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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 (41-50):
carterscutie85
by Queen Bee on Feb. 3, 2013 at 7:46 AM
1 mom liked this

I hope you figure it out.

epoh
by Ruby Member on Feb. 3, 2013 at 7:48 AM
I was also thinking some sort of auto immune disease, given the length of time that has passed and the chronic fevers.

Quoting Anonymous:

 First : Stop googling, it will drive you nuts.

If he has sores in his mouth after all this time, he needs to be referred to a Rheumatologist given that you have a family history.

The constant stuffy nose: it may be sinusitis. Press on his face lightly with your finger tips around his eye socket and nasal bones. If he flinches, he may have sinusitis. If a person has a sinus infection, the mucus drips at the back of their throat leading to a persistent cough. In turn the mucus builds in the stomach causing nausea. If he isn't eating as a result of the nausea, he will be exhausted in very little time, given that he is only a small child, it will happen a lot faster than in an adult.

It may have started off as a simple cold that has created a domino effect. His immune system became comprimised with the prolonged infection which in turn opened the door to other infections. It may also have triggered an autoimmune disease such as Lupus.



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iamcafemom83
by Ruby Member on Feb. 3, 2013 at 7:50 AM
My sister and I both had our tonsils removed around that age because of back to back infections. 5 months worth of being sick should be plenty reason for them to remove them.
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Anonymous
by Anonymous on Feb. 3, 2013 at 7:51 AM
Ok my ds has had to have a T&A when he was two.

They took his addnoids because he had a runny nose from two months till they took them out no matter what meds he was on.


The sores in his mouth actually seem like hand foot mouth disease as my ds had got that before. Try bleaching all his toys and keeping him hom from school also notify the school because another child may have it.

There is no actual treatment for it but my ped gave a mix of bendyral, Tylenol, and something else that would help with the pain and swelling.


I would take him to a children's hospital. The doctors there some to know more then regular peds.
Anonymous
by Anonymous on Feb. 3, 2013 at 7:52 AM
Fever doesn't always mean infection.

Quoting wishbearmom:

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.

gabeybaby07
by Silver Member on Feb. 3, 2013 at 7:54 AM
Quoting Anonymous:

 First : Stop googling, it will drive you nuts.

If he has sores in his mouth after all this time, he needs to be referred to a Rheumatologist given that you have a family history.The constant stuffy nose: it may be sinusitis. Press on his face lightly with your finger tips around his eye socket and nasal bones. If he flinches, he may have sinusitis. If a person has a sinus infection, the mucus drips at the back of their throat leading to a persistent cough. In turn the mucus builds in the stomach causing nausea. If he isn't eating as a result of the nausea, he will be exhausted in very little time, given that he is only a small child, it will happen a lot faster than in an adult.

It may have started off as a simple cold that has created a domino effect. His immune system became comprimised with the prolonged infection which in turn opened the door to other infections. It may also have triggered an autoimmune disease such as Lupus.



his nose and face are not tender. doesnt hurt when i push around the sinus area. He finished teh antibiotic for the hospitals diagnosis of sinusitis a lil over 2 weeks ago. So i would think if he did have it -the antibiotics would have cleared it - but there has been no change in his stuffy/runny nose in the slightest - still just as runny and stuffy as it was before we started the antibiotic. Maybe his immune system was compromised. That what i told the doctors when on top of all this - the stomach bug went through our house - and i DEMANDED antibiotic/something to help his immune system fight whatever he has. They refused. as far as the lupus, i dont know but will specify it at the dr today. My mother has been pressing me to get tested because i get a chest and face rash in the sun. Im not going to stop searching for an answer on my own, since it seems like i am the only one in all the doctors that he has seen that is trying to figure out what the hell hes sick with. a cold that runs a few weeks is not unfamiliar to me. and coughs usually linger with me maye 3-4 weeks after im back to 100%.. but this is going on 5 months now - with a multitude of medications and no results or steps towards him getting better at all
Anonymous
by Anonymous on Feb. 3, 2013 at 7:55 AM
You also might want to check your house for mold. I was sick all the time in high school. We found mold. I moved out and rarely get sick now. Idk about the sores. Make sure they test for strep.
gabeybaby07
by Silver Member on Feb. 3, 2013 at 8:00 AM
Quoting Anonymous:

have you tried actually taking him to an ear nose and throat specialist, rather than just going on the pedi's word? 



paragraph 6 in the origional post - and a new ent appt today. he has also seen 4 different pedi's - not just going off of one person
gabeybaby07
by Silver Member on Feb. 3, 2013 at 8:02 AM
Quoting Anonymous:



no redness or swelling, no tenderness in the ears either - i just cleaned them last night with no problems. I havent checked the glands under the lobes to see if they were swollen. I know the ones in his neck are though. right under the jaw - next to the wind pipe on either side.
ladyraven16
by Silver Member on Feb. 3, 2013 at 8:06 AM
I has tonsillitis almost constantly from age 9 to 13.5 when they removed them in an emergency surgery. Mine were so bad ny then that I had holes in my tonsils and foodstuck in them. They were permanently sswollen to touching. Ugh it was miserable. I had some of your sons sypmtoms but no sores except on the tonsils.

My oldest son got his out when he was 3. He had sleep apnea though.

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