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

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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
Replies (21-30):
gabeybaby07
by Silver Member on Feb. 3, 2013 at 6:45 AM
Quoting MooseMomma:

the hospital we went to unfortunately has the worst rep in the whole area. There is usually only 1 doctor for all of er, triag and peds. some times they have a peds that comes down from teh 4th floor. I went to the carge nurse and started yelling and threatening to sue if my son didnt get a real dr, not a PA. The hospital is known for misdiagnosing/mistreating patients. The thing is my ds was in teh ER the night before he started passing out. and after dh (i was working) went trough the list of symptoms and how long - they told him it was just because he was in kindergarten and gave him 2 yes 2 of the same script for tylonol for the fevers - and he was 102.7 when they released him - the next night is when his eyes started rolling back and he started passing out.
The reason why we went to this hospital, knowing the reputation, was because it is only one block from my apartment. When ds's fever spiked and i saw his eyes go back and he was just limp as a wet noodle - me and ds didnt even think to stop and call an ambulance to take us to another hospital - we just went into panic mode and RAN him there. We put is coat over him, grabbed a blanket and bolted out the door and made a b-line straight for the er. They drew some blood after 6 needle sticks and a very angry screaming - hysterical crying me was demanding i see the head nurse and a peditrician. The whole visit we were released still with a fever of 102 - it did go down from 104 - and after only being in the hospital a few hours. I really wanted him admitted. But the doctor just brushed me off like i had no idea about what was best for dh - i called my lawyer next day - to find out they cant help me.
elzingah36
by Gold Member on Feb. 3, 2013 at 6:45 AM
Oh honey, my heart is breaking for your DS and your family. My youngest DS(was 4 1/2 at the time,now 13) had his tonsils and adenoids removed the second time he for strep and ear infections. He's
been good since. It has to be
ABSOLUTE HELL to not find anyone
who will listen. You could threaten
with letting your local news station
know that they won't even do a
mouth swab,or you could bluff a little
or start up one anyway...a petition at
change.org(I hope I can post that,sry
if they remove it)where hundreds if
not thousands will sign your petition
to get the doctors to do better
testing at least. Just a few ideas just
in case there's no prevail whatsoever.
Also,I've personally never heard of a
child being to young to get his tonsils
taken out especially if there's a
family background with having problems with the tonsils and them having to be taken out. I'm terriblely sorry I have no advice but please
know that your DS and your family
are in my prayers that he receives some relief and starts getting better soon.
Namaste sweety,
Posted on CafeMom Mobile
akrall83
by Silver Member on Feb. 3, 2013 at 6:46 AM
Ask for a rapid step and a throat culture when you see the new ent. What antibiotic was he on?
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gabeybaby07
by Silver Member on Feb. 3, 2013 at 6:52 AM
Quoting akrall83:

Ask for a rapid step and a throat culture when you see the new ent. What antibiotic was he on?


something i have never heard of -CEDFINIR for Oral Suspension.
ds is allergic to pennicillian and ammox - like me. I asked that they give him something i have heard of like zythromyacin.. but they said no
gabeybaby07
by Silver Member on Feb. 3, 2013 at 6:55 AM
thank you for your prayers. I think if i get brushed off again by this doctor - i will go to the news the mayor any one who will listen to me! i kills me that i am doing all i know how.. and just cant make him better

Quoting elzingah36:

Oh honey, my heart is breaking for your DS and your family. My youngest DS(was 4 1/2 at the time,now 13) had his tonsils and adenoids removed the second time he for strep and ear infections. He's
been good since. It has to be
ABSOLUTE HELL to not find anyone
who will listen. You could threaten
with letting your local news station
know that they won't even do a
mouth swab,or you could bluff a little
or start up one anyway...a petition at
change.org(I hope I can post that,sry
if they remove it)where hundreds if
not thousands will sign your petition
to get the doctors to do better
testing at least. Just a few ideas just
in case there's no prevail whatsoever.
Also,I've personally never heard of a
child being to young to get his tonsils
taken out especially if there's a
family background with having problems with the tonsils and them having to be taken out. I'm terriblely sorry I have no advice but please
know that your DS and your family
are in my prayers that he receives some relief and starts getting better soon. Namaste sweety,

akrall83
by Silver Member on Feb. 3, 2013 at 7:01 AM
I don't think it's tonsillitis then. Cefdinir is used to treat tonsillitis as well as bronchitis, pneumonia, and sinusitis. Does your family or your husbands family have any history of autoimmune disorders (lupus, rheumatoid arthritis, etc)?


Quoting gabeybaby07:

Quoting akrall83:

Ask for a rapid step and a throat culture when you see the new ent. What antibiotic was he on?



something i have never heard of -CEDFINIR for Oral Suspension.

ds is allergic to pennicillian and ammox - like me. I asked that they give him something i have heard of like zythromyacin.. but they said no

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gabeybaby07
by Silver Member on Feb. 3, 2013 at 7:08 AM
Quoting akrall83:



my family - my mother has lupus and rheumatiod, and advanced osteyoperosis & athoritis - she just turned 53 but she has been in a power chair/walker for over 6 years

the thing thats leaning me to the tonsilitis is - family history me and dh personally had issues - mine were removed when i was 3 or 4, the white adn red patches in his mouth (the throat the roof cheeks and lip) + the canker sore looking thing. ds just had on on the inside of his lip - big whitish/yellowish and painful blister thing. the chronic intermitten fevers, and the fact that he had a serious issue with his tonsils in the past - and the chronic stuffy/runny nose make me think its his adenoids.

idk im not a doctor - but everything the doctors are doing is not working - so i have been up sitting at the computer for the last 12 hours researching his symptoms - they all keep leading me back to his tonsils
Anonymous
by Anonymous on Feb. 3, 2013 at 7:10 AM
Have they tested for pneumonia or cystic fibrosis?
gabeybaby07
by Silver Member on Feb. 3, 2013 at 7:14 AM
Quoting Anonymous:

Have they tested for pneumonia or cystic fibrosis?


honestly i do not know - through all this they only took his blood once - thats when we were all at the hospital flipping out. It was only 3 small vials. I dont know what they tested him for. they did a chest x ray and it was clear - so i think that rules out pneumonia
edelweiss23
by on Feb. 3, 2013 at 7:25 AM
Where are you located???
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