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Special Needs
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an intro to my ds...ridiculously long
i post infrequently about ds on 0-6, but i have stopped in here once or twice to try to find a story similar to mine...ok, i lurk. from my brief visits, i'm not sure if he "fits in".
ds started having apneic episodes when he was exactly one month old. we were rushed to the hospital where they did an extensive work up (EEGs, echo, barium swallow, chest xray, haulter monitor/EKG, MRI) etc. From the moment we entered the ER, I started telling people it looked like an absent seizure, but nobody really listened. He continued to have these episodes (he can have multiple/day then go days w/o), with desats low enough where they'd tell me that the monitor can't accurately read and we had multiple diagnosis (?). Virus, cardio problem, reflux...until they finally captured am episode on the EEG and the neurologist decided they were seizures. We transfered to Children's for multiple reasons, but the main being we just felt that they weren't listening to us or letting us know what was going on.
His first hospital stay was for 12 days, and that was during my maternity leave. We had all types of services immediately set up, EI, VNA, apnea monitor... He had medication that was supposed to help prevent any more seizures and we were hopeful, though very very sad.
DS continued to have these seizures and we were readmitted to the hospital on his 3 month birthday. This hospital stay was different, however, since they were focusing on the seizures. He was on the EEG for 8 days, and it left horrible welts. At the end of the stay, they had decided that he was NOT having seizures, that it was his reflux, and to begin weaning him off his phenobarb. We were discharged on Christmas Eve, while awaiting the results of his impedance study. He was still having these episodes.
Since the weaning, DS's episodes have increased in apneic length, although not frequency. DH called the GI drs at Childrens who decided they wanted him back in the hospital, that the episodes were too dangerous to be unmonitored. He has been on the Intermediate Care Floor (1/2 step down from NICU) since Wednesday, where I am currently residing on a cold cot next to a window 11 stories up. Since returning from my mat leave Dec 8, I have worked a total of 5 days. I feel incredibly guilty about this, despite the fact my principal and superintendant have been amazing.
Essentially, nobody knows what's going on. His EEGs during an episode aren't totally normal, but don't necessarily point to seizures. His impedance study shows that he has reflux, but they're not sure if the level is clinically significant. His MRI came back normal, but with extra fluid around his temporal lobe (where the events on the EEG are located). His echo showed a slight murmer, but nothing to be worried about. While nothing comes back completely normal, everything is "not to worry about" or "doesn't show definatively". To add to the stress, the episodes he's been having here are FREAKING the MD's out and they are very persistant about him having an IV. Unfortunately, he's an insanely difficult stick, like they've only been successful twice in over seventy sticks. I now tell them they have one stick/day and to use it wisely. I am having difficulty understanding why NOW this is so scary. I am used to it at this point. Last OCTOBER this was scary for me. Why did they keep discharging us if he was still having these events?
So while DS is making his milestones (he's almost sitting up when put into that position, he can almost roll, as long as I throw a chubby leg over, he loves sucking on his hands, belly laughs, smiles at all the nurses) he apparently is a medical mystery. I seriously wish there was a Gregory House in real life that I could talk to. I don't know if this is what you girls consider SNs, but sometimes I just get so sick of reading about CIO arguments and baby wearing when what I am really concerned with is if my child will resume breathing after his next episode. Does that make sense?
Oh, and I apologize now. I will lurk. DS will NOT let me type unless he's down in his crib! I am also sorry about the length of this post, but it was very cathardic (cathartic, hmmm...i dunno). I did edit it for length a little, but if I did anymore, it would've lost too much.
, This discussion has been closed.
Re: an intro to my ds...ridiculously long
I just want to send you some hugs. I am so sorry that you are having so many difficulties, and that they have so far been unable to get your DS a diagnosis. I do know how scary seizures, and hospital stays can be. My DS has had his fair share of both (multiple seizures per day and long EEG monitoring in the hospital). I am really hoping that your current hospital stay will shed some light on what is going on.
I also totally understand how tiring it can be to read about CIO, baby crack machines, and co-sleeping arguments, it gets very old. Having a SN child really puts the important things into perspective, you know? Sometimes I just want to post something snarky like..."This is a stupid argument that has no importance, at least your baby is healthy, and doesn't have seizures all of the time!" But then I try to remember that they are just trying to do the best they can as parents...like all of us.
I like the limit of 1 needle-stick per day. Sounds like you are being a breat advocate for your little man. I need to remember that one, as my DS is also a difficult stick. Apparently, my DS is too chubby, lol! Once they blew all the veins in both elbows, hands, and one foot. They finally got the draw they needed on the second stick in his last foot. I was pissed!
Anyways, best of luck in your search for a diagnosis. I am really hoping that they figure this thing out for you guys. I will be looking for your updates.
BFP 3/9/12 Natural M/C 4/11/12
Hi, sorry you are going thru this, It must be awfully frustrating not knowing what he has. I hope they find out soon!
I like the one stick a day rule as well. One day they stuck my daughter 4 times and told me they had to stick her again cause the blood coagulated on the way to the lab. I totally lost it and told them they couldn't stick her again that day, I had had enough hearing my baby cry everytime they would try a vein---they called my nurse, the floor doctor and then the cardiologist. Thankfully, he took pity on me and told them not to draw blood till the next day since the her potassium test could wait and was not urgent. We actually went home that night and we took her to a lab to get the potassium test done.
Hey & Welcome! Sorry you are having this much stress with a diagnosis - I understand completely, we are still searching for ours. I know exactly what you mean when you wish there was a real Gregory House that would keep searching and testing until he miraculously finds the right diagnosis.
Oh and I'm proud of you for limiting them to one stick a day. My DS is the same way and it kills me to see him all bruised as they go from IV to IV. I really hope that you find an answer soon! You'll be in my prayers!
It can be a frustrating road not knowing what you DC has...DS too had multiple EEG's and EKG's after birth. His EEG showed abnormal activity and he was immediately placed on anti-seizure meds. His apnea spells were out of control. Everytime he feel asleep he would desat beyond believe. He breathing became shallow and he quickly turned blue. We luckily he had a Neonate at his birth hospital with a Dr. Gregory House gut who led the Dr's in the right direction regarding diagnosis.
I agree with the previous posters that I like the one stick a day rule. I wish I would have thought about that the numerous times DS has been hospitalized. I know quickly request that a picc-line be placed, since we have been sent home with one twice now.
I'm kind of stuck with my words at the moment, but maybe you can request a meeting with his care professionals and ask why they continue to send him home. Ask what each of them thinks it may or may not be, ask them who he can be referred too. Maybe just to let them know to think out of the box. There are a few children on here with rare syndromes. Amajane's daughter has a DOOR and only like 35 cases have been reported world wide, my son has Congential Central Hypoventilation where he "forgets" to breathe, he has no voluntary function to breathe once sleeping and there are only 500-600 cases world wide.
I can't imagine the loneliness you may feel and how difficult this time is for you and your family. I know hoe I felt and it can't be put into words. I hope you find an answer for your son sooner rather than later.
Welcome to the board!