DownSyn Forum

[TracyR]

Hi all,

To tell the truth I feel bad complaining, so many people have so much more on their plate than me right now. But I just need to vent in a place where I know I will be understood. My friends might be great, but they simply - thankfully - don't understand these struggles.

Ezra has been really sick all week. This is his 9th lung infection in 2.3 years. This time it's yet another double pnemonia. He has had fever between 100.4 - 104 since Sunday. The doc has wanted to see us every day this week. Ezra has been getting inhalations every two and a half hours for days. His lung x-ray showed big white clouds over both lobes. He has also been on oxygen for a few days and still needs it when he sleeps - he drops to the low-mid 80's when he sleeps. All I can say is thank GD we have all the equipment here at home - the oximeter, the nebulizer and spacer, the oxygen concentrator, the tape and tubes, etc. Otherwise he would have been in the hospital practically this whole winter! He's gotten two intramuscular shots, oral antibiotics, the whole deal.

He had a swallow study and though no aspiration was apparent, it was not ruled out completely. He was on Gaviscon for acid reflux for months, but doesn't need it anymore. We tried Singulair. We tried Bronchi-kid. We tried Zantac (to remove acidity in case he was silently aspirating his reflux). We give him preventative puffs of Flixotide in a spacer twice a day, every day. They think he has asthma. Is there anything else we are missing? Something else we can suggest to his ped? Or do we just go on treating every lung infection as it comes??? And just a side question, aren't all these antibiotics really bad for his little body???

I am so tired and have hardly slept for the last four nights. He is miserable and to top it all off, he's bored! I am overwhelmed with life with seven kids, let alone a sick kid and preparations for Passover. I can't just sit with him all day and play with him - as much as I'd love to!

On a happier note, I think he finally has a first word. Car. He goes "Ahhhw" while pointing at cars, while riding in a car, while playing with cars. I think that he is actually trying to say car! And he doesn't even say "Mama" yet.

Ok, thanks for letting me vent. I think I feel better already.

*Updated below

_________________
Married, mother to 7: Girl (1994) / Boy (ADHD, 1997) / Boy (LD, 2001) / Girl (ADD, 2002) / Girl (2006) / Boy (2007) / Ezra (DS, 12/27/2009)

[Catty]

Sorry to hear about Ezra, i remember those days with Kat. What we did with was keep her on a low dose antibiotic everyday for 2 years to help keep the infections from coming back. She had repeat episodes of bronchitis and asthma. We also gave her a vaccine called pnomovax(not 100 percent sure on the spelling), but it helps prevent several strains of pnemonia,talk to the ped about vaccines that can help prevent pnemonia,there are some out there.

Hugs, i know this can be exhausting:)

[DS Mom]

Hi,

Poor Ezra….at least you are able to care for him at home.

I’m wondering about reflux, and whether there have been any episodes of choking or gagging before pneumonia sets in.

You’ve mentioned that Ezra has had reflux. Has Ezra had a pH and Impedence probe study done recently? This tests for reflux – how often it is happening, how high up the stomach contents go, and how acidic it is.

I hope that he feels better soon, and that you can get some rest!

Hugs,

_________________
DS Mom

[Rae]

So sorry that you are going through this. Both my kids had pneumonia in January. Sam was hospitalized for three days for dehydration then too. Scary stuff and exhausting. Hang in there and I hope they find the right treatment for him so he isnt so sick all the tume. Hugs.

[Rae]

So sorry that you are going through this. Both my kids had pneumonia in January. Sam was hospitalized for three days for dehydration then too. Scary stuff and exhausting. Hang in there and I hope they find the right treatment for him so he isnt so sick all the tume. Hugs.

[mary c]

I am so sorry you and Ezra are going through this. When we adopted our second kid (not DS) he had terrible hyperreactive airways so that is he got a tiny cold it would become a huge asthma attack. For the first three months we had him he had to be nebulized every two hours 24 hours a day. It was so exhausting, I remember sleeping sitting up on the floor of his room with him on my lap--it was only the sound of the nebulizer emptying that would wake me up. I was so exhausted I fell asleep in the middle of a MRI of my head (the first time that had ever happened according to the technician).

I take it you are seeing a pulmonologist at this point rather than just a ped. I know that we had to test for CF with our son because of his constant lung infections. I am also wondering if he has sinus infections that migrate to the lungs--I know our Anna got a lot of sinus infections which then seemed to turn into bronchitis before we got her adenoids out. I don't have any answers but I'm thinking about you.

_________________
Mary
Mom to Libby 6/92, Alex 9/93, Anna (DS)12/12/03

Please support the Down Syndrome Research and Treatment Foundation http://i139.photobucket.com/albums/q284/maryc_010/a13-1.jpg[/img]
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[LinMac]

After reading your post I feel you have every entitlement to complain!
Thats a lot of stuff going on for Ezra and you and your whole family.

I can't offer any advice with the medical stuff but want you to know I'm praying things improve at your house and you can get the normal rhythm back into your family life!

Love to you at this stressful time.....Consider yourself well and truly huged!

_________________
Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 9 - DS)


First Communion Day

[TracyR]

Thanks all for your responses and support! It does help to feel that we are not alone.

Yes, it is exhausting! We do see a pulmonologist but his only answer was to put Ezra on antibiotics anytime he has symptoms of respiratory distress (low sats). I mentioned CF to the ped and was told that the combination of DS and CF is so rare, and recurring lung infections is common in kids with DS anyway, so they generally don't test for that. Ezra's ped at the Down syndrome clinic wanted an echo done to make sure there was no pulmonary hypertension. Thankfully there isn't!

"pH and Impedence probe study" - so you are saying he could be silently refluxing and aspirating it all into his lungs? He used to cough and gag while eating on a regular basis, but hardly does that anymore. What does sometimes happen is he seems to need to throw up, and then chokes it back down and gags on it, but nothing comes up. I have often wondered if that's going straight into his lungs. Do you think the study is worth it? I'll mention it to the ped (we go back first thing Sunday morning to see how he's doing.) Oh - just remembered, he often will cough while drinking water. I think I recall reading on here that water is the most easily aspirated due to its thinness.

Ezra is doing better today. His sats are still going quite low when he sleeps, but when he's awake he stays in the low nineties for now.

Thanks again for all your support!

_________________
Married, mother to 7: Girl (1994) / Boy (ADHD, 1997) / Boy (LD, 2001) / Girl (ADD, 2002) / Girl (2006) / Boy (2007) / Ezra (DS, 12/27/2009)

[lespring]

I personally, in real life, know two kids with DS/CF!!!! When Angela was little and constantly getting pneumonia, CF was one of the first things her pulmo tested for.

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 26, Noah 25, Tyler 23, Bryon 23, Angela 16 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 7 (DS adopted from Serbia 12/2011, AAI non-fusion)

[TheBradyBunch]

If he coughs while drinking water then you know thin liquids are causing problems. I would thicken his liquids. I would also keep him on anti-reflux meds. Noah has silent reflux, and will sometimes cough and swallow his reflux if it gets bad. I have him on prevacid everyday now, he used to be on ranitidine, which had to be changed because the coughing was happening.

_________________
Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS, ASD) (May/07), Jesse Lynn (July/08 ), Tessa (Apr/10), Kaitlyn (Jun/12)

"Sometimes the things we can't change end up changing us"

[DS Mom]

Hi,

I’m so glad to hear that Ezra is starting to feel better!

What are his sats like when he is not sick?

It is possible that he is aspirating some of what he is refluxing. There can be a correlation between low sats and reflux. The body will protect the lungs by pausing in breathing when reflux occurs. He could be refluxing up high enough and often enough that his blood oxygen level is affected.

Since you are still seeing symptoms of reflux, as a first step you should talk to his doctor about the reflux and consider putting him back on medication for it. Also try keeping him upright for 20 minutes after meals, and try feeding him smaller meals more often. If his symptoms don’t improve enough, or if he gets pneumonia again, you may want to consider the pH & impedence test.

It’s also possible that aspiration is occurring when he is eating or drinking. Since he is coughing when drinking water, I would suggest showing his occupational therapist what is going on at mealtimes. The therapist can offer practical suggestions on how to minimize the possibility of aspiration.

Hugs,

_________________
DS Mom

[maggiebeth25]

testing for CF is so easy! it would be worth doing.

_________________
Maggie, mom to Rachel (9/19/09), duodenal atresia repair on 10/26/09, VSD closed
and Charlie (8/12/11) MSPI
www.maggiefluck.blogspot.com

[TracyR]

Hi everyone,

Again, thanks for all the replies! Ezra is doing much better and was allowed back to daycare today but only for half the day, seeing as he still needs oxygen when he sleeps. He drops as low as 81-82 regularly when he sleeps. The doc. doesn't know why that's happening after his daytime sats are in the low-mid nineties and his lungs sound better. He's still getting plenty of inhalations and antibiotics. So he is sending us back to the pulmonologist to see A) why his sats are still so low when he's asleep B) to see what he thinks about doing further testing for GERD, CF, etc. The first appointment we could get is in two weeks.

His healthy sats are 96-98, awake and sleeping.

Oh, and the doc. put him back on Gaviscon to see if that helps.

_________________
Married, mother to 7: Girl (1994) / Boy (ADHD, 1997) / Boy (LD, 2001) / Girl (ADD, 2002) / Girl (2006) / Boy (2007) / Ezra (DS, 12/27/2009)

[Momtoseven]

I hope you can get some answers. Mark had ph for the first few years and the cardiologist had him on meds and it went away. Mark also has reflux and frequently gags and vomits, but it was mostly with thicker and chunkier substances which they said was unusual - most kids have trouble with thinner liquids. Keep us updated.

_________________
Maureen - Mom to Daniel(24), Brandon(22), Jordan(16), Thomas(14), Carrie(10), Samuel(7) and Mark (4)
https://www.carepages.com/carepages/MarkEdwardC32708

[Tigger]

Talitha was on low dose antibiotics for what seemed like forever but eventually - somewhere around 3 I think, she improved and has had fewer and fewer lung issues as time has gone on. Her SATS when she sleeps still often drop because she has sleep apnoea which we are having investigated yet again next week. But overall things improved as she got older.

She still coughs and chokes occasionally when drinking thin liquids and her speechie wants another swallow study done. I am fairly sure she isn't aspirating nowadays because she is rarely sick now. She seems to manage things herself

_________________
Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

[rachel'smom]

So sorry to hear that Ezra hasn't been feeling well. I hope you get some answers soon!

_________________
Sara
mom to Rachel Ahuva 5 (DS), CB 4, Michael 2 1/2, Shoshana (born Dec. 2008)

[Amy]

Does Ezra get a snotty nose before he gets the lung infections?

Austin's ped puts him on antibiotics every time he gets a real snotty nose. I love her. I thank her every time I go in to see her because I swear it's kept him out of the hospital. Austin's nose is REFLUX related (Gurd) he has a large throat but typical sized palate which allows the stomach fluid to go up into the nasal area when he refluxes. So he gets sinus/nasal infections frequently because of the bacteria. We had a swallow test done that revealed the reflux every time he ate!

On a totally different note Ezra is SOOOOOOOOOOO cute. I just wanted to tell you that.

_________________
Keep the Faith, Amy
Mom to Kristin (26) Jessica (24) Rebecca (21) Rachel (16) Sarah (14) Hunter (11) & Austin (7) DS

[luvpapa]

Hello Tracy: May god give you all the strength to manage all you problems.. I can understand how tough it is for you right now. My son is also recovering from pneumonia. last 3 weeks were also similar for us..


All the mothers are doing a great and better job as compared to fathers




Take Care,
luvpapa

[TracyR]

Thanks everyone! Ezra is doing much better. Still nebbing him every 2 1/2 hours and still getting steroids and antibiotics but on the way to recovery!

Thanks Amy! I think so too!

_________________
Married, mother to 7: Girl (1994) / Boy (ADHD, 1997) / Boy (LD, 2001) / Girl (ADD, 2002) / Girl (2006) / Boy (2007) / Ezra (DS, 12/27/2009)

[katina]

Hello Tracy !
I am happy to hear Ezra is better. Oh, my when I read your post I totally felt I could relate. And i must tell you that you are a super mom, ezra is very lucky to have u.
My David is 6 yrs old, and appears to get pneumonia every spring. Over the years we have learned that his low tone plays a huge role on his reflux, his ability to cough phlem, and his sleep apnea. He had fluctuating reflux results with swallow studies and ph probes, so we were a bit confused. I did noticed that he would couch at night, so I had the doc. Order a sleep study because his sats were dropping in the 70's.
I wonder if you can have the dr. Order a sleep study. David,s reflux showed up in the sleep study. I got a second opinion from a GI dr. And she advice us to put him on Prevacid and on miralax to help with his slow motility. David continues to get sick, but now only once per year,it also appears that his airway gets quite narrow. The ent removed his tonsils and we saw a huge difference with his breathing at night. I wonder if Ezra has low tone in his neck, or has obstructive sleep apnea. David sleeps in a 45 degree wedge to help him open his airway and to control the reflux. If he sleeps In a crib or a toddler bed you may want to raise his head board or mattress with pillows or large books. I got my wedge and a sling through tuckerslings.com. Also if you are worried about antibiotics, you can give him powder probiotics, yogurt and kefir. Iam lucky David has a gtube, but you can mix kefir with juice or add probiotic powder in his favorite drink. Please receive huge hugs, I read your post and It really hits home. Best wishes for you and yours. Katina

[TheBradyBunch]

I don't know if he drinks a lof of milk, but dairy products can cause extra mucus, especially if the child has a sensitivity to it. I don't think it cause this many problems, but I know it also contributes to reflux. Maybe try removing dairy at least until he's fully recovered.

_________________
Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS, ASD) (May/07), Jesse Lynn (July/08 ), Tessa (Apr/10), Kaitlyn (Jun/12)

"Sometimes the things we can't change end up changing us"

[LinMac]

Quote:

but dairy products can cause extra mucus,

so can bananas!

_________________
Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 9 - DS)


First Communion Day