Re: Re: Fwd: Frequent Spitting up, despite Nissen

[Guest guest]

marian victoria when you describe her seems like em wehn i was that age oh

well as you say that is the funny world of charge amy ive had all this and

more ive actualy got a j stoma which works hugs ellen

>

> Hello Amy,

>

> had to have surgery, which took about 4 hours. This was a have

> to surgery because eventually 's stomach would have migrated on up

> further and would have pushed against her lungs and heart causing her to be

> in respitory distress, and

> caused her heart to work so much harder. They had to pull her stomach and

> esophagus back down where they were supposed to be and they repaired the

> hernia. It took alittle longer than they initially thought because her

> stomach and espohagus were growing together inside the chest cavity. They

> redid her nissen/fundoplication and had her on Zantac and a constant drip,

> no boluses of any kind for more than 2 months. She was not allowed to get

> constipated and strain, so we had to make sure she had some fiber in her

> diet. They had her on Soy formula and finally switched her over to PediaSure

> at 16 months . She now takes Prevacid for acid reflux.

>

> has some complex underlying neurogical conditions that have

> greatly complicated her situation. She has cyclical Trigeminal Neuralgia and

> we also think she actually has cyclical vomiting along with it . She takes

> 2 different anticonvulsant drugs for pain. She takes Cyproheptadine, an

> antihistamine for vomiting, it is also good for drying up secretions in the

> sinus passages and increases appetite. She also takes Phenergen

> Suppositories at the beginning of the cycle to help stop the cycle of

> vomiting.

>

> Unfortunately, has another hernia, because of the pain and

> cyclical vomiting. There is no surgery for her second hernia, She now has a

> G-J-Tube, in which she gets all of her nutrition. She is now gaining weight,

> but still suffers from her neuralgia and vomiting. We are going back to

> neurology to see what else we can do. Sometimes, these kiddos, can be a

> baffling mystery, so complex--but that is the way it usually works with

> CHARGE!

>

> There are other reasons why kids feel the need to vomit, I know Ben's

> problems may not be the same as 's, so I would definitely call the

> Aerodigestive clinic and tell them your concerns and be very specific about

> his symptoms, write down every little detail. Call Maureen and tell them

> what YOU think. Sometimes its the parent who figures it out, before the

> Dr.s do!

>

> Anyway I sure hope I didn't cause your brain to " melt down " because I

> think mine just sure did! Please keep us posted and let us know what the

> DR.s say. Please take care of youself and give Ben a hug for us.

>

> n--mom to 3Yrs.old (CHARGE) and her 3 siblings and wife to

> Lester

>

>

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