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I do not even know where to start, I feel like I would be writting a novel if I did.  Short story is after a long summer, we finally found a pediatric GI (again, Josef has a hx of GI problems) that listened to us. 

Since August 26th, the day Josef's tonsils came out, his stomach pains grew increasingly worse until it landed us (for a 2nd time) in the ER.  They did a CT scan and lots of blood work.  CT scan was clear, WBCs were 17+  This is when we were able to get the emergency appt with a pediatric GI.

The pediatric GI is suspecting Crohn's and it makes *total* sense now, it explains *everything* we have been going thru with Josef.

When we were at the ER, it was a Sunday, Josef weighed 52lbs.  His pain was *severe* and when he was weighed at the GI's the following Tuesday (48hrs later) he was down to 48lbs.  This is the same that our home scale stated as well.  We have been keeping a close eye on his weight since he wasn't eating after his tonsillectomy.

The GI placed him on Bentyl but doesn't want to do anything else until the blood work comes back.  Josef started eating again about two days ago but now his stomach is starting to hurt again (although he will not tell you until the pain is so severe he can not hide it) and his BM's are becoming much looser.  It was almost consitpated to diarrhea within hours over the weekend, now this.  He is eating more, which is needed, but it seems the more he eats, the worse he starts to feel.

Josef's temp was normal, first time in a while, but today before he layed down to rest, it is starting to spike back up. 

Our GI is 2.5hrs away, we have no family here and I do not know what to do.  Do we just have to play the waiting game?  Thank you for *any* information, comments, anything you can offer, everything is greatly appreciated.

 Reply posted for Mom2Josef.

Thank you everyone whom has replied, it means a lot to me to know people are reading and responding. I don't feel so alone any longer.

When we hear back from the blood work, it was done a week ago, so it should start coming back soon, I will mention the LDN.

Josef has SPD (Sensory Processing Disorder) which makes things even more interesting when it comes to foods.  Nothing soup-like can even come near him.  Unless it is home-made baked potato soup with lots of bacon in it :-P

I will look into the other probiotic mentioned, I had never heard of it! We spent many years doing bio-medical treatment, so it surpises me we had never heard of this.  Bio-med works for so many people and yet we did everything finacially we could, and we are still where we are today.

Even since starting to eat again, Josef can not keep on any weight.  I weigh him twice a day (yes, paranoid Mommy here) and the weight he did gain thru the day is gone by the next morning.  Maybe his Grandma's can pack some weight on him this weekend as they have not seen him in quite a while, and you know Grandma's, lol.

Thank you again!!!

 Reply posted for Mom2Josef.

I have used scd for four years with great success but I lost weight quite dramatically  at the beginning and almost stopped the diet because I was worried about the weight loss. The diet is high fat and once I realised that I needed to increase good fats  ( adding butter to everything and making French Cream)  and could eat them my weight stabilised.

For the first two years probiotics (except scd yoghurt) made me much worse again but now Mutaflor helps. I think allergies are much more likely when the gut is damaged but with time the diet allows the gut to heal and reduces the bad bacteria and then probiotics can be more effective and less likely to increase symptoms. At first I ate lots of thick soups and broths with well cook meat or chicken left in them. Eggs can be mixed in as well so you hardly know they are there.

I know weight loss is much more worrying with a child  and stabilising symptoms with medication is important if necssary but do read Life without Bread if you haven't already. Diet can make so much difference.

Warmest  wishes

 Reply posted for Mom2Josef.

At diagnosis, we really appreciated the book by Tracy Dallessandro "What to eat with IBD".  It was a good start for us.  Here's the link to it so you can see the cover.  Ironically it was the pediatric hospital's lending library and I just picked it up out of desperation. 

http://search.barnesandnoble.com/What-To-Eat-With-Ibd/Tracie-M-Dalessandro/e/9780981496504

If you can get a copy at the library or something, it would at least give you another diet perspective while you are waiting for official diagnosis.

Claire's Mom

 Reply posted for alanschachter.

I know all about SCD, we have done it in the past for suspected yeast.  One week in, and he lost 5lbs.  Needless to say, I am even more nervous to try it again.  Also Josef is not eating any meat and he refuses to eat eggs as well.  Both of these things are so needed on SCD and would be almost impossible to implement without.

I have done some research on LDN and from what I can gather, I definatly want to try LDN with Josef.

Probiotics and Josef do not mix, we have never had a positive experince with them.  Either increased allergy symptoms or he spikes a fever when we use them.

I just feel like I am stuck between a rock and a hard place.

Thank you for your kind thoughts and comments.