Re: 's update

[Guest guest]

Debbie:

I'm sorry to hear that 's Crohn's has worsened and is now causing

further problems for him. The poor kid has been through so much already,

and I suppport you and your husband's thoughts on not doing the PH-prbe.

Why put any child through an invasive procedure if there really won't be a

change in current care? It's also great news that the liver biopsy came

back with no further changes. Thank you for the update, and please keep us

informed.

--mom to ,7, dysgammaglobulinemia; luekemia-in remission; etc

's update

>

>

> Well, we've got the biopsy results back. Evidently the Crohn's Disease has

> spread more and causing malabsorption problems in . Because of the

> inflammation is not able to absorb the nutrients in the Pediasure

> formula. The GI has put him on Neocate One Plus, which is considered a

form

> of dietary treatment for Crohn's Disease. We're still on our maintenance

> steroid dose until he talks to Immunology to see how far they think he can

> push the steroids before compromising his immune system. I'm happy that

his

> esophagus is still in fairly good shape and we won't have to think about

the

> fundoplication for a while. We may still go ahead with the ph-probe, but

it

> really won't change 's treatment so I'm inclined to pass on that

test.

> I was very disappointed to hear that the Crohn's Disease has worsened. If

> the Neocate doesn't work, we may have to consider a short course of TPN to

> bring his weight back up. His liver biopsy was unchanged from last year,

> which is also good news. There is still mild inflammation, but GI feels

that

> it's more a manifestation of the Crohn's Disease. Well, it's a nice, warm

> day, and I'm gonna take my little boy for a walk in the sunshine.

>

> Debbie, Mom to , SCID post BMT, GERD w/hiatal hernia, IBD, CP from

> hypoxic brain injury, CVI, developmental delays, non-verbal, G-tube fed,

> epilepsy

>

>

>

>

>

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> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

>