Hopefully On The Mend???

Well today has been a much better day around here. I have still been sleeping out on the couch with A at night but think that tonight he may be okay to go back into his bed and me into mine! He is still very congested sounding and I have him on a half litre of oxygen, sometimes bumping it up to 1litre.

Okay, I have to say thank you to all of the moms that have watched my video and given me their opinions. I have to say that it really varies from person to person! I have four moms saying that it looks like a seizure, I had two say it looked reflux related and a few others that said no to a seizure.

Here is why I do NOT think they are seizures. He spent 227 in the NICU before coming home on oxygen, g tube feeds and an apnea monitor on Jan23’06. The day after coming home he had one of these “spells”. (He had probably five in the NICU) Within the next four days he had a total of 7. He was readmitted and ended up in the PICU on a vent. He continued with these spells even on the vent. At one point they even called a code blue because he was going so low in oxygen sats and heart rate.

***These spells that occur, he drops his sats to the 20s along with his heart rate. He goes completely off colour, there is no chest movement and he goes stiff. There is no way to get air into him…when they would bag him it would just pop off.***

They diagnosed him with ALTES-apparent life threatening events due to reflux. They then changed his g tube to a gj tube. On Feb23’06 he came home again. He went all the way until July’06 and had two spells in one day. We just happened to be doing an oxygen trend and his sats were 23 and heart rate of 42. Took him to emergency but they didn’t do anything.

He went all the way until April 4’07 when he had another one. Then June 13th’07 another one. This one was at a hospital that has a wonderful reputation. Once again, nothing was done. Now this past Wednesday he had another one. This one was just over three minutes long. I called 911 he was taken in and the doc is saying seizures. I have a VERY hard time with this b/c my gut says it isn’t a seizure. I mean I have had about ten doctors see him do these spells and when I would say “seizure” they said NO.

SO, I guess my questions are these. If it IS seizure then why have SO many doctors said no? If it is seizures then why did the spells stop after the gj placement for so long? If it is seizures how come nothing has shown on the two eegs that he has had? If it is seizures then why does his oxygen go so low? I have heard that it is not common to go off colour with seizures, let alone down to the 20s. I also had one mom tell me that her son was blue but was still satting in the 90s.

My gut tells me that it is something to do with his reflux and/or airway. His last bronchoscopy was in February of 2006. I have been asking and asking for another but never got anywhere. This was until last month when I met a new doctor. He told me that he would be arranging a bronch, a sleep study and a feeding study. Well it has been six weeks and I haven’t heard a thing.

We will also be seeing a new neurologist in the beginning of December so maybe they will have some thoughts about what could be happening. Two neurologists that I have seen have both said no to seizures as well. I am just so frustrated with all of this and I wonder WHY doctors are so nonchalant about what is happening…

Now to leave with some new great pictures…







If ANYONE has any ideas on what could be happening PLEASE send me a message. At this point I am willing to look at everything!!!!!! And also, is a bronch enough to tell if it IS airway related or is there something else I should be asking for as well? I might as well try and get all the things done at once….

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9 responses

  1. 23wktwins'mommy

    Hi Shannon,When you described what was happening with trying to bag Ashton and the air just “popping off,” it reminded me of the “bronchospasms” Edwin had in the NICU. I know I mentioned this to you when I first read about Ashton’s ALTEs months ago and at that time the Drs didn’t think reflux. I wanted answers with Edwin, because he had about 7-8 of these spells over a 2-2 1/2 week period in the NICU. Almost all (minus 1) occurred while he was being fed via an NG tube. Suddenly, his sats would drop to the 20s (even single digits) along with his heart rate. He would turn blue and they would call respiratory stat. They could not bag him, and no matter how high they turned up his O2,(he was on a nasal cannula at this time) it didn’t help. Once he was given chest compressions during one of these episodes but we were later told this was no help. He would eventually come around, but they kept saying his lungs were “clamping down” and refusing to allow air to get in even when manually bagged. Some thought this “bronchospasm” was triggered by a vegal response (vegal nerve…same reason some elderly people pass out while having a bowel movement…sorry to be graphic here.) Irritating this vegal nerve by the NG tube and the reflux would cause a spasm sending his lungs into “panic mode.” This was one of the explanations I was given. When I breastfed or bottle fed Edwin this never happened, and as soon as we were done with the NG tube, it never happened again. That was such a scary time (especially since we had FINALLY got him off the vent and were working on PO feeds.) I can’t even imagine you having to deal with this with Ashton for over two years!I don’t know how if the reflux that Edwin suffered with in the NICU is similar to what is going on with Ashton. I was shocked by the video in the sense that he is so out of it and then slowly came around and began to cry again without you really having to do anything…aka CPR. He just came around. I was struck by the bubbling of saliva in his mouth that I noticed which could be seizure related OR reflux related. I think having many Drs view this video would be very helpful,(the neuro, pulmonologist, ENT, pedi, cardiologist, etc etc etc) as even in your very good description of these spells in the past, I had no idea it was as scary and as life threatening as I realized it was once I saw the video. I can’t imagine the fear you must have, never knowing if an episode is about to occur. I am hoping you find answers, and very hopeful the video will give Drs an understanding of what is happening, and finally realize just how serious this is. Ashton we are all thinking of you Bud, and of course you too Shannon.

    November 18, 2007 at 2:54 am

  2. The Hull Munchkins

    Ashton, I’m glad you are starting to feel better. Shannon, I hope Ashton’s doctors will hurry up and figure out what is going on with your sweet boy. That is so scary!Ashton you are a very strong young man.-Patty

    November 18, 2007 at 2:56 am

  3. Anonymous

    Hey Shannon,I just got caught up on how Ashton has been doing. I am so sorry that all this is still happening. I had no idea. I will keep you both in my thoughts and prayers. If you need to talk let me know.Danielle

    November 18, 2007 at 3:57 am

  4. Anonymous

    Glad things are on the mend. Love the last pic of the two of you!-Vickie

    November 18, 2007 at 6:55 pm

  5. Patyrish

    Shannon, I just wanted to stop in and check on Ashton. I think 23wktwins had a good theory as far as broncospams. It sounds alot like what is happening with Ashton. I thought the same thing about the frothy saliva in his mouth near the end. Makily had the same type of slobber when she was seizing. It’s so hard because there are different things it could be and figuring it out seems to be hard as the docs are kind of dismissing this. I am so glad you have it on tape. That video is priceless because it really shows how serious it is. I could hear the panic in your voice and I REALLY feel for you. Praying for Ashton. I REALLY hope they figure this out. I don’t know how you are getting any sleep ((((hugs))))

    November 19, 2007 at 1:58 pm

  6. Sarah

    Hey Shannon, I agree with the vasospasms, but what about his heart? Has anyone done an echo? I don’t know what that would lead to other than to see if one problem might be leading to another. My son never had ALTEs and only on one occasion did he have a ‘vasospasm’ where his lungs clamped down, but that was right after he came off the nitric. When it was restarted it went away. Is he on sildanefil (generic Viagra)?

    November 19, 2007 at 10:57 pm

  7. Anonymous

    I recently started reading your blog. I live in Missouri, but I have an email I received about premature babies and it’s totally inspiring in every way possible. I was wanting to send it to you, but I can’t find your email, and if I copy and paste it here, only the text part shows up, and it has pictures too. So if I could just get your email to send that to you, that would be awesome. Mine is cjagust@vsdlaw.net. Corey

    November 20, 2007 at 1:58 pm

  8. Jennifer

    Hi Shannon,I’m gonna ask the same questions as Sarah – has he had a cardiac work up and a holter monitor before?I have a heart condition that causes lethal arrhythmias and his spells sound eerily familiar to what happened to me in 1999 (seizure, black & blue, no breathing). Turns out I had a heart condition after I spent an entire year on nasty seizure medication that actually caused seizures (which came out of the blue – you said Ashton cried before it happened meaning he has some knowledge of something happening).I would ask for a holter monitor or even a reveal recorder (implanted under the skin, can stay in place for years) to try to capture what happens in a cardiac sense.I had my husband (then my boyfriend) video tape one of my ‘spells’ too and it actually led to an ER doc to do an EKG/cardiogram to find my problem – so video taping is good!I’m so sorry you’re going through this – its frustrating trying to get answers, btdt myself.

    November 20, 2007 at 2:32 pm

  9. Miracles

    There’s that smile I love so much!!

    November 20, 2007 at 6:24 pm

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