Hello all, what a week.
On Thursday Caitlyn started walking around putting her finger at her ear.(Caitlyn is 2 1/2 & has very limited verbal skills) She was grouchy and had a clear runny nose (courtesy of big sis!) After the events of this year and a full unhealthy obsession with all things "ear" (In Dec Dr Pat Mutton had said that I was to be vigilant for fluid as this would be Caitlyn's greatest enemy to hearing) We went to the GP and of course couldnt get in, went to the med centre and the Dr said her R ear was really red and the left becoming red. She started her on antibiotic - Amoxil and said to give her 4mls for the first 2 doses and then 3 mls there after to give it a good start. I did exactly that. I gave the first dose at 3.30pm and within about 2 hrs Caitlyn started to get noticably busier & busier ( I just thought she may be feeling better) She went to bed later than normal around 7pm as she was running around and wound up, after it must have been 20 drinks, wees etc by 9.45pm she was still awake in her bed dancing & rolling & jumping. I gave her the bedtime dose as I thought she will bound to fall asleep just as I go to get it at 10.30 Within half an hour she was off the walls, Jumping rolling, trembling, biting her pillow and banging her head, she stripped her bed and was telling us she had to "go school" and was grabbing her things and trying to stuff them in her nappy bag. It was terrifying. I rang the after hours Dr - wh just laughed at us and said "give her more panadol" I did. She was unable to stay still even though I was patting her back and I could feeel her muscles twitching below my hands, she was constantly flicking her feet and hands and pulling her hair. If we took our hands off her she jumped up and ran around her bed often hurting herself. It was terrifying. I ended up ringing Kids Hospital @ westmead and they said that she was probably having a reaction to the amoxil and to wait it out as it was 2AM by this time & take her to the GP in the am. She eventually feel asleep. Back to the GP in the am and she was still VERY hyperactive- Dr said ears were redder & she sent her up the hospital and after HOURS the Paed Reg said that it could be a reaction to the amoxil and that her R ear was now bulging slightly and L ear very red but he thought it was probably viral so the amoxil would not help. To take her home and to watch her, we may see pus come out of her r ear but to keep her on panadol but not start Keflex unless she gets fever spikes over 38 despite panadol.
It has been 2 days and she has settled a bit but we have seen a HUGE change in her personality and aggression. She is biting the cushions on the lounge, she is bearing her teeth and being super aggressive and is having outbursts of supper activity where she runs around like a lunatic, often running into things or leaping off the couch and having bursts of energy where she just cant sit still & is really defiant- completely out of character and behaviour to her normal self. I am really scared.
If it is a drug reaction then no more amoxil will mean that her ears will be poorly treated (Keflex not as specific for OM ) and it could be not the culprit.
Does any one have any similar experience after amoxil or similar hyperactive behaviour as a symptom of ear ache? Any help gratefully accepted as I am going out of my mind.
I'm sorry I do not have experience with this :-( did you take her to the hospital? What did they say? If you haven't I would definately call the nurse phone number at your office to find out what they say. Sorry I can't be of more help - but I am saying a prayer for you right now - let us know an update.
If it truly is an allergy to amoxil you might question the docs about having ear tubes put in. Then in case of an ear infection the doctor could prescribe a topical antibiotic that you would simply drip into your child's ear instead of amoxil. I know the topical is not amoxil- but of course I'm not sure how closely it is related. We had to do tubes with my 2 youngest because an ear infection can crash their metabolic system and the topical treatment works so much faster.
My 18 yo son had the exact reaction you described to almost all cold medications when he was little, especially benadryl and triaminic. It was awful!
I'm sooooo sorry! I know exactly what you are talking about with the behavior change. My son does not have that reaction with Amoxil, but he does have horrible hyper activity, violence and aggression, bright red ears, etc. with a lot of foods, glycerin, and red 40 dye. It's horrible!!
My other son just got over a week long rash from being on Amoxil! It was horrible, too!
Hang in there and lots of prayers for you and your little one!
Wife to Chuck
Mother to Aaron (6) and Adam (3)
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle." (Albert Einstein)
Caitlyn sent by ambulance tonight 2 Sydney kids hosp.(3hrs from home)
the Drs think she Has a strep infection that has got in her brain from untreated ear infection. She is stil having bouts off inconsolable screaming & aggression- Dr say it maybe seizures (as a result of reaction to amoxil) without the movement. It is now 2 am tests /MRI/EEG will start in the am.
Thank u all so much for your prayers. Caitlyn is booked for general anaesthetic tomorrow am to have a MRI & lumbar puncture. Her brain is still very agitated so they sedated her and she had a sleep for almost 3 hrs this afternoon. The pain still comes on huge waves and is just terrible. The Dr seems to think it is something irritating the pain receptor in her brain and she feels instant intense pain & screams ( this am it went for 20 mins) and it then it just stops and she falls asleep after. Hopefully the MRI & tests will help tell him more @ the moment all they can give her is morphine and sedate her. Please pray for her safety in the anaesthetic as she has central sleep aponea and will need to be in intensive care to keep her breathing until all the anaesthetic is worn away. We are so very far away from home and I really appreciate your prayers helping us get through this week
the infection in the brain, seizures, pain & the lymph & the bowel twisting are all symptoms that come after something else so they have to find & treat that first. They have moved us to a high dependency neurology ward on saturday & she has had a good day today the nurses got her a Barbie doll & an icecream birthday cake &we had balloons etc &we got quite a few smiles :)
I have not posted for a few days as Caitlyn's bowel twisted & her brain became swollen & irritated. The drs decided to quiet Caitlyn's brain right down after 2 days of hallucinations, fits & uncontrolled pain. She was unable to find her words she would look at arm and not say " my... my...that' and was falling down & rocking & banging her head. They padded her whole cot bars as the shaking was so bad. she has had continuous EEG brain monitoring on and they have found no sign of epilepsy- Dr was going to start iodine to surpress her thyroid on Sunday am so they could inject some radiation as they were suspecting Caitlyn had a tumor on her kidney called a neuroblastoma. It has been a few dark days in the pit but God has very long arms.
They started to let her wake up today and GUESS WHO OPENED HER EYES & ASKED FOR & ATE HER BREAKFAST!! She has had no pain bursts today ( her tummy is still a bit tender & she has a bit of a headache but that is expected) and she has talked and laughed and listened to stories all day. She has now settled to a peaceful sleep ( without meds) after a hot milk bottle and a cuddle in my arms!
Love u all & we really appreciate the prAyers that you have spoken for our little bub. I will update again soon.
just leaving the San hospital aftr ENT consult 4 Caitlyn's ears & Dr thinks it might take up to 12 months for hearing to recover fully from encephalitis but really happy with her. We are on gatepass from The westmead kids hosp & go back tomorrow am: if seizure free & good on meds neurologist may give us the ok to go back home to Bathurst :)
What a LONG three weeks you have had. I am so glad it sounds like things are improving for Caitlyn. Just prayed that Caitlyn might amaze her doctors with a quick and complete recovery. Also prayed for patience and peace for the family during Caitlyn's recovery.
wife to a great guy (12 years)
homeschooling mom of 4 boys
we have just seen the neurologist & he does want to keep Caitlyn's brain stable & quiet & continue the meds then slowly wean her and see. He feels her bowel may take 3 or more weeks to recover & for her appetite to return. So after a stop off in pharmacy we will be heading out of kids hospital TODAY after nearly 4 wks & we are ALL heading HOME!!! Thank u so much for thinking of us & all of your prayers, love & encouragement.