HERE is the attachment for Cipro (sorry)

[Guest guest]

I wanted to get it to you fast and then forgot to put the attachment

in. Sorry!

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a

photo look into Mito)

Darla: mommy to

Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomia, SID, global delays, cyclic vomiting, bladder

issues, some wheelchair use, eye issues, gastric emptying issues...

Zipporrah (17 months) Mito, strokes, neuro-motor planning, SID, GERD,

dysphasia, G-tube fed, speech delays, extreme fatigue, aberrant subclavian

artery, disautonomia, hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (17)migraines, sensory issues, & some evidence of SLE's...

Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), Marquis (3)

Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum,

encephalomalacia & leukomalacia, G-tube, GERD, immobile, severe dev. delays,

left hemiplegia (arm)...

(15 months) SID, dev. delays, right hemiparesis issues...

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 s

Mom to:

Caden 6 yrs MADD/GA2 variant

Carsen 19 mths MADD/GA2 variant

http://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