Re: Should I be concerned?

[Guest guest]

,

We took Ellie to see Shoffner in December...4 days later we were in the hospital with a horrible case of croup. I truly believe it was due to flying and being around so many germs. That being said, it was December, so if you are planning to go mid-summer, things might be a little different??

Hope Zach is feeling better...

KK

Should I be concerned?

Granted zach is recovering from pneumonia. The dr. wanted to put zach on some antibiotic that starts w/ a b biaxin or something and he is still on the zithromax even though he finished its 5 days, it lasts 5 more, plus hes on augmentin for a while . The reason I am concerned is A, they are so paranoid w/ his pneumonias that they put him on antibiotics at the drop of a sniffle. The antibiotics throw his stomach off and i am pretty sure cause tonight he said he felt like he was gonna be sick. He didnt but i'm sure it makes him nauseous cause i know it affects his bowels. The other thing everyone keeps telling me hes so much more low keyed energy wise and hes just not himself or he doesnt want to do much they havent said hes getting weaker. He still goes and plays but can tolerate like an hour or so out side. I am taking him to the park tomorrow hes been begging, but his behavior is mega grumpy. I know the little ! guy doesnt feel well, but, Would u be concerned ?

He is not getting pt for a bit because his pt's husband died this week. I feel so sorry for her shes got 3 young children. she will do ok but i told her take time to grieve so im letting zach play outside to build strength. Nice week this week.

Another question. We're planning a disney trip in 2006. What would u recommend for plane trip for avoiding illnesses and viruses and also can you call ahead to disney and ask them to be a little more thourough w/ cleaning the room w/ o being offensive? or just bring clorox whipes w/ u? i'm gonna purell the kid to death when we're there.

I was also thinking of having him wear a mask on the plane but zach may not keep his on.

mom to zach 4 ga2, alexis 6 __________________________________ Do you Yahoo!? Yahoo! Small Business - Try our new resources site!http://smallbusiness.yahoo.com/resources/ Please contact mito-owner with any problems or questions.

__________________________________________________

[Guest guest]

, Hey there! Sorry to hear about Zach.

Are his doctors investigating what TYPE of pneumonia this child is getting? If, it's viral, antibiotics will NOT fix it and can actually weaken the immune system or build an immunity to most antibiotics so when he really needs them, the might NOT work! This very serious and should be looked into.

Is he getting true pneumonias or does he have perihilar markings throughout his chest xrays. There's a huge difference. Unless they can completely see an infiltration IN the lungs, then they could be over treating him. I know who his metabolic dr is but dont know who his family doctor might be.. Does his metabolic dr know about all of this. NOT that she'd do anything about but just wondering if she knew.

I, personally, feel that Zach would be MUCH better off with Dr. K. I know many who have seen the both of them and Dr.K is much higher recommended -personality wise and professionalism- not to mention his wealth of knowledge on mito. He's very agressive in treatment as well.

We wound up seeing aCystic Fibrosis doctor with Caden when he used to have so many infections. He went through his records and was astonished at the amount of antibiotics he was prescribed! Boy, did we feel bad but, we had no idea about the over use of antbiotics!

Have they tested his IG levels? Seems like I remember you mentioning this.. not sure.. If they are low, they could try giving him IVIG.

Carsen always has these mucusy-markings on his chest Xray. It's due to chronic restrictive airway disease -Asthma. Does Zach have asthma? There are some great treatments for that. One being Pulmicort NOT abluterol ) Albuterol is good for immediate brochial dilation but the Pulmicort actually TREATS the inflamation. GREAT stuff!

Why don't you ask them to do a sputum culture? Did they ever do that biopsy?

Just for the record. I have a friend whose child also saw your son's met. dr. and this child stays sick - horribly sick - with low white blood cells and other major issues but because the child has LCHAD, she woudn't look into it any futher. Blamed everything on the LCHAD. I'm glad my friend IS so persistant. She begged for a CT and found out he has a serious case of chronic sinusitius at age 3! Now, they will investigate his low white blood cells. I tell you this because, I hate for people to think there are no more options out there. Don't be afraid of stepping on toes. Look at your son! He should be inspriation enough to keep looking.

I always read about Zach. I know he's a sick little boy and often feel his doctors are not treating him properly. Who am I to say though, right?? Just a mom but remember, I am a mom whose been through many, I mean, many physicians in almost 7 yrs now. I have seen the good, the bad and the ugly.. I dont think you guys have found the good yet.

Anyway....

Here's a great link regarding viral pneumonia.

http://www.healthcentral.com/mhc/top/000073.cfm

Treatment: The objective of treatment is to provide supportive therapy, because viral infections will not respond to antibiotics. Supportive treatment includes humidified air, increased fluids, and supplemental oxygen, if indicated. Hospitalization may be necessary to prevent dehydration in young children and the elderly. Occasionally, antiviral medications such as Ribavirin or Amantadine (for influenza A viruses) may be prescribed, especially for infants and young children.

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A great link regarding Antibiotic Overuse

http://www.drgreene.com/21_646.html

Sorry if all of this is overwhelming and a tad bit straight forward. I am sorry Zach is not doing well. I know how hard it is to watch your child suffer.

Read up on the overuse of antibiotics and see what you think. It can do more harm than good, especially if you are considering moving on to the Big Gun antibiotics.

Sincerely,

Krystena sMom to:Caden 6.9 yrs MADD/GA2 variantCarsen 22 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

From: sarah

To: Mito

Sent: Wednesday, April 13, 2005 10:36 PM

Subject: Should I be concerned?

Granted zach is recovering from pneumonia. The dr. wanted to put zach on some antibiotic that starts w/ a b biaxin or something and he is still on the zithromax even though he finished its 5 days, it lasts 5 more, plus hes on augmentin for a while . The reason I am concerned is A, they are so paranoid w/ his pneumonias that they put him on antibiotics at the drop of a sniffle. The antibiotics throw his stomach off and i am pretty sure cause tonight he said he felt like he was gonna be sick. He didnt but i'm sure it makes him nauseous cause i know it affects his bowels. The other thing everyone keeps telling me hes so much more low keyed energy wise and hes just not himself or he doesnt want to do much they havent said hes getting weaker. He still goes and plays but can tolerate like an hour or so out side. I am taking him to the park tomorrow hes been begging, but his behavior is mega grumpy. I know the little guy doesnt feel well, but, Would u be concerned ?

He is not getting pt for a bit because his pt's husband died this week. I feel so sorry for her shes got 3 young children. she will do ok but i told her take time to grieve so im letting zach play outside to build strength. Nice week this week.

Another question. We're planning a disney trip in 2006. What would u recommend for plane trip for avoiding illnesses and viruses and also can you call ahead to disney and ask them to be a little more thourough w/ cleaning the room w/ o being offensive? or just bring clorox whipes w/ u? i'm gonna purell the kid to death when we're there.

I was also thinking of having him wear a mask on the plane but zach may not keep his on.

mom to zach 4 ga2, alexis 6 __________________________________ Do you Yahoo!? Yahoo! Small Business - Try our new resources site!http://smallbusiness.yahoo.com/resources/ Please contact mito-owner with any problems or questions.

__________________________________________________