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UPDATE!!! DS sick for almost 5 mos - Frustrated, helpless & at wits end! UPDATE!!

Posted by on Feb. 3, 2013 at 6:08 AM
  • 27 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 6:08 AM
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Replies (1-10):
gabeybaby07
by on Feb. 3, 2013 at 6:08 AM

BUMP!

gabeybaby07
by on Feb. 3, 2013 at 6:09 AM

BUMP!

gabeybaby07
by on Feb. 3, 2013 at 6:22 AM
ANY FEEDBACK/OPINION/THOUGHT/EXPERIENCE/IDEA - WOULD BE GREATLY APPRECIATED! Desperately looking for any one who may have an idea whats going on with my ds? am i on teh right track. I havent slept at all. Just waiting for answers. Not that i could sleep. i want to keep a close ear on ds..in case he gets a coughing fit while hes sleeping
kellynh
by on Feb. 3, 2013 at 8:15 AM

Lol, it's Sunday... I know you are anxious... But give people a chance t wake up. 

I know nothing about tonsillitis.... What I do know is thrush...

His mouth sounds like thrush. They might not pick up on it since its more common in infants. It is infectious. It would also have a growth increase at the allbuteral... (Which my godson did) You can get something homeopathic, or need something from the pedi specifically for thrush. Also... Anything that enters his mouth... Replace and wash, wash, wash!! Toothbrush, make sure the allbuteral inhaler gets washed after every use. Good Luck!!

Quoting gabeybaby07:

ANY FEEDBACK/OPINION/THOUGHT/EXPERIENCE/IDEA - WOULD BE GREATLY APPRECIATED! Desperately looking for any one who may have an idea whats going on with my ds? am i on teh right track. I havent slept at all. Just waiting for answers. Not that i could sleep. i want to keep a close ear on ds..in case he gets a coughing fit while hes sleeping






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MamaBear2cubs
by on Feb. 3, 2013 at 9:08 AM

I have no experience with tonsil or adenoid issues but I sure do hope your little bud can get some releif soon.

karamille
by on Feb. 3, 2013 at 9:49 AM

You need an allergy asthma dr - preferably one who is also a pulminologist.  Your kid has AT LEAST asthma and needs to be on preventative meds - not just albuterol after the fact.  That will help clear a good part of this up so you can see if there's a secondary issues of with tonsils adenoids.  There probably is, but the most important thing is to get that asthma under control.  It is progressive to some extent.  The more asthma attacks you have, the more likely you are to have asthma attacks because it inflames the lungs so much.  

auntangelofsix
by Angel on Feb. 3, 2013 at 10:36 AM
Bump
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TigerofMu
by Sonja on Feb. 3, 2013 at 11:16 AM

I don't have any experience, but it certainly seems like no one is taking the time to follow the history and research what is going on with him.  Make sure you take a write up of his history (so you don't forget anything), just like you've posted here. 

And keep pushing for answers!  If you have to take him to the Mayo Clinic, take him to the Mayo Clinic, or another kind of special place where they dig till they figure out what is wrong.

goddess99
by on Feb. 3, 2013 at 1:46 PM

hmm that's alot, I wonder if there is something at school he's allergic too. I have a friend who worked around chemicals most of her adult life and that has caused her many throat issues. They use chemicals at school to clean that you would not find in a normal household.

Good luck, I hope you find a doctor who can figure it out.

Vertical15
by on Feb. 3, 2013 at 1:54 PM

As for your questions-I don't have experience with tonsil issues with my kids.  I had mine removed as a kid due to getting infections repeatedly throughout the year.  Though I don't have tonsils anymore it is still a place of constant irritation for me.  For example I went to a new Dr and after checking me, she said, your tonsils are swollen and I had to tell her no-I don't have tonsils my throat is always like that.  Weird!

I'm familiar with mouth sores and fevers as my oldest son suffers from PFAPA but that doesn't sound like what your son has.  My first thought was that maybe he is allergic to something maybe at school thats maybe in the air?  I really don't know.  My second thought is that he has more then one issues possibly two or three things bouncing off each other causing all these different symptoms.  I would get another opinion and beg them to listen to his history.  I had to fight for the DRs to listen to me to figure out what my son had.  It took us two years to get him diagnosed.

I'm sorry I'm not more help but I wish you the best and keep us up to date with how he's doing if you can.

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