Posted By Posting
Feb 01, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds
Haven't updated in a while

I havent said much about what has been going on with us for a while, so I thought I would update here. I do check in almost everyday and check on everybody, even if I dont get time to post. I hope everyone is doing well! Brent is already out of his short lived EGID remission. I just want to cry. He has been so very very sick. But we are trying to stay strong, and keep on keepin on

We had a very long GI appt. Friday. We spent half the time on the phone getting Brent into the (interleukin)-5 inhibitors (rezlizumab intravenous infusions)trial so he could get access to the drug, then after all that, we found out he was too young, for some reason the coordinator thought Dr said Brent was 16 , the cutoff age is 5 to 18.

Intravenous mepolizumab. This is the next try, and Brent is old enough. I imagine if we are able to get access to these drugs that Brent will have to have a port placed, which we are very familiar with because of my DH's cancer/chemo

There is another study Dr. Markowitz in South Carolina is doing with rezlizumab, Brent's GI is going to check with him to see if he can get Brent on the (interleukin)-5 inhibitors there. Brent's records/slides were sent in to Cincinnati in December, so I should be hearing from them soon hopefully.They also have the trials there.

I have to say I just love his GI so much.She was probably as heartbroken as I am that he has gotten worse again. She stayed in the room with us so long, even used the phone in there with us in there, googling away at the same time online, calling to get him in this trial. She was going on and on about how sick he had been and how much we had been through over the phone. She called and tried to get the drug through compassion, but they wont release it outside the trials. I have been told many time that Brent was one of her "special" kids that she had gotten attached to, and I can tell that she cares so much for him, as well as the rest of the staff. I feel so lucky. He has seen a lot of doctors,other GI's, and not one of them could even compare. It is a special thing I think when you find a doctor that TRULY cares for your child.

He had his EGID steroids reinstated( he had just trialed coming off) and the dose was doubled from what he was on before. Tommorrow I have to take him in for an abdominal ultrasound because she is worried about his gallbladder,liver,pancreas etc. He has been having pale cream colored shiny stools, which is most likely malabsorbtion again from the active disease, but could be from gallbladder,liver problems,or pancreatic insufficiency..

His ped is worried about his heart because of his respiratory distress symptoms/sweating/poor growth/pallor, so he may be having some cardiac testing soon, but we are waiting to see how he responds to some breathing med changes/increases first. I dont think it is his heart, so I am trying not to worry about that. He does seem to be responding to the increased breathing meds.

I dont even want to talk about how horrendous his reflux has been And he has been white as a sheet and just looks horrible.

He does have esophageal motility disorder that is secondary to severe EE, EE can cause esophageal motility disorder, spasms, when triggered with foods that trigger an eosinophilic reaction. She did confirm that he definately has EC as well( they always called it allergic colitis, and I specifically asked her if it was EC today, and she said yes)It may be in his stomach as well because he was on the steroids and elemental diet only at scope in Dec, so it may have been in remission as well. He has symptoms of all of it being everywhere when flared.

Feb 01, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds
My older kids have been doing alright,but Lauren and Trey continue to have problems with Gerd and their motility, they have ALL been dx with motility disorders' Lauren is struggling with her SIBO, and is on high dose flagyl. Her asthma has been under better control since we started advair thank goodness. Seriously I am trying to keep up with about 30 meds!Christian has been doing really good!
Feb 01, 2009
molson1525
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
You are one tough Mama and you are doing a great job! I love to hear about great GI's. And you are right they are very hard to come by especially in combo with a good staff. I am glad your daughter's asthma is getting better too. My son is taking Advair too for his asthma and it has been a wonder drug in terms of his asthma. We will keep Brent in our thoughts and prayers as always. I hope he gets into one of the trials soon so you can try the new drug. There is nothing worse then watching your child in pain. Hang in there mama and let us know if you hear from Cincinnatti soon.
Feb 02, 2009
helen lai
Mom to Matthew, 01/16/08, GERD baby, has been on Zantac since 2 mos. Aidan, his twin brother, no GERD. Max-ed out on Zantac at 1ml-3 times/day, and switched to Prevacid 15mg split tab 08/20/08. Switched again to 20mg Prilosec 09/18/08 due to Prevacid's restlessness/headache side effects. Reflux was out of control again and had to switch to 10mg Nexium 02/11/09. Good result so far.
Dear Jessica. Please hang in there. I just wanted to say how much I admire your incredible strength and I send huge hugs your way. May God bless you and your children. I pray that Brent would get in to the trial soon and will go through this tough time and that Lauren, Trey, and Christian will continue to do better and better each day. Please take good care of yourself and update us when you can.
Feb 02, 2009
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
You know how much I feel for you all. I pray better days are ahead. Ellen
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