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Post by coopersmoma on Apr 22, 2004 22:24:51 GMT -5
Has anyone had numerous problems w/pneumonia, bronchiolitis, URI etc. I had to take Cooper back to the Dr. tonight only to find out he has pneumonia and he has been on antibiotics since Sunday. I know that someone told me w/DS children that they had lots of sinus problems but I wasn't aware of any lung associated infections and this is about the 5th one. Cooper is only 5 months old. He got a shot of Rocephin tonight, he has been running a fever since Sunday but I didn't want to rush into calling the Dr. when I just started the antibiotic, but it had been over 72 hours so that was long enough. Now I feel bad and think that maybe I should have taken him back to the Dr a little bit earlier. Can anyone tell me if this is common w/DS kids? Thanks a lot!! Wendey
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Post by MaggiesMom on Apr 22, 2004 23:52:31 GMT -5
Unfortunately, I hear a lot of parents talk about this. Does your child have heart issues?
One of the first things the docs told us when Maggie was released from NICU was to keep her home during cold and flu season. She still has an ASD and PDA that have not been repaired, so we have extra stuff to deal with.
Here's a brief list of some of the precautions we take...We get the whole family a flu shot in September, we NEVER take her to church, and from September till May we do not take her anywhere people are going to be gathering in large numbers. Including family outings at Christmas etc. We wash our hands all the time...all therapists who come in wash 1st thing, and we carry that germ-x lotion and use it constantly.
Probably the biggest thing that helps is I stay home with Maggie and her brother is homeschooled. So we don't get a lot of the general bugs that go around anyway. Most people can't do that, so you have to do the best you can.
Every cold or allergy spell that Maggie gets turns into croup and then goes into wheezing very quickly. She's only had pnumonia once that we know of. But none of it is fun.
We have purchased a nebulizer and use it as soon as symptoms begin to show. Even if we just use saline solution to help keep things breaking up, it seems to help.
We also run a humidifier in her room EVERY night. It's a pain in the butt because I have to clean them constantly to keep the mold from building up. My kids are allergic to mold, so I have to worry about that as well. Great huh?
Maggie also uses a nasal spray to help with her allergies and nasal congestion. It really helps. Our ENT suggested it.
Are we going over board? Maybe. But, since Maggie gets as sick as she does as quickly as she does, I can't imagine what life would be like if we didn't.
I hope some of that may help. I know it's a big worry. Maggie is doing better as she gets older. I really hope and pray that once she gets her heart repaired that we won't have to be worried with it all.
We'll be praying for you little man!
Take care.
Robin M - Maggie's mom
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Post by Elle on Apr 23, 2004 19:46:59 GMT -5
Bekah used to get the Croup often, bronchitis often and pneumonia occassionally. We kept her home from church from October to May until she was about 4. I used saline solution spray in her nose at night and kept a bottle of Albuterol just in case she had a bad croup attack. When she was an infant, I used to have to turn her on her tummy and karati (sp?) chop her back up and down for a few minutes. Then as soon as I turned her over on her side she would cough up a bunch. This helped allot. Oh yeah, Bekah didn't have a natural coughing reflex that we all have so she would get deep chest infections often. We all normally prevent sinus drainage from settling in our chests by coughing so by not having this, it posed a big problem. I think that getting her adniods and tonsils out helped tremendously as well.
Elle,mom to three boys and Bekah(DS)12
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Post by coopersmoma on Apr 23, 2004 20:29:01 GMT -5
Robin- Yes Cooper had a VSD, ASD and a PDA and they were all repaired by open heart surgery in January. He stays with my mom during the day so he is not around other children. No one in the family has been sick. Maybe his immune system is just down. Not sure. He was born premature and takes a shot each month to prevent RSV. We have a nebulizer but it has not helped this time around. The humidifier in his room does help we started using that about 1-2 months ago. I appreciate the feedback and if anyone else has any suggestions let me know. Thanks Wendey
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Post by rickismom on Apr 24, 2004 14:59:11 GMT -5
The airway passages of children with DS are narrower than normal, and this apparently contributes to their having a high rate of pneumonia--- but ussual onlt to age four or so. Ricki had twice (when little), but I donno- I didn't keep her locked up at home. But I did watch carefully for any sighns of Upper respiratoy infections, and treated them quickly. I also gave her a pneumococcus vacine, which may have helped. (I gave her at age 3, and she has far fewer problems, although her age is alsom surely a factor.
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Post by paulineuk on Apr 24, 2004 16:44:26 GMT -5
Hello. Nicky, age 16, had pneumonia at least 30 times in the first 7 years of his life and spent most of the time as an in patient in hospital  . Most of them were caused by aspiration onto the lungs rather than infection. He had viral pneumonia when he was 14 and spent another week in hospital. He seldom gets colds and gets a flu injection every year and he keep surprisingly well ;D. He has many medical problems including Eisenmenger syndrome, pulmonary hypertension, chronic lung disease, an inoperable oesophageal stricture and is tube fed. He needs a heart and lung transplant to survive beyond his late 20's early 30's . Pauline UK |
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Post by justinsmom on Apr 24, 2004 21:24:28 GMT -5
Justin was forever hospitalized with pneumonia which in turn exaerbated his asthma, just in 2002 alone from Jan. til May he was hospitalized 6 times  and we are talking 1-2 week stays. I wasn't until he had his T/A and tubes in Oct 2002 that we had finally got the little kick in the pants the asthma meds needed, so far knock on wood he has not been hospitalized since, although yes he has had pnuemonia but we now have the tools to nip it in the bud, we start with steroids first sign of a cold and off to the docs for a script of Zithromax and he doesn't get as bad as he did before. |
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Post by Jason on Apr 25, 2004 15:06:20 GMT -5
Hi There,
First time on the site. My daughter Maija has had a few bouts of pneumonia and a continual cold. We're thinking of getting the pneumococal ? vacination when she turns 2.
J
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Post by DereksMom on Apr 25, 2004 19:55:00 GMT -5
Derek has pneumonia once when he was 8 months old. He had the Pneumovax when he was about 14 months even though they recommend waiting till he was 2. He hasnt had pneumonia since though. When he was younger he was constantly sick with a cold and chesty cough that usually turned into a upper respiritory infection, but now that he is older (almost 6) it has been alot better and he hasnt been getting sick nearly as often, maybe 2 - 3 times a year compared to about 8.
Hugs
Allison
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Post by Jason on Apr 26, 2004 19:57:01 GMT -5
Has anyone else had the Pneumovax vacine? I figure every bit of help is worth it.
J
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Post by coopersmoma on Apr 26, 2004 20:48:22 GMT -5
Cooper has had the Pneumo. Vaccine and it hasn't helped much, obviously. His immune system must be really low. It probably hasn't had much of a chance since the time he was born we have been sick or having surgery. I hope this gets better once the weather gets normal!! I really appreciate everyones input! It helps to know that we are not the only ones. Thanks |
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Post by DereksMom on Apr 26, 2004 22:05:23 GMT -5
Like I said...this is the first year that Derek hasnt been really sick for long periods and he is going to be 6. When he was little I didnt think that he would ever grow out of it, but finally has.
Hugs'
Allison
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Post by steffipoo on May 10, 2004 23:03:35 GMT -5
WELL WELL WELL I believe kids with ds get pneumonia much easier than typical kids. I think this not only because my girl Olivia had been hospitalized with it 7 times before 2 years old and had it at least 3 other times that did not require hospitalization.My bro is a peds nurse and the #1 reason why kids are in there is either(kids with ds) are either heart related issues or #2 poneumonia. EVERY time he gives my number to a mom there the kids has pneumonia.Most are younger like your child or not walking yet I think their cough is not as strong and the fact that kids with ds take longer to walk does not help cause being upright is a surefire way to heal those yucky lungs. Liv has only had a couple pneumonias since she started walking and we lived at the hospital for a long time.TIP for ya... Sit cooper as high as he will tolerate up when he sleeps LIKE KING COOPER!!!!We usta make a big deal of Liv when she was QUEEN for the night.REFLUX and airway probs can cause more pneumonias which are more common in kids with ds so might wanna ask for a swallow study if he continues to get pneumonia. GOOD LUCK STEFF
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Post by jordansmom on May 10, 2004 23:23:43 GMT -5
Hello,
Jordan got pneumonia alot when she was a baby. For three years, she would get it in the same months as the years before. Getting her adn. and tonsils removed helped somewhat, lifting the head of her bed helped some too. We have never given her the flu shot since the very first one because she got unbelievably ill and we thought we would lose her. We never really went too many places when she was a little baby, but constantly had people visiting. Lots of cleaning going on in those day! lol
Hope he gets better soon!
Angie
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Post by coopersmoma on May 11, 2004 21:54:43 GMT -5
Thanks, Cooper is actually better from the pneumonia but is now getting a sore throat, I started meds yesterday and hopefully I caught it quick enough that he will not end up with it in his lungs. He has a really bad cough right now. I really appreciate the advice. I will take any advice I am a new mom and love all of your input!!  |
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. Most of them were caused by aspiration onto the lungs rather than infection. He had viral pneumonia when he was 14 and spent another week in hospital. He seldom gets colds and gets a flu injection every year and he keep surprisingly well ;D. He has many medical problems including Eisenmenger syndrome, pulmonary hypertension, chronic lung disease, an inoperable oesophageal stricture and is tube fed. He needs a heart and lung transplant to survive beyond his late 20's early 30's 
and we are talking 1-2 week stays. I wasn't until he had his T/A and tubes in Oct 2002 that we had finally got the little kick in the pants the asthma meds needed, so far knock on wood he has not been hospitalized since, although yes he has had pnuemonia but we now have the tools to nip it in the bud, we start with steroids first sign of a cold and off to the docs for a script of Zithromax and he doesn't get as bad as he did before.
jackie
