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Child With Severe Spells!!!!!!!
Hi everyone. My son is 30months old. He was born at 24 weeks weighing 1lb9oz. 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.
***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 27 and heart rate of 42. Took him to emergency but they didn't do anything.
He went all the way until April 4'07 without a spell. 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.
Anyone dealt with this?????? I am worried sick. I did happen to get the last one on video if anyone thinks they could help me?!?
***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 27 and heart rate of 42. Took him to emergency but they didn't do anything.
He went all the way until April 4'07 without a spell. 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.
Anyone dealt with this?????? I am worried sick. I did happen to get the last one on video if anyone thinks they could help me?!?
MEDICAL PROFESSIONAL
God bless you and your son. This is way out of what I do . . . Just for those who may have some experience: did your son have an intraventricular hemorrhage (blood in the brain) at birth, and are they planning to repair the reflux at a certain weight or age?
He had bilateral brain bleed which resolved on its own. He has mild PVL in his latest MRI. Repair the reflux? There is no such thing...he has the gj tube already and I absolutely refuse to do a fundo if that is what you are talking about. (Sorry but with kids that have neurological issues they CAN be a nightmare.)
destinyandmiracles,
This situation sounds horrible for you & your child..I'm sorry, it must be so frustrating & frightening.
Have you ever thought of taking him to a major medical center (teaching hospital-such as the Univ. of MI, in my state) where they have multiple specialist under one roof. They also are updated on the newest procedures & tests. Hopefully you live in the US where this type of medical facility is an option. Look on the internet...they have their physicans & specialist listed. You can make an appointment yourself or your doctoor might be able to get you in sooner. Take all of his records with you.
Only with reading what you've written I almost wonder if it isn't something with his heart. Heart rate & pulse ox dropping, both of which would cause seizure like activity.
I'm sorry I can't be of more help to you.
Both of you are in my prayers,
TJ
His condition is very complex & I pary you find the answer you need
This situation sounds horrible for you & your child..I'm sorry, it must be so frustrating & frightening.
Have you ever thought of taking him to a major medical center (teaching hospital-such as the Univ. of MI, in my state) where they have multiple specialist under one roof. They also are updated on the newest procedures & tests. Hopefully you live in the US where this type of medical facility is an option. Look on the internet...they have their physicans & specialist listed. You can make an appointment yourself or your doctoor might be able to get you in sooner. Take all of his records with you.
Only with reading what you've written I almost wonder if it isn't something with his heart. Heart rate & pulse ox dropping, both of which would cause seizure like activity.
I'm sorry I can't be of more help to you.
Both of you are in my prayers,
TJ
His condition is very complex & I pary you find the answer you need
I do not live in the US and this is what frustrates me the most. It seems that the US gets much better care than here in Canada. I am absolutely disgusted with the lack of knowledge, tests and care for my son. They haven't even ordered any tests! I have to research and then ask for certain things...and even then it takes FOREVER to get to see the doc I want.
He had a pre-op for his echo of his heart in MARCH!!! Here we are in November and still no appointment. I am at my wits end and am thinking seriously of going to the media.
He had a pre-op for his echo of his heart in MARCH!!! Here we are in November and still no appointment. I am at my wits end and am thinking seriously of going to the media.
I certainally would. That's terrible & outrageous. He's gotten lost in the system & maybe the news media can shake things up for you. I'd be mentioning doctors names also because they have to refer you, don.t they? Somebody's dropped the ball & that's inexcusable.
The squeeky wheel gets the grease & if you ask me you have been very patient so far & now you have to do what's best for your son.
Let us know how you turn out, ok
TJ
The squeeky wheel gets the grease & if you ask me you have been very patient so far & now you have to do what's best for your son.
Let us know how you turn out, ok
TJ
My son was also born premature, and at first was diagnosed with PDA (patent ductus arterious) where the blood flow of prebirth doesnt swith to post birth blood flow and they have to repair it surgerically or through a cath and coils. It turned out my son had HLHS (hypoplastic left heart syndrome) and PPHN (persistant pulmonary hypertension of the newborn). What you're talking about sounds like a heart issue. SATS that low are SO dangerous and could cause further brain damage, expecially after 3 minutes. I'm shocked it would take them so long to get an ECHO done. My son was treated at Sick Kids in Toronto and at The Stollery in Edmonton (i'm canadian also). Sick Kids has one of the leading cardiology programs in north america (they discovered the ABO Incompitable Heart Transplant in infants) and i'm sure they are very specialized and very good in all other medical problems. If Iwere you, I would go to toronto and head to Sick Kids. They will help you, im positive.
My son had a heart transplant but went into rejction a few months later and we lost him, but the doctors at The Stollery and Sick Kids did everything they could absolutly do for him. He needs to be seen by someone who can help.
My son had a heart transplant but went into rejction a few months later and we lost him, but the doctors at The Stollery and Sick Kids did everything they could absolutly do for him. He needs to be seen by someone who can help.
Can I take a look at your video?
destinyandmiracles,
There you go, there is miracles. Hopefully apeddle has opened the door for one for you.
apeddle,
Your the answer to my prayers. Thanks...
TJ
There you go, there is miracles. Hopefully apeddle has opened the door for one for you.
apeddle,
Your the answer to my prayers. Thanks...
TJ
Well I would hate to tell you but Toronto Sick Kids is one of the hospitals that we DO deal with. They also saw one of his spells in June and nothing was done....as for miracles, I know they exist as my son is still here but I can't do this alone without doctors help.
how severe is your son's reflux? Reflux could cause his symptoms. When one refluxes it stimulates the vagus nerve and causes the heart to slow down. The pressure in his stomach could also cause him to stop breathing........these episodes are dangerous.due to the low oxygen level. I would push your sons pediatrician to get things going quicker.
I hope your son gets the care he needs.
I hope your son gets the care he needs.
Well his reflux is pretty severe that is why he is fed through his j tube (21months now he has had this). He is on 30mg/prevacid a day. He does not vomit but has silent reflux. I should also add that he has cerebral palsy so that could contribute as well. I have been pushing and pushing for a year now! I finally think I am getting somewhere this week....when we in the ER last week I told them that if things were not done soon I was going to the media. Wouldn't you know if but he has an echo on monday, has a sleep study and feeding study and also waiting for an ENT appointment.
I really don't know what else to do for his reflux!!! I mean he is fed through the j tube for 16hours a day, is on meds.....I am so frustrated. Reflux is just nasty.
I really don't know what else to do for his reflux!!! I mean he is fed through the j tube for 16hours a day, is on meds.....I am so frustrated. Reflux is just nasty.
i'm glad he is having a sleep study....hoperfully they can rule out central sleep apnea.........i pray for you and your son........keep us posted
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