We attempted to start Max on Deflazort yesterday, but as they say on the internet, it was an "epic fail". :( We tried crushing it and hiding it in yogurt (nope), then I tried hiding the pill in chocolate pudding, and he spit it everywhere. I then tried crushing it and mixing it with chocolate milk, and while he drank some of it, he didn't get it all down. I also tasted the milk, and the bitterness was still quite stong. Actually I can't believe he drank as much as he did.

Any suggestions? I thought about crushing it, mixing it with juice and putting it in a syringe, but I know in order to get him to take that, I'll probably have to wrestle him down and squirt it in against his will. Not exactly the way to start off my day with my little guy.

 

Please let me know what worked for you!!!!

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not sure what age your little guy is but i did all that and in the end i asked my boy if he would try and swallow the tablet and i would stop making his food and drink taste bad,so he stands there in the kitchen after weeks of failure and just takes it,never looked back since,he is 5,

We had the same problem!  We found that crushing the pill in a small spoonful of vanilla ice cream works very well.  One quick swallow and its gone.  Chase follows the ice cream with a quick drink and a mint candy.  Has worked well for the last two years.

 

We also give it to him in the morning.  Ice cream for breakfast isn't so bad...  :)

 

Keep trying different ideas and you'll find what works for him.

I agree with Clare, just give him the whole bitter pill to swallow. I think crushing it up just spreads the bad taste all around.

One thing I found helped was to teach Simon to put about a half a mouthful of juice or whatever in his mouth first and to hold it there, and then to slip the tablets in and just swallow as though he only had a mouthful of liquid. (liquid first means he never really tastes the meds) He was an expert after one day, we were pleasantly surprised. Now he is so used to it that he can swallow huge omega3 capsules and multivitamins that would gag a horse.

I haven't tried this, but I saw a post for it on this site a while ago.  It might help,

http://www.amazon.com/The-Oralflo-Pill-Swallowing-Cup/dp/B000NJJ3C4...

 

My son takes his dissolved in a small amount of water in a syringe and then followed by gummie vitamins.  He doesn't like anything to eat or drink for a while after as he says that he "still has deflazacort breath".

 

Jennifer

My Max started taking Deflazcort in February.  I don't know how he does it, but he just chews it up, swallows, and chases with apple juice.  However, before trying that, my pediatrician recommended teaching him to swallow the pills by letting him practice swallowing M&M's, I never tried it, but it might be worth a shot.

If it is a taste factor, I have no better ideas than those listed above. If it is a pill thing, then first I tried getting Connor to swallow a mini-M&M whole.   It melts, so not so much a choking hazard.  Once he did that well enough, he tried regular size plain M&M's.  Next I promised he could still have a small handful of M&M's to chew if he swallowed the Deflazacort.

 

1.5 years later and he takes it without the promise of M&M's PLUS he takes/swallows the Calcium horse pills.

Thanks so much for all of your suggestions. I really think it's just a taste thing for him. I ended up cutting the half tablet in half again so it would be easy to swallow, then giving him two spoons of strawberry sherbert, with a quarter pill hidden inside each. He ate them like a champ. He did have a bit of a funny expression on his face as if to say, "Wait a minute, something isn't quite right," but I then immediately gave him his Dr. Sears chewy vitamin and he was good to go! I'm beyond thrilled!

I'm so glad I have you guys to offer such great suggestions!

 

Hi Veronica

 

I am Wainaina Muiruri from Nairobi,Kenya.I too would like to start my eight years old son,Kamau,on Deflazacort.How is it going with your boy, Max.He must now be doing his first month on it,isn't it?Like any other parent,i too am a bit apprehensive on the side effects associated with its use,but i guess that comes with walking new territory.Has Max exhibited any drastic behavioral changes similar to those mentioned by the other parents?Hope to read from you soon.Nice weekend. 

Hello Wainaina. Max has been doing well so far. He seems to be throwing a few more tantrums than before, but I wouldn't say there is that noticeable of a behavior difference. It may be our imagination, but he seems to be stronger and faster than before. He is using his hand or arm on his knee much less when he stands from a sitting position, he's walking super fast, and he seems to have more energy in general (does a silly super-fast stomp, etc.) I'm sure it helps that he's on a small dose compared to the dose of an older boy. These decisions are tough ones, but so far I have no regrets.

 

I hope you have a good weekend too! I love being able to communicate with people who are so far away!

wainaina muiruri said:

Hi Veronica

 

I am Wainaina Muiruri from Nairobi,Kenya.I too would like to start my eight years old son,Kamau,on Deflazacort.How is it going with your boy, Max.He must now be doing his first month on it,isn't it?Like any other parent,i too am a bit apprehensive on the side effects associated with its use,but i guess that comes with walking new territory.Has Max exhibited any drastic behavioral changes similar to those mentioned by the other parents?Hope to read from you soon.Nice weekend. 

Hi Veronica

 

Yeah,internet is a beautiful thing;you get to communicate with people on the other side of the globe like they are just in the adjacent office

It is great to hear about your boy,Max.I am now planning on getting my son on Deflazacort as soon as possible.That and a few other products that may be of any help like Q10.

Sometimes i feel so afraid because i am not sure which way to go,that is why this site is so important to a DMD parent.You get to access so much insight on issues like,you know,corticosteroids,research info and stuff.Am checking around to see if we have any chemists stocking Deflazacort over here.Thanks for the info and have a blessed day with little Max.

 

Regards

Wainaina

Before Joshua started Deflazacort, we had him practice swallowing Rice Krispies cereal. Once he had that down pat, the pills, no matter what size, are easy.  He now times himself when taking his morning pills (12) and his fastest time has been 11 seconds.

Hi,Veronica

How is your day?I would be really grateful if you could enlighten me a bit on this;Is Idebenone the same as COQ10?How does it help in DMD?Can it be taken safely with Deflazacort? Thanks and bless.

Wainaina

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