a Safety 1st rectal thermometer. It has orange around the display, in case you want to know. It will tend to read higher than an axillary temp, but is generally considered more accurate.

We can't wait for Tuesday to come around. Our neurologist is not going to talk with our pulmonologist because he doesn't care for him either. He told us to ask the new pediatrician and then to run any recommendations by him. We agree. One of the reasons we are also taking Isaac's temperature more often, is that we have noticed there is a trend of him seeming to be overheated and having more severe apnea episodes than when he is cooler. It doesn't seem to matter what he's wearing or how cool the AC is. He can get really hot.

Wow! This has got to be the thread with the longest back to back responses ever! Let's keep talking this one out and anyone who wants to join us on the temp adventure is welcome. If you would like to see the typical daily entry in Isaac's diary, then just say so and I'll gladly type it up for you! We'll talk soon...

Tiffany Acuff, mom to a 2 year old who eats more than he needs, but doesn't grow, has amazing cognitive abilities, but forgets to breathe, and gets all the necessary vitamins and minerals in the course of the day, and still has weird blood counts...I can't wait for someone to figure out this mystery!

Maybe, we can get keep responding to each other and people will start posting. there aren't too many pediatrics with sleep apnea, though are there? And most are cured with the tonsil/adenoid surgery

Shelee, thanks for the information and support. I think that when I *hopefully* speak with the doctor who interprets the results, depending upon what he says, I will ask him to skip the b/s and give her oxygen. I don't think there is any way to get her to tolerate a cpap at her age! Especially not this little princess. Tonsils and adenoids are out of the question for me, mostly because she doesn't not have enlarged ones, she rarely snores and she does not do well with general anesthesia. She has had a lot of work done on her and I don't agree with putting her through one more minor thing that may or may not help her out and that may come with very serious complications given her history. I feel strongly that tonsils and adenoids are not the issue and that if we do the surgery, she will either come out with more issues, or we will still be in the same boat, KWIM?

Tiffany, your log sounds great! I hope that it helps with the next pulmonologist. We don't do the log with my little girl. But it sounds like a great idea.

There are actually quite a few with obstructive sleep apnea, but there are very few with central sleep apnea. There is also very little research in the realm of central sleep anpea, which is what Isaac's problem is.

As for the log, it is actually for our neurologist. He wants to know what his energy levels and mood swings are like during the day, primarily. If it helps the new pulmo, then God be praised (very seriously) because I am almost convinced nothing will help pulmonologists, but we'll see. I try to be optimistic, but I am having a hard time with this one.

Isaac is down for his second nap of the day (it's 5:30pm) and will probably still be in bed by or before 9pm tonight (we're at church until at least 8pm, so normal bedtime is out the window. He also took a 2 hour nap at 12:30-2:30pm..

Anywho,  I hope everyone is doing okay. We are gearing up for our new pediatrician appointment on Tuesday, which is scheduled for 45 minutes!!

I agree, responding to the most helpful posts is a great way to keep them from getting drowned at the bottom..

Have a blessed day!   Tiffany

After almost a week of "good" sleep, my son is back to his old self and is again waking up crying hard several times at night.  He also is taking a nap during the day again, which he almost never does.  When he does fall asleep, he sleeps so light that the slightest sound or change in movement will wake him up.  Any thoughts??

Funny I should read this post after the night we had...Isaac woke up about 3:30am crying. Not his usual shrieking and thrashing and afraid, but weepy and sounding very much like a newborn (we call it the dino cry). I calmed him down and closed his door and he started again (3:35am). Ditto (3:40am). Ditto (3:45). Ditto (3:50am). I finally gave up and carried him into the living room and snuggled on the couch with him. He had his eyes open staring at me, breathing like he was asleep (complete with apneas), and completely limp (he had NO muscle control). It was kind of creepy. At 4:15am, I carried him back to his bed, got him a fresh cup of water, and walked away. He went to sleep about 5 minutes later. He fussed a little, but not crying...

Isaac sleeps pretty soundly, but if I know I'm going to be making a lot of noise, or we're at church and people walk right next to the nursery talking to people 100 feet away in another room, I try to put on the radio to anything (we use CDs, because they are consistent vs. the changing between music and talk). At Zeb's grandparents' house, we use a fan to to drown out the activities in the rest of the house. You can also get a white noise machine. Just make sure it goes loud enough.

I'm sorry you've had a rough week. We go see our new pediatrician tomorrow and I can't wait!  It also looks like p2p is almost ready to work again!

Tiffany

PS...I think sometimes Isaac wakes up in the night because he is thirsty. I would try calming him down and giving him a cup of water and see how he does with that...

Sam also sleeps with his eyes partially open....  ??  Odd.  Sorry you had such a rough night.  I can't wait to hear how it goes with the new ped.  Keeping my fingers crossed for you.  Let us know what you find out.  I'm also glad to know that the neuro shares your opinion of the pulmo...sorry, but glad that you have him in your corner.  

I've been going through withdrawals over the "lack" of p-2-p.  Hopefully they'll be up and running again soon.  It was good to see you there.  I hope one of the ladies on that board is able to answer your mito questions.  Hugs sweetie.

shelee, you're on P2P as well? What's your screen name?

we have been having really weird issues with Quinn's sleep the past couple of days. She has been having complete meltdowns at bedtime, scaring herself, screaming at the top of her lungs (which really isn't loud anyways). To avoid a 2 hour war, I have been just letting her lay down with me and go to sleep. It sucks because I haven't been able to get much done, but  I really don't know what to do about her new fear of bed time. Her therapist says that it is likely sensory, which is what I think it is as well. Very frustrating because I have never had to deal with this before. Last night, she didn't lay her head down until 1am. She has been incredibly fidgetty and won't let her body settle. She still sleeps the same though, but getting her down is tiring and ridiculous! She slept in my bed last night and she has slept in her own bed since she was a newborn. She has also been waking up early, like before the sun rises. I just tell her that it's not time to get up yet and she lays back down and passes out for another 5 hours or so. Please, tell me it comes with age.

-Sarah

I am a firm believer in kids knowing what they need. Isaac slept in our bed from birth until one night when he was about 9 months old. I genuinely believe that is the only reason he is alive now. He still hates to sleep with us, but there are nights, that only mommy and daddy will do. When he does sleep with us, it's always in the same position: Back to mommy (spooned) with both hands on daddy's chest and nose to nose with daddy. If Isaac has a particularly rough night, he is often fearful for a few days to go to sleep. It's almost like he knows that it is dangerous.

Do what you need to do to get some sleep and don't let anyone sway you.  If it's an issue, then maybe you can let her pick out a new pillowcase or sheets at the store to put on her bed, so that it's special to her. I've known parents that did this to convince there children it's time for bed and it's worked!

How old is Quinn? Would she tolerate being swaddled at all? Isaac is 2 years old and it's still the best way to calm him down or to get lab work done.

Hope you have a better night tonight...Tiffany

I agree with what Tiffany said.  Sam slept with me (or I slept on the floor/couch, whatever with him) until he was at least a year old.  We didn't do that with our oldest child because I didn't feel like she needed it.  She was in her own room and in her own bed at 4 months (which was an improvement over the play pen in our room) and did very well.  With our son however, I could tell that something was wrong but had no idea what it was.  It was more of a mommy instinct, I guess.  I went against what all of our friends and some of our doctors said.  He nursed until he was 20 months old.  I was told to put him on food but I knew that he was having issues.  A year later we found out that he was allergic, not just intolerant, to almost all foods.  The doctors are backing me up now.  I also believe that having him sleep with me kept him alive because my breathing triggered his breathing (which was very shallow and slow).  Don't do anything dangerous, of course, but you do know your child better than anyone else.  Follow your gut feeling.  Things usually do get better, at least you should begin to find answers for why he is the way he is and what is causing these problems.  Does that make any sense??  Since Sam received all of his diagnosis' we are more at peace with him in general (as far as health goes).  It always seems to help to know what you're fighting.  Hugs sweetie.  

Everything that you described with Quinn could be something that she will just grow out of.  It could be as simple as growing pains, or it could be something more complex like the sensory issues you'd mentioned.  All I can say is to hang in there.  Love her, play with her, try to forget how tired you are....  Find things to laugh about together...maybe go for a walk to help her settle down before bed time....  ??

GREAT NEWS!! The Mito Board is back!!!!!

Tiffany