Re: zach went to the dr. today, possible pneumonia again , What is that 5 times since august?

[Guest guest]

Dear ,

I am so sorry about Zach and I know

what you feel about wanting your children to just enjoy a Holiday.

Last year, we spent our entire Christmaa, New years and the next 2 months in crisis

and I felt so desperate and also envious of other families that got to relax

and have a holiday while I spent all my time worrying about whether my daughter

urinated and if I had to deal with cathing her and havinf her sit on the toilet

so often, her butt was sore with me literally praying she would pee. Life is so

unfair that is for sure. Thankfully, this holiday has turned out much better

but believe me, I do not take it for granted for a minute, that is for sure. I

am thankful every day. I know what you mean about the pharmacist. My pharmacy

knows me by name and that is so sad. I am their biggest customer and they

always pity me. Leanna also uses Xopanex and it makes me so mad that my

insurance does not cover it and it costs me $150, can you believe that. What

choice do we have, right? I always feel like parents like us that have no choice

when it comes to our kids excessive medicines get taken advantage by insurance

so much, sometimes when I leave the pharmacy I literally want to scream. I

think of how some people spend this money on vacations, hair , nails n makeup

and I spent it on medicine that in the end probably won’t make a darn

difference anyways, but we do what we have to do. I guess that is enough

venting. I just want you to know I sympathize with you and it makes me mad too.

I hope Zach feels better real soon.

Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) &

Leanna with same disease.

Samya's Memorial Site: www.samyahaddad.com/.org/.net

Email:

Suhad1970@...

Alt Email:

Suhad@...

AiM Chat: Suhad1970

From: sarah

Sent: Wednesday, December 29, 2004

7:04 PM

To: Mito

Subject: zach went to the dr. today, possible

pneumonia again , What is that 5 times since august?

We

discussed possible aspiration He wants to try prevacid. My husbands worried it

will have long term stomach complications. We see the pulmonologist this month

were supposed to before the holidays just stuff got in the way and couldnt get

down to albany.

The dr. said he can hear stuff in his left lung, but does not want to give him

another xray because hes had so many since august that he does not want to

expose him to more radiation then he has to and hte pulmonologist may want to

do one. We are giving him chewable antibiotics what a difference. He has an ear

infection which is a first in a while .

We have

to do round the clock xeponex (like albuterol) and just keep real

diligent w/ his meds and watch his color. His o2 is 95. The dr didnt act

thrilled about it it kept fluxuating between 94 and 95 % but they said we're

happy if we get it to bounce to 95 a couple times. I am worried that his

ability to fight this stuff off is getting worse.

The dr.

said they dont like to give kids antibiotics so much generally but because

zachs case is different, he doesnt have the ability to cough all his stuff up

on his own, so he needs help more so and they can't risk letting it go and

waiting it out to see if it goes away on its own. Because more than likely , it

will turn into a more severe case of pneumonia. my mom tries to reassure me

that I had bronchitis every other month and that i outgrew it around 6, but yet

its back now. I get it all the time when ever i'm sick .

I just

want him to be able to go out and play in the snow and have a holiday w/o

getting just slihgtly tired where it puts him at risk for getting sick. We

can't do anything because hes sick and i dont hold that against him because its

not it, its more so that i want him to enjoy life to the fullest. Luckily our

family is alike, we're a very easy going family and very understanding of each

others needs in this household.

I went and got his meds today and said yup us again, do i get frequent flier

miles for coming in the most. Lol, the checker asked the pharmacist jokingly. I

told him possible pneumonia again. The pharmacist said again? i said yeah. He

asked me if i smoked. Which is definately not the case, no ones allowed to

smoke anywhere near him. I just am frustrated, sometimes its just hard to understand

why he is getting sick so easy.

mom to

zach 4 ga2 alexis 6

__________________________________________________

[Guest guest]

,

I am so sorry to hear that Zach may have pneumonia again. It must be so tough wanting zach to enjoy things and still be susceptible to catching viruses/getting sick. I fight with the pneumonia alot, since my lungs are poorly functioning. I will continue to pray for Zach and the family.

Hugs

Annsarah wrote:

We discussed possible aspiration He wants to try prevacid. My husbands worried it will have long term stomach complications. We see the pulmonologist this month were supposed to before the holidays just stuff got in the way and couldnt get down to albany. The dr. said he can hear stuff in his left lung, but does not want to give him another xray because hes had so many since august that he does not want to expose him to more radiation then he has to and hte pulmonologist may want to do one. We are giving him chewable antibiotics what a difference. He has an ear infection which is a first in a while .

We have to do round the clock xeponex (like albuterol) and just keep real diligent w/ his meds and watch his color. His o2 is 95. The dr didnt act thrilled about it it kept fluxuating between 94 and 95 % but they said we're happy if we get it to bounce to 95 a couple times. I am worried that his ability to fight this stuff off is getting worse.

The dr. said they dont like to give kids antibiotics so much generally but because zachs case is different, he doesnt have the ability to cough all his stuff up on his own, so he needs help more so and they can't risk letting it go and waiting it out to see if it goes away on its own. Because more than likely , it will turn into a more severe case of pneumonia. my mom tries to reassure me that I had bronchitis every other month and that i outgrew it around 6, but yet its back now. I get it all the time when ever i'm sick .

I just want him to be able to go out and play in the snow and have a holiday w/o getting just slihgtly tired where it puts him at risk for getting sick. We can't do anything because hes sick and i dont hold that against him because its not it, its more so that i want him to enjoy life to the fullest. Luckily our family is alike, we're a very easy going family and very understanding of each others needs in this household. I went and got his meds today and said yup us again, do i get frequent flier miles for coming in the most. Lol, the checker asked the pharmacist jokingly. I told him possible pneumonia again. The pharmacist said again? i said yeah. He asked me if i smoked. Which is definately not the case, no ones allowed to smoke anywhere near him. I just am frustrated, sometimes its just hard to understand why he is getting sick so easy.

mom to zach 4 ga2 alexis 6

__________________________________________________

[Guest guest]

,

Audrey was getting pneumonia very frequently as well, three times in Sept and the month wasn't even over. Anyway, they got her a Percussion Vest. It is like the kiddos that have Cystic Fibrosis have and it has really helped her. She gets two treatments a day, each lasting 20 minutes. I can't say she likes it, but.........it has helped. We mentioned it to her Ped and the next day the rep was at the house. Insurance is paying for it, thank goodness, because I think the cost is somewhere around $16000. Ouch! It would certainly be worth a try to ask the doc about it.

Hope Zach is feeling better soon,

Kathy, grandma to Audrey, 3 yearssarah wrote:

We discussed possible aspiration He wants to try prevacid. My husbands worried it will have long term stomach complications. We see the pulmonologist this month were supposed to before the holidays just stuff got in the way and couldnt get down to albany. The dr. said he can hear stuff in his left lung, but does not want to give him another xray because hes had so many since august that he does not want to expose him to more radiation then he has to and hte pulmonologist may want to do one. We are giving him chewable antibiotics what a difference. He has an ear infection which is a first in a while .

We have to do round the clock xeponex (like albuterol) and just keep real diligent w/ his meds and watch his color. His o2 is 95. The dr didnt act thrilled about it it kept fluxuating between 94 and 95 % but they said we're happy if we get it to bounce to 95 a couple times. I am worried that his ability to fight this stuff off is getting worse.

The dr. said they dont like to give kids antibiotics so much generally but because zachs case is different, he doesnt have the ability to cough all his stuff up on his own, so he needs help more so and they can't risk letting it go and waiting it out to see if it goes away on its own. Because more than likely , it will turn into a more severe case of pneumonia. my mom tries to reassure me that I had bronchitis every other month and that i outgrew it around 6, but yet its back now. I get it all the time when ever i'm sick .

I just want him to be able to go out and play in the snow and have a holiday w/o getting just slihgtly tired where it puts him at risk for getting sick. We can't do anything because hes sick and i dont hold that against him because its not it, its more so that i want him to enjoy life to the fullest. Luckily our family is alike, we're a very easy going family and very understanding of each others needs in this household. I went and got his meds today and said yup us again, do i get frequent flier miles for coming in the most. Lol, the checker asked the pharmacist jokingly. I told him possible pneumonia again. The pharmacist said again? i said yeah. He asked me if i smoked. Which is definately not the case, no ones allowed to smoke anywhere near him. I just am frustrated, sometimes its just hard to understand why he is getting sick so easy.

mom to zach 4 ga2 alexis 6

__________________________________________________

[Guest guest]

,

Audrey was getting pneumonia very frequently as well, three times in Sept and the month wasn't even over. Anyway, they got her a Percussion Vest. It is like the kiddos that have Cystic Fibrosis have and it has really helped her. She gets two treatments a day, each lasting 20 minutes. I can't say she likes it, but.........it has helped. We mentioned it to her Ped and the next day the rep was at the house. Insurance is paying for it, thank goodness, because I think the cost is somewhere around $16000. Ouch! It would certainly be worth a try to ask the doc about it.

Hope Zach is feeling better soon,

Kathy, grandma to Audrey, 3 yearssarah wrote:

We discussed possible aspiration He wants to try prevacid. My husbands worried it will have long term stomach complications. We see the pulmonologist this month were supposed to before the holidays just stuff got in the way and couldnt get down to albany. The dr. said he can hear stuff in his left lung, but does not want to give him another xray because hes had so many since august that he does not want to expose him to more radiation then he has to and hte pulmonologist may want to do one. We are giving him chewable antibiotics what a difference. He has an ear infection which is a first in a while .

We have to do round the clock xeponex (like albuterol) and just keep real diligent w/ his meds and watch his color. His o2 is 95. The dr didnt act thrilled about it it kept fluxuating between 94 and 95 % but they said we're happy if we get it to bounce to 95 a couple times. I am worried that his ability to fight this stuff off is getting worse.

The dr. said they dont like to give kids antibiotics so much generally but because zachs case is different, he doesnt have the ability to cough all his stuff up on his own, so he needs help more so and they can't risk letting it go and waiting it out to see if it goes away on its own. Because more than likely , it will turn into a more severe case of pneumonia. my mom tries to reassure me that I had bronchitis every other month and that i outgrew it around 6, but yet its back now. I get it all the time when ever i'm sick .

I just want him to be able to go out and play in the snow and have a holiday w/o getting just slihgtly tired where it puts him at risk for getting sick. We can't do anything because hes sick and i dont hold that against him because its not it, its more so that i want him to enjoy life to the fullest. Luckily our family is alike, we're a very easy going family and very understanding of each others needs in this household. I went and got his meds today and said yup us again, do i get frequent flier miles for coming in the most. Lol, the checker asked the pharmacist jokingly. I told him possible pneumonia again. The pharmacist said again? i said yeah. He asked me if i smoked. Which is definately not the case, no ones allowed to smoke anywhere near him. I just am frustrated, sometimes its just hard to understand why he is getting sick so easy.

mom to zach 4 ga2 alexis 6

__________________________________________________

[Guest guest]

Hello,

We have a on that is now 9, and has had aspiration pneumonia 7 times before his 7th birthday,. He has GERD, asmtha, swollowing problems, and a host of other issues, hearing, vision, global delays, etc. He was tried on different meds for the GERD. Polosid, zantac, tagament, prilosec as well as antibitotics and nebulizer treatment (intal, albuterol, normal saline) every 3 hours for the asmaht inadditon to the regular meds of Flovent,and others that he was on then, ( they have changed). He recieced x rays on a regular basis, be never had a clear x ray until 18 months ago. Question for you?....How was his last chesst x ray?? Clear or not? My thoughts based on my experiance is, 5 times in 5 months appears to me that mayby it is not really going away, but improves slightly then re-0surfaces. (I am not a doctor, so it so only my opinon). You need to control the GERD, to prevent the aspiration, that may need to include surgical precedure. With a compromised pulmonary funtions, it

is important to treat with antibiotics, prevent or lesson the GERD, and aspiration, and attack this aggressivly to precent it from getting ot of hand. Our son was put on a cough medicne and an expectrant to bring up as much from his lungs as possible. In addition he ran high fevers.

Good luck...and hope he just past this in a hurry, and feels better.

Don,

Father of , no Mito Dx. but has the classic symptons, and a long list of other issues, hearing and vision impaired, PDD, global delays, GERD, swallowing problems, dsyphgia, CP, kidney problems, siezures, apnea, constipation, neurogenic bladder, and etc.

sarah wrote:

We discussed possible aspiration He wants to try prevacid. My husbands worried it will have long term stomach complications. We see the pulmonologist this month were supposed to before the holidays just stuff got in the way and couldnt get down to albany. The dr. said he can hear stuff in his left lung, but does not want to give him another xray because hes had so many since august that he does not want to expose him to more radiation then he has to and hte pulmonologist may want to do one. We are giving him chewable antibiotics what a difference. He has an ear infection which is a first in a while .

We have to do round the clock xeponex (like albuterol) and just keep real diligent w/ his meds and watch his color. His o2 is 95. The dr didnt act thrilled about it it kept fluxuating between 94 and 95 % but they said we're happy if we get it to bounce to 95 a couple times. I am worried that his ability to fight this stuff off is getting worse.

The dr. said they dont like to give kids antibiotics so much generally but because zachs case is different, he doesnt have the ability to cough all his stuff up on his own, so he needs help more so and they can't risk letting it go and waiting it out to see if it goes away on its own. Because more than likely , it will turn into a more severe case of pneumonia. my mom tries to reassure me that I had bronchitis every other month and that i outgrew it around 6, but yet its back now. I get it all the time when ever i'm sick .

I just want him to be able to go out and play in the snow and have a holiday w/o getting just slihgtly tired where it puts him at risk for getting sick. We can't do anything because hes sick and i dont hold that against him because its not it, its more so that i want him to enjoy life to the fullest. Luckily our family is alike, we're a very easy going family and very understanding of each others needs in this household. I went and got his meds today and said yup us again, do i get frequent flier miles for coming in the most. Lol, the checker asked the pharmacist jokingly. I told him possible pneumonia again. The pharmacist said again? i said yeah. He asked me if i smoked. Which is definately not the case, no ones allowed to smoke anywhere near him. I just am frustrated, sometimes its just hard to understand why he is getting sick so easy.

mom to zach 4 ga2 alexis 6

__________________________________________________

[Guest guest]

Hello,

We have a on that is now 9, and has had aspiration pneumonia 7 times before his 7th birthday,. He has GERD, asmtha, swollowing problems, and a host of other issues, hearing, vision, global delays, etc. He was tried on different meds for the GERD. Polosid, zantac, tagament, prilosec as well as antibitotics and nebulizer treatment (intal, albuterol, normal saline) every 3 hours for the asmaht inadditon to the regular meds of Flovent,and others that he was on then, ( they have changed). He recieced x rays on a regular basis, be never had a clear x ray until 18 months ago. Question for you?....How was his last chesst x ray?? Clear or not? My thoughts based on my experiance is, 5 times in 5 months appears to me that mayby it is not really going away, but improves slightly then re-0surfaces. (I am not a doctor, so it so only my opinon). You need to control the GERD, to prevent the aspiration, that may need to include surgical precedure. With a compromised pulmonary funtions, it

is important to treat with antibiotics, prevent or lesson the GERD, and aspiration, and attack this aggressivly to precent it from getting ot of hand. Our son was put on a cough medicne and an expectrant to bring up as much from his lungs as possible. In addition he ran high fevers.

Good luck...and hope he just past this in a hurry, and feels better.

Don,

Father of , no Mito Dx. but has the classic symptons, and a long list of other issues, hearing and vision impaired, PDD, global delays, GERD, swallowing problems, dsyphgia, CP, kidney problems, siezures, apnea, constipation, neurogenic bladder, and etc.

sarah wrote:

We discussed possible aspiration He wants to try prevacid. My husbands worried it will have long term stomach complications. We see the pulmonologist this month were supposed to before the holidays just stuff got in the way and couldnt get down to albany. The dr. said he can hear stuff in his left lung, but does not want to give him another xray because hes had so many since august that he does not want to expose him to more radiation then he has to and hte pulmonologist may want to do one. We are giving him chewable antibiotics what a difference. He has an ear infection which is a first in a while .

We have to do round the clock xeponex (like albuterol) and just keep real diligent w/ his meds and watch his color. His o2 is 95. The dr didnt act thrilled about it it kept fluxuating between 94 and 95 % but they said we're happy if we get it to bounce to 95 a couple times. I am worried that his ability to fight this stuff off is getting worse.

The dr. said they dont like to give kids antibiotics so much generally but because zachs case is different, he doesnt have the ability to cough all his stuff up on his own, so he needs help more so and they can't risk letting it go and waiting it out to see if it goes away on its own. Because more than likely , it will turn into a more severe case of pneumonia. my mom tries to reassure me that I had bronchitis every other month and that i outgrew it around 6, but yet its back now. I get it all the time when ever i'm sick .

I just want him to be able to go out and play in the snow and have a holiday w/o getting just slihgtly tired where it puts him at risk for getting sick. We can't do anything because hes sick and i dont hold that against him because its not it, its more so that i want him to enjoy life to the fullest. Luckily our family is alike, we're a very easy going family and very understanding of each others needs in this household. I went and got his meds today and said yup us again, do i get frequent flier miles for coming in the most. Lol, the checker asked the pharmacist jokingly. I told him possible pneumonia again. The pharmacist said again? i said yeah. He asked me if i smoked. Which is definately not the case, no ones allowed to smoke anywhere near him. I just am frustrated, sometimes its just hard to understand why he is getting sick so easy.

mom to zach 4 ga2 alexis 6

__________________________________________________