My son was born at 24 weeks weighing 1lb9oz June 10th 2005. He spent 227 days in the NICU before coming home. He was on oxygen and a g tube with some bottles. The day after coming home he had a severe "spell"where he went completely blue/no chest movement.....four days later he was readmitted into PICU and ended up on a vent again. He continued with these "spells" on the vent...doctors were confused. They diagnosed him with ALTEs due to reflux and did a gj tube. The spells stopped. He came home again on Feb23'06. He went all the way until July06 when he had two spells then all the way to april 07 and had another. June 13th another and then just three weeks ago another. It was very long and I called 911. I am VERY scared/frustrated that no one is doing anything. Anyone dealt with this??? I have it on video as well if anyone thinks they might be able to help. I am desperate. The docs are trying to say seizures now but I don't believe that for one second since they got better with the j feeds.....Ashton is now 30months old and still does just j feeds, no oral. He has severe reflux, cerebral palsy.....THANK YOU!

I SHOULD ADD THAT DURING THESE SPELLS HIS OXYGEN SATURATIONS ARE BETWEEN 20-30 AND HIS HEART RATE IS BETWEEN 20-60.

How long do these spells last? Do these seem to be any circumstances that these spells have in common (such as occuring during illness or fevers or episodes of vomiting or constipation or diarrhea or when he is asleep or lying down)? Is your son on any seizure medications? Has he had a recent EEG? How quickly does his oxygen saturation return to normal and what is his "normal" oxygen saturation.

Seizures can be very unpredictable. A seizure disorder can appear to go away and then come back. Medications that helped prevent seizures may lose effectiveness. And seizures can be a primary problem (due to a seizure disorder) or it can be a symptom or result of some other disease (such as during a high fever, as a result of poisoning, or injury, or disruption in metabolism). Do your son's doctors have a theory as to what might be triggering these seizures?

I assume that you have a very good pediatrician and a pediatric gastroenterologist (GI specialist) and a pediatric neurologist. The things that make sense to me to look at might be reflux (which can persist even with j-tube feeding, especially if there is slow emptying of the intestines) and seizures and if you have not had a consultation with a pediatric lung specialist (a pulmonologist) this might be a good idea. It would also make sense to review all of the studies and consultations that your son has had over the past 30 months and your pediatrician might be the best person to assist with making sense of that.

I know we have some other parents here who have been through similar circumstances and perhaps they might have some good ideas and good advice too.

Do keep us posted.

Best wishes to you and your son.

Bill

Hi Bill and thanks for your reply. However, I am beyond frustrated as the doctors are not doing anything about what is happening. I don't know where else to turn to. He has seen every doctor imaginable and not ONE has an answer for me as to what is happening.

As for your questions....he is not on any seizure meds and never has been. He has had three eegs all which were abnormal but with no seizure activity. He will be having a sleep study done in January. These "spells" are usually between 45seconds and three minutes. His normal oxygen sats are about 96. He drops to the 20s with these spells and it takes I'd say a good five minutes for him to even get to 90. When they would bag him in the ICU it would just pop off...it is impossible to get air into him during these spells, therefore CPR is useless.

I just don't understand how NOTHING is being done or looked into. And anything that IS done is b/c I have fought and fought for it. Just sad to me that a child stops breathing but yet they send us home. Crazy to me really.

I know that he still has reflux with the j tube however it is obviously much better than the g tube or bottles. I KNOW that these spells have something to do with reflux b/c of the journal that I have kept since he was born. But no one is listening.

Even last week he had an echo done. When they came to get me to go to recovery he was satting 60s,70s ON oxygen. I assumed that he had to have a general b/c this is what he does after sedation. However he only had a whiff of nitrous which in turn should not cause this problem. The doctor on that day said that she believed he had airway issues....WOW I have been trying to say this for over the past year!!!!

Anyways I don't really know what else to say....I think it may be time to go to the media soon

Daniel, a man from Ireland who has done a lot of posting here and whose judgement and advice I trust, has made an important point with regard to situations such as the one that you and your son face.

This is the importance of assigning one doctor the responsibility for coordinating your son's care. This may not be the smartest doctor, the most senior doctor, or the highest paid or highest profile doctor. The traits you should look for are that this should be a doctor in whom you have trust and whom you feel comfortable with (first and foremost). It should be a doctor who shares the same goals for your son and his care as you do. It should be a doctor whom you trust to give you accurate information about your son's care and whose answers to your questions and concerns you feel you can trust (even and especially when you don't agree with them).

Most everything else (like whether you need yet another consultation or test or need to access an even more specialized medical facility) seems to me to be secondary to this.

If you don't have such a doctor, then find such a person and review with them your son's situation, history, tests and procedures and your concerns, hopes and expectations. Ask for their opinion as to what steps he or she would take if this was his or her child.

Without such a coordinator, medical expertise for hard cases can become very fragmented despite everyone's best intentions and once a crisis is over or an insoluble problem is reached you can be left in a situation where all the doctors walk away assuming that some other doctor will be monitoring the case, at least until the next situation requiring their particular expertise is required.

Best wishes,
Bill

The episodes you describe with your child sound alot like what another mother has described w/her infant who has PHACES.  she is also fed w/a j tube and had major reflux problems and cardiac problems.  She has had several unpredictable 'blue spells' and doctors have had difficulty pin-pointing the exact cause.  I believe they decided it's a combination of positioning, reflux, and maybe something else.  I have only read their story on-line---do not know them personally.  However, I would bet that she would welcome you to email her.  Have you heard of Carepages?  Let me get the link and i"ll post again.