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kirafaesmom
04-03-2009, 04:15 PM
Ok, I've been avoiding posting, but I'm getting nervous. I'll try to keep it brief. Two weeks ago, we saw our neuro because of concerns with seizure activity/autonomic stability. Kira has significant autonomic instability which usually affects her core temperature control, blood pressure and heart rate. Recently added to the mix is respiratory rate. She breathes enough, but not deeply enough. Pulminology feels it's a central apnea issue. Neuro does as well and they couldn't believe pulminology didn't want a sleep study, so the neuro put in the referral. We do our initial consult on the 22nd of this month. Her sleep patterns have also become a lot worse. Even with meds she wakes up several times a night, and is now napping during the day (something she NEVER does). My source of nervousness? Kira's "new" baseline is a heart rate that often is now in the mid 50's. She hangs in the mid 60's-70's when awake, but asleep she often is in the 50's. Prior to the last month, the only time she had dropper her heart rate that low was when she had a significant drop in blood pressure. Her blood pressure seems to be at a bit of a lower baseline as well.

At what point (how low) do I get beyond a little nervous? We are praying that this is actually a sleep apnea issue, because THAT we can do something about. She already has so many central nervous system issues. We are concerned that her brain is further de-regulating, and there's simply nothing that can be done about that. I don't want to push the panic button if it's not time; and yet I don't want to put her at further risk by not insisting she be seen sooner. We are already on the "call if anything sooner" list.

Please, someone tell me I'm being a worry wart over nothing......

JWorthington
04-03-2009, 04:26 PM
oh my Michelle, I can understand your being worried. I don't wish to make light of this, but as children grow their heart rate when sleeping does drop. Sam suffers with cardiac arrythmias and is on medication to control this, but his heart rate fluctuates quite a lot and is regularly in the 50's when he is sleeping

I hope you get some answers.

Julie x

llwilliams8
04-03-2009, 05:36 PM
My daughter is an infant so her heartrate is about 140-160 when she is awake and when she goes to sleep it goes down to 120-130. She also has central apnea. Sorry, I'm not much help but just wanted to let you know her heartrate decreases with sleep as well. We are told to not let it get below 100 for an infant or above 200 so there is a big range inbetween she can set at.

Ainsley's Mom
04-03-2009, 09:35 PM
I wasn't going to reply because I really have no idea those medical conditions. But since you are looking for reassurance I hate to thinking of you worrying because few people have replied. So here's my thought after re-reading. Kira is new to the trach, right? So perhaps the lower heart rate is because she is breathing easier and her heart doesn't have to work as hard? But maybe at the same time she is a little uncomfortable with her new breathing style and she's waking because of that? And needing the naps because she's waking at night and then waking at night because she's now taking naps. Get the picture? I do think you shouldn't worry yet. But I'm glad you have appointments scheduled just to be sure.

kirafaesmom
04-03-2009, 10:20 PM
Thank you.....and I agree with Susan and Julie; I think it's a combo of her simply not needing to work as hard and her getting bigger. I spoke with the triage nurse for our primary, and she is going to have our primary call me with some guidelines. I will be very glad to get this "silly" sleep study done so we can put to rest the issue of the apnea..one way or another. I was relieved to hear that there are other kido's that do fine with a heart rate in the 50's. Everyone here, including her nurses all kind of freak with it that low. So, I was actually looking for reassurance for not only myself, but her other care providers as well. I wish I could get her days and nights switched back around, but am VERY thankful that I have night nursing every night! I will admit to a bit of paranoia; having been home for 2 months is the LONGEST stretch in a very long time. Sometimes I think I'm seeing shadows that don't exist. The road we have travel with Kira has always been filled with potholes; I'm just praying to navigate with grace and some sanity intact.

Gretchen(Celia's mom)
04-03-2009, 10:30 PM
ITA with the others.
I completely understand where you are coming from though because Kira is so complicated you don't know what is related to what and what is seperate from what. It is so hard!!
:hug:

cherienz
04-04-2009, 06:21 AM
Hi
Hope you have checked again with your doc by now, but on our chart (from the hospital) it says that NORMAL heart rates for toddlers (2 years) are 80-110 (awake) and 60-90 (asleep), then preschooler 70-110 (awake) and 60-90 (asleep), school age 65-110 (awake) and 60-90 (asleep).

Having said this, with Mitchell's heart we have his alarm set to go off at 50 for sleep (ie. still 10-15 below the range). For us, he will dip down to 50 and just below sometimes on the hour, with his sleep pattern (identified in the sleep studies too), BUT, the docs are only concerned for him if he stays down. NOW, he is on medication and rarely dips below 60. BUT, I always used to get really scared because we had always had this child whose heart rate was like 200 (when first born) and still in the high 180s for ages, going a bit lower asleep but NEVER in the range. So all of a sudden, we were "average" and going low and it was scary!! Just keep on with your specialists because your gut instincts usually tell you something.
Cheers Cherie

kirafaesmom
04-04-2009, 11:52 AM
Hi
Hope you have checked again with your doc by now, but on our chart (from the hospital) it says that NORMAL heart rates for toddlers (2 years) are 80-110 (awake) and 60-90 (asleep), then preschooler 70-110 (awake) and 60-90 (asleep), school age 65-110 (awake) and 60-90 (asleep).

Having said this, with Mitchell's heart we have his alarm set to go off at 50 for sleep (ie. still 10-15 below the range). For us, he will dip down to 50 and just below sometimes on the hour, with his sleep pattern (identified in the sleep studies too), BUT, the docs are only concerned for him if he stays down. NOW, he is on medication and rarely dips below 60. BUT, I always used to get really scared because we had always had this child whose heart rate was like 200 (when first born) and still in the high 180s for ages, going a bit lower asleep but NEVER in the range. So all of a sudden, we were "average" and going low and it was scary!! Just keep on with your specialists because your gut instincts usually tell you something.
Cheers Cherie
Thank for weighing in Cherie. I've felt for MONTHS (and through about 6 hospitalizations) that there's something going on at night that just isn't being addressed. We are finally on the right path so we'll see what the sleep clinic has to say. At least we'll be in with the proper pulm......the one we saw was less than helpful. My biggest problem is that my Mommy Gut has been going off but it just isn't specific enough!

T-bone
04-04-2009, 03:05 PM
Have they ever tested her for Central Congenital Hypoventilation Syndrome?
My daughter has this. She pretty much stops breathing while she sleeps. It is different from apnea in that her brain just doesn't register high CO2 levels and low O2 levels. But the moment that she wakes up she starts to breathe.
This past summer she had surgery for a pace maker. With CCHS research showed that at times these children heart rates will dip and the PM is needed to kick in. Abby's PM has kicked in a few times and it is set to go of when her HR gets to 60. Her PM will pretty much only kick in when she is asleep, as this is the time that she will have these episodes. CCHS is like a faulty wire and it affects breathing and HR. Abby doesn't exhibit the temperature control issues but other children with CCHS do. There is now a test that can be done for CCHS.

tess

kirafaesmom
04-04-2009, 05:20 PM
Have they ever tested her for Central Congenital Hypoventilation Syndrome?
My daughter has this. She pretty much stops breathing while she sleeps. It is different from apnea in that her brain just doesn't register high CO2 levels and low O2 levels. But the moment that she wakes up she starts to breathe.
This past summer she had surgery for a pace maker. With CCHS research showed that at times these children heart rates will dip and the PM is needed to kick in. Abby's PM has kicked in a few times and it is set to go of when her HR gets to 60. Her PM will pretty much only kick in when she is asleep, as this is the time that she will have these episodes. CCHS is like a faulty wire and it affects breathing and HR. Abby doesn't exhibit the temperature control issues but other children with CCHS do. There is now a test that can be done for CCHS.

tess
Thank you Tess! Not only has she not been tested, I have never heard of it before! I will be doing some research of course (ok, lots of research). Just by the little bit you described, it certainly is worth checking it out as it pretty much fits Kira to a "T".

T-bone
04-04-2009, 05:40 PM
There seems to be also some issues re. when the kids go for a BM and they have to push hard their blood pressure falls and they pass out. Again, Abby doesn't have this but it comes from the same parts of the brain.

CCHS ranges in severity. Abby is a 20/27 and that is at the low part of the high end, if that makes sense.

Good luck.

Tess

Momof2NC
04-15-2009, 08:26 PM
we've been awaiting the connection of my 12 mos. old son's disorders. By chance the cardiologist picked up on something with an event recorder and referred to a larger facility. There the dr. picked up on CCHS immediately. We're awaiting about whether the genetic test is confirmed and if he's going to need a pacemaker. Any advise from parents that have had this since birth and where they're at now would be fab-u-lous!

angelamclamb
05-12-2009, 09:51 AM
Ok, I've been avoiding posting, but I'm getting nervous. I'll try to keep it brief. Two weeks ago, we saw our neuro because of concerns with seizure activity/autonomic stability. Kira has significant autonomic instability which usually affects her core temperature control, blood pressure and heart rate. Recently added to the mix is respiratory rate. She breathes enough, but not deeply enough. Pulminology feels it's a central apnea issue. Neuro does as well and they couldn't believe pulminology didn't want a sleep study, so the neuro put in the referral. We do our initial consult on the 22nd of this month. Her sleep patterns have also become a lot worse. Even with meds she wakes up several times a night, and is now napping during the day (something she NEVER does). My source of nervousness? Kira's "new" baseline is a heart rate that often is now in the mid 50's. She hangs in the mid 60's-70's when awake, but asleep she often is in the 50's. Prior to the last month, the only time she had dropper her heart rate that low was when she had a significant drop in blood pressure. Her blood pressure seems to be at a bit of a lower baseline as well.

At what point (how low) do I get beyond a little nervous? We are praying that this is actually a sleep apnea issue, because THAT we can do something about. She already has so many central nervous system issues. We are concerned that her brain is further de-regulating, and there's simply nothing that can be done about that. I don't want to push the panic button if it's not time; and yet I don't want to put her at further risk by not insisting she be seen sooner. We are already on the "call if anything sooner" list.

Please, someone tell me I'm being a worry wart over nothing......

OMG! I thought I was going crazy..lol The docs didn't believe me in the ER when I took Jonathon in earlier this week cuz I noticed his HR had dropped below his baseline. We also noticed his body temp was lower as well. He was always the "hot natured" one. His baseline was the norm for kids, ya know, awake- 100-115bpm and asleep 60-90bpm and now suddenly he is asleep= 40-50bpm and dipping into the 30's but pretty much hanging out at 40-50bpm and awake seems to be 60-90bpm. BP is lower as well. Docs ran test after test and couldnt find a cause. If he had always been lower than the norm it wouldnt be a concern but this is so sudden. I swear it was a fall he had on April 22nd where he slipped and hit his head pretty hard that seemed to trigger this. He seems so drowsy during the day but I listened for a very long time last night and repeated over and over and never once did I hear a pause in his breathing. They sounded the same as before and his sats remain high (98-100). I also noticed that he went from BM's regularly of 2-3 times a day to suddenly going several days before having a BM. They are the same consistency, active bowels etc. All of this since the fall he had. CT Scan of head was normal as well. Could a fall cause this and where do I find more info? At least now I feel better just knowing that we arent alone in this!

kirafaesmom
05-12-2009, 12:46 PM
I was waiting until we get results to update this thread, but am feeling an update now is in order. Since the last post, we have been hospitalized for what turned out to be increased sezuires/autonomic instability. We did a modified sleep study at that time (last week) and it did show central apnea and immature breathing patterns. We go tonight for her comprehensive sleep study. I'm really rather nervous. I think there's more going on than the pulmo realizes (he said he wouldn't vent based on the first sleep study). She was SO far off her baseline during that study, I was surprised ANYTHING showed up, and yet it did. Since coming home from the hospital Thursday, she has returned to her normal whacky baseline with one "fun" addittion. Last night the nurse had to bolus her 100cc an hour for a total of 1200 cc just to keep her blood pressure up over 70/30. It would seem that it's not just illness that kicks the autonomic instability into high gear...it's now (or maybe always has been) the increased seizure activity as well. Hopefully tonights study will help us determine the order of the cart and the horse. I would dearly love to stop this cascade of events we are in.

angelamclamb
05-12-2009, 01:23 PM
Does her sats drop at night? My son's stay high but has the other issues you mentioned and his EEG showed no seizures. No one can figure out why this is happening with no other apparent illness such as virus or bacteria going on. Is it the just the autonomic instability that causes the HR, BP and core body temp to drop from baseline? I guess I am using you to figure out what is going on with my son as well. Docs have run test after test and are clueless. We have been back and forth to the hospital, been in PICU etc and no results to clue us in on the abnormal HR, BP and core temp drop. I am once again heading back to the ER to demand more testing. Oddly we as his parents feel like it was a fall that resulted in a hard knock on his head that started this. He hasnt been the same since but CT Scan was normal. Is her BM's different than before too? PLEASE HELP! I am thinking a vagus nerve compression/damage from the fall, occlusion in an artery or vein resulting from the fall and a blood clot. It's something...we know that, but I am so ready for him to be the active, cooperative boy he was before the fall. Any thoughts anyone? Kira's mom can you answer when you get the chance? I am heading out with him shortly and will take my laptop to check in when I can for your reply or anyone else's. THANKS SO MUCH!

JWorthington
05-12-2009, 02:32 PM
:hug: Hope all goes well tonight Michelle and you get some answers

kirafaesmom
05-12-2009, 02:42 PM
Does her sats drop at night? My son's stay high but has the other issues you mentioned and his EEG showed no seizures. No one can figure out why this is happening with no other apparent illness such as virus or bacteria going on. Is it the just the autonomic instability that causes the HR, BP and core body temp to drop from baseline? I guess I am using you to figure out what is going on with my son as well. Docs have run test after test and are clueless. We have been back and forth to the hospital, been in PICU etc and no results to clue us in on the abnormal HR, BP and core temp drop. I am once again heading back to the ER to demand more testing. Oddly we as his parents feel like it was a fall that resulted in a hard knock on his head that started this. He hasnt been the same since but CT Scan was normal. Is her BM's different than before too? PLEASE HELP! I am thinking a vagus nerve compression/damage from the fall, occlusion in an artery or vein resulting from the fall and a blood clot. It's something...we know that, but I am so ready for him to be the active, cooperative boy he was before the fall. Any thoughts anyone? Kira's mom can you answer when you get the chance? I am heading out with him shortly and will take my laptop to check in when I can for your reply or anyone else's. THANKS SO MUCH!
Yes, her BM's are different now; and yes; we have been told for a very long time that the changes in her core temp, bp and hr are all due to autonomic instability. Ironically, we KNOW Kira has a significant and debilitating seizure disorder, but do you think we have EVER been able to capture any seizure activity on an EEG? NOPE! We KNOW that what we are dealing with is autonomic dystonia; however, now we are hoping and praying that we find a "why". Tonights study hopefully will shed some light. It's my understanding that hypoventilation can actually be the culprit for some, if not all of what we are dealing with. Oh...and no...she doesn't drop her sats. Rarely anyway. She seems to go through cycles with it and will go weeks if not months without any sat drops when she sleeps; then she'll decide it's time to drop every time she's asleep. I hope we get some answers...for our sakes and maybe even yours. oh....during her preliminary sleep study, she did actually show apnea on their monitors when there were NONE on the main hospital monitors; she also showed drops in her sats that didn't show on the main monitor. I would seriously consider requesting a sleep study to determine if your son has any apnea/hypoventilation issues going on that could be contributing to his instability. I hope you start getting some answers...and if you do...pass them on!

Angela
05-12-2009, 05:43 PM
Always trust your "mommy's instinct". I would defentitly look into the Congential Hypoventilation Syndrome. How has her seizures been?

It's ok to keep you finger on the panic button, when you have one problem after another it's hard to take your finger off the panic button.

Angela-Mom to Jacob and Meghan, Williams Syndrome, trached 10/07

kirafaesmom
05-12-2009, 06:51 PM
Her seizures are much better controlled since returning home from the hospital on Thursday. The Pulmo believes she has Central Hypoventilation Syndrome...what we don't know is to what extent. In her case, it's not caused by a mutated gene, but from her abnormal brain (from a car accident at 20 weeks gestation). Tonight's sleep study should/hopefully tell us if a vent is needed/beneficial.

Angela
05-12-2009, 09:44 PM
I will keep both of you in my prayers. I am glad to hear that her seizures under control. Hope all goes well tonight and try to stay strong and hope for the best outcome for Kira.

Angela-Mom to Jacob and Meghan, Williams Syndrome, trached 10/07

angelamclamb
05-13-2009, 03:02 AM
Michelle,

Thank you so much for answering my questions! I hope you get some much needed answers tonight as well. Oddly enough I listened to Jonathon earlier and he had several episodes where he quit breathing and the longest stretch was 8 seconds then he went into the fast pace short breaths, well, like hyperventilating now that I think about it. I hope to have the pulmo schedule a sleep study quickly just to make me feel better about all of this. Thanks again and I am praying that you the answer you need. :hug:

MRSJOH
05-13-2009, 09:23 AM
I can only say that Jasper will go down low sometimes, 50-60s , but he is a cardiac baby and has a host of heart stuff going on as well as being on meds to help with a rapid heart rate... (svt) but dr's are not concerned with it, said it is ok as long as he tolerates it which his body does. Jasper does seem to do a lot of things his own way, and they said well that's just him being him.

angelamclamb
05-13-2009, 03:38 PM
I can only say that Jasper will go down low sometimes, 50-60s , but he is a cardiac baby and has a host of heart stuff going on as well as being on meds to help with a rapid heart rate... (svt) but dr's are not concerned with it, said it is ok as long as he tolerates it which his body does. Jasper does seem to do a lot of things his own way, and they said well that's just him being him.


I agree..if Jonathon's new baseline was this lastest BP, HR etc and he was still playful and just being his typically self then I wouldn't be concerned at all. I told the Cardiologist this morning the same thing, however he isn't tolerating the change. He is drowsy, uncooperative, uninterested in any play or activity that makes him get up and move around but in general unfocused and dopey looking. He seems very weak. That is enough to raise a red flag and there has to be a cause for this abrupt change. If he were to be having sleep apnea which is causing this at least it can be as simple as using a CPAP when asleep. I am crossing my fingers and toes to find an answer...I want my little boy back! So far labs for what seems like everything under the sun has come back normal so we are looking now at having a sleep study that may shed some light on things. I feel like I'm gonna pull my hair out...I am going to fall out from sleep deprivation myself..just put a bed next to Jonathon's crib in the cardiac unit. :(

With that thought since he is napping...I will go do the same.

Michelle....just thinking of you and Kira and hope you get some answers too!

Hope
05-13-2009, 03:51 PM
Praying for you -- hoping for answers!

Hope

kirafaesmom
05-13-2009, 04:13 PM
Well....it doesn't appear that answers will be forthcoming. We don't have the official read, but the tech didn't see much at all. We see the pulmo in a week to go over results. About the only thing remotely notable were CO2 levels that remained at 40..but that's not all that high. I am have total faith in this doc...I know he'll look at Kira as a whole and not just as "numbers" and how they apply to a "normal" child. I'm taking the last week's nursing notes with her heart rate, blood pressure and temps. I'm hoping to at least have a doc that is willing to step up and help me navigate this autonimic craziness. Kira is SUCH a stinker. She of course was NOT at her baseline at all last night. The MOMENT I layed her in her bed, she snugged in and smiled and promptly fell into her real sleep. Little imp.

angelamclamb
05-14-2009, 12:43 PM
Hi Michelle, so how is Kira doing now? Are you still having problems with that lower and low BP? I have been thinking about you guys. I have a few more questions too.

How long has the decreased body temp, BP and HR been going on? Does she have any problems with respiratory rate? Oh and has Kira seemed more drowsy/sleepy since the start of the dropping in the BP, HR etc or does she seem fine otherwise?

Lastly, has there been any changes in eating habits/enteral feeding (wasn't sure if she ate by mouth or gtube)?

Jonathon's glucose has been going crazy from being low during the day and way too high at night. So the docs want to get a handle on that as well. Jonathon's docs agree with me that if his baseline HR and BP were now just going to be it would be fine, BUT it is affecting him so there is something going on.

Thinking of you!:hug:

kirafaesmom
05-14-2009, 01:24 PM
Kira's well.....being Kira. Her BP seems to be settling back into her "normal" lows of low 70's/40's. The decreased body temp really became an issue after a hospital stay with a double pneumonia and intractable seizures in 2004. The next issue was her BP, and that changed in 2006 after another round of pneumonia/intractable seizures. Her next de-regulation was her heart rate, which I saw start to go "wonky" in October of last year. We had 6 hospitalizations between October and January of this year...during which time we saw a definite de-stablization of her respiratory rate. This may give you the sense of her "road"...and why I've become more and more concerned with what appears to be her inability to hold it all together. She does have periods of time that she is much more drowsy. During that October to January stretch of hospitalizations, we had SIGNIFICANT issues with her feedings (enteral). In fact, we literally spent from Thanksgiving through to Christmas Eve running every test imaginable to figure out what was going on with her GI system. The general consesus was that it wasn't her GI that was the problem at all. She was having repeat aspiration events that either led to full blown pneumonia, or pnumonitis. That's what led us to the decision to do the seperation/trach..to protect her from the constant aspirations. Now, did that change her overall stability? YES...in a huge way. I truly don't think she'd still be with us if we had not done the trach. I am convinced that her breathing patterns are indeed a contributing factor to her current instabilities. I also think that it's not "bad enough" right now to intervene..but we'll see what the pulmo has to say next week. It's interesting the piece about the glucose....Kira did have a time post-op with her bi-lat hip surgery that it was an issue; I think I'll ask our primary about doing some spot checks to see if there's any link there. I really hope you start figuring things out on your end; I know how frustrating it is. Oddly enough, I am actually really at peace with where we are now....I know the pulmo we have is looking at ALL of Kira; not just "his" specialty and will be able to guide us in the right direction. It took a while to get to him though....many, many miles of frustrating pacing worn into the carpet.....

Angela
05-14-2009, 06:22 PM
Happy to hear she is doing alright and that you are at peace with how everything with Kira is going. We too have been in and out of the hospital 6 times since october for illness and central line issues due to the fact that she no longer has functional use of her digestive system. No one is able to give us answers as to what is happening to her, except rapid degeneration. It is very frustrating to one day we were able to sit around the table and eat as a family to g-tube (lost stomach motility) then she went to g-j tube feeds (developed chronic diarrhea and malabsorption disorder) and now she is totally TPN dependent. I too feel that we would not have Meg right now if she was not trached when she was. Every day is very precious. Hope pulmonary is able to help answer some of your concerns.

Angela - mom to Jacob and Meg, Williams Syndrome, neurodegeneration, trached 10/07

angelamclamb
05-15-2009, 12:20 AM
I will apologize in advance for grammer here but I am working off of 3 1/2 hrs sleep in 4 days and I am one cell away myself from being in a bed next to Jonathon. Hubby is with him tonight at the hospital so I can try to get some sleep, however I keep beating myself up over every little thing. Until this episode Jonathon has not been hospitalized in 3 1/2 yrs except for just routine bronchs and I feel like I did something so wrong and just cant stop crying tonight. I know I did what I thought was right based on what I was told by "professionals" but I cant help but feel like I should have done more and we wouldnt be were we are at today, he wouldnt be in the Cardiac Intensive Care Unit. I do realize that my emotions and feelings are affected much by sleep deprivation which makes me very tearful. I just gotta have my sleep to function wholely.

Michelle, I wanted to say that I dont want you to think I am highjacking your post but just trying to help both of us and others for that matter that are going through the similiar. Okay? :hug:

So with that said I came up with a theory and when I did finally get away from Jonathon's crib and to my laptop I felt relieved to say the least to find my theory was validated and true. I have always been told that I look "outside the box". I guess thats why God chose me as his mother!

I feel so rotten to say this and have cried so much since being home and still try to hold back the tears as I type as I seem to blame myself for Jonathon's recent issues. I looked back over a period of time and thought very hard about dietary changes, stressors for him etc. I then realized that I, of all people, of all mothers....who strive for the best for him and fight for his rights and speak what he would want me to say for him, find that I listened once again to someone else "a nutritionist" from great childrens hospital tell me that it was okay to place Jonathon on Nutramigen until his Neocate Jr sample would arrive in the mail and we could see how he tolerated it. So back-tracking he has been on a concoction that I developed that consisted of donor breastmilk, kefir, one fruit, one, one veggie and one meat for the past year and a half. I also gave Jonathon Magnesium, Cod Liver Oil, Super Greens and a multi-vitamin/multi-mineral supplement daily. Considering that CHARGEr's have short stature he had grown 3" in the past yr! So I knew my research had paid off and he was on the right track. BUT then Medicaid had to throw a dang wrench in it by refusing to pay for the donor breastmilk any longer for his medically fragile body just because of his age, he's 4. So I consulted with a Nutritionist who wanted to try him on Neocate Jr due to his numerous food allergies. However, I only had so much breastmilk left in the freezer and we were running out of time for a smooth and slow switch to something else. So she requested the manufacturer send a couple cans of Neocate Jr for samples to try his tolerance and digestability. I waited, she waited, calls went back and forth and it was taking forever to get the Neocate samples. I could easily get Nutramigen for him in the meantime so we decided to place him on Nutramigen, a hypo-allergenic formula, in while we waited for the Neocate Jr. I did just so but found that I didnt have enough breastmilk to make a slow transition but more abruptly that I would have liked. She told me to mix it as directed on the can since it shouldnt, at this point, be more than a week before getting the Neocate Jr. We then find ourselves, 3 weeks later finally receiving the two cans of Neocate Jr. That was last Tuesday when they came. I immediately read the ingredients to be safe that I didnt see anything listed that he was allergice to. So I place him on it right way since even the Nutramigen was making Jonathon break out in spots, not hives, but red spots all over. (it has soy in it and he is allergic to soy!) So with his HR, BP and body temp way below his "norm" I took him to the hospital ER when I noticed his HR was in the 30's with many stops and starts, skipped beats and arrythmyias. After a few days in PICU and cardiac work-ups alon with Neurology stuff they had no answer for his being lethargic and the cardiac issues. He only had a few Premature ventricular beats but was of no real concern. He was discharged after 3 days from PICU per my request. Two days later we are at another hospital much further away but they know him AND ME! They know I dont cry wolf and I know every inch of Jonathon, inside and out. So here I was driving along the interstate with traffic backed up for miles due to a wreck and my head was going a thousand miles an hour. I looked back on the first noticeable sign that something wasnt right and went from there. That's when I had my "ahhhh haaaa" moment. I came up with my own theory of the cause of his recent abrupt change. It was the Nutramigen. This was an infant formula....he is not an infant. With that said we were not expecting for him to stay on this formula more than just a few days, but it was 3 weeks. Just enough time for him to be malnourished...that's right....the answer was malnutrition! I thought to myself how kids can adapt to change much more easily that adults and how if he went from receiving, "XX" amount of calories to just "X" amount of calories then we may get results for electrolytes as normal since he was well hydrated but he was missing the carbs/proteins for growth and energy. So during this drive to the hospital I came up this question...I wondered if a child that was requiring more carbs/proteins (calories too) than the current formula, then maybe he wasnt getting enough nutrition and his body compensated for the lack of carbs as in "energy" bydownshifting to almost a reserve status or like a hibernation mode as a way to use less energy. The brains way of holding on to what it currently has without burning more than it possible had too or can afford to. Just like a defensive/survival mechanism. The brain would lower BP, HR and core body temp in the attempt to use less energy since there was a lack of carbs/proteins for energy consumption. Simply the brains way of saying, "hey, I need more food for fueling my body and since I am running on low fuel, lets just not burn up anymore than we have to at this point. KWIM? I informed the ER doc of my theory who quickly cut me off mid-stream to tell me it was impossible for that to happen. (idiot docs!) Soooo, after admission into the Cardiac Intensive Care floor I attempted to explained my theory in great detail to the attending physician and he was more open minded. We immediately started him on Neocate Jr in the hospital at 30k/kal an ounce and we noticed within 24hrs his HR, BP and temp started changing and moving back up and closer to his baseline. I finally had a chance last night to do some research on my thoughts of under-nourishment and found many articles that were exactly as I had theorized. It is most certainly possble and common for one's body to do as Jonathon's did to save energy and it is well documented as well under malnutrition/undernourishment. So now we are on day 3 early morning of meeting his caloric, protein and carbs and he is pretty much back at baseline. With a few other setbacks. He is now having some serious problems controlling his glucose level. He is checked every 4 hrs unless checked sooner if we notice behavioral changes. He is running low most of the time(hypoglycemic) to running high in the weeeee hours of the morning. He is dopey and listless at lower ranges and the lowest was 30 which I immediately gave him 2 oz. Pepsi to slowly raise then followed by Neocate Jr for the carbs to prevent that increase in insulin so quickly he rebounds again. Like a big high and then a drastic drop back low. So now I am taking one night off to get sleep and here I am! He is low most of the day and his high is usually around 240. (He is almost comatose at this point, but I did notice a pattern) He would go from giddy and laughing for no apparent reason, to combative which he never was prior to lethargic and dopey looking.

With all that said, I wanted to ask if there was any dietary changes recently in regards to Kira or any sadditional stressors that would possibly make her more burn more calories? She may be requiring more calories/carbs/proteins that currently given and thus causing the same cardiac symptoms as Jonathon. I am grasping at straws here! Jonathon is doing better today but the docs are trying to find a way to contol his glucose. I also read that for anyone to be malnourished the symptoms are those our kids are having along with bowel issues like the decrease in BM;s and the next phase would be breathing/respiration issues followed shortly by death. SCARY!

Michelle I shared this with you (and others) so that if this helps one child, then it was worth all the typing with such a fogged brain of VERY LITTLE sleep. So it would be worth a shot if you want to try it and give Kira more carbs and proteins and see if there is a difference in a few days. It would make perfect sense that the body self-adjust to vitamin/mineral defiency in order to survive longer. I am praying that the answer to Kira's recent problems would be so simple to correct as Jonathon's was.....now to battle the glucose issues which I found to be very common as well with undernourishment. I would hate myself if I didnt share and possibly save a life or just make it somewhat better. I say, "what would you lose for attempting?" But what could you lose if you didnt?

Glucose issues are also a problem and apparently self regulate at some point after nutrition is re-established. I will be more than happy to post the links to the sites about all of this.

One more thing before I head to bed...is if she has been on abx many times that you may want to consider giving her probiotics like kefir (you can do this at home cheaply) and enzymes to help her assimulate and absorb the vits/minerals that is is getting. I always say, "Heal the gut and you will heal the body". The gut seems to be cental nervous system and if it has bacteria overgrowth then that person can be fed or eat numerous nutritious meals and only absorb very little from it. I have Kefir grains I would love to give to you if you were interested. Please read about Kefir and it's health benefits. (Kombucha tea is another) I am also fond of Apple Cider Vinegar! :hug:

kirafaesmom
05-15-2009, 12:21 PM
Wow...you guys really have been through the ringer! I'm so glad you took the time to share your story; I had been noticing (and even mentioned to more than one doc) that she was loosing weight. She has a chronic problem with food....always doing well on a formula for about 6 months...and then guess what, she stops tolerating it. We also have the significant challange in that she grows on air; it's sooooo hard to get her nutrition in but not have her HUGE...she's currently on 500 calories a day..yes, you read that right. It truly could be something as simple as she needs a "raise" in her calories. I'll speak with her feeding clinic doc and have her assess her current needs. Thanks for the heads up. Our last hospital stay, the docs totally poo-poo'd the whole food/calories idea as being a contributing factor. Sound familiar? I hope you are on the way to getting Jonathon stable and back to baseline....and can go HOME SOON!

angelamclamb
05-15-2009, 04:36 PM
We are home now! He is back to baseline now since he has been getting the correct nutrition for 3 1/2 days now. 500 calories is extremely low...geezzzz...Jonathon gets over 1200 calories a day and he is only 4yrs old and is 36" tall and we also have a hard time keeping the weight on him with his metabolic disorder burning up his calories too fast. It is tough feeding him with his stomach only being 100cc big and his goal is 1200-1400cc in 24hrs. So it seems like I am always having to tube feed him. He did have a hard time digesting formula at one time until we started the probiotics, enzymes, magnesium, Grapefruit extract etc. The GI actually said during the study yesterday when we were checking for reflux to make sure his Nissen was still intact that his stomach sure did move it fast and it was already entering his intestines before we were even done. I thought maybe it was since it wasnt something he really had to work at digesting and ask her about it and she said that many tube feeders have slow digestion due to impairments of enzymes, trauma from surgeries etc. We had a nice conversation about supplements and she wrote down what supplements Jonathon took for gut issues.

Here is a link for you about malnutrition I found when searching for an answer and I also wanted to say that seizures is also a sign of malnutrition but of course not in all cases though. I know people who have seizures but are not malnourished. lol

http://books.google.com/books?id=ZRXlZiuoLuUC&pg=PA868&lpg=PA868&dq=malnutrition+decreased+decrease+cardiac+bradyca rdia+blood+pressure&source=bl&ots=m3QJdogShf&sig=kJADdvDJtRmX7uQXaDOgXG5ak3k&hl=en&ei=SdsNSsa9HY7Dtwfdk_GRCA&sa=X&oi=book_result&ct=result&resnum=4

Look at this page and then page 755. You can search the article for keywords on the upper right.