pseudomona aerguinosa-treatment and lethargy

[Guest guest]

Good evening,

Carsen's throat culture came back with a very horrible bacteria called pseudomonas aeruginosa. These bacteria are very resistant to antibiotics and are usually never seen in healthy people. We assume he has them because he's neutropenic - low immune system. Pseudomonas are common in cystic fibrosis and those who are immuncompromised.

Carsen is feeling pretty good, although he's having some blood sugar problems and bad BM's- passing undigested food from 4 days prior.

He was prescribed Cipro for 21 days per his hematologist rquest. He was given 4mls this evening and about 45 minutes later, he was sitting at the kitchen table eating yogurt and startedcrying. Mike picked him up and Carsen's head fell over! I DO NOT believe that he went to 'sleep' - at least not a normal sleep anyway. He's totally OUT. He has had a good nap today as well, so he shouldn't be sleepy yet - this was over an hour ago now. Carsen is always the last one to go to sleep at night. His heart rate is higher than usual sleeping at 118. He does seem very limp in his extremeties.

Gosh, the more I describe him, the worse it sounds. I guess it is.. but his vitals seem ok. 02 is good and hrt rate isn't horrible.

I have read some about this cipro and it's a very harsh antibiotic but very specific for this type of bacteria. It's seems as though it's harder on children and not a child friendly drug. I see that there are some very scary side effects to it as well, from seizure to death!

I picked up the bottle to look at the ingredients and one is Medium Chain Triglycerides. but it says it's an inactive ingredient - not sure what inactive means as an ingredient.

I do know my boys cannot handle MCT's. That is their highest elevations of fats on their acylcarnitines.

Is this just a carrier for the medince like propafol has?

If anyone has any information on this drug, I'd really appreciate you sharing it with me. I am pretty scared and probably sound crazy for not taking him to the doctor but I surely don't want to OVER REACT! But don't want to under react either. I do know this is NOT normal and Mike is in agreement and is not leaving his side. He's watching him so I can come look up some of this.

I did not get a medication information sheet with the medication that I paid $110 for!

You think, I'd get a Book for that amount.

Again, if you have any knowledge at all, please send it my way.

Thank you,

Krystena sMom to:Caden 6 yrs MADD/GA2 variantCarsen 19 mths MADD/GA2 varianthttp://www2.caringbridge.org/ky/cadencarsen/ Warren 10 yrs Unaffected

"Hope is the companion of power and the mother of success, For those of us who hope strongest, have within us the gift of miracles." ---S. Bremer