Hi

Ben easily get's a high tempreture and he wears less clothes all year round than his brother and sister and we give him paracetamol if he get's too hot.  Sorry I do not know about the antibiotics, Ben could not use them long term because his stomach was too sensitive.  All winter each year he uses for about 4-5 months clarithromycin to protect his chest from infection because he can tolerate this.

What I have found is that I have had to keep trying to find doctors who are prepared to be pro-active and listen to the expert advise of Dr Leone and other parents I have got to know on this website.  Often this has meant that I have had to ask for second opinions or even make complaints to the hospital in writing, this has not made me popular but what I mean is don't be afraid to question your doctors.

On Ben's website there is a section on equipment with pictures of all the equipment Ben has used as he has grown bigger.  It might give you some ideas.  It's www.allaboutben.co.uk  just click on the equipment section on the left hand side.

Take Care

Sally & Ben x

hi bihter, Lillianas on the amoxicillin but only 2 1/2 cc twice a day.  how much does sarp weigh? lilliana is 27 lbs and atleast 36 inches long. his dose seems kind high. since he has started the amoxicillin has he had runny poop? As for the bathing problem, lillianas insurance paid for a bath chair. i would have to guess that turkey is hot right. this summer i bathed lillana a lot in a blow up baby pool outside on the deck while her sister played next to us, you could bath both your boys outside and i will also take a bath with lilliana in our tub, ive also got a blow up baby tub  and let her legs hang out and put her butt in the tub. i attached a picture of the tub but the babys in it. you can either do a search for a pediatric bath chair or inflatable tub. the bath chair will be more expensive so if you can get away with just an inflatable pool or tub for now it will be cheaper.

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Hi Tiffany,

I think I will stop listening infection doctor and start to use Canavan Coctail. However pls let me know the dose. And pls let me know how recently you check the liver functions. Nowadays, for a month Sarp's liver functions are very high. But after having them normal I wil use Amoxicilin in a routine.

Now Sarp is 12 kg and 78 cm lenght. So Tiffany would you tell me which maker (antibiotic) you uare using and let me know your your dose. Our antibiotic is consisting of Amoxcicilin and clovunat together in it. I think the content of yours is only amoxcicilin. So would you tell me the maker of yours so that I can choose a product in Turkey same as it is and give the proper dose according to his weight consulting with his doctor.

Thank you for the picture. I was looking for an inflatable pool in Turkey but I am afraid I could not find the one with water evacuation hole. So when I go to Germany in late October I will have it there.

Again thanks for it.

Hugs to to all and ofcourse Lilliana

lilliana uses amoxicillin made by teva  she gets 100 mg twice a day. i think sarp is the same weigh as lilliana.you might be able to find a tub or bath chair online. she gets blood work done every month and its sent to the doctors in ny and nj.  is sarp on lithuim? how long has he been on amoxicillin? does he have runny poop?lillianas nurse  thinks her poop is runny because of the amoxicillin.

Hi Everyone,

We have been using Amoxicillin with Declan since he was 5.1/2 months old.  He will trun 4 yrs on October 7th and except for a brief periods at about 13 months and again at 40 months when he was treated for infections (chest and ear) he has been on it every day.  He also uses the Teva brand Amoxiciilin suspension (250mg/5ML) which is common here in the States.  His dosage has been adjusted as his height and weight and tolerance for it has grown, so we are now at 6ML twice per day.

Declan also takes Calcium Acetate and took Diamox for 3 yrs but we discontinued the Diamox in Decemeber 09 as we had many issues with a drop in his Bicarbonate level (electrolytes in the blood levels).

We do not have runny poop issues. We tend toward constipation issues.  However it can be common with antibiotic use.  We give Declan Probiotics in his Milk or Cereal to help with his digestion/counter act the action of the amoxicillin killing all the good flora in the digestive tract.

We also have a bath seat "Rifton" brand for bathing Declan. It has lateral head support, belting and allows him to "sit" reclined in the seat within our bath tub.  Here is a link.  Let me know if I can help in any way.  It will show you the item.  I am not sure if you can find it cheaper or closer to you.  I think this company might ship Internationally but you would be responsible for all custom duties, texes etc.  They are very nice and I can telephone them for you if you have questions.

http://www.adaptivemall.com/smriblwabase.html

Where in Turkey do you live.  Do you have any family in the states that can help with transporting or shipping items?

I hope that this helps.

Hugs.

Lara and Declan

Hi Everybody,

I could not write because Sarp has been having pneumonia again. I think this is the 13th pneumonia. We had 4 nights in hospital Emergency Center without having sleep since there was no bed in the infection center. It was really terrible. We decided to bring him home and give antibiotics through intravenous now. His home nurse is very skillful at vascular access thankfully. We are getting better.

As for the daily antibiotic use, I decided to use it after he gets better. He sometimes had a runny poop at the beginning of the treatment but later on he gets better when I support his feeding with potato, yogurt, rice and etc...

We use a powder type probiotic which helps to put the missing probiotics after the antibiotic finishes. But if you use the antibiotic everyday do you use this probiotic everyday with antibiotic? Is that right?Thanks to everyone,

Hugs to all,

Hi,

Eventually we started to use daily antibiotic for Sarp. Sarp is 13 kg now. Fat boy :))))

He is on Amoxicilin everyday (350 mg in total/day). We do not have digestion problems. Actually infection specialist is opposing this ideo to give him antibiotics but I insisted on using it. It seems that Amoxicilin worked out and Sarp has not been hospitalized for a long time. Knock on the wood :)

Those who have been using antibiotics for a long time;

Would you tell me if we should give a break to using antibiotics in summer? Shall we stop using it in summer?

And shall we use probiotics with the antibiotics?

Thank you to all,

rgds,

i think you should keep sarp on the amoxicillin all year long. its not just for "infection" it does something else with their brain. lilliana has been on it for two years nonstop