update…finally doing well question

[Anonymous]

My son Hunter had horrible reflux from the day he was born 7-7-05. we battled with our GI doctor for months about doing Ph Probes and other tests to determine if our son was a candidate for a fundo. He was completely against our son doing the surgery and put tons of resistance against us saying Hunter would outgrow it. during this time Hunter began having seizures that the GI doctor misdiagnosed as sandifers syndrome. we ended up in the hospital because of sickness and had many tests done and found he was indeed having infantile spasms seizures. well, after months and months of the reflux not getting better, we found another GI doctor who told us a fundo would improve Hunters way of life. we got the appointment with the surgeon and did the fundo. Hunter’s reflux is about 97% better now. He has not spit up one time since the surgery…and only occasionally will re-swallow.

Hunter is still having many seizures during the day. They are no longer infantile spasms on an EEG reading, they are just generalized seizures. We are yet to find a medication that will help them, or the reason he is having them. We just started another med and we will see if that works. If this one doesnt work we are going to try the Ketogenic diet.

I am just really glad his reflux has finally improved. I hated we had to resort to surgery, but it really did improve his situation and comfort level.

My question is if anyone knows where I could donate or send some feeding tube supplies that I have left over from our battle with reflux. I have 13 bagged/sealed Top fill Enteral Nutrition Bags for a Embrace Pump, a royal blue like new pump travel backpack, and a Pump stand with wheels. If there is someplace I could send this it would be helpful for someone instead of just throwing it all out.

Thanks and I hope all of you have been hanging in there and things are going better for you too. We can all relate on some level to the heartache reflux can cause!! Take care!!

dawn

[Anonymous]

Dawn,

THANK YOU SO MUCH FOR UPDATING US!!! I’ve thought of you guys so often and have wondered how you’ve been doing! I’m sorry to hear that Hunter is still dealing with seizures, but happy at least that he has some relief from the reflux and that the fundo was a success for him. I will pray that the medication helps him. I often think of Hunter’s story when doctors are diagnosing Sandifer’s without doing an EEG.

I have really wondered if a fundo is in our future, and it’s nice to hear that some babies, like Hunter, have found it to be their answer.

I wish you all the best and hope that you find an answer to control his seizures soon. It’s so thoughtful of you to offer to donate your supplies. I’m sure that they’ll come in useful for someone. If no one responds, then maybe you can copy your post into tube feeding issues?

Keep in touch. HUGS and prayers for Hunter.

s&h’s mum2006-10-27 15:56:3

[Anonymous]

Hi!!

My connection really sucks and i would like to write a longer message but i have already lost it 3 times…. i am sorry to hear about the seizures but praying that they are able to find a med that controls them. So glad to hear that the fundo worked for him!!

Well, if nobody needs any of the supplies you are talking about, then i will PM you in a week or so with another address – it is another forum where there are tons of med supplies offered for those in need. But maybe someone here like amandabarugh or heather or maybe janice are interested… i agree with Lori, maybe post under tubefeedings?

So glad to hear from you…. LOTS OF HUGS

[Author]

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