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UPDATE!! DS sick for almost 5 months - at witts end & frustrated UPDATE!!!!

Posted by on Feb. 3, 2013 at 4:34 AM
  • 91 Replies

Saw the new ENT - his andoids are infected and enlarged and he tested positive for strep throat pharyngotonsillitis (both tonsillitis and pharyngitis) - which is causing the fevers and most other symptoms. The coughing is from the post nasal drip from the swollen and infected adenoids which is also causeing sinus infections (hence the chronic runny nose - the stuffy nose is due both to the sinus infection and the swollen adenoids) His ENT will be getting the insurance authorization for the surgery - wich will occur some time next week. For now, its some new antibiotics and a prescription decongestant/cough suppressant. I am also on antibiotics because i got the pharyngitis as well as a slight sinus infection.

I think i may know the real reason he just wont get better, and no treatments so far have worked!

ds has been sick now for going on 5 months. He has seen several doctors and have gotten a different diagnosis each time, and still has not gotten better. I was doing a little research and think it might be tonsillitis & adenoiditis.

SEPT (mid month): First time he got sick, he just started kindergarten and came down with a cough and the sniffles. Fever on and off. I brought him to his pediatrician who said it was just a little allergies. That the post nasal drip from the stuffy nose was making him cough and nothing to worry about. They gave me claritin and tylonol for the slight fevers and sent us on our way.

NOV (mid month -before turkey day): About a little over a month later i brought him back since there was no change except the coughing got worse and his throat was sore. He also had 2 of what i though were canker sores inside his cheek. I attributed this to sleeping with his mouth open, being sick in the winter and the dry heat in the house. We saw a different doctor within the same office. She said that he had a little head cold. Gave me dimatap and tylonol for the fevers and a topical creme for the mouth sores told me to keep him hydrated. I wanted antibiotics but they said he was fine - no phlegm no infection. She also said that this too was from kindergarten germs and not only unavoidable, but nothing mor eshe could do for it. I was not satisfied but left.

DEC/JAN:(end dec/beg jan) About another month and a half later he got even worse - i think having the stomach flu on top of what ever he had to begin with made him worse. His fevers got high - 102-104, the cough was worse still, no change in the stuffy nose - still congested and runny. After trying to lower his fevers down with cool rags and motrin/tylonol and held his cough with cough meds to no avail, i called his doc and asked for an appointment ASAP! He wasnt eating and rather lethargic. Sleeping most of the day and night, a little dehydrated still from the flu. Not his normal self. Then he got really bad to where he started passing out and was burning up - we ran him to the ER (one block away aprox 3 min). The ER doctors said that he had RSV, Bronchiolitis & Sinusitis. He kept passing out in the ER. The had to put him on oxygen, IV antibiotic and IV steroid and fluids for the dehydration. His heart rate was 180 and he was just sick. At this point you could see the whole roof of his mouth covers in white and red patches and his throat hurt too much to talk. He also had a whitish/yellow sore again on the inside of his cheek. We took him home an dhad him rest.The ER doc gave him the antibiotic for the sinusitis, tylonol/motrin for fevers & some heavy duty cough suppressant that knocked him out cold. We called an ENT for an appt the next business day(monday - Er visit was saturday) and got an appt for the for the following week. - ds did not go back to school at this point.

ENT - 1 WEEK LATER: Ds coughing was getting worse still. Now he would have these coughing attacks where he could hardly catch his breath. Nose till all stuffy and runny. Still not eating more then a few crackers here and there. The antibiotics had no effect. The fevers had gone down to slight - 99-101 - and were sporadic (i was happy about this at least). He was also complaining of neck & headaches not, which we attributed to all the coughing and from sleeping on an incline (to curtail the post nasal drip while he was sleeping) The ENT said that he didnt have bronchiolitis, but a slight case of asthma. He gave us an abuterol pump to be used 2x's a day or as needed. And told us to follow up with a pediatrician. The pump i think made his attacks worse and more frequent.

NEW PEDS: after about 5-6 days (dh took him i was at work), ds had a new appointment with a new pediatrician. Hes lost about 7 -8 lbs so far and looked like a weak, starved skinned sick little chicken. I felt so bad. The mouth patches/sores were constant - the previous cream did nothing. He would cough and cough and cough, and his nose was stuffy but just leaking all the time. The throat was still raw and his fevers, although mild was every day since the ENT appt. He had started wheezing a little as well. New doc went back to the ER diagnosis but said it had become bronchitis. She gave me a steroid oral suspension for the cough - to help stimulate his bronchioles - or something to that effect, it was to help curb the coughing fits. A nebulizer with liquid abuterol sulfate, nose spray for the congestion and the same cough medicine as the ER and said to come back in a week.

NEXT APPT: At first the nebulizer seemed to be helping. He still had a cough, but the coughing attacks were only once or twice a day. The fevers went away. No change on the runny nose/congestion or the patches and blister looking things on the back of his throat, roof of mouth, cheeks or inner lips. Still at the next appointment with the new doc. He got the ok to go back to school. So he went starting this past Wed. We were to maintain the nebulizer treatments 3x's daily, cough & steroid med as needed. He also started getting his appitite back (thank the lord). Not as big as before he got sick but better then he was. He was still kinda weak and sleepy. taking naps after school and falling asleer an hour before his normal bedtime at 9pm. His personality was starting to come back, but with some changes. Hes been getting agitated easily and throwing tantrums and at some points down right disrespectful. I figured maybe cause he was tired and needed some time to adjust to being back in school and cranky because he was still a little weak and needed rest.

Starting Thurs night and following into friday the coughing fits are back. Thankfully not at the same magnitude as before, but only slightly less often. Fevers came back (low to mid), mouth patches/sores still there. No sore throat yet. Runny nose just never went away, not even briefly during this whole ordeal. Hes been a little more sleepy, and starting to get that lazy/lethargic-ness (word? it is now) back. Just wants to lounge on the couch and watch tv, lay in his bed and play video games or color quietly. Not his normal, joking, happy self.

SIL mentioned his tonsils. And that made me think. When ds was 2 he did have an issue with being sick and his tonsils swelled so big his throat almost closed. He had to bend his neck in such a awkward way on order to breathe. He went to the hospital and was admitted for 3 days. I told the ENT that time that myself and my 2 sisters had to have ours removed at a young age. My mother as well. Also dh had issues with his - no surgery though. SIL - removed, other SIL issues, but still has hers. I also asked if we should get ds removed - it scared me to think that they could swell and cut off his airway. The ER ENT said that he was too young and that this was only one infection - they only do it if they see 5 infections in the same year.

When i looked at the symptoms for tonsillitis/adenoiditis, almost all of the symptoms matched up.. Except for the patches/sores in the whole mouth. Every document i could find said that the patches appear on the tonsils and nothing about the sore like things. Also it seems like as soon as he goes back to school he gets worse. At home for a while he seems to get just a little better - but then a few days in school and he goes back to square one again.

MY QUESTIONS:

Did your children ever have tonsillitis/adenoiditis?

If so What age?

Surgery?

Did they experience anything like what my ds is going through?

Any issues with doctors not being able to diagnose?

If you are familiar with the sickness, does it seem like ds might be suffering from it?

*note: we will be going to yet another doctor - another ENT - for some testing tomorrow afternoon. Just trying to see what info i could gather before we went. Wanted to see if any one else can relate - Thanks in advance for your feedback*

by on Feb. 3, 2013 at 4:34 AM
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Replies (1-10):
Anonymous
by Anonymous 1 on Feb. 3, 2013 at 4:43 AM
DS had his adenoids removed due to them being swollen all the time. He was 18 months.
tricia1332
by Platinum Member on Feb. 3, 2013 at 4:45 AM

No none of my kids have gone through anything with their tonsils.  Poor little guy I hope they find what's wrong and gets better quick.

gabeybaby07
by Silver Member on Feb. 3, 2013 at 4:49 AM
Quoting Anonymous:DS had his adenoids removed due to them being swollen all the time. He was 18 months.

did he experience any symptoms similar to my ds? Im just curious. We have been fed a bunch of different diagnoses and all were wrong. How long was you ds sick? was there any trouble with mixed diagnoses before it was determined it was def his adenoids?

I feel so bad for my son. So helpless. Nothing mommy and daddy are doing are helping. He just isnt getting better. I just want to take it all away for him and give it to me, just so he could feel better finally. My little monster. It kills me to see him suffering with not feeling well.
wishbearmom
by on Feb. 3, 2013 at 4:53 AM

Allergies should not cause a fever; fever = infection. I think you're completely on track with tonsilitis. My oldest daughter gets sick every winter with a sore throat and fever, and I'm pretty sure getting her tonsils removed would solve the issue.

brandyblx
by Silver Member on Feb. 3, 2013 at 4:54 AM

 Bryce (youngest)went through exactly what you are describing-only it didn't last as long.I got pissed at the pedi and forced him to run every test he could think of.Didn't find out what it was until I forced them to do chest x-rays.

 He had walking Pneumonia!! Damn doctor's should listen to us moms when we tell them there is something wrong with one of our kids,kwim?Maybe have them do some chest x-rays (if they haven't already).I hope he feels better soon.GL

gabeybaby07
by Silver Member on Feb. 3, 2013 at 4:57 AM
Quoting tricia1332:

No none of my kids have gone through anything with their tonsils.  Poor little guy I hope they find what's wrong and gets better quick.




Thank you! We hope so too. Hes been suffering with whatever he has for so long now. I feel awful. After hours of google & reading medical journal exerpts, symptom checkers, tons of literature on tonsillitis and the adenoids as well as reading forum entries to see if anyone experienced something similar (no help on that route - everything was either unrelated, too vague or inconclusive and lacking updates) I feel pretty confident in thinking that its his tonsils. But im not a doctor so i really cant say for sure. Its so frustrating!
gabeybaby07
by Silver Member on Feb. 3, 2013 at 5:04 AM
Quoting brandyblx:

 Bryce (youngest)went through exactly what you are describing-only it didn't last as long.I got pissed at the pedi and forced him to run every test he could think of.Didn't find out what it was until I forced them to do chest x-rays.

 He had walking Pneumonia!! Damn doctor's should listen to us moms when we tell them there is something wrong with one of our kids,kwim?Maybe have them do some chest x-rays (if they haven't already).I hope he feels better soon.GL



Thanks! I was so pissed at all the doctors! They did do a chest xray in the hospital. It was clear and in this whole ordeal we never had an issue with phlegm. He hasnt had one since he started wheezing though. Thanks for the input. Sorry that you had to go through something similar. As far as the doctors, by november i was pretty much demanding antibiotics and they said no kids get immune to easily. All tehy had to do is look in his chart to see how many times hes had antibiotics. That was his same pedi since birth. They have all his records. In the hospital i had to threaten with lawyers in order just to see the on call pedi and get the antibiotics. The hospital - although right outside my door - its the worst one in the city. They are known for mistreating and misdiagnosing patients. They are closing it down. If i had my choice i wouldnt have gone there, but once i saw ds eyes roll back and go limp and his body was on fire - i didnt even think about getting an ambulance to a different hospital - we just put him in our arms and ran like hell.
brandyblx
by Silver Member on Feb. 3, 2013 at 5:11 AM

 Neither did we.Bryce just started running these horrible fevers and cough (not a heavy cough,sounded more like a cold).About a week into it I knew there was something really wrong because he would get up at 9:00a.m.,drink some orange juice and lay down on the couch and go right back to sleep.He wouldn't play,he wouldn't eat,he had NO energy.Who has ever heard of a 4 year old that slept ALL DAY/NIGHT and even refused to walk when we'd go grocery shopping.He would throw a fit so we would put him IN the buggy.

Quoting gabeybaby07:

Quoting brandyblx:

 Bryce (youngest)went through exactly what you are describing-only it didn't last as long.I got pissed at the pedi and forced him to run every test he could think of.Didn't find out what it was until I forced them to do chest x-rays.

 He had walking Pneumonia!! Damn doctor's should listen to us moms when we tell them there is something wrong with one of our kids,kwim?Maybe have them do some chest x-rays (if they haven't already).I hope he feels better soon.GL



Thanks! I was so pissed at all the doctors! They did do a chest xray in the hospital. It was clear and in this whole ordeal we never had an issue with phlegm. He hasnt had one since he started wheezing though. Thanks for the input. Sorry that you had to go through something similar. As far as the doctors, by november i was pretty much demanding antibiotics and they said no kids get immune to easily. All tehy had to do is look in his chart to see how many times hes had antibiotics. That was his same pedi since birth. They have all his records. In the hospital i had to threaten with lawyers in order just to see the on call pedi and get the antibiotics. The hospital - although right outside my door - its the worst one in the city. They are known for mistreating and misdiagnosing patients. They are closing it down. If i had my choice i wouldnt have gone there, but once i saw ds eyes roll back and go limp and his body was on fire - i didnt even think about getting an ambulance to a different hospital - we just put him in our arms and ran like hell.

 

Life isn't like a box of chocolates . . . it's more like a jar of jalapenos.. What you do today, might burn your ass tomorrow!

gabeybaby07
by Silver Member on Feb. 3, 2013 at 5:18 AM
Quoting brandyblx:



wow. Yeah thats how ds is. Just zapped of energy. He is eating a little more then when he was in the ER.. but its still not much maybe once or twice a day. He doesnt want to leave the house - not even to target with grandpa - and he always jumps at the chance because grandpa always buys him a new toy. Hes sleeping often and when hes awake, he looks like hes about to fall asleep. really no interest in anything. And his attitude/agitation is getting worse. I think its because hes tired of being sick. I ask him every day how hes feeling and he tells me "not better mommy just not better!" and he has even cried a few times. I just want him to get better!!
gabeybaby07
by Silver Member on Feb. 3, 2013 at 5:30 AM

BUMP!

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