my 20 month old daughter finally had her 1st video eeg and the results were ................ No seizures. In the same token she is still having alot of twitching of the head, shoulders, lip, legs and arms., which the doctors seen on video but still say,no siezures. they said that she just having hypnic jeks.. im not too comfortable with dat diagnosis. i feel my daughter has too many twitching and jerks in her sleep. far as the absence seizures dey were unable to catch them during the whole five days she was in the hospital. i seen alot of spikes during her sleep.during the day no spike at all. Im reaching for a second opinion. I actually overheard da doc in the hallway saying some were normal and some were abnormal, but den they came in the room and told me dey were all normal. Im beging to think dey r unsure, any advice or suggestions will be appreciated. I should add test were performed at the supposed to be greatest children' hospital " MONTIFIORE CHILDREN'S HOSPITAL" BRONX NY.
Another issue is she is 20 months old and weighing in at 17 pounds even. refuse to eat over 1ounce of food. drinks 2-3 ounces of nutramigen every 4 hours. Im not a fan of feeding tubes, but i do feel she need one to help her grow properly. Her gi doc is sending her for an endoscopy, which im happy with, but i feel she needs tube feeding. she was also given perdiadure which she does not like and refuse to drink. Her Gi does not wana tube feed her. he says that is the last resort. Im wondering when is the last resort? when she is passed out???? She is becoming dehydrated hardly any wet diapers and lips cracking and bleeding. she still loosing weight. some food she will chew but not swallow. HELP
WELL SHE IS WALKING WAKES UP SCREAMING AND BITING HER TOUNGE QUITE OFTEN. THE gi CLAIMS HE VERY CONCERNED ABOUT HER WEIGHT AND AND APITITE. HOPEFULLY EVERYTHING WILL GO WELL. IM JUST VERY NERVOUS FOR MY LITTLE GIRL. THANKS EVERYONE FOR YA HELP
Do you live in NY or Texas. Houston has some excellent hospitals, especially for children. If you are in NY how about Columbia Presbyterian?
Sounds like you need to get her somewhere else for a second opinion.
my daughter was 18 lbs at 24 mos but was always petite and grew along her growth curve so the dr wasnt too concerned. Im sure her GI doc will wait until after the endoscopy to tube feed her. Is she walking, has she been diagnosed with any other disorder besides the ticks? does she cry a lot? how does she act? give her pedialight at least that will help with some of the rehydration until the endoscopy.
find another doctor/hospital, your insurance should cover the expenses if requested as a second opinion. Contact a nutritionist (urgently) about how to maximize her nutrition. Time is of the essence, trust your maternal instinct. Keep advocating, "make noise" with your doctor. All my best to your daughter.
If you are in the DFW area please consider Cook Children's in Ft worth over Children's in Dallas - we see Dr Acosta in the neuro dept.....you might just take her to the ER over there with the dehydration issue as that can be very dangerous...does she drink a lot? good luck..
Have they considered Dsyphagia or Apraxia?
These conditions affect eating.
As for her 'seizures' I don't know.
If she is in such bad condition, have they hospitalized her and given her an IV?
Dehydration is very serious as well. What are they doing about that?
Have you considered a natural neuro chiropractor??
Twitching..jerking. My son came from the hospital doing the same 'shivering' things in the month of August, docs said he's cold keep him bundled. He did not open his eyes unless it was completely dark. Is your daughter doing any of this? When he was five months he had a seizure that sent him to the hospital..they found he had low calcium and Rickets. Get another opinion ask about calcium level..there are many things that can cause the twitching/jerking/shivers
