Re: pseudomona aerguinosa-treatment and lethargy

[Guest guest]

Krystena,

I haven't had problems with this medication, but it sounds like you might want to call the doctors office on this one. This doesn't sound like a normal reaction,

at the very least call the pharmacy that you got the medication from to let them know of this reaction, to see if this might be a side effect. If they won't help, I don't know

if you have a Walgreens there, but I have always gotten great help from them on info and looking up meds, or even info on whether meds are safe to take together,

even if it's a prescription I got from another drug store, just be sure to tell them all the meds hes on, even the over the counter, maybe its a cross reaction.

I hope this helps, it's a very vague line between over reacting, underreacting, and knowing for sure something is really wrong sometimes. Good luck.

We see so much "odd" stuff it's hard to tell what's okay and whats not.

Lois

pseudomona aerguinosa-treatment and lethargy

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 Please contact mito-owner with any problems or questions.

[Guest guest]

Krystena,

I am so sorry to hear about all the things going on.I don't have any advice,for you,,but just wanted to let you know that we are thinking and praying for y'all. I tried to go to your website,,but it said to ask for a password,,sounds like you are having some serious problems with it Anyway,,I'm sorry to hear about your child,,,,and hopefully you can get things worked out soon.

Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY

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[Guest guest]

Krystena,

Sorry for the late reply, been WAY behind on my mail, but I saved this because I wanted to share our experience. . .

Chelsea started seeing a pulm at 3 yrs for sleep apnea. She often has sputum samples taken and they always grow the pseudomonus and sometimes staph. Chelsea has a normal immune system, but still picks up virus' very easily and often ends up with 2ndary bacterial infection. Her pulm told me the chronic pseudomonus is from be hospitalized at an early age. He most often sees it in his CF pts, but also sees it in pts who has hospitalizations young, even if they are healthy otherwise. It is a big concern for Chelsea, as she has significant aspiration issues, and easily gets pneumonia from colds and virus'.

In Jan, her pulm dx'd her with a sinus infection. He at 1st wanted to do 21 days of ceftin and tobi nebs. I objected, because Chelsea has been resistant during her neb treatments. She already has to be strapped down for a 1/2 hr twice a day, I didn't want to add another hour! He decided to put her on cipro for 10 days. I was a little leary, as I know cipro is one of the most potent, and Chelsea has had negative reactions to antibiotics, but knew it had to be done for the sinus infection. She actually tolerated the cipro quite well, and has not needed antibiotics since. I was actually pretty surprised, as she commanly has seizures and bowel irregularities while on them. I do give her probiotics, and that seem to help a lot.

That being said, I am sorry to hear of the pharmacy mess up! How awful and scary for you! Your story really made me stop and think that I do trust that the pharmacy gets things right. And I have had to deal with a lot of dopes there! I will be double checking things from now on! I hope Carsen is all recovered!

e, Chelsea's mom, 8, Atypical Rett Syndrome (FKA nonspecific mito)